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MedicalDiscriminationAgainstChildrenwithDisabilities

U.S. COMMISSION ON CIVIL RIGHTSThe U.S. Commission on Civil Rights is an independent, bipartisan agency firstestablished by Congress in 1957 and reestablished in 1983. It is directed to:• Investigate complaints alleging that citizens are being deprived of their rightto vote by reason of their race, color, religion, sex, age, handicap, or nationalorigin, or by reason of fraudulent practices;• Study and collect information concerning legal developments constitutingdiscrimination or a denial of equal protection of the laws under the Constitutionbecause of race, color, religion, sex, age, handicap* or national origin, or in theadministration of justice;• Appraise Federal laws and policies with respect to discrimination or denial ofequal protection of the laws because of race, color, religion, sex, age, handicap,or national origin, or in the administration of justice;• Serve as a national clearinghouse for information in respect to discriminationor denial of equal protection of the laws because of race, color, religion, sex, age,handicap, or national origin;• Submit reports, findings, and recommendations to the President andCongress.MEMBERS OF THE COMMISSIONWilliam B. Allen, ChairmanMurray Friedman, Vice ChairmanMary Frances BerryEsther G. BuckleySherwin T.S. ChanRobert A. DestroFrancis S. GuessBlandina Cardenas RamirezMelvin L. Jenkins, Acting Staff Director

idments • Section 504 • Medical Discrimination • State Law • Cild Protective Services Agencies • White House • Supremeection • Protection & Advocacy System • Baby Doe • Pare:treatment • Doctors • Child Abuse Amendments • Section 1rimination • State Law • Congress • HHS • Child Protective Se:trite House • Supreme Court • Equal Protection • Protectioem • Baby Doe • Parents • Treatment/Nontreatment • Docto:ndments • Section 504 • Medical Discrimination • State Law •ild Protective Services Agencies • White House • Supremeection • Protection & Advocacy System • Baby Doe • Parentsreatment • Doctors • Child Abuse Amendments • Section 5rimination • State Law • Congress • HHS • Child Protective Servirite House • Supreme Court • Equal Protection • Protection &;m • Baby Doe • Parents • Treatment/Nontreatment • Doctors • Cndments • Section 504 • Medical Discrimination • State Law • Coild Protective Services Agencies • White House • Supreme Coection • Protection & Advocacy System • Baby Doe • Parentsreatment • Doctors • Child Abuse Amendments • Section 5rimination • State Law • Congress • HHS • Child Protective Serite House • Supreme Court • Equal Protection • Protectioan • Baby Doe • Parents • Treatment/Nontreatment • Doctoidments • Section 504 • Medical Discrimination • State Law •Id Protective Services Agencies • White House • Supremeaction • Protection & Advocacy System • Baby Doe • Parenreatment • Doctors • Child Abuse Amendments • Sectionimination • State Law • Congress • HHS • Child Protective Site House • Supreme Court • Equal Protection • Protectiom • Baby Doe • Parents • Treatment/Nontreatment • Doctorsidments • Section 504 • Medical Discrimination • State Law • CoId Protective Services Agencies • White House • Supreme Coction • Protection & Advocacy System • Baby Doe • Parentsreatment • Doctors • Child Abuse Amendments • Section 5imination • State Law • Congress • HHS • Child Protective Servic ^^A Report of theU.S. Commissionon Civil RightsSeptember 1989SEP2 6 W69ite House • Supreme Court • Equal Protection • Protection &^m Disabilitiesm • Baby Doe • Parents • Treatment/Nontreatment • Doctorsidments • Section 504 • Medical Discrimination • State Law • Co:Id Protective Services Agencies • White House • Supreme Courtction • Protection & Advocacy System • Baby Doe • Parents • Tire•eatment • Doctors • Child Abuse Amendments • Section 504 •imination • State Law • Congress • HHS • Child Protective Servicesite House • Supreme Court • Equal Protection • Protection &m • Baby Doe • Parents • Treatment/Nontreatment • Doctors • Cdments • Section 504 • Medical Discrimination • State Law • CoId Protective Services Agencies • White House • Supreme Coction • Protection & Advocacy System • Baby Doe • Parents •eatment • Doctors • Child Abuse Amendments • Section 5imination • State Law • Congress • HHS • Child Protective Serviite House • Supreme Court • Equal Protection • Protectionn • Baby Doe • Parents • Treatment/Nontreatment • DoctorsMedicalDiscriminationAgainstChildrenwithc^A

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LETTER OF TRANSMITTALThe PresidentThe President of the SenateThe Speaker of the House of RepresentativesSirs:The United States Commission on Civil Rights transmits this report to youpursuant to Public Law 98-183.Medical Discrimination Against Children with Disabilities examines the nature andextent of the practice of withholding medical treatment or nourishment frominfants boln.with disabilities and makes recommendations to remedy deficiencies inexisting law. The report is based on two Commission hearings and substantial staffresearch aided by experts and consultants.Available evidence suggests that decisions to withhold medically indicatedtreatment from infants born with disabilities continue to occur despite beingprohibitedbyjhe Child Abuse Amendments of 1984. Discussed in the report is theeffect of tn&ielationship between parents and physicians on decisions to withholdmedically indicated treatment, a major issue in the Supreme Court's invalidation ofInfant Doe regulations in Bowen v. American Hospital Association. The report alsoexamines the role of quality of life assessments and economic considerations inmedical nontreatment decisions, whether the Child Abuse Amendments of 1984have been properly implemented and enforced, enforcement of section 504 of theRehabilitation Act of 1973 and efforts of the Department of Health and HumanServices in that, regard, whether child protective services agencies and hospitalinfant care review committees are fully complying with the Child AbuseAmendments, and whether medical discrimination against children with disabilitiesis part of a larger problem involving discrimination in the provision of medicaltreatment to persons with disabilities, of whatever age.The many recommendations in the report include a recommendation that theExecutive branch give careful consideration to resuming investigation of allegationsof medical nontreatment based on handicap, and that it initiate enforcement ofsection 504 of the Rehabilitation Act where allegations are found to be justified. Itis our hope that the extensive information and analysis contained in the report willbe of assistance to you in the formulation of public policy.William B. Allen, ChairmanMurray Friedman, Vice ChairmanMary Frances BerryEsther G. BuckleySherwin T.S. ChanRobert A. DestroFrancis S. GuessBlandina C. Ramirezin

ACKNOWLEDGMENTSThe Commission is indebted to the following members of its staff who participatedin the preparation of the report.Overall supervisory responsibility for the report rested with William J. Howard,General Counsel, and Brian D. Miller, Deputy General Counsel. Preparation of thesubstantive content of the report was carried out primarily by Commission attorneyThomas J. Balch and Assistant General Counsel Jeffrey P. O'Connell. Alsocontributing to the report were Commission attorneys Vincent A. Mulloy, SusanT. Muskett, and Joseph J. Piccione.The Commission also acknowledges with thanks the logistical and administrativesupport provided by Joan Connell, Maria Sims, Terrie Kerrigan, and DorothyBenjamin, members of the support staff. In addition, Peter S. Fruin, Ann H.Coulter, and Clarence T. Pollard II, law clerks in the Office of the GeneralCounsel during the summer of 1988, provided invaluable help.The Commission is grateful to Deborah Lawrence, confidential assistant toCommissioner Destro, for her work on the second of the two hearings.Serving as an expert to the Commission in the preparation of the report wasThomas J. Nerney. The Commission's consultants were Gunnar Dybwad, JamesW. Ellis, Frank J. Laski, Marguerite Mikol, C. Reed Martin, Charles E. Rice, H.Rutherford Turnbull III, Colleen Wieck, and Robert R. Williams.

CONTENTSExecutive Summary 11. Fundamental Rights: An Introduction to Medical Discrimination AgainstPeople with Disabilities 18Oklahoma Case 19Bloomington, Indiana, Infant Doe Case 20Commission Approach 21A Legacy of Discrimination ... , 232. The Physician-Parent Relationship and Treatment/Nontreatment Decision -making 26Factors that Impair Independence in Parental Decisionmaking 26Influence of Physicians 27Misinformation Among Medical Personnel 30Weight of Parental Decisions 30Conclusion 313. The Role of Quality of Life Assessments in Denial of Medical Treatment. 32Impairment or Societal Attitudes? : 32Positive Quality of Life for Persons with Disabilities 34Quality of Life and Down Syndrome 36Inaccurate Prognoses 39The Limitations of Medical Experience 43Families, Society, and Persons with Disabilities 45Propriety of Quality of Life Judgments 46Conclusion 474. The Role of Economic Considerations in Denials of Medical Treatment 48Costs of Residential Placement 51Family Placement 52Productivity of Persons with Severe and Profound Disabilities 53Conclusion 555. State Law 56Increasing Societal Interest in Protecting Children 56Different Treatment of Children with Disabilities 58vii

Conclusion 606. The Rehabilitation Act of 1973 61Enactment of Section 504 of the Rehabilitation Act 61Resort to Section 504 in the Aftermath of the Bloomington Infant Doe Case 63The "Interim Final Rule" of March 1983 64President's Commission Report 65American Academy of Pediatrics v. Heckler 68Proposed 504 Rule, July 1983 69Final 504 Rule 70Effect of University Hospital 71Bowenv. American Hospital Association 73Importance of Section 504 Enforcement 77Conclusion 777. The Child Abuse Amendments of 1984 79The Standard of Care 82Exceptions to Providing Treatment 88Enforcement of the Child Abuse Amendments 90Conclusion 928. Constitutional Issues 93The Constitutional Rights of Newborn Children with Disabilities 94Factors Limiting the Rights of Newborn Children with Disabilities 98Conclusion 1019. The Incidence of Discriminatory Denial of Medical Treatment 103Difficulties of Estimation 103Disincentives to Whistle Blowing 104Surveys of Physician Attitudes 104Turnbull Analysis 106Investigative Reporting 107Testimony from People with Disabilities and Their Relatives 108Recent Medical Literature 109ConclusionHO10. Child Protective Services Agencies and Enforcement of the Child AbuseAmendments of 1984IllCPS Delegation of Investigative ResponsibilityIllSpecial Relationship Among CPS Agencies and Doctors 113CPS Agencies' Failure to Comply with Federal Regulations 115CPS Attitudes to Treatment Principles 115Conflict of Interest 117Conclusion 11711. The Role and Performance of Infant Care Review Committees 118History 118Infant Care Review Committees in Action 122Infant Care Review Committees and Reporting 127Limitations of Hospital Self-policing 128Conclusion 129viii

12. The Performance of the Federal Government 130Section 504 130The Child Abuse Amendments of 1984 139Conclusion 14113. The Protection and Advocacy System: A Resource for Enforcement 14214. Findings and Recommendations, 148A Dissenting View on the Report Medical Discrimination Against Children withDisabilities, hy William B. Allen, Chairman 154Statement of Commissioner Robert A. Destro 207AppendicesA. Incidence of Congenital Anomalies 213B. Statement of H. Rutherford Turnbull III on Incidence of DiscriminatoryDenial of Medical Treatment 219C. State by State Evaluation of Child Protective Services Agencies 233D. Verified Answers 297E. Federal Affected Agency Replies 383F. In re Infant Doe 389G. Section 504 Final Rule 393H. Bowenv. American Hospital Association 430I. Child Abuse Amendments of 1984 459J. Child Abuse Amendments Final Rule 468K. In re Steinhaus 493IX

Executive SummaryIntroductionIn convening the first of two hearings held by theUnited States Commission on Civil Rights in connectionwith the subject matter of this report, theCommission announced that its purpose was to"attempt to determine the nature and extent of thepractice of withholding medical treatment or nourishmentfrom handicapped infants and to examinethe appropriate role for the Federal Government."Expressed otherwise, the subject of Medical DiscriminationAgainst Children with Disabilities is the socalledBaby Doe issue.The Commission's interest in the Baby Doe issuewas sparked by events that began in the spring of1982, when national attention focused on the increasinglydesperate efforts of potential adoptiveparents and a guardian ad litem in Bloomington,Indiana, to save the life of an infant boy born with atracheoesophageal fistula, a failure of the esophagusand trachea to be properly connected. A child withthis condition will starve without the necessarycorrective surgery, which has better than a 90percent chance of success.Setting the Bloomington Infant Doe apart frommost infants, however, was not so much the tracheoesophagealfistula but the presence of Downsyndrome, a congenital disability that usually producessome degree of mental retardation. Even werethe surgery successful, the attending obstetricianadvised the parents, "this still would not be a normalchild. . . .Some of these children. . .are mereblobs." Declining to authorize surgery, the parentswere upheld by the State trial and appellate courts,and Infant Doe died while an appeal was being filedto the United States Supreme Court.This and other cases of discriminatory denials ofmedically indicated treatment of infants with disabilitiesare recounted in Medical Discrimination AgainstChildren with Disabilities. Though much has beensaid and written about the Baby Doe issue, theuniqueness of the Commission's report lies in thecomprehensiveness both of the subject matter ittreats and of the period of time it examines. For inaddition to discussing Baby Doe incidents in this andin the last decade, separate chapters of MedicalDiscrimination Against Children with Disabilities examine:• The relationship between physician and parentsand its effect on decisions to withhold medicaltreatment from disabled infants. This was a majorissue in the 1986 decision of the U.S. Supreme Courtin Bowen v. American Hospital Association, invalidatingthe Department of Health and Human Services'Baby Doe regulations.• The role of quality-of-life assessments in decisionsto withhold medically indicated treatmentfrom disabled infants, exemplified most notably bythe quality of life formula, QL = NE X (H + S),which influenced a team of physicians at OklahomaChildren's Memorial Hospital in denying treatmentto 24 out of 69 babies born with disabilities. In thisformula, QL is quality of life, NE represents thepatient's natural endowment, both physical andintellectual, H is the contribution from home andfamily, and S is the contribution from society.1

• The role of economic considerations in decisionsto withhold medically indicated treatmentfrom disabled infants.• The universal acceptance under State childneglect statutes of governmental intervention inmedical treatment decisionmaking where the childrenat issue do not have disabilities.• The Rehabilitation Act of 1973 and resort tosection 504 of that act in the aftermath of theBloomington Infant Doe case; the President's Commission'sReport; the proposed Baby Doe regulations;and the Supreme Court's decision in Bowen v.American Hospital Association.• The Child Abuse Amendments of 1984, thestandard of care set forth therein, and the effectivenessof the amendments in addressing the Baby Doeissue.• Constitutional issues.• Child protective services agencies and theirenforcement of the Child Abuse Amendments of1984.• The role and performance of hospital-basedinfant care review committees.• The performance of the Federal Governmentin enforcing section 504 and the Child AbuseAmendments.• Use of the protection and advocacy system asa means of strengthening enforcement of the ChildAbuse Amendments.Pursuant to its statutory mandate to "submitreports to the Congress and the President at suchtimes as the Commission, the Congress or thePresident shall deem desirable," Medical DiscriminationAgainst Children with Disabilities concludes withthe Commission's findings and recommendations.These findings and recommendations are reproducedat the end of this executive summary, followinga synopsis of each of the chapters upon whichthey are based.The Physician-Parent Relationship andTreatment/Nontreatment DecisionmakingMuch of the debate over the question of denyingtreatment to children with disabilities assumes aconflict between the prerogative of parents tochoose medical treatment for their children and theresponsibility of government to intervene on behalfof the child where the parents decline to authorizetreatment. Ignored, however, is whether, given theextent of physicians' influence on parents in thedecisionmaking process, the parents' consent towithhold medical treatment is, in fact, informedconsent. In practice, doctors are often the primemovers in denying the treatment.The period surrounding the birth of an infant isone of great stress and emotion for the infant'sparents. The birth of an infant with a disabilitytypically comes to them as a great shock, withfeelings of depression, anger, and guilt. Becausemost parents have had little or no interaction withpeople who have disabilities, their assessments oftheir infants' conditions and prognoses may havelittle basis, and they thus turn to the attendingphysicians for information and recommendations. Asone commentator noted, "[P]hysicians set the agenda.The person. . .who has the ability to set theagenda has to a large degree the ability to controlthe outcome." Physicians with a bent toward denialof treatment for persons with disabilities can be quiteinsistent in conveying negative information. Thereappears to be near unanimity from health carepersonnel who support treatment in a Baby Doesituation as well as those who oppose treatment that,in all but a handful of cases, the manner and contentof the medical provider's presentation of the issuewill be decisive in the parental decision whether toauthorize treatment.Unfortunately, there also exists misinformationamong many health care personnel and bioethicistsadvising parents on the advances and alternativesavailable to children with disabilities. As one witnessat the Commission's hearings testified:Regrettably, reports of the advances in special education,habilitation and rehabilitation have not yet received widedissemination in either the popular media or the literatureof other professions. . . .[O]ur review of the medical literature and the literature ofthe new bioethicists revealed that typical physicians andbioethicists have little or no familiarity with life possibilitiesor community resources available to individuals whoare born with handicaps.Medical Discrimination Against Children with Disabilitiesfocuses solely on questions of discrimination,addressing medical services provided or required tobe provided, that are withheld from individuals withdisabilities precisely because of their disabilities. It isneither the province nor the purpose of the Commissionto oversee, evaluate, or question the exercise oflegitimate medical judgment inherent in decisionmakingconcerning medical treatment. A civil rightsissue appropriate for examination in this report arises

in the context of medical treatment decisionmakingonly when such decisionmaking is influenced byfactors extraneous to the science and art of medicine:when color, race, age, handicap, or national originlead to a difference in treatment despite beingirrelevant to the bona fide medical judgment.Denial of Treatment to Newborn Childrenwith DisabilitiesThe record of the Commission's inquiry leaves nodoubt that newborn children have been denied food,water, and medical treatment solely because theyare, or are perceived to be, disabled. The Commissionconcurs with the Senate Committee on Laborand Human Resources, which declared that therewas a "sufficient body of evidence" indicating thatinfants with disabilities were being denied treatment,"not isolated to one or two instances." In somecases, the discriminatory denial of treatment wasbased on ignorance and false stereotypes about the"quality of life" of persons with disabilities and, inothers, misconceptions about the nature of theparticular disability the child would have if he or shewere permitted to survive.Attempts to quantify denials of treatment, now orin the recent past, are subject to inherent limitations.When a course of lifesaving treatment is rejected fora child with a disability, the decision typically is notreported to statisticians or public officials. Denial oftreatment cases typically come to public attentionwhen a family member or health care professionalreports the case to a public agency or rightsadvocate. Isolated instances of treatment denials atmajor hospitals have been reported in medicaljournals in the 1970s and 1980s, written by physiciansseeking open acceptance of treatment practicesin the medical community. Attitudes of treatingphysicians and other health care personnel can helpjudge the prevalence of denial of treatment. Twohighly significant surveys of pediatricians publishedin 1988 suggest that contemporary denial of treatmentis not infrequent. As perceived possibility ofmental retardation in an infant increased, the tendencyof pediatricians to suggest surgery for unrelatedmedical problems decreased. These surveys supplementthe underreporting of discriminatory denials oftreatment. Appendix C of this report, moreover,provides evidence that underreporting of denial oftreatment cases is a problem in hospital infant carereview committees when all the parties in the reviewprocess are in agreement on the decision not to treat.In these cases, State child protective services agenciesare not notified, contrary to the requirements ofthe Child Abuse Amendments of 1984.Quality of Life AssessmentsThe arguments typically advanced to supportdenial of lifesaving medical treatment, food, andfluids based on disability are often grounded inmisinformation, inaccurate stereotypes, and negativeattitudes about people with disabilities. A Nationcommitted to the equal protection of the laws shouldaddress the very real problems people with disabilitiesand their families face through fostering supportiveservices and social acceptance, and throughdefending the statutory rights of persons withdisabilities to accessible and integrated transportation,housing, education, health care, and employment.To accept a projected negative quality of lifefor a child with a disability based on the difficultiessociety will cause the child, rather than tackling thedifficulties themselves, is unacceptable. The Commissionrejects the view that an acceptable answer todiscrimination and prejudice is to assure the "rightto die" to those against whom the discrimination andprejudice exists.The Commission received extensive testimonydocumenting the possibilities that people with disabilitiescan have when barriers to their full integrationare decreased, adequate access is established toeducation and employment, and pessimistic prognosticationsare not permitted to become self-fulfillingprophecies. Research indicates that a negativeparental attitude tends to change over time, withincreased interaction with the child.Medical progress has been ongoing, making predictionsbased on past experience obsolete. SurgeonGeneral C. Everett Koop, for example, testifiedbefore the Commission that: "My own lifetime hasseen a complete reversal of success and failure.When I first began in the field of pediatric surgery in1946, most of the things that now have a 95 percentsurvival had a 95 percent mortality, and indeed,some carried a 100 percent mortality." A substantialbody of evidence shows that time and time againpredictions of a poor quality of life made at birth fora child with a disability are subsequently provenwrong. Why do many negative predictions about thefuture quality of life made at birth for a childrenwith disabilities turn out to be wrong? Physiciansmay have a propensity for negative prognosis atleast in part because they tend to see children with

disabilities at the time that the children are in thehospital and their conditions are at their worst.Those who have contact with people with disabilitieson a more regular basis, when they are not in animmediate medical crisis—such as their teachers,coworkers, and family members—tend to havemuch more positive views of their abilities.The quality of life argument extends beyond thelife of the person with a disability. It is frequentlyargued that the continued existence of a person withdisabilities will be a burden on the person's family oron society as a whole. In other words, the burdenthe person causes for others outweighs his or herlegal and moral rights to lifesaving treatment.There is an important difference between technicalmedical judgments over whether a given courseof treatment is likely or not to preserve life orameliorate an impairment and judgments aboutwhether a person's life is worth preserving throughlifesaving medical treatment. The first sort of judgmentis one that is uniquely medical in nature. Thesecond sort of judgment is not, properly speaking, a"medical" one. It is a social judgment. The secondjudgment no more becomes a "medical" judgmentby virtue of its implementation through the denial orprovision of medical treatment than the decisionwhether to impose capital punishment becomes a"medical" judgment if execution is by lethal injection.Recent decades have seen significant, althoughmixed, progress in dealing with the burdens onpeople with disabilities and in recognizing theirrights and full humanity. At the Federal level,section 504 of the Rehabilitation Act of 1973 appliesa general principle of nondiscrimination based onhandicap to all programs or activities receivingFederal financial assistance; the Education for AllHandicapped Children Act of 1975 promises to allchildren with disabilities a "free appropriate publiceducation which emphasizes special education andrelated services designed to meet their uniqueneeds"; the Developmental Disabilities Assistanceand Bill of Rights Act gives the Nation's assurance"that all persons with developmental disabilitiesreceive the services and other assistance and opportunitiesnecessary to enable such persons to achievetheir maximum potential through increased independence,productivity, and integration into the community";and the Architectural Barriers Act of 1968is intended to make public buildings physicallyaccessible to people with disabilities.Economic ConsiderationsToday, the real economic costs associated withdisability are less a function of the disability or itsseverity than of a policy that tends to segregate andisolate, at enormous public cost, persons consideredmost severely disabled. The assumption has beenthat the severity of the disability is the majordeterminant of lifetime cost and, consequently, thatthe more severely disabled a child may appear to beat birth, the less likely it is that the child will be ableto contribute as an adult to his or her own economicsufficiency. This assumption is a self-fulfilling prophecy:a diagnosis of severe disability leads to placementof a person in an institutional and nonworkenvironment that significantly limits that person'scapability and entails far more expense than necessary.Cost-benefit analysis as a justification for denial oftreatment to people with disabilities implies discriminationbased on disability, because such evaluationsare not typically employed in other contexts. TheCommission emphatically rejects the view thatlifesaving medical services should be provided ordenied to any group of people based on theirestimated economic worth to society.Evidence indicates that the average annual cost ofresidential services varies more by the type ofresidential option employed than by the level ofneed of the client. Group homes, apartments, andfamily-type homes have been found significantly lesscostly than institutions for individuals at all levels ofdisability, including the most severe levels. A cleartrend in the direction of family-type placements, theleast costly alternative, is developing, especially forchildren. It seems probable that in real terms theaverage cost of residential placement for peoplewith disabilities is headed downward.Despite the cost advantage and desirability offamily placement, most contemporary Federal andState policies do not encourage it. Important, oftenunrecognized, historical reasons are responsible forthis. In the early part of this century, the eugenicsmovement gave rise to the establishment of institutionsto remove persons with disabilities from theircommunities and families because they were thoughtto be dangerous and responsible for society's ills.Only recently has an attempt been made to changethe Federal medicaid legislation to give priority infunding to families and community homes. Oneattempt is the proposed Medicaid Home and CommunityQuality Services Act of 1987, which has yet

to be enacted. Because providing support for thefamily is the most cost-efficient way to provideresidential services, changing the economic incentivesto emphasize family placement rather thaninstitutionalization would significantly reduce thecost associated with disability.State LawIn popular debate, the question of whether childrenwith disabilities should be denied lifesavingtreatment has frequently been couched as though theissue were whether the government should intrudeinto matters of parental discretion. However, theuniversally accepted law has been that when parentsmake treatment decisions that will undoubtedly leadto the death of their nondisabled children, the statewill intervene to ensure the children's survival bymandating lifesaving medical care. Only when childrenhave disabilities has the claim of parentalautonomy been given serious sympathetic consideration.Every State provides a statutory basis for the civilauthorities to act to protect a child whose life orwell-being is threatened by abuse or neglect. In thejurisdictions that receive Federal funding for childabuse and neglect programs, this law must beapplied to prevent the withholding of medicallyindicated treatment from disabled infants with lifethreateningconditions in order to comply with theChild Abuse Amendments.Parens patriae is the legal doctrine which providesthat the state has the authority, in proper circumstances,to intervene in the normal parent-childrelationship for the protection of the child. Althoughprimary authority is vested in the parent,that authority is restricted, or even abrogated in full,whenever that authority is abused.The Rehabilitation Act and Section 504Enforcement of section 504 of the RehabilitationAct provides certain advantages not present in theChild Abuse Amendments alone. Section 504reaches medical discrimination against people withdisabilities of any age, while the coverage of theChild Abuse Amendments is limited to children.Additionally, the Child Abuse Amendments applyonly to States that choose to accept Federal fundingfor their child abuse programs.It creates a strange anomaly for the FederalGovernment, under section 504, to mandate thatState agencies enforce detailed national standardsforbidding medical discrimination, while permittingFederal funds to be used for programs that areengaged in the same discrimination. The FederalGovernment enforces racial and sexual antidiscriminationstandards for recipients of its funds; it shoulddo the same to prevent medical discriminationagainst persons with disabilities.Section 504 provides:No otherwise qualified handicapped individual in theUnited States. . .shall, solely by reason of his handicap, beexcluded from the participation in, be denied the benefitsof, or be subjected to discrimination under any program oractivity receiving Federal financial assistance. . . .Section 504 has been called "the first major civilrights legislation for disabled people. In contrast toearlier legislation that provides or extends benefits todisabled persons, it establishes full social participationas a civil right and represents a transformationof federal disability policy." Modeled on legislationprohibiting race and sex discrimination by recipientsof Federal financial assistance, section 504 may beenforced not only by cutting off such assistance butalso through suits for injunctive relief by theAttorney General and by aggrieved private individuals.Reacting to the Infant Doe case and the widespreadnegative response to it, President Reagan senta memorandum to the Attorney General and Secretaryof Health and Human Services in April 1982 onthe enforcement of Federal laws prohibiting discriminationagainst individuals with a disability. Thememorandum required HHS to issue an explanationto health care providers of section 5O4's applicabilityto the denial of treatment to newborn children witha disability. HHS was also to enforce section 504 andother appropriate Federal laws to prevent thewithholding of potentially lifesaving treatment fromchildren with a disability that would normally beprovided to children without a disability. In May1982, the Office for Civil Rights of the Departmentof Health and Human Services sent hospitals receivingFederal financial assistance a Notice to HealthCare Providers which indicated that it was unlawfulto deny nutrition or medical or surgical treatment toan infant with a disability if the denial was basedupon the existence of a handicap and the handicapdid not render treatment or nutritional sustenancemedically contraindicated. Reflecting a concern thathospitals or their staff might attempt to do indirectlywhat could not lawfully be done directly, the notice

generated by health care personnel who act as theagents of health care facilities. In such cases, healthcare providers who do not provide lifesaving medicaltreatment to children with disabilities, whichwould be provided were it not for the disabilities,should be held to violate section 504 despite parentalacquiescence in the treatment denial.In light of this, and in light of the advantages ofsection 504 for addressing denials of treatment, theCommission recommends that the Executive branchgive careful consideration to resuming investigationof allegations that children with disabilities arediscriminatorily denied medical treatment based onhandicap and initiate enforcement of section 504 incases in which the allegations are found to bejustified.Because there was no binding majority opinion,and because the plurality opinion is ambiguous, itmight be appropriate for the Department of Healthand Human Services to act to enforce section 504 ina well-documented instance of discriminatory failureto report as a way of ultimately obtaining clarificationor adjustment from the Court.Child Abuse AmendmentsThe Child Abuse Amendments of 1984, theproduct of considerable debate and negotiation, setout a detailed and, for the most part, unambiguousbut nuanced standard of care that States whichreceive Federal funds for their child abuse andneglect programs must enforce among health carefacilities. If adequately enforced, the law wouldprovide strong protection for many children withdisabilities against denial of lifesaving treatment.Virtually all States receive funds under the ChildAbuse Prevention and Treatment Act, and the ChildAbuse Amendments therefore apply to them. Additionally,the District of Columbia, as well as PuertoRico, Guam, the Virgin Islands, the Commonwealthof the Northern Mariana Islands, and AmericanSamoa receive such grants and are bound byprovisions of the amendments.Perhaps the best short statement of the medicalstandard of care established by the Child AbuseAmendments is found in the Supplemental InformationHHS published with the Proposed Rule:[F]irst, all such disabled infants must under all circumstancesreceive appropriate nutrition, hydration and medication.Second, all such disabled infants must be givenmedically indicated treatment. Third, there are threeexceptions to the requirement that all disabled infants mustreceive treatment, or, stated in other terms, three circumstancesin which treatment is not considered "medicallyindicated."The centerpiece of the Child Abuse Amendments'standard of care is found in the phrase that treatmentmust be that "most likely to be effective in amelioratingor correcting all [life-threatening] conditions."It is the care that must be provided to allchildren covered by the law unless one of the threeexceptions applies. This definition creates a highstandard of care. Children covered by the law mustbe provided the treatment "most likely to beeffective," not just the level of treatment that wouldbe provided to their nondisabled counterparts. Thisplaces a responsibility on physicians to becomeknowledgeable about and employ the best availabletreatment rather than simply to avoid discriminatingon the basis of disability.Exceptions to Providing TreatmentThe Child Abuse Amendments establish threeexceptions to the requirement to provide the treatmentmost likely to correct or ameliorate a child'slife-threatening conditions (maximal treatment)—although"appropriate nutrition, hydration, and medication"must always be provided. The exceptionsare when in the treating physician's or physicians'reasonable medical judgment:(A) The infant is chronically and irreversibly comatose;(B) The provision of such treatment would (i) merelyprolong dying, (ii) not be effective in ameliorating orcorrecting all of the infant's life-threatening conditions, or(iii) otherwise be futile in terms of the survival of theinfant; or(C) The provision of such treatment would be virtuallyfutile in terms of the survival of the infant and thetreatment itself under such circumstances would be inhumane.State Programs and AuthorityUnder the statute as enacted, within 1 year afterthe act became law, State agencies desiring toreceive the Federal funds had to have proceduresand programs to permit coordination with the healthcare facilities, prompt notification by health carefacilities for cases of suspected medical neglect(including instances of withholding of medicallyindicated treatment from disabled infants with lifethreateningconditions), and authority, under Statelaw, for the State child protective service system topursue any legal remedies, including the authority to

initiate legal proceedings in a court of competentjurisdiction, as may be necessary to prevent thewithholding of medically indicated treatment fromdisabled infants with life-threatening conditions.Constitutional IssuesThe record developed during the Commission'stwo hearings and continuing investigation demonstratesthat there is a grave danger to the constitutionalrights of newborn children in cases wherefood, water, and necessary medical care are deniedon the basis of disability and predictions concerningfuture quality of life. The principle of equal protectionof the laws is offended when disability is thebasis of a nontreatment decision. Procedural protectionfor the interests of both child and parents isoften absent completely or is woefully inadequate tothe task of sifting the facts.Since the Supreme Court's decision in Bowen v.American Hospital Association, it has been clear thatjudicial action is insufficient to protect newbornchildren with disabilities. The task of protectingsuch children from discrimination and neglect,whether based on ignorance or outright prejudice,thus falls to Congress and to the State legislatures.Incidence of Discriminatory Denial ofMedical TreatmentA significantly high incidence of medical discriminationagainst children with disabilities exists that ispart of a much larger pattern of medical carediscrimination against people with disabilities. Thisincidence largely persists despite 3 years of experienceunder the Child Abuse Amendments. TheCommission relied on specific cases; testimony at theCommission's hearings, including the testimony ofpeople with disabilities and their relatives; therepeatedly declared views of physicians set forth inprofessional journals; surveys of health care professionals;and investigative reporting.Enforcement of Child Abuse Amendmentsby the Child Protective Services AgenciesPrincipal enforcement responsibility for the ChildAbuse Amendments resides with State child protectiveservices (CPS) agencies, the variously namedentities that exist to administer each jurisdiction'schild abuse and neglect laws. Under current law, thefate of children with disabilities who are threatenedwith denial of lifesaving medical treatment, food,and fluids largely depends on how effectively CPSagencies carry out this responsibility. Alternativeavenues of protection are scarce. Direct Federalefforts to prevent this type of medical discriminationto date have been stymied.The close working relationship between someCPS personnel and members of the medical professionhas resulted in the substantial failure of manyState child protective service agencies to effectivelyenforce the child Abuse Amendments.CPS Delegation of Investigative ResponsibilityVirtually all jurisdictions receive Federal fundsfrom the Department of Health and Human Servicesunder the Child Abuse Prevention and TreatmentAct. A review of their policies and procedures hasshown that on their faces, the policies of 14 of theseStates explicitly abdicate to internal hospital infantcare review committees or hospital staffs the authorityto decide whether illegal denial of treatment istaking place when a report of suspected denial oftreatment is received by the State agencies.Under the Child Abuse Amendments, agenciesmust make the determination whether treatment ismedically indicated. The existence of hospital-administeredinfant care review committees (ICRC)does not relieve a State CPS agency of its responsibilityto investigate suspected cases of withholdingof medically indicated treatment or to employ itslegal authority to prevent such withholding. Thewidespread readiness of CPS agencies to surrendertheir arms-length oversight responsibility concerningmedical neglect appears in part to be rooted inthe special relationship that has developed betweenCPS workers and members of the medical profession.In dealing with traditional forms of child abuseand neglect, CPS agencies rely primarily on healthcare professionals for diagnosis and reporting.In contrast to the receptivity of most CPSagencies to views from medical organizations, viewsfrom disability organizations—the groups representingthose whom the amendments were designed toprotect—are ignored in many cases. According toone survey of 37 responding jurisdictions, 34 saidthat they had consulted with medical representativesin formulating their implementing procedures, whileonly 11 said they had consulted with disabilitygroups.Failure to Comply with Federal RegulationsIn direct contravention of Federal regulations, sixStates' CPS agencies have no written policy specify-8

ing how they would obtain medical records toinvestigate a report of medical neglect. Four States'CPS agencies have policies that fail to provide forsecuring an independent medical examination of achild with a disability about whom a report of asuspected medical neglect has been filed. Theimpression that some States pay little or no attentionto the standards of treatment embodied in theFederal law and regulations is reinforced by the factthat eight States' CPS agencies have policies thateither misdefme the term "withholding of medicallyindicated treatment," do not define it at all, or definethe term in such an abbreviated fashion as to inviteambiguity and uncertainty.Many States are not even clear in their policiesconcerning who is covered by the standards oftreatment in the act. Twenty-two State CPS agencieshave policies that either do not define the term"infant" or—in direct contravention of the governingregulations—define the term to encompass onlyinfants of less than 1 year in age.CPS agencies are part of the State government,often in the same department that runs hospitals andother institutions that provide medical treatment tochildren with disabilities. This can create a directconflict of interest.Infant Care Review CommitteesTaking note of the great propensity by many inthe medical profession to disagree with the treatmentstandards in the Child Abuse Amendments,and of the available evidence concerning the functioningto date of hospital-based ethics or infant carereview committees, the Commission is persuadedthat they cannot be relied upon alone to ensure thatchildren with disabilities are accorded the lifesavingtreatment that is their right by law.At the same time, it is clear that such committeesare here to stay. Therefore, the Commission believesthere is a need to ensure that there be independent,contemporaneous scrutiny of infant care reviewcommittee proceedings, preferably by medicallyknowledgeable and experienced disability advocates,and that the prompt reporting requirement be morevigorously enforced to make this possible.The establishment of infant care review committees—internalhospital committees that considerinstances in which life-preserving medical treatmentis being or may be withheld from infants withdisabilities—is encouraged by the Child AbuseAmendments, as it was by the section 504 FinalRule. A 1986 survey found that 51.8 percent ofhospitals with either a neonatal intensive care unit orover 1,500 births annually had established suchcommittees, and an additional 8.9 percent were inthe process of forming them. The proponents ofethics committees attempt to shift the question fromthe substantive one of whether treatment should bewithheld to the procedural one of who shoulddecide whether treatment should be withheld.The Final Rule of section 504 includes a recommendationthat hospitals establish infant care reviewcommittees. However, HHS recognized that theoriginal rationale for ethics committees stood instark contrast to the approach embodied in thenondiscrimination tenets of section 504. Inherent inreliance on section 504 was the assumption that thelaw establishes a societally defined basis for determiningwhen life-preserving treatment must beprovided to children with disabilities and when itmay be withheld from them. In contrast, inherent inthe original rationale for ethics committees was theassumption that such determinations should be decidedon a case-by-case basis varying from hospitalto hospital. Because of this dichotomy, the FinalRule explained that HHS revised a model proposedby the American Academy of Pediatrics "to underscorethat the purpose of the ICRC is to advance thebasic principles embodied in section 504."HHS guidelines assumed that the particular casesthat came before a committee would not involverelitigation of the ethical and social debates aboutthe propriety of treatment that preceded enactmentof the law, but would instead focus on an analysis ofhow the law should properly be applied to the factsof that case. The "ethical issues" concerning whatcircumstances justify withholding of treatmentwould not be reconsidered on a case-by-case basis.The issues were to be regarded as settled by theChild Abuse Amendments.Infant Care Review Committees in ActionAre the infant care review committees serving asprognosis committees, providing advice concerningwhether or not the facts in particular cases bringthem within the circumstances the Child AbuseAmendments define as requiring treatment? Or dothey act as "ethics" cqmmittees, making quality oflife judgments about whether or not treatmentshould be withdrawn without reference to detailedlegal standards—the role originally envisioned forthem by the President's Commission and the Ameri-

the discriminating party, thus fulfilling its role,without officially reporting a finding of noncompliance.In at least two instances known to the Commission,OCR delayed taking action. Confronted withsubstantial evidence of significant and ongoingdenial of lifesaving treatment to children withdisabilities, evidence that suggested an ongoingthreat to lives in both States, OCR failed to act withthe vigor and dispatch incumbent on it in light of thecircumstances, let alone consistent with its legalresponsibilities and its publicly stated position.Although several State Child Protective Servicesagencies failed to meet the standards and proceduresrequired under the Child Abuse Amendments andtheir implementing regulations, the States have beencertified by HHS for receipt of Federal funds underthe Child Abuse Prevention and Treatment Act,without being advised that they are out of complianceor being given any deadline to bring theirstandards and procedures into compliance. TheCommission considers this a significant failing on thepart of HHS.In a report on infant care review committees, theHHS Office of the Inspector General identifiedbetween 20 and 36 potential Baby Doe casesconsidered by 10 committees whose activities weremonitored. Only three cases were reported to StateCPS agencies. The Office of Inspector General didnot review the facts in the unreported cases todetermine whether or not they met the standardsestablished in the Child Abuse Amendments. It ishard to see how, without doing this, the Departmentcould accomplish its task of ascertaining whetherthe committees are fulfilling what HHS has describedas "the role of the ICRC [infant care reviewcommittee] to review the case. . .and recommendthat the hospital seek CPS agency involvementwhen necessary to assure protection for the infantand compliance with applicable legal standards."The Protection and Advocacy System: AResource for EnforcementIn 1975 Congress established structures calledProtection and Advocacy Systems (P&A), originallyattuned specifically to the need to ensure vigorousadvocacy of the rights of persons with developmentaldisabilities. The Developmentally Disabled Assistanceand Bill of Rights Act required that each Stateor similar jurisdiction receiving Federal funding forpersons with developmental disabilities establish anindependent system with "authority to pursue legal,administrative, and other appropriate remedies toinsure the protection of the rights of [persons withdevelopmental disabilities]."In 1984, in substantially expanding funding for theP&A systems, Congress recognized both their importanceand their impressive track record. TheSenate Committee on Labor and Human ResourcesReport noted that P&As are an expanding effort byCongress to assure disabled persons protection oftheir rights under law. In 1986 Congress chose "tobuild on the experience of the existing P&A Systemin investigating and resolving situations involvingabuse and neglect" of persons with mental illness byadding responsibility for advocacy for this populationto the P&As.The Commission thinks that the P&A systemaffords an experienced and appropriate resource toremedy discriminatory denial of medical treatment,food, and fluids to people with disabilities. P&Ascurrently have a general jurisdiction that encompassessuch instances. The Commission believes thatthe P&A system should be brought into activeinvolvement in efforts to prevent illegal denial oftreatment to children with disabilities. In summary,the Commission envisions the following approach:• Prompt reports of suspected or actual cases ofwithholding of medically indicated treatmentwould still go to CPS agencies, which wouldretain the authority and responsibility to investigatethem. However, the State P&A agencywould be notified by the CPS agency as soon asthe report was received. The P&A would haveaccess to records. As a representative of theinterests of the child, the P&A agency would haveindependent authority, similar to that now held bythe CPS agency, to obtain medical records and toobtain a court order.• To catch cases not being reported to the CPSagency, any hospital that uses a committee toreview a prospective withholding of treatmentfrom a person with a disability would be requiredto notify the State P&A agency of meetings heldto discuss the case. The P&A would be able toreview the records and discuss the situation. Acourt order could be sought by the P&A.• To provide a deterrent to physicians disposedto not reporting a case to the State CPS agency ora hospital committee, the P&A could conductretrospective reviews of the medical records.11

The Commission sees several advantages to involvingthe P&A systems more directly in theenforcement of the Child Abuse Amendments of1984. First, the P&A system has more specializedexperience in safeguarding the rights of persons withdisabilities than the CPS system. While the CPSsystem deals with the abuse and neglect of allchildren, most of whom are not disabled, the P&Asystem since its inception has concentrated onprotecting the rights of persons with disabilities.Second, the P&A system is less likely to be affectedby conflicts of interest than the CPS system becausethe P&A system is statutorily independent of Stateagencies and hospitals. Third, unlike the reliance bythe CPS agencies on the medical profession, P&Aagencies have no special relationship with themedical profession that could impair their ability tobe vigorous advocates. Fourth, P&A agencies areaccountable to the populations they serve. Theymust provide an annual opportunity "to assure thatpersons with developmental disabilities have fullaccess to services of the system." This provision foroversight, not present in most CPS agencies, is animportant check on the danger of relaxing thevigilance and vigor essential to effective advocacy.The Commission believes that appropriate additionalfunding for the P&As will be needed toimplement these new responsibilities. It should beadequate both for State-by-State implementation andfor supportive training and technical assistance,including resources for the rapid evaluation ofmedical conditions. With these powers and resources,the P&A system would be in a position tobring about what the Commission believes would bea significant improvement in enforcement of themedical treatment rights of persons, especially children,with disabilities.Findings and RecommendationsBased on its hearings, research, and the report, theCommission adopts the following findings and recommendations.General Findings1. Surveys of health care personnel, the resultsof investigative reporting, the testimony of peoplewith disabilities and their relatives, and the repeatedlydeclared views of physicians set forth in theirprofessional journals all combine to persuade theCommission of the likelihood of widespread andcontinuing denials of lifesaving treatment to childrenwith disabilities.2. The Commission is convinced that the evidencesupports a finding that discriminatory denialof medical treatment, food, and fluids is and has beena significant civil rights problem for infants withdisabilities. It is also persuaded that the availableevidence strongly suggests that the situation has notdramatically changed since the implementation ofthe Child Abuse Amendments of 1984 on October 1,1985.3. The grounds typically advanced to supportdenial of lifesaving medical treatment or food andfluids are based on erroneous judgments concerningthe quality of life of a person with a disability or onsocial judgments that such a person's continuedexistence will impose an "unacceptable" burden onhis or her family or on the Nation as a whole. Thesejudgments are often grounded in misinformation,inaccurate stereotypes, and negative attitudes aboutpeople with disabilities.4. Many people, including members of the medicalprofession, hold negative attitudes about life withdisability that affect not only children but also adultswith disabilities. Moreover, direct testimony wasprovided at the Commission hearings that theseattitudes exist and that discrimination in the provisionof lifesaving and other medical treatment occurswith respect to adults with disabilities as well as incases involving infants and children. Further factfindingis needed to determine the extent of discriminatorydenial of medically indicated treatment incases involving adults with disabilities.5. There is evidence that in many instances inwhich lifesaving treatment is denied to children withdisabilities, their parents are only nominally makingthe decision to withhold the treatment. In practicethe doctors are often the prime movers in denyingthe treatment.6. The question of whether children with disabilitiesshould be denied lifesaving treatment hasfrequently been couched in popular debate asthough the issue were the wisdom of governmentintrusion into matters of parental discretion. In fact,however, for decades the universally accepted lawhas been that when parents make treatment decisionsthat will undebatably lead to the death of theirnondisabled children, the state will intervene toensure the children's survival by mandating provisionof lifesaving medical care. It is only when thechildren have disabilities that the claim of parental12

autonomy is given serious sympathetic consideration.Thus, the decisions upholding putative parentaldecisions to deny lifesaving treatment to theirchildren with disabilities are rooted less in a respectfor parental authority than in a bias against disability.7. There are substantial economic costs associatedwith some forms of disability. Many costs,however, are less a function of the disability or theseverity of the disability than of a policy that tendsto segregate and isolate, at enormous public cost,those persons considered most severely disabledwithout even considering the alternative of providingsocial and economic support for the family. Theassumptions influencing denial of treatment haveoften been: (1) that the level of severity of disabilityis the major determinant of lifetime costs; (2)consequently, that the more severely disabled a childmay appear to be at birth the less likely it is that thechild will be able to contribute as an adult to his orher own economic sufficiency; and (3) therefore, themore expensive it will be to meet that person's basicneeds. Although these assumptions rest on majorfallacies, reliance on them has resulted in a selffulfillingprophecy: a diagnosis of severe disability atbirth leads to placements in residential and nonworkenvironments that significantly limit that person'scapability and entail far more expense than necessary.The ultimate irony occurs when the expensethat is the consequence of the original unfoundedand stereotypical assumption becomes a basis forending the lives of persons with severe, or what arethought to be severe, disabilities shortly after theyare born.8. The record developed during the Commission'stwo hearings and continuing investigationdemonstrates that there is a grave danger to theconstitutional rights of newborn children in cases inwhich food, water, and necessary medical care aredenied on the basis of disability and predictionsconcerning future quality of life. The principle ofequal protection of the law is offended whendisability is the basis of a nontreatment decision.Procedural protections for the interests of both childand parents are often absent completely or arewoefully inadequate to the task of sifting the facts.General Recommendations1. The Commission concludes that the Congressand the President should address the very realproblems faced by people with disabilities and theirfamilies. The President should take the lead infostering the development of a climate of socialacceptance of persons with disabilities and theirfamilies by speaking publicly on the issue. ThePresident should instruct the White House Councilon Domestic Policy to review the adequacy, as wellas the coordination and development of, supportiveservices intended to assist such families. The Presidentshould order a review of the mechanismsdesigned for vigorous enforcement of the statutoryrights of those with disabilities to accessible andintegrated transportation, housing, education, healthcare, and employment. In addition, the appropriatecommittees of the Congress should schedule hearingsto address these questions.2. In considering legislation designed to preventdiscrimination against persons with disabilities,Congress should take care to make clear thatdiscrimination in the course of rendering medicaltreatment is precluded.3. There is a need for factfmding activities bythe Congress, the State legislatures, and Federal,State, and local agencies charged with the enforcementof civil rights laws and medical standards, todetermine the extent to which adults with disabilitiesare subjected to discrimination in the provision ofmedical care and treatment, and to evaluate whatremedies exist or are needed to prevent futurediscrimination of this kind from taking place. Inparticular, the new Secretary of Health and HumanServices should direct the Department to undertakesuch a study.Specific Findings Regarding Support for Familieswith Disabilities1. The period surrounding birth is a time ofconsiderable stress and emotion, and for nondisabledparents the birth of a child with a disability typicallycomes as a great shock. While beset by traumaticfeelings of depression, grief, anger, and guilt, manysuch parents today have inadequate accurate informationwith which to make considered evaluationsconcerning the nature of life with a disability or theconsequences for a family that includes a child witha disability.2. One of the principal motivations for denial oflifesaving treatment to children with disabilities isthe view that their continued existence will createtoo great a burden for their families. There isevidence that this concern has led to concurrence or13

acquiescence in the death or elimination of thesechildren.Specific Recommendations Regarding Support forFamilies with Disabilities1. Congress should amend the Medicaid Act orother appropriate legislation to require that recipientsof Federal financial assistance for medicalservices provide specific information on support andresources to parents of newborn children withdisabilities. This should include information onadoption and, when necessary, information on othersupported family placement with resources necessaryto care for the child.2. Congress should amend the Medicaid Act orother appropriate legislation to lower the adjustedgross income ceiling that a family must spend ondisability-related medical expenses before the familymember with a disability becomes medicaid eligible.Specific Findings Regarding Section 504 of theRehabilitation Act of 19731. The hearings and research conducted by theCommission, and the findings based on them, especiallyGeneral Finding 5, supply a factual recordthat was absent in 1986 when the United StatesSupreme Court decided Bowen v. American HospitalAssociation, striking down regulations intended toassist enforcement of section 504 in the context ofdiscriminatory denial of treatment to children withdisabilities.2. A central problem with the Bowen pluralityopinion is that it suggests that section 504 puts noconstraints on a recipient of Federal financial assistanceresponsible for the discriminatory denial oftreatment to a person with a disability, if the denial isauthorized by a nonrecipient such as a parent who,as a surrogate decisionmaker for a child with adisability, normally has the legal authority to provideor withhold consent for the child's medicaltreatment.3. The Commission's findings suggest that parentswho authorize denial of treatment to theirchildren with disabilities are frequently substantiallyinfluenced in that decision by the views of theirchildren's'physicians and other health care personnelwho frequently display inadequate awareness ofthe potential of these children.4. In cases in which decisions nominally madeby parents to deny treatment to children withdisabilities are in fact generated by health carepersonnel, health care providers who do not providelifesaving medical treatment to children with disabilitiesthat would be provided were it not for thedisabilities should be held to violate section 504despite parental acquiescence in the treatment denial.5. The logic of the Bowen plurality opinionapplies equally to authorizations for denial of treatmentby other nonrecipient surrogate decisionmakers,such as a guardian for a person with a disabilitywho is not competent to make health care decisions.6. The position taken by the plurality thus putsat risk not only children, but also older people withdisabilities. In the view of the Commission, arecipient of Federal financial assistance should notbe able to escape the requirements of section 504simply by persuading or encouraging a nonrecipientto authorize what, but for the nonrecipient's involvement,would be prohibited discrimination. Arecipient's substantial involvement in a nonrecipient'sdiscriminatory practices should be held toviolate section 504.7. The Commission's reading of the legislativehistory and plain meaning of section 504 of theRehabilitation Act of 1973 persuade it that theprovision does cover discriminatory denial of medicaltreatment to people with disabilities.8. The Commission concludes that passage ofthe Civil Rights Restoration Act establishes that ahospital's practice of reporting to State agenciesinstances in which parents withhold consent forprovision of lifesaving treatment to their children iscovered by section 504. The act defines section 504'scoverage to include "all of the operations of. . .anentire corporation, partnership, or other privateorganization. . .which is principally engaged in thebusiness of providing. . .health care. . . ." If ahospital engages in reporting cases of medicalneglect to the State child protective services agency,that practice of reporting is among the operations ofa corporation that principally provides health care.Therefore, if any part of the hospital receivesmedicaid or medicare, discrimination in reportingbased on handicap (such as a practice of reportinginstances in which religiously motivated parentsrefuse consent for lifesaving treatment for nondisabledchildren to the authorities, but failing to reportinstances in which parents refuse consent for lifesavingtreatment for children with disabilities) violatessection 504.14

9. During the period in which enforcement ofsection 504 in this context was not yet enjoined, theperformance of the Office for Civil Rights of theDepartment of Health and Human Services inimplementing it was poor. Confronted with substantialevidence of significant and ongoing denial oflifesaving treatment to children with disabilities,evidence that suggested an ongoing threat to lives intwo States, the responsible Federal agency failed toact with the vigor and dispatch incumbent on it inlight of the circumstances, its legal responsibilities,and its publicly stated position.Specific Recommendations Regarding Section 504of the Rehabilitation Act of 19731. In light of the record developed by thisCommission, and in light of the advantages ofsection 504 for addressing denials of treatment, theCommission recommends that the Executive branchgive careful consideration to resuming investigationof allegations that children with disabilities arediscriminatorily denied medical treatment based onhandicap and initiate enforcement of section 504 incases in which the allegations are found to bejustified.2. Congress should amend the Child AbusePrevention and Treatment Act or other appropriatelegislation to make clear that withholding of medicallyindicated treatment, as defined in the ChildAbuse Amendments of 1984, constitutes denial ofthe benefits of health care services for purposes ofTitle VI and section 504.Specific Findings Regarding the Child AbuseAmendments of 19841. The Child Abuse Amendments of 1984, theproduct of considerable debate and negotiation, setout a detailed and, for the most part, unambiguousbut nuanced standard of care which States thatreceive Federal funds for their child abuse andneglect programs must enforce among health carefacilities. If adequately enforced, the law wouldprovide strong protection for many children withdisabilities against denial of lifesaving treatment.2. Parents engaged in life and death decisions fortheir children are heavily dependent on the goodfaith of, and accurate information provided by, thoseadvising them. Because advisors may be ignorant orprejudiced about persons with disabilities, there is aneed for the establishment of a broadly basedadvisory process that includes members of the localprotection and advocacy system (P&As) and otherswith expertise in disability and rehabilitation. Establishmentof a structured care review process orcommittee will ensure that the decision made is incompliance with the standards set forth in the ChildAbuse Amendments, provided that any participantin the advisory process who is concerned with thewell-being of the child has standing to invoke theremedies that are otherwise available under Statelaw and the Child Abuse Amendments for dealingwith child neglect.3. Many State child protective services agenciesrely heavily upon members of the medical professionfor information and assistance concerning cases ofparental child abuse. This close working relationshiphas also led to heavy reliance by many State childprotective services agencies on the very medicalcare facilities and personnel whose actions, advice,or neglect are at issue in cases of suspected medicalcare discrimination. Taken together, such closeworking relationships among State child protectiveservices agencies and members of the medicalprofession has resulted in the substantial failure ofmany such agencies to enforce effectively the ChildAbuse Amendments of 1984.4. It is questionable whether most hospital-basedethics or infant care review committees are constructedin a manner that makes them likely toconduct searching scrutiny of proposed denials oftreatment. They represent an approach that reliesessentially upon the internal self-regulation of thehealth care community. Few committees includerepresentatives of disability rights groups; the majorityconvene only to deal with disagreements, ratherthan attempting to scrutinize most denial of treatmentdecisions to see whether they comply with thelaw. Instead of strictly applying the Child AbuseAmendment standards, many appear in practice touse more ambiguous criteria that include considerationof the projected "quality of life" of the childwith a disability. Taking note of the great propensityby many in the medical profession to disagree withthe treatment standards in the Child Abuse Amendmentsand of the available evidence concerning thefunctioning to date of hospital-based ethics or infantcare review committees, the Commission is persuadedthat they cannot be relied upon alone to ensurethat children with disabilities are accorded thelifesaving treatment that is their right by law.5. The Commission is dismayed at the poorperformance of the Office of Human Development15

Services of the Department of Health and HumanServices in fulfilling its responsibility to ensure thatState child protective services agencies receivingfunds under the Child Abuse Prevention and TreatmentAct comply with the Child Abuse Amendmentsof 1984 so as to protect children withdisabilities from illegal discrimination in the provisionof medical care. That performance requiressubstantial improvement. Although the Commissionis encouraged by steps the Office of Human DevelopmentServices now states it will take in responseto this report, it is too soon to determine whetherthey will result in the very significant increase inscrutiny of the performance of recipient Stateagencies that is essential if the Department iseffectively to fulfill its responsibilities under the law.Specific Recommendations Regarding the ChildAbuse Amendments of 19841. Because funds available under the ChildAbuse Prevention and Treatment Act are apparentlynot sufficient to induce all jurisdictions to complywith the Child Abuse Amendments in order toqualify for them, compliance with the Child AbuseAmendments should be made an additional requirementfor State eligibility for participation in medicaid,so that the protections they afford will be madeavailable to all children with disabilities in theUnited States.2. Congress should amend the Child AbusePrevention and Treatment Act or other appropriatelegislation to establish a mechanism to improvereporting of cases of suspected withholding ofmedically indicated treatment by requiring that anyhospital that uses a committee to review a prospectiveinstance of withholding of treatment from aperson with a disability is required to notify theState protection and advocacy (P&A) agency ofmeetings held to discuss the case. The P&A agencyshould then be afforded the opportunity to examinethe medical records and discuss the situation withphysicians, relatives, and the committee. It shouldhave authority to obtain a court order for anindependent medical examination, and if it concludesthat medically indicated treatment would otherwisebe withheld illegally, it should have the standing toinstitute a court proceeding to require that it beprovided.3. Hospitals without a specialized advisory processfor dealing with the special needs of parents forinformation on disability and rehabilitation should berequired to establish a process in accordance withthe provisions of the Child Abuse Amendments andthe recommendation made above.4. Representatives of the local protection andadvocacy system should be included in the advisoryprocess, both as advocates for the child's interestsand as a resource for the information of the parents.5. Congress should amend section 504 and theChild Abuse Amendments to require the establishmentof such a care review process or committeewithin treatment facilities across the country.6. Should any participant in a care reviewadvisory process not be satisfied that the outcome ofthe process is in compliance with the standards setforth in the Child Abuse Amendments, that personshould have standing to invoke such remedies,judicial or otherwise, that are available under Statelaw for dealing with child neglect.7. When a State child protective services agency(CPS) receives a report of suspected withholding ofmedically indicated treatment under the ChildAbuse Amendments, it should be required promptlyto notify the State P&A agency and to provide itaccess to the records obtained and informationdeveloped by the CPS agency. As a representativeof the interests of the child, the P&A agency shouldhave independent authority, similar to that now heldby the CPS agency, to obtain medical records, toobtain a court order for an independent medicalexamination, to appear on behalf of the child in anycourt proceeding to authorize medical treatmentinitiated by the CPS agency. The P&A agencyshould also have independent standing to initiate acourt proceeding to authorize medical treatment forthe child.8. To create a deterrent to physicians who notonly might fail to report a case of withholding to theState CPS agency but also might not submit it to ahospital committee, the P&A agency should begiven authority to conduct retrospective reviews ofthe medical records of those with disabilities whodie in the State. If instances of illegal withholding ofmedical treatment are detected, the P&A agencyshould be able to seek appropriate action by licensingboards or Federal funding sources and, inextreme cases, to institute suits for injunctive ormonetary relief or refer cases for investigation byprosecuting attorneys.9. Congress should afford P&A agencies appropriatefinancial and backup assistance to enable themto fulfill these roles capably.16

10. The Office of Human Development Services ment Act to remedy the current widespread failurein the Department of Health and Human Services of State child protective services agencies to complyshould take corrective measures to ensure more with the requirements of the Child Abuse Amendrigorousscrutiny of State plans submitted for fund- ments of 1984ing under the Child Abuse Prevention and Treat-17

Chapter 1Fundamental Rights: An Introduction toMedical Discrimination Against People withDisabilitiesThe Chairman opened the first hearing the UnitedStates Commission on Civil Rights held on thesubject matter of this report by setting forth theCommission's aim:The purpose of this hearing is to attempt to determine thenature and extent of the practice of withholding medicaltreatment or nourishment from handicapped infants and toexamine the appropriate role for the Federal Government.Section 504 of the Rehabilitation Act of 1973, asamended, prohibits discrimination against qualified handicappedindividuals under any program or activity receivingFederal financial assistance. In the spring of 1982,reports of the death of a Bloomington, Indiana, infant withDown's syndrome, from whom available surgical treatmentto correct a detached esophagus was withheld,prompted widespread attention on the medical treatmentof handicapped newborns. Following the Indiana incident,the Department of Health and Human Services [HHS]issued a notice to recipient hospitals reminding them of theapplicability of section 504 to the treatment of handicappedinfants. HHS then issued interim and proposedrules governing nondiscrimination in the treatment ofthese newborns, both of which were challenged in courtsand struck down.Last fall Congress passed the Child Abuse Amendmentsof 1984, requiring States seeking child protection fundsfrom the Federal Government to take certain steps toprotect handicapped newborns. HHS has issued rules andmodel guidelines under that statute which have been madefinal and will become effective in October of this year.The primary focus of this hearing is the role the FederalGovernment should play. . . - 11Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 1-2 (1985) (vol. I) (statement ofClarence M. Pendleton, Jr., Chairman, U.S. Commission on CivilRights).18One year later, the Commission held a secondhearing to receive testimony concerning the SupremeCourt's decision in Bowen v. American HospitalAssociation, 2 which invalidated regulations issuedby HHS to implement section 504, and to examinethe manner in which the regulations promulgatedunder the Child Abuse Amendments had beenimplemented in the period since the first hearing.Underlying both sets of hearings, and thus thisreport, is concern about the appropriate role of theFederal Government in safeguarding the rights ofchildren with disabilities under both section 504 andthe Child Abuse Amendments of 1984 to be free ofdiscrimination in the provision of lifesaving medicaltreatment. Three years have passed since the regulationsimplementing the Child Abuse Amendmentstook effect, and two and a half years have passedsince the section 504 regulations were renderedunenforceable by Bowen. Thus, in evaluating theperformance of the Federal Government in addressingthe statutory rights of children with disabilitiesto lifesaving medical treatment, this report raises thequestion whether modifications to current laws andpractices are desirable.Included in the Commission's mandate is theresponsibility to appraise the laws and policies of theFederal Government and to examine legal developmentswith respect to discrimination or denials ofequal protection of the laws under the Constitutionbecause of handicap. 3 This report focuses solely on23476 U.S. 610 (1986).42 U.S.C.A. § 1975c (West Supp. 1988).

questions of discrimination. It addresses medicalservices that are already provided or required to beprovided to nondisabled individuals but that arewithheld from individuals with disabilities preciselybecause of the disabilities. 4 It is neither the provincenor the purpose of the Commission to oversee,evaluate, or question the exercise of legitimatemedical judgment that is inherent in decisionmakingconcerning medical treatment. The Commissionemphatically disclaims any competence or intentionto judge whether particular medical treatments aremore efficacious than others or at what times amedical treatment is effective or futile. Such judgmentsin individual cases may be correct or theymay be mistaken. They may raise questions appropriatefor examination through peer review, licensingboards, or malpractice cases; but they do notentail civil rights issues.A civil rights issue appropriate for examination bythis Commission arises in the context of medicaltreatment decisionmaking only when such decisionmakingis influenced by factors extraneous to thescience and art of medicine: when color, race, age,handicap, or national origin lead to a difference intreatment despite being irrelevant to the bona fidemedical judgment. 5 If kidney dialysis, for example,is withheld from someone because it is medicallycontraindicated, such a judgment is outside the4Preexisting child abuse and neglect laws throughout the Statescreate the obligation to provide children lifesaving medicaltreatment. See chap. 5. The statutory or constitutional rights ofchildren with disabilities to receive equal treatment are found insection 504 of the Rehabilitation Act of 1973 (29 U.S.C.A. §794(West 1985)), the Child Abuse Amendments of 1984 (42 U.S.C.A.§§5101-03 (West Supp. 1988), and the due process and equalprotection clauses of the 14th amendment (U.S. Const, amend. 14§ 1). Section 504, considered in chap. 6, is explicitly an antidiscriminationstatute; given a preexisting program or activity receivingFederal financial assistance, handicap cannot be the sole basisfor someone's being excluded from the program, denied benefitsunder the program, or otherwise subjected to discrimination inthe program. While the Child Abuse Amendments of 1984,considered in chap. 7, define an explicit standard of medical carefor children with disabilities, they do so in the context of a systemthat has been universally applied to require similar care forchildren without disabilities. The equal protection clause, consideredin chap. 8, creates a nondiscrimination standard applicablewhen a state actor that provides medical care or legal protectionto those without disabilities unwarrantably denies it to those withdisabilities precisely because of the disabilities. The constitutionalprocedural due process rights also considered in chap. 8 presupposean existing substantive benefit which they ensure may not bedenied by processes that fail to meet standards of fundamentalfairness.5"A judgment not to perform certain surgery because a personis black is not a bona fide medical judgment. So too, a decision notto correct a life threatening digestive problem because an infantscope of the Commission's purview. But if medicallyindicated kidney dialysis is withheld from a personwith a disability precisely because of the disability(and the disability itself does not make provision ofthe dialysis ineffective or dangerous), that raises acivil rights issue suitable for consideration by theCommission.A number of well-publicized cases has raisedconcern that discrimination based on disability maybe occurring in the provision of health services. 6Reports of such cases convinced the Commission toundertake consideration of the laws that do andshould govern, of the prevalence and context ofdiscriminatory practices, of the effectiveness of pastand present Federal Government activity in thisfield, and of options for future Federal Governmentpolicies.Oklahoma CaseDenial of treatment practices at Children*s Hospitalof Oklahoma 7 is currently the subject of alawsuit brought by the American Civil LibertiesUnion and the National Legal Center for theMedically Dependent and Disabled on behalf ofCarlton Johnson. 8 The black child of a "welfaremother," he was allegedly left to die by hospital staffat a "children's shelter" after he was born with spinabifida. 9has Down's Syndrome is not a bona fide medical judgment."United States v. Univ. Hosp., State Univ. of New York at StonyBrook, 729 F.2d 144, 162 (2d Cir. 1984) (Winter, J., dissenting).6Some of these cases also raise the concern that, within the classof people with disabilities, discrimination may also be occurringbased on economic status or social class. Frank Bowe, director ofthe American Coalition of Citizens with Disabilities, testified:"[I]t has been shown again and again. . .that persons who aredisabled who are members of minority groups are denied aneducation or are denied medical care or denied any kind ofopportunity to get vocational training." U.S. Commission onCivil Rights, Civil Rights Issues of Handicapped Americans:Public Policy Implications 39 (1980) at 28-29.7At the time of the alleged events that are the subject of thelawsuit, the hospital was named Oklahoma Children's MemorialHospital.8Paulus, Suit Filed in Oklahoma Alleging Twenty-Four InfantsDied After Being Denied Beneficial Medical Treatment, 1 Issues inL. & Med. 321, 324-25 (1986). Amended Complaint, para. 78, at13, Johnson v. Gross, No. CIV-85-2434-A (W.D. Ok. filed July14, 1987).9Spina bifida, also known as myelomeningocele or meningomyelocele,is a congenital disability consisting of a gap or improperopening through the vertebrae of the spinal column. It resultsfrom a failure of the developing spinal cord to roll into acompletely tubular structure during the early stages of pregnancy.Spina bifida manifesta, also called spina bifida aperta, resultswhen the spinal cord or some of the nerve tissue liningsurrounding the cord extend through the opening in the verte-19

Carlton Johnson was evaluated by a medical teamusing a procedure under which, as described in anearlier medical journal article, 24 out of 69 babiesanalyzed were denied surgery and died. 10 Infantsborn with spina bifida were evaluated by a "myelomeningoceleteam" shortly after birth. In this evaluation,the team members wrote, they were "influenced"by a quality of life formula: QL = NE X(H+S). In this formula:QL is quality of life, NE represents the patient's naturalendowment, both physical and intellectual, H is thecontribution from home and family, and S is the contributionfrom society. 11Based on the assessment, the team recommended tothe parents that the infant be given either vigorousor supportive care. Vigorous care involved, at aminimum, closing the spinal lesion. Supportive care,by contrast, consisted of a "regular followup.. .until death or until a decision to treat thechild more aggressively is made." 12 The teammembers acknowledged that "treatment for babieswith identical [degrees of mental and physicalbrae. The protruding tissues often form a fluid-filled sac on theinfant's back. In 96 percent of the cases of spina bifida manifesta,the spinal cord itself protrudes through the gap in the vertebrae.Spina bifida involves various degrees of (1) muscle weakness andparalysis below the opening; (2) sensory loss below the opening;(3) hydrocephalus [see note 14, infra] in about 70 percent of thecases; and (4) bowel and bladder incontinence. H. Swinyard, TheChild with Spina Bifida 5 (1980).According to Dr. David McLone, head of Pediatric Neurosurgeryat Chicago Children's Memorial Hospital, "Spina bifida hasbeen referred to as the most complex disease which is compatiblewith survival." Protection of Handicapped Newborns: HearingBefore the United States Commission on Civil Rights 6 (vol. I)(1985). At least 6,000 children are born with spina bifida eachyear in the United States. Id.Dr. McLone testifed concerning the typical technical context oftreatment decisions concerning spina bifida:The problem arises that if they are not operated on withina few days of life, they will acquire a potentially lethalinfection, and if they are left unoperated on, approximatelyhalf of the children, in most studies, will die. If their back isrepaired and closed, then about 90 percent of the childrenwill go on to develop rapidly progressive hydrocephalus andrequire a second operation to install a shunt, a small tube todrain the fluid from their brain into another brain cavity.Id. at 6. See note 14 infra for a discussion of hydrocephalus.10Gross, Cox, Tatyrek, Pollay, & Barnes, Early Management andDecision Making for Treatment of Myelomeningocele, 72 Pediatrics450 (1983).» Id. at 452.12Id. at 454.13Id. at 456.14Paulus, supra note 8, at 324. Sherwood, Who Lives, WhoDies?—Part 1, Cable News Network Documentary (Feb. 21,1984).disability] could be quite different, depending on thecontribution from home and society." 13In the case of Carlton Johnson, the medical recordstated:"neurosurgery [was] not enthusiastic about shunting thechild and closing the defect." The medical records statedthat information was given to Sharon Johnson, his mother,and that she would make the final decision betweentreatment and nontreatment. Ms. Johnson, however, saidthat "the only thing they told me was about a shunt, andthis, you know, after they told me about six months, thathe would live six months without it, and then with it, ayear, and I just figured, what's the sense in—he alreadysuffers, so why should he suffer anymore?" 14Carlton was accordingly sent to a children'sshelter, where he developed severe respiratorydistress, periods of cessation of breathing, an earinfection, and dehydration. When he was returned toChildren's Hospital of Oklahoma:Physician's orders stated that there were to be no laboratorytests to monitor his condition, no intravenous fluids tocorrect the dehydration, and no antibiotics for the earinfection. If Carlton were to suffer a cardiopulmonaryHydrocephalus—which can occur in combination with spinabifida or independently-is an abnormal accumulation of fluid inthe ventricles (cavities) of the brain. It results from an imbalancebetween production and absorption of cerebrospinal fluid thatflows through the brain and spinal cord. Normally the fluid isproduced by cells in the ventricles, passes to the outer surface ofthe brain and to the spinal cord, and is eventually absorbed intothe bloodstream. When the pathways for cerebrospinal fluid floware obstructed or incomplete, production exceeds absorption andthe fluid pressure can build up. Increased fluid pressure in thebrain can cause enlargement of the head, compression of thebrain, prominence of the forehead, mental deterioration, andconvulsions. The compression of the brain can be so severe thatan X-ray will show only a thin ribbon of brain tissue pressed upagainst the inside of the skull. Swinyard, supra note 9, at 18.Hydrocephalus without spina bifida has a mortality rate of 50 to60 percent if untreated. March of Dimes Birth Defects Foundation,Incidence of Selected Birth Defects 2 (1984).Shunting is the primary treatment for hydrocephalus. It consistsof the implantation of a flexible tube (the shunt) into a ventricle ofthe brain to permit drainage of the excess fluid. The tube is passedthrough a small opening in the skull and then underneath the skinfrom the head to some other part of the body. The drainage endof the tube may be placed in the heart area, in the abdomen, or insome other body compartment. The most common shuntingprocedure links the ventricle to the abdomen; it is referred to as aventriculo-peritoneal shunt.The shunt contains a one-way valve to prevent a reversal of flow.A properly operating shunt is highly successful in channelingaway excess cerebrospinal fluid and preventing the buildup ofpressure in the head. The recovery of brain shape and size can bequite dramatic: within 2 weeks of installation, special X-rays mayshow the brain to have returned to a nearly normal shape.Swinyard, supra note 9, at 17-18.20

arrest, he was not to be put on a respirator and no drugswere to be used. 15Nevertheless, Carlton managed to survive. Eventually,after a television investigation into denial oftreatment at the hospital and children's shelter, hewas given the lifesaving surgery he had been denied.Bloomington, Indiana, Infant Doe CaseProbably more than any other single event, theInfant Doe case focused the attention of the Nationon denial of treatment to children born with disabilities.For one dramatic week in the spring of 1982, asthe public followed the increasingly desperate effortsof the potential adoptive parents and the child'sguardian ad litem to save his life, national newspaperswrote of the legal, ethical, and social ramificationsof the withholding of lifesaving surgery, food,and water from a Bloomington, Indiana, baby. 16The child was born on April 9, 1982, with atracheoesophageal fistula. 17 The most significantaspect of the condition is that the child cannot takenourishment normally. Left without surgery, a childwill die. This condition, clearly life threatening, maybe corrected by an operation that, performed early,has better than a 90 percent chance of success. 18 ButInfant Doe differed from other children with a15Paulus, supra note 8, at 325.1SSee, e.g., McConnick & Tribe, Infant Doe: Where To Draw theLine, Washington Post, July 27, 1982, at A15; "Private" Death,New York Times, Apr. 27, 1982, at A22; Will, The Killing WillNot Stop, Washington Post, Apr. 22, 1982, at A29.17In about 1 of every 3,000 to 4,500 live births, the esophagus isincomplete, and the upper part of the esophagus is not connectedto the lower part. This condition is called esophageal atresia. Inabout three-fourths of cases of such atresias, the incompleteesophagus (the tube connecting the mouth with the stomach) islinked to the trachea (windpipe). This latter condition is referredto as a tracheoesophageal fistula. Nelson, Textbook of Pediatrics1041 (1979). It occurs in about 1 of 5,000 births. March of Dimes,supra note 14, at 3.Atresia of the esophagus prevents food or liquids from getting tothe child's stomach. A tracheoesophageal fistula can cause theaspiration of stomach juices if the lower part of the esophagus isjoined to the trachea, and aspiration of food and liquids taken bymouth if the upper part of the esophagus is connected to thetrachea. These conditions are somewhat more common in babieswith Down syndrome than in other children. Each is lethal ifuntreated, and they are both considered surgical emergencies.Nelson, supra, at 1041.18Bannon, The Case of the Bloomington Baby, Hum. Life Rev.,Fall 1982, at 63, 67.19Down syndrome is characterized by the presence of threeinstead of the normal two of the human chromosomes designatedas number 21. Consequently, Down syndrome is also calledTrisomy-21. It is characterized by a small flattened skull, flatnose, unusual slanting of the eyes, a protruding, furrowed tongue,a short, thick neck, short broad hands with small fingers thattracheoesophageal fistula because he also had Downsyndrome, a congenital disability usually producingsome degree of mental retardation. 19Although pediatricians called into the case recommendedimmediate transfer of Infant Doe to ahospital equipped to provide surgery, 20 the obstetricianwho had delivered the child:insisted upon. . .pointing out to the parents that if thissurgery were performed and if it were successful and thechild survived, that this still would not be a normal child.That it would still be a mongoloid, a Down's syndromechild with all the problems that even the best of themhave. That they did have another alternative which was todo nothing. In which case the child [would] probably liveonly a matter of several days and would die of pnuemoniaprobably. . . .Some of these children. . .are mere blobs. 21Based on what the obstetrician told them, theparents of Infant Doe agreed not to authorizesurgery, food, or water for the child. But nurses atthe hospital protested, 22 and the hospital agreed toplace the matter before a court, while refusing totake any position on what course should be followed.A judge came to the hospital for a lateevening session on Saturday, April 10, 1982. Thehearing was not recorded, 23 and no guardian adlitem was appointed for the child. 24 The judge ruledcurve inward, short, wide feet with a gap between the first andsecond toes, short stature, sparse hair, low voice pitch, belowaveragemuscle tone, a tendency to hearing impairments andrespiratory disorders, and mental retardation. While persons withDown syndrome exhibit a combination of several of thesecharacteristics, it is rare for any one individual to exhibit all ofthem. Mental development is usually retarded, generally in themoderate to severe range, although it is possible (albeit unusual)for an individual with Down syndrome to have average or evensuperior intelligence. R. Burgdorf, Jr., The Legal Rights ofHandicapped Persons 39 (1980).20In re Infant Doe, No. GU 8204-004A, slip op. at 2 (MonroeCounty Cir. Ct. Apr. 12, 1982), petition for writ of mandamus andprohibition denied sub nom. State ex rel Infant Doe v. MonroeCircuit Court, No. 482 S 140 (Ind. Apr. 14, 1982), appeal dismissedsub nom. In re Infant Doe, No. 1-782A 157 (Ind. Ct. App. Feb. 3,1983), cert, denied 464 U.S. 961 (1983), reprinted in 2 Issues in L. &Med. 77, 78 (1986).21Dr. Walter Owens, quoted in Petition for Writ of Cert, at 8-9,Infant Doe v. Bloomington Hosp., 464 U.S. 961 (1983).22Horan & Balch, Infant Doe and Baby Jane Doe: MedicalTreatment and the Handicapped Newborn, 52 Linacre Q. 45, 51(1985).23Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 72-73 (vol. II) (1986) (testimonyof John G. Baker, Monroe County Superior Court, Bloomington,Ind.).24In re Infant Doe, No. GU 8204-004A, slip op. (MonroeCounty Cir. Ct. Apr. 12, 1982), reprinted in 2 Issues in L. & Med.77, 79 (1986).21

"that Mr. and Mrs. Doe, after having been fullyinformed of the opinions of two sets of physicians,have the right to choose a medically recommendedcourse of treatment for their child in the presentcircumstances." 25 The judge later wrote: "It is aharsh view that no life is preferable to life, but thegreat weight of the medical testimony at the hearingI conducted was that even if the proposed surgerywas successful, the possibility of a minimally adequatequality of life was nonexistent. The physiciansin attendance supplied the medical judgment." 26The Indiana Supreme Court refused to overturn theruling, and the child died of pneumonia 6 days afterbirth while attorneys were en route to file a petitionfor review by the United States Supreme Court. 27Commission ApproachThis is not the first report in which the UnitedStates Commission on Civil Rights has dealt withmedical discrimination against people with disabilities.28 In its 1983 report, Accommodating the Spectrumof Individual Abilities, the Commission wrote:Handicapped people. . .face discrimination in the availabilityand delivery of medical services. While occasionaldenials of routine medical care have been reported, amuch more serious problem involves the apparent withholdingof lifesaving medical treatment from individuals,frequently infants, solely because they are handicapped.Recently, widely publicized denials of medical treatmentto handicapped infants have occurred in Indiana, Illinois,and California. 29On May 1, 1984, the Commission approved inconcept a hearing to obtain testimony from the legal,medical, and academic communities, from representativesof civil rights organizations, including thoseadvocating on behalf of people with disabilities, andfrom the general public on the subject of medicaltreatment accorded to or withheld from newbornchildren with disabilities, with a special focus on theapplicability of section 504 of the Rehabilitation Actof 1973. 30 In preparation for the hearing, staffconducted a literature review, legal research, andinterviews with experts. The hearing took place25Id. at 3, 2 Issues in L. & Med. at 80.28J. Baker, June 8, 1982, Letter of Judge John Baker toAnonymous Person, 2 Issues in L. & Med. 81, 82 (1986). See chap. 3for an examination of the view that people with Down syndromelack a minimally adequate quality of life.27Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 204-05 (vol. II) (1986) (testimonyof Walter Owens, M.D., Bloomington Obstetrics and Gynecology,Inc.).22June 12-14, 1985, in Washington, D.C. Forty-threewitnesses testified, including specialist physicians,representatives of medical organizations, parentswho had been involved in treatment decisionmakingconcerning their children born with disabilities,representatives of disability groups, ethicists, medicaland other personnel involved in hospital ethicscommittees, hospital administrators and supportpersonnel, and current and former staff of theexecutive and legislative branches of the FederalGovernment.The Commission held a second hearing, also inWashington, D.C, on June 26-27, 1986. Testimonywas received from attorneys and disability rightsadvocates assessing the then-recent U.S. SupremeCourt decision limiting Federal investigations undersection 504 of denial of treatment to children withdisabilities, 31 from academicians and an investigativejournalist on the extent of discrimination and pervasivenessof discriminatory attitudes, from physiciansand a judge who had been involved in denial oftreatment about the context and rationales for thatdenial, from people with disabilities about theirperspectives on denial of treatment, and from anacademician and a Federal official about the potentialthat exists for people with disabilities.Following the hearings, staff conducted significantadditional research and examined agency documentsand data.The Commission employed a distinguished groupof consultants, drawn from a variety of fields andperspectives in the area of disability, to assist it inproviding research leads and in reviewing drafts ofthis report. They included Gunnar Dybwad, emeritusprofessor of human development at the HellerSchool, Brandeis University, and visiting professorat the University of Syracuse; James Ellis, professorof law at the University of New Mexico; FrankLaski, chief counsel for the Public Interest LawCenter of Philadelphia; Reed Martin, professor oflaw at the University of Texas-Austin; MargueriteMikol, president of Sick Kids Need Protection(SKIP), the national organization of parents of28When referring to disabilities or to people with disabilitiesthroughout this report, except in quotations or when makingdirect reference to legal or medical terminology, the Commissionhas sought to use language defined as appropriate in the standardsissued by the Research and Training Council, Writing andReporting About People with Disabilities (1986).29U.S. Commission on Civil Rights, Accommodating theSpectrum of Individual Abilities 35 (1983).3029 U.S.C.A. §794 (West Supp. 1988).31Bowen v. Am. Hosp. Ass'n, 476 U.S. 610 (1986).

technology-assisted children; Charles Rice, professorof law at Notre Dame University School of Law;H. Rutherford Turnbull, professor of law andspecial education at the University of Kansas;Colleen Wieck, executive director of the MinnesotaGovernor's Planning Council on DevelopmentalDisabilities; and Robert Williams, deputy director ofthe Pratt Monitoring Program of the D.C. Associationfor Retarded Citizens. The Commission alsoemployed Thomas Nerney, president of the DisabilityInstitute and currently executive director of theAutism Society of America, first as a consultant andlater as an expert.In accordance with statutory 32 and regulatory 33requirements, draft portions of the report which theCommission determined tended to defame, degrade,or incriminate persons or institutions were providedto them for comment. Verified answers received inresponse are reprinted as appendix D to this report.Commission policy also requires that relevant portionsof its draft reports be provided to affectedagencies for comment. Thus, relevant sections ofthis report were provided to State child protectiveservices agencies; to the U.S. Department of Healthand Human Services' Office of Human DevelopmentServices, Office for Civil Rights, and Office ofInspector General; and to the Civil Rights Divisionof the U.S. Department of Justice. Commentsreceived from the Federal agencies are reprinted inappendix E to this report. Answers and commentswere carefully reviewed and, when appropriate,modifications were made in the final report.3242 U.S.C.A. § 1975a(e) (West Supp. 1988).3345 C.F.R. §702.18 (1987).34U.S. Commission on Civil Rights, Civil Rights Issues ofHandicapped Americans: Public Policy Implications 230, 230(1980) (statement of Judith E. Heumann, Deputy Director,Center for Independent Living, Berkeley, California). The InternationalCenter for the Disabled estimates that in 1985 there wereapproximately 27 million individuals in the general populationwho were age 16 or older and had a disability. The ICD Surveyof Disabled Americans: Bringing Disabled Americans into theMainstream iii (March 1986), conducted for ICD—InternationalCenter for the Disabled, in cooperation with the National Councilon the Handicapped, by Louis Harris and Associates, Inc. TheU.S. Department of Education estimates that, in 1986-87,"4,421,601 children with handicaps from birth to age 21 wereserved" by the special education system. U.S. Department ofEducation, Tenth Annual Report to Congress on the Implementationof The Education of the Handicapped Act 3 (1988).In line with Ms. Huemann's testimony quoted above, in 1983 theCommission stated:A Legacy of DiscriminationTreatment decisions resulting in the denial oflifesaving medical treatment to children with disabilitiescannot be viewed in isolation. Together withdiscrimination in employment, barriers to access totransportation and physical facilities, and a traditionof institutionalization, these decisions may be viewedin the context of longstanding attitudes and practicestoward people with disabilities.Eight years ago, Judith E. Heumann, then deputydirector of the Center for Independent Living inBerkeley, California, told the Commission:I belong to the largest civil rights group in the country.The statistics, while they vary, go anywhere from 35million to 47 million and up, and yet our civil rights groupstill has not yet received the status within the nondisabledcommunity as a civil rights group representing a body ofoppressed people in this country who have thus far beenunable to achieve our place within this society, based onthe failure to provide appropriate services and probablymost importantly based on the failure of people in thiscountry to believe that disabled individuals are in factpeople who have the ability to achieve and have the desireto achieve. I think it is still all too common that disabledpeople in this country are perceived of as people who aresick and who are in need of being taken care of, as opposedto people who have different needs and whose needs, infact, can be met, which will allow us to achieve ourgoals. 34Historically, the notion that people with disabilities"are sick and. . .in need of being taken care ofhas found outlet not only in paternalistic approachesthat foster dependency but also in the view that such"sickness" imposes a burden too great to be borneeither by the person with the disability or by societyas a whole. As Frank Bowe, then director of theStructuring society's tasks and activities on the basis ofassumptions about the normal ways of doing things reflectsthe idea that there are "normal" people who can participateand there are people with physical and mental handicapswho cannot. When people are classified as either handicappedor normal, the only questions are who falls intowhich category and what criteria are used. A close examinationof this handicapped-normal dichotomy, however, revealsfundamental flaws: it ignores the fact that abilitiesoccur as spectrums, not as all-or-nothing categories, anddiscounts the importance of social context. The resultingdistortion of reality is the wellspring of handicap discrimination.U.S. Commission on Civil Rights, Accommodating the Spectrumof Individual Abilities 93-94 (1983). That is not to say that there isnot a standard against which the health of individuals is measured.Rather, the point to be made is that categorizing persons basedupon disabilities raises the very legitimate concern that it notobscure the extent to which such persons may in other respectshave greater abilities than persons not in that category.23

American Coalition of Citizens with Disabilities,told the Commission in 1980:Within the Colonies, and later the States, communitymores recognized indolence as a prime evil. Becausepopular perceptions equated disability with inability,existence of a disability appeared reason enough to deny aperson the right to participate in societal life. 35In the late 19th and early 20th centuries, acceptanceof the purported science of eugenics resultedin the view that people with disabilities were aburden to be regarded as a menace. The AmericanCoalition of Citizens with Disabilities has summarizedthis history in a brief submitted to the UnitedStates Supreme Court: 36Th[e] stark history is. . .of the regime of segregationand degradation which by force of state statute deemedretarded people to be "unfit for citizenship." 37 In everystate in inexorable fashion handicapped persons werelegislatively declared a "menace to the happiness. . .of thecommunity," 38 "unfitted for companionship with otherchildren," 39 a "blight on mankind" 40 whose very"presence" 41 in the community was "detrimental tonormal" people. 42Official policy was to "purge society" 43 of these "antisocialbeings," 44 to "segregate [them] from the world," 45so that they "not. . .be returned to society" 46 since a"defect. . .wounds our citizenry a thousand times morethan any plague." 47 Disabled persons simply did not havessF. Bowe, An Overview Paper on Civil Rights Issues ofHandicapped Americans: Public Policy Implications, in U.S. Commissionon Civil Rights, Civil Rights Issues of HandicappedAmericans: Public Policy Implications 7, 9 (1980).38Amicus Curiae brief for the American Coalition of Citizenswith Disabilities, Bowen v. Am. Hosp. Ass'n, 476 U.S. 610 (1986).The text of footnotes 37 through 58 are reprinted as theyappeared in the brief.371920 Miss. Laws 294, ch. 210, §17.381919 Ala. Acts 739, No. 568, §7.391909 Wash. Laws 260, tit. I, subch. 6, §2.40Report of the Vermont School for the Feeble-Minded 17-18(1916).41Report of the Rhode Island School for the Feeble-Minded 21(1910).42California Board of Charities and Corrections, First BiennialReport 41 (1905).43Wisconsin Board of Control, Biennial Report 321 (1898).44Report of the Commission on Segregation, Care and Treatmentof Feeble-Minded and Epileptic Persons in Pennsylvania 43Minded Youth 14 (1914).46First Biennial Report of the Board of Commissioners ofNebraska Institutions 10 (1915).47Fourth Biennial Report of the Board of Trustees of the UtahState Training School 3 (1938).48Fourth Biennial Report of the South Dakota Commission forSegregation and Control of the Feeble-Minded 3 (1932).(1913).45Thirty-Sixth Annual Report of the Indiana School for Feeble-the "rights and liberties of normal people." 48 The Districtof Columbia Board of Charity urged Congress, and itagreed, to authorize putting handicapped people awaysince they were "not much above the animal." 49 Handicappedpeople were "not far removed from the brute," 50not quite persons, but "by-products of unfinished humanity"51 who were to be segregated for the benefit "ofsociety," 52 "to relieve society of the 'heavy economic andmoral losses arising from the existence at large of theseunfortunate persons.' " 53 It was important to find a "wayof getting rid of these kinds of cases." 54 Governmentreports labeled handicapped people "a parasitic predatoryclass," 55 a "danger to the race," 56 "a blight and amisfortune both to themselves and to the public" 57 whoserole "in discounting social progress is by far the mostpotent influence for evil under which society is strugglingtoday." 58As Justice Thurgood Marshall noted:Fueled by the rising tide of Social Darwinism, the"science" of eugenics, and the extreme xenophobia ofthose years, leading medical authorities and others beganto portray the "feebleminded" as a "menace to society andcivilization. . .responsible in large degree for many, if notall, of our social problems." 59Attitudes toward individuals with a disabilitywere harsh. One article in the Massachusetts MedicalSociety magazine in 1912 stated that "[t]he socialand economic burdens of uncomplicated feeble-mindednessare only too well known. The feeble-mindedare a parasitic, predatory class, never capable of self49District of Columbia Appropriations Bills: Hearings Before theComm. on Appropriations, 67th Cong., 2d Sess. 96 (Jan. 13, 15,1932).50Mental Defectives in Virginia: Special Report of the Board ofCharities and Corrections to the General Assembly of 2926, at 20.51Baldwin, The Causes, Prevention and Care of Feeble-MindedChildren, in Proceedings of the Texas Conference of Charities andCorrections at Its Second Annual Meeting 87 (1912).s2See, e.g., 1919 Ga. Laws 379, No. 373, §3.531915 Tex. Gen. Laws 143, ch. 90, §§1,2.54Connecticut School for Imbeciles: Hearings on H.B. No. 644Before the Joint Standing Committee on Humane Institutions 20(typed transcript, Feb. 25, 1915) (statement of Mr. Kerner ofWaterbury).55Report of the Vermont School for Feeble-Minded Children17-18 (1916).56Report of the Legislative Visiting Committee, Wise. Sen. J. 263(48th Leg. Sess.).57Thirteenth Biennial Report of the Kansas School for Feeble-Minded Youth 12 (1906).58Mental Defectives in Indiana: Third Report of the Committeeon Mental Defectives 6 (1922).59City of Cleburne v. Cleburne Living Center, 473 U.S. 432,461-62 (1985) (Marshall, J., concurring) (quoting H. Goddard,The Possibilities of Research as Applied to the Prevention ofFeeblemindedness, in Proceedings of the National Conference ofCharities and Correction 307 (1915)).24

support or of managing their own affairs." 60 AChicago ordinance provided that no person "who isdiseased, maimed, mutilated or in any way deformedso as to be an unsightly or disgusting object orimproper person" could be found "in or on thepublic ways or other public places," and that nosuch person could "expose himself to public view." 61In Heredity and Human Progress, a physicianadvocated that children with severe disabilities,including "idiots," most "imbeciles," and "epileptics"should be eliminated for the safety of theNation through the use of a painless gas. 62In 1941 a physician addressing a luncheon duringthe annual meeting of the American PsychiatricAssociation said: "[W]e have too many feeblemindedpeople among us. . . .The idiot and the imbecileseem to me unresponsive to the care put upon them.They are not capable of being educated; nor cansuch defective products ever be made to be so." 63He spoke "in favor of euthanasia for those hopelessones who should never have been born—Nature'smistakes," urging that when a "competent medicalboard. . .acting. . .on the application of the guardiansof the child, and after three examinations of adefective who has reached the age of five or more,should decide that that defective has no future norhope of one. . .it is a merciful and kindly thing torelieve that defective—often tortured and convulsed,grotesque and absurd, useless and foolish,and entirely undesirable—of the agony of living." 64An editorial in the issue of the American Journal ofPsychiatry that published the physician's addresssuggested that the attitude of parents who opposedelimination of their "idiot" children was a fit subjectfor psychiatric analysis and correction:It is difficult to conceive how normal affection can be feltfor a creature incapable of the slightest response; andexaggerated sentimentality or forced devotion which canserve no possible purpose can hardly be looked upon asdesirable. . . .[T]he psychiatric problem. . .[of] the "fondness" of theparents of an idiot and their "want" that he should be kept60A.M. Clark and A.D.B. Clarke, eds., Mental Deficiency: TheChanging Outlook, 16-17, quoted in Evans, The Lives ofMentally Retarded People 43 (1983).« Formerly Chicago, 111., Mun. Cod. §36-34 (1966).« D. McKim, Heredity and Human Progress 189, 193 (1900).83Kennedy, The Problem of Social Control of the CongenitalDefective, 49 Am. J. Psychiatry 13, 13 (1942).alive. . .we believe deserves study—the extent to which itexists, in fact and not merely as a generalization of opinion,what underlying factors. . .are discoverable, whether itcan be assessed as healthy or morbid, and whether in thelatter case it is modifiable by exposure to mental hygieneprinciples. 65Although contemporary justifications for denialof treatment to children with disabilities are typicallyless harshly worded, a clear continuity of thoughtcan often be found. Contemporary bioethicist PeterSinger writes:When the death of a defective infant will lead to the birthof another infant with better prospects of a happy life, thetotal amount of happiness will be greater if the defectiveinfant is killed. The loss of happy life for the first infant isoutweighed by the gain of a happier life for the second. 86A noted authority on child abuse and neglect arguesthat the state should intervene to save the life of achild only when the child would have a "life worthliving or a life of relatively normal healthygrowth." 67The complex and difficult questions surroundingtreatment decisionmaking for children with disabilitiesmust be approached with sensitivity to theeffects of this background of dehumanizing attitudesconcerning people with disabilities. Dehumanizingstereotypes are common to virtually every form ofdiscrimination, including that based on disability. 68This report thus begins with an examination of thecontext of such decisionmaking in a chapter thatexplores the parent-physician relationship and thesort of information about disability sometimes providedparents by physicians. The next chaptersconsider what the evidence suggests about thepotential quality of life of people with disabilities incontrast to what are often inaccurate assumptionsabout their quality of life. The report then describesin detail the history and current status of legalstandards governing medical treatment for thosewith disabilities. The degree to which these standardsare being implemented and the performance ofgovernmental and nongovernmental institutions inenforcing them are assessed. The report ends withfindings of fact and recommendations for the future.84Id. at 14.85Euthanasia, 99 Am. J. Psychiatry 141, 143 (1942).86Peter Singer, Practical Ethics 134 (1979).67J. Goldstein, Medical Care for the Child at Risk: On StateSupervention of Parental Autonomy, 86 Yale L.J. 645, 651 (1977).68See generally U.S. Commission on Civil Rights, Accommodatingthe Spectrum of Individual Abilities 22 (1983).25

Chapter 2The Physician-Parent Relationship andTreatment/Nontreatment DecisionmakingMuch of the popular and scholarly debate overthe question of denying treatment to children withdisabilities assumes a conflict between the rights ofparents to make a choice concerning medical treatmentfor their child and whatever rights the childmay have to lifesaving treatment despite the viewsof the parents. However, testimony before theCommission suggests that this is an artificial conflict,because it is normally inaccurate to assume that it issolely the parents of newborn children who actuallydecide whether to provide or withhold lifesavingmedical treatment. In the words of Dr. RosalynBenjamin Darling: "In the decisionmaking situation,parents are likely to feel confused when confrontedwith a disability about which they know little. As aresult, they rely heavily on the information andattitudes communicated to them by the physician. Inmost cases, the parents' decision reflects the physician'sdecision." 1One Commissioner summarized the evidenceheard by the Commission:To the parents who testified, it was clear. . .that mostparents are indeed influenced primarily by the recommendationsof their physicians and that those recommendationscan be and sometimes are based on a totallyerroneous view of the child's abilities and future quality oflife. 21Protection of Handicapped Newborns: Hearing Before'the UnitedStates Commission on Civil Rights 181-82 (1986) (vol. II) (testimonyof Dr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc). Accord id.at 41-42 (testimony of Prof. H. Rutherford Turnbull, Departmentof Special Education, University of Kansas) ("I dispute thepredicate. . .that parents make the decision. I think that kind ofaseptic view runs contrary to the published literature in the healthFactors that Impair Independence inParental DecisionmakingIt is important to understand the situation inwhich most parents suddenly confronted with achild with a disability find themselves. AssistantSecretary Madeleine Will pointed out:A parent may have had no experience with a personwith a disability, and suddenly, at a moment's notice, findshimself or herself at an existential cliff, and one is verymuch dependent on this physician who is in some waygoing to protect you, one imagines, from a cataclysm, andone is dependent on the quality of information that he orshe provides. 3The period surrounding birth is one of considerablestress and emotion, and for nondisabled parents, thebirth of a child with a disability typically comes as agreat shock. It frequently produces feelings ofdepression, grief, anger, and guilt. Because most newparents of a child with a disability have had little orno interaction with people who have disabilities,their reactions are often dominated by the stigmatizationof people with disabilities to which they havebeen pervasively and sometimes subconsciouslysubjected for most of their lives. This stigmatizationmay produce in their minds a picture of the child'scondition and prognosis that has little basis in fact.The Spina Bifida Association of America (SBAA)emphasized the problems:field and it also runs contrary to some of what I have been told byphysicians who are neonatologists, pediatric surgeons, and pediatricians.").2Id. at 5 (opening statement by Commissioner Robert A.Destro).3Id. at 92 (testimony of Madeleine Will, Assistant Secretary forSpecial Education and Rehabilitative Services, U.S. Departmentof Education).26

Parents of a newborn spina bifida child are expected tomake rational life and death decisions when what wasexpected to be a joyous time has instead become anoccasion for confronting the concerns of the unknown.The decisions must be made quickly and under greatstress. Dr. Rosalyn Darling, a member of SBAA's ProfessionalAdvisory Committee, has written that decisions areoften made by physicians and individuals who have verylittle contact with the disabled community; consequently,decisions concerning treatment are often "stacked" againstthe newborn with a problem. 4Because the parents typically lack knowledge andare in such a state of stress, they turn for informationand recommendations to the physicians caring fortheir child. Medical sociologist Rosalyn BenjaminDarling has done several studies of the relationshipbetween the physicians and parents of children withdisabilities. She noted:[P]arents are very vulnerable immediately after havinggiven birth to a handicapped child. The hospital is nottheir natural habitat, and the medical milieu is frighteningto them. They know very little about birth defects ingeneral and their child's defect in particular. They turnreadily to the "experts" who can help them understandwhat is happening to them. They have learned to trustphysicians and to respect their opinions. Not surprisingly,they often defer to the physician's expertise in decidingwhether their child is to be medically or surgicallytreated—or allowed to die. 5Evan Kemp, a lawyer with a disability whodirects the Disability Rights Center, made a similarpoint:I think that at time of birth, when parents are verydistraught, when they find that they don't have a childthat measures up to the children of their friends, they'revery impressionable at that time and under a great deal ofstress, and I think that doctors have tremendous power toinfluence them, and I think they do influence them. . . . 6* Quoted in 49 Fed. Reg. 1649-50 (1984).5Darling, Deck Often Stacked Against Defective Newborns,American Medical News, Jan. 14, 1983, at 23. Cf. the descriptionin an anonymous letter from a parent submitted for the record byDr. Walter Owens:[A]t delivery I just remember being shocked that I, as ayoung, healthy person who avoided all artificial ingredientsduring my pregnancy, ate sensibly, could have given birth toan infant with multiple deformities. I didn't know anythingabout spina bifida, its consequences for the baby or thefamily; I guess I must have looked very bewildered as to thecorrect choice to make regarding surgery for a shunt, etc.You told me that if it were your decision, you probablywould not sign consent for surgery. You gave me a short, butcomplete description of what I could expect from surgery,quality of life. It was simply a presentation of facts. I decidedagainst sustaining measures, the baby died in a shorttime. . . .Influence of PhysiciansDr. Anne Fletcher, a neonatologist at Children'sHospital National Medical Center, told the President'sCommission for the Study of Ethical Problemsin Medicine and Biomedical and BehavioralResearch:[I]t is important, that we make a recommendation of whatis to be done. That is not to say that we don't feel theparents have a decision to make, but it is a decision with usand not a decision on their own. And we usually have feltit is our duty to make a decision, and then have them agreewith us, rather than to have them feel they made thedecision completely on their own. 7Another physician, who specializes in the treatmentof spina bifida, has written:Invariably, in these circumstances, families make a decisionbased on information that is given to them by thepediatrician, pediatric neurologist, or neurosurgeon. Thegreat likelihood is that any one of these physicians willhave his/her own philosophy concerning what should bedone and, therefore, whether intentional or unintentional,the information will be skewed. It is, therefore, thephysician that is responsible for the immediate decision foror against surgery. 8Do parents or physicians typically initiate discussionof denying lifesaving treatment? In his team'sstudy of approximately 150 cases of denial oftreatment, investigative journalist Carlton Sherwoodtestified:[N]ot one parent we interviewed—and we spoke withseveral dozen who were personally involved on both sidesof the treatment issue—not one said they took anyinitiative in the decisionmaking process; invariably, it wasthe physician, often teams of physicians, who approachedthe parents and recommended, strongly and persistentlysometimes, for a course of treatment or nontreatment.Anonymous letter to Dr. Walter Owens (Aug. 20, 1983) (availablein files of U.S. Commission on Civil Rights).6Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 29 (1986) (vol. II) (testimony ofEvan J. Kemp, Jr., Director, Disability Rights Center).7Testimony of Dr. Anne Fletcher, Transcript, SixteenthMeeting of the President's Commission for the Study of EthicalProblems in Medicine and Biomedical and Behavioral Research17 (Jan. 9, 1982), quoted in President's Commission for the Studyof Ethical Problems in Medicine and Biomedical and BehavioralResearch, Deciding to Forego Life-Sustaining Treatment 210-11(1983).8Epstein, Meningomyelocele: "Pitfalls" in Early and Late Management,30 Clinical Neurosurgery 366, 366-67 (1982). Seegenerally National Legal Center for the Medically Dependent andDisabled, The Medical Treatment Rights of Children withDisabilities §5.02 (J. Bopp ed. 1987).27

In all but a few cases, the parents said they went alongwith their physician's recommendations and would havefollowed the same doctor's advice had his recommendationbeen different.All, and I emphasize all, the doctors we spoke withconfirmed this decisionmaking process. 9Professor Turnbull told the Commission,"[P]hysicians set the agenda. The person. . .whohas the ability to set the agenda has to a large degreethe ability to control the outcome." 10In an article in Clinical Pediatrics, Drs. StephenRagatz and Patricia Ellison wrote about their owncase conferences with parents "during which they[the parents] were asked directly to give an indicationof whether or not they concurred that supportbe withdrawn." 11 Coauthor Dr. Patricia Ellison, apediatric neurologist in private practice in Denverwho also holds an academic appointment, testifiedbefore the Commission. Asked whether her articlesuggested that "there was a preexisting opinion thatsupport be withdrawn and that the parents werethen asked whether they concurred or disagreed,"Dr. Ellison said: "There was not a decision [in anyof those cases] ever offered by the doctor thatsupport be withdrawn. However, it should be clearthat if the issue is being raised, this is a consideration9Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 50 (1986) (vol. II) (testimony ofCarlton Sherwood).10Id. at 58 (testimony of Prof. H. Rutherford Turnbull,Department of Special Education, University of Kansas).11Ragatz & Ellison, Decisions to Withdraw Life Support in theNeonatal Intensive Care Unit, 22 Clinical Pediatrics 729, 732(1983). The physicians wrote:We initially assumed that the decision to withdraw supportwas chiefly the [prerogative] of the physician, acting inaccordance with the parents' wishes. Decisions were madeafter full discussion with the parents. We subsequentlylearned that parents considered that they had made suchdecisions, and we became more willing to let the parentsmake them, in infants who were considered eligible for sucha decision by the physician. On occasion, quality of life issueswere raised by the parents prior to discussion initiated by thephysician.Id at 729-30 (citation omitted) (emphasis added).12Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 219-20 (1986) (vol. II) (testimonyof Dr. Patricia Ellison, Research Professor, Department ofPsychology, University of Denver). Appearing before the Commission,Dr. Ellison characterized as a "misrepresentation," id. at219, the view "that there was a preexisting opinion that supportbe withdrawn and that the parents were then asked whether theyconcurred or disagreed," id. (question by Ms. Hanrahan). Cf. thelanguage in another of her articles (Walwork & Ellison, Follow-upof Families ofNeonates in Whom Life Support Was Withdrawn, 24Clinical Pediatrics 14 (1985)):28in the doctor's mind as well. You are not going tohold conferences for those babies about whom thiswould not be an appropriate concern." 12 When shewas asked whether it is usually the parents or thehealth care personnel who initiate the question ofcontinuing lifesaving support, she testified thatsometimes it comes from one and sometimes fromthe other, but that when it comes from the parents:[w]e try to respond to the questions and needs of theparents, but would never have held a conference wherethis issue of support would be set up in the sense of adecisionmaking process, unless we as physicians felt thatthis was an appropriate case to do that. We might meetwith the parents and answer questions and say, "Weunderstand your worries, but look, at this time, thingsseem to be. . .[going] this way and this is not a time forsuch a conference." 13Physicians with a bent toward denial of treatmentcan be quite insistent in conveying negative information,as they were with the parents of Baby JaneDoe: "During her five months in the intensive carenursery, Dan and Linda would see their baby smileand ask hopefully if she were making progress. No,the doctors would respond, she wasn't." 14Physicians had urged Dan and Linda to place Keri-Lynn[Baby Jane Doe] in a home for the severely disabledshortly after birth. Instead, the parents took her home.[F]amilies were told, during the decision-making conference,that the decision would be made by the physician withconsideration of the families' wishes and thoughts. . . .Id. at 16.We. . .found that the parents accepted the responsibility forthe decision to withdraw support, even when the professionalstaff considered that the decision had been made by theprofessional staff, not by the parents.Id. at 20.In her testimony, Dr. Ellison said, "It should be also well-statedthat with parents who felt that this was really something that wasnot in keeping with their concerns, none of the support was everwithdrawn from such a child. We would never have consideredsuch a thing." Protection of Handicapped Newborns: Hearing Beforethe United States Commission on Civil Rights 220 (1986) (vol. II)(testimony of Dr. Patricia Ellison, Research Professor, Departmentof Psychology, University of Denver.)13Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 239 (1986) (vol. II) (testimonyof Dr. Patricia Ellison, Research Professor, Department ofPsychology, University of Denver). Cf. id. at 267 (testimony ofRobert R. Williams, Project Analyst, D.C. Association forRetarded Citizens) ("[O]ne wonders why parents with newbornswith severe disabilities are even put in a position of having tomake such decisions when they are clearly operating under somuch stress. Physicians often serve to exacerbate an alreadyhighly charged and tense situation by presenting the parents of aninfant with severe disabilities with life and death choices that theywould never, ever consider presenting to parents of a nondisabledchild.").14'Adorable' Baby Jane Doe Finally Is Home, MilwaukeeSentinel, May 25, 1984, pt. 1, at 8, col. 1.

"They said she'd only know pain and that she wouldn'trecognize us," Linda said. "If we had placed her in ahome, she would have been like they said. Now, she's outand doing things." 15Although parents may seek to do what they thinkis best for their children, their assessment of what isbest depends on the information they have. Nondisabledparents who are suddenly confronted with thebirth of a child with a disability are not likely toenter the decisionmaking process with a backgroundof adequate and accurate information. AdrienneAsch, who teaches social psychology at the CityCollege of New York, testified:[B]ecause parents of disabled children, and especiallydisabled newborns, rarely share this minority characteristic[of being a person with a disability],. . .they are in anextremely difficult position to advocate for that infant.The parents of other children with minority characteristicscan do this much better. They know what life holds instore for that infant and their child. They can advocateagainst those who would hurt their children for thoseminority characteristics, because even though they mayknow that life is fraught with problems, it is also going tocontain various joys.But the parents of a disabled infant, moments, days afterits birth, have very little such information. In fact, they arelikely to have been given information by physicians, bysocial workers, by any other professionals, by clergy, thatreinforces whatever stereotypes they have about the limitsand deficits and tragedy of so-called defective, deformed,damaged infants. 16There seems to be near unanimity, from healthcare personnel who support as well as those whooppose denial of treatment, that in all but a handfulof cases the manner and content of the medicalprovider's presentation of the issue will be decisivein determining the parental "decision." One nursehas written:Whether and to what extent such children are treatedcan be influenced by physicians and nurses. Suppose, forexample, the staff tells the parents, "It is possible tooperate on your baby and close his back, but his legs willstill be paralyzed and deformed. Most likely he will neverhave bowel or bladder control and will probably develop15Kerr, Baby Doe's Success^/] Progress Defying Prognosis, Newsday,Dec. 7, 1987, at 2, 23.16Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 125-26 (1986) (vol. II) (testimonyof Adrienne Asch, Adjunct Lecturer in Social Psychology,City College of New York). See also id. at 141 (testimony of MaryJane Owen, Director, Disability Focus, Inc.) ("Unfortunately,handicapped infants are born into alien families, families that havehydrocephalus, which may require many operations withpossible complications. Or, we can do nothing and allowhim to die." Would you be surprised if the parents optedfor death?On the other hand, a positive attitude can go a long wayin persuading parents to accept their baby. This has beenthe stance of our nursing staff. We encourage parents totouch, hold, feed, talk to, and play with their infant. Wetell them to bring in music boxes, toys, and, later, evenclothes. By focusing on the normal things the baby does,we foster a positive image of the child. For example, wemight say, "Look how strongly he sucks" and "See howtightly she holds your finger." We try to emphasize thattheir baby does things all babies do. 17One of the lead physicians involved in the selectivetreatment program at Children's Hospital ofOklahoma, 18 Dr. Richard Gross, has said: "I think ittakes a great deal of courage on the. . .[part] ofparents to say, in the face of a recommendation froma physician, that they wish to go counter to that.They certainly do not have the background at thetime the child is born to really know what isexpected." 19 Dr. Mildred Stahlman was even moredirect:I can persuade 99 percent of parents to my way of thinkingif I really work at it, even if I am 100 percent wrong. If Itell them in such a way that I appear concerned and that Iam knowledgeable and that I have their interest at heartand the interest of their. . .newborn baby, there is noquestion in my mind but that they will let me "cut off thatinfant's head." 20From a treatment perspective opposite to that of Dr.Gross, Dr. David McLone testified concerning hisexperience with parents of children with spinabifida:I have now treated about 300 newborns and had thismidnight discussion with about 300 families, and I havenot had one family, once fully informed of the availabilityand the likely outcome of treatment, who has refused tohave the back repaired at the time of birth.In my experience in the cases I am familiar with wherethe decision was made not to close the back, that decision,in essence, was made by the physician and by what he toldalready probably stated the only requirement they have of a childwas that it must be perfect. . . .").17Homer, Selective Treatment, 84 Am. J. Nursing 309, 309-10(1984).18See chap. 1 and text accompanying notes 7-15.19Take Two: Who Lives, Who Dies?—Part II (Cable NewsNetwork, Feb. 22, 1984), (Radio-TV Monitoring Service, Inc.,Transcript at 5).20Quoted in Patrick, Little Murders, 10 New Times 32, 36 (1978).29

the family, and the family went along with the decision ofthe physician not to close the back. 21The same picture emerged from testimony elicitedfrom those associated with health care consumers.The deputy director of the National InformationCenter for Handicapped Children and Youth, PatriciaMcGill Smith, described an instance in whichparents of a child with spina bifida received amedical recommendation of no treatment based onthat disability and "predictable mental retardation."They initially accepted this recommendation. "Herparents were loving, good people," Smith testified,"but they were operating on the directive of thedoctor who said, why sustain the life of someonewho will have two kinds of disabilities. . . .Thoseparents were given inaccurate information. . . ." Asthe leader of a parent-to-parent support group,Smith was called in to assist the parents. Sheprovided them with more accurate informationabout the prognosis for their child and the supportsystems available for them, and in time the parentschanged their mind. Today, the girl is alive, withouta trace of mental retardation. 22Betsy Trombino, the parent of a child withorthopedic disabilities, has worked for 6 years in thefield of parent support. She testified:We're asked to make decisions as to whether our childrenlive or die, and, yet, all the information is coming frompeople saying, he'll never do this, he'll never do that, he'snot ever going to go to school or walk or talk or even rollover, so why would you want him to live? 23Misinformation Among Medical PersonnelSpecial Education Professor Ruth Luckasson describedthe prevalence of misinformation amongmany health care personnel and the bioethicists whoadvise them:Regrettably, reports of the advances in special education,habilitation and rehabilitation have not yet receivedwide dissemination in either the popular media or theliterature of other professions. . . .[O]ur review of themedical literature and the literature of the new bioethicists21Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 19 (1985) (vol. I) (testimony ofDr. David McLone, Chairman, Division of Pediatric Neurosurgery,Children's Memorial Hospital, Chicago, 111.).22Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 254-55 (1986) (vol. II) (testimonyof Patricia McGill Smith, Deputy Director, National InformationCenter for Handicapped Children and Youth).23Id. at 263-64 (testimony of Betsy Trombino).24Id. at 97 (testimony of Prof. Ruth Luckasson, Department ofSpecial Education, University of New Mexico).revealed that typical physicians and bioethicists have littleor no familiarity with life possibilities or communityresources available to individuals who are born withhandicaps.Parents, who typically receive the information on thelife prospects of their disabled son or daughter from theirphysician, cannot uniformly expect information free offalse stereotypes and archaic prejudices. To the extent thatparents rely on such misinformation as they make life anddeath decisions about their sons and daughters, theirchildren's vulnerability to discriminatory treatment isaggravated. 24Surgeon General Koop testified:[I]t's very difficult for somebody to know, for example, asa pediatrician who sees only one or two of these in alifetime, if that, just how other parents have done innovativeand creative things, have rallied community support,have established organizations that are anatomically designedfor that particular defect; and therefore, he tends tobe a little less enthusiastic about what can be done than ifhe had all of this information at his hands. 25Dr. McLone took a similar position:The problem that I have noted and have been involvedin with the decisionmaking process has been primarilyignorance on the part of the physician who is firstconfronted with the child, who then misinforms thefamily, and based on inappropriate information, the familyusually makes, in my opinion, the right decision based onthat information. However, the information they havebeen given is so inconsistent and out of line with whatmost major centers in the United States are experiencing atthis time that the child is denied care based on misinformation.26Inaccurate stereotypes are quite pervasive; somuch so, indeed, that five members of the SupremeCourt have characterized the history of mistreatmentof people with mental disabilities as "grotesque."27Weight of Parental DecisionsIn light of this background, Professor Ellis testifiedthat frequently the parental agreement to foregolifesaving treatment for their newborn child with a25Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 12 (1985) (vol. I) (testimony ofC. Everett Koop, M.D., Surgeon General, U.S. Public HealthService).26Id. at 7 (testimony of Dr. David McLone, Chairman, Divisionof Pediatric Neurosurgery, Children's Memorial Hospital, Chicago,111.).27City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 454(1985) (Stevens, J. & Burger, C.J., concurring), and id. at 461(Marshall, Brennan & Blackmun, JJ., concurring in part anddissenting in part).30

disability is not legally adequate to constitute informedconsent:The law of informed consent. . .provides some guidance,.. .because legally adequate consent requires thatthe individual. . .have a sufficient amount of informationto make a legally adequate judgment and that it be avoluntary judgment, that is, without undue influence byothers.And both on voluntariness and particularly on the pointof information, to suggest that the involvement of parents,who are often ratifying a judgment which theythink. . .[was] made by a professional on the basis ofcurrent knowledge that may not indeed be withoutprejudice, looking to the kinds of requirements in consentlaw may suggest to us that it is inadequate to essentiallylaunder discriminatory decisions by saying, "Yes, well theparent acquiesced in them" when their consent may notmeet those tests. 28Other reservations have been expressed abouttaking parental denial of treatment decisions at facevalue. Sociology Professor Irving Zola testified thatresearch suggests that miscommunication as well asmisinformation lies behind many of them:[W]ith the few studies that have come out, when we try tostudy what the doctor thinks he said and what the patientthinks he or she heard in the situation, the discrepanciesare so enormous that one might go so far as to say that anydoctor-patient encounter should have a mediator orsomebody else there that could help both parties communicatewith each other. 2928Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 30 (1986) (vol. II) (testimony ofProf. James W. Ellis, School of Law, University of New Mexico).29Id. at 200 (testimony of Prof. Irving Kenneth Zola, Departmentof Sociology, Brandeis University).Carlton Sherwood's investigations substantiateconcerns about the definitive nature of many parents'acquiescence in nontreatment decisions.[W]hen death was being discussed, parents were rarely, ifever, told exactly what method was planned. Euphemismslike "let nature take its course" cover everything fromstarvation to deliberate efforts to infect the newborns. Onecan only speculate what would happen if doctors wererequired to put their nontreatment recommendations inwriting and spell out clearly for parents what it was theyintended to do in their names, along with the consequencesof such actions. 30Dr. Rosalyn Benjamin Darling testified:Even if we could legislate truly informed consent,however, we could never have certain knowledge aboutany child's future quality of life. Some of the parents whohave the most negative attitudes in the immediate postpartumsituation, learn to love their children dearly months,weeks, or even days later. Some children with the poorestmedical prognosis shortly after birth develop into normal,healthy children. Very few cases are predictable with anydegree of certainty. Treatment in most cases, therefore,seems appropriate. 31ConclusionThe evidence is strong that in many instances inwhich lifesaving treatment is denied to children withdisabilities, those decisions are often influenced bywhat physicians tell parents. In practice, doctors areoften the prime movers in denying the treatment.30Id. at 50 (testimony of Carlton Sherwood).31Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 182 (1986) (vol. II) (testimonyof Dr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc.)-31

Chapter 3The Role of Quality of Life Assessments inDenial of Medical TreatmentOne of the most common justifications given fordenying treatment to children with disabilities is thatthere are circumstances in which it is in thechildren's best interests to spare them a life ofunacceptably poor quality. In the words of Dr.Norman Fost, chairman of the Committee onBioethics of the American Academy of Pediatrics:Profound handicap may be a compelling reason forallowing a patient to die. For example, consider the infantwith a severe intracranial hemorrhage and respiratordependency who is profoundly brain damaged but notcomatose. Ever-improving technology makes it possible tokeep such patients alive for longer periods. Some live inintensive care units for years, or at home at enormousexpense. The treatment clearly has medical benefit—itmaintains respiratory functions and prevents the complicationsof respiratory arrest—yet it often seems to serve nointerest of the patient, who cannot appreciate any of thejoys of living. 1Impairment or Societal Attitudes?The testimony presented to the Commission andits research suggest that, with few exceptions,people who themselves have disabilities reject thisform of analysis. In a letter to the editor criticizing acolumnist's support for denial of treatment to BabyJane Doe because the child's life would be "barrenof joy," Price Grisham wrote:When will people who are perfectly intelligent, clearheadedand well-educated stop assuming that one must behealthy, handsome and preferably wealthy to be humanand happy? I am not healthy (I have cerebral palsy), not1Fost, Treatment of Seriously III and Handicapped Newborns, 2Critical Care Clinics 149, 153 (1986).2Grisham, Baby Doe, Washington Post, Dec. 11, 1983, at C6. Seealso Protection of Handicapped Newborns: Hearing Before theUnited States Commission on Civil Rights 272 (1986) (vol. II)(testimony of Robert R. Williams, Project Analyst, D.C. Associahandsomeand, as a GS-5 clerk, will probably never bewealthy.My childhood and. . .[adolescence] were spent in morethan a decade of operations and therapy. Yet I am quitesane and quite firm when I state that I would not exchangemy handicapped body for that of the most muscularRedskins player, for through it I have learned more in the30 years of my life than some people learn in a century. 2Typical of the views of many people with disabilitiesis this editorial from a leading disability rightsmovement newspaper, The Disability Rag:The issue is that everyone agrees that life as a disabledperson is most probably a fate worse thandeath. . . .That's the accepted fact. Many of us, in fact,don't accept it at all. . . .Who stops to figure out why being disabled is such ahorrible fate? Most disabled people (we can assume we'rethe experts in this) will tell you that, despite whateveryone thinks, the disability itself is not what makeseverything difficult. What causes the difficulty are theattitudes society has about being disabled: attitudes thatmake a disabled person embarrassed, insecure, uncomfortable,dependent. And the physical environment.The physical environment that keeps on being designed.. . .[w]ith no thought ever routinely given todesigning things everybody can simply use. . . .Of course disabled people rarely can talk of quality oflife. But it has precious little to do with deformity, and agreat deal to do with society's own defects.tion for Retarded Citizens) ("Society places too much emphasison the perception of quality of life, perceived value, intelligenceand physical agility. Traditionally, persons with severe disabilitieshave not been consulted on those issues which have affected themmost. I think my life has been worth living; I'm confident myfamily and those I care for feel the same way.").32

This said, we can get back to talking about the newborninfant with a deformity. Now we can ask why thoseparents would be happier seeing it dead. Today, that childmeans much expense, confinement to home, specialschools, special transportation, life in an institution. Thepublic talks about that kind of a life as though it is simplyinevitable for deformed infants. What they should beasking is "why is it inevitable?"The issue is rights, but the issue is not the right to die. Itis the right to live in a society that wants you. And it'seasier for our society to get rid of these kinds of peopleright at the start than to deal with why life is so horrible forthese people. Our society is what makes it horrible. Wehave the power to change that. 3When Dr. Walter Owens, the physician whodelivered Bloomington's Infant Doe, appeared beforethe Commission, he read a letter from a couplewho had written in support of the decision to let achild with Down syndrome die. The letter focusedfar more on the societal reaction that made lifedifficult than on impairments inherent in the disabilityitself. These parents wrote that they regrettedchoosing life-saving surgery for their child's esophagealatresia: "My husband and I chose life and got ahellish existence instead." 4That view was based almost entirely on the lackof acceptance their son encountered. After referringbriefly to health problems such as "respiratoryinfections[,]. . .severe allergies accompanied bycongestion, fatigue, irritability, sinus, and ear infections,"the couple stated:The real trouble started for Charles when he became oldenough to play outside. Although there were someinstances of cruelty to our Down's child, the mainexpression to him by neighborhood children has been toignore him. For seven years, Charles was a bystander whowas permitted to sit on the side and watch their ballgames. As a result of this experience, our son became anonperson. His self-image plummeted, and one day hebegan to stutter. At first barely perceptible, the stutteringincreased to a very severe level. 5The parents went on to tell how they eventuallysent Charles away to a special residential school3Killing Babies: Left and Right, The Disability Rag, May 1983, at2, 6, © 1983 by The Advocado Press, Inc. Reprinted withpermission. This view is consistent with Harlan Hahn's descriptionof a "sociopolitical understanding which regards disability as aproduct of the interaction between the individual and theenvironment. . . .Whereas the medical approach concentrates oninabilities affecting individual performance,. . .the sociopoliticalperspective emphasizes the social environment and the importanceof cultural expectations." Hahn, Public Policy and DisabledInfants: A Sociopolitical Perspective, 3 Issues in L. & Med. 3, 3-4(1987) (emphasis in original).where he is "now protected from the 'kindness' ofsociety." 6 Looking toward the future, they asked,"Will there be a group home and some sort of semiindependentliving arrangement for Charles or willour son be reduced to the subhuman institutionalexistence presently endured by the majority ofretarded citizens?" 7To accept a projected negative quality of life for achild with a disability based on the difficultiessociety will cause the child, rather than tackling thedifficulties themselves, is unacceptable. The Commissionemphatically rejects the view that an acceptableanswer to discrimination and prejudice is togrant the "right to die" to those against whom thediscrimination and prejudice exists. It is not tolerableto choose death for children with disabilities as thesocietal response to unjust treatment of people withdisabilities.As Robert Williams, now deputy director of thePratt Monitoring Program of the D.C. Associationfor Retarded Citizens, who himself has a physicaldisability and uses communication aids, testified:The way to secure commitments [to improve the waypeople with disabilities are treated and the services theyreceive]. . .is not. . .[to] suggest that care be withheldfrom newborn infants with severe disabilities until anadequate funding is provided to help them obtain theirmaximum developmental potential. What benefit canresult from this strategy? At best it can be seen as anextreme example of circular reasoning. At worst it canlead to the most vicious of circles. Appropriate supportservices necessary to assist the families of newborns withsevere disabilities to love and care for their child in theirown home will not be available as long as we devalue thelife of a child so much that it becomes acceptable towithhold the most ordinary care. 8Even when a negative conclusion about thequality of life of a person with a disability is not soself-consciously grounded in projections about thebehavior of others, as in Dr. Owen's example, it maynevertheless be based on a view of disability coloredby societal assumptions and expectations. ProfessorHarlan Hahn explains:4Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 212 (1986) (vol. II) (testimonyof Walter Owens, M.D.) (quoting anonymous letter).5Id.eId. at 212-13.7Id. at 213.8Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 272 (1986) (vol. II) (testimonyof Robert R. Williams, Project Analyst, D.C. Association forRetarded Citizens).33

transition from education to employment, withparticular attention to "supported employment," inwhich those with the most severe disabilities aregiven ongoing assistance in training and supervisionwhile employed. 15Advances in education have been paralleled by anincrease in support groups for parents of childrenwith disabilities. The deputy director of the NationalInformation Center for Handicapped Children andYouth testified:There are better and more available parent-to-parentadvocate support services today than there were 10 yearsago. That doesn't mean that there are all the supportsneeded to sustain the help that families need, but as far asparent-to-parent supportive services, at the time when achild is born, there are people who are trained and whoare willing to go in and help those families, and I wouldsay I could find someone for every major medical centerin this country that could do that. . . .[P]arent advocacy.. .is available and there are people who, if they haveto make long distance calls or make a trip, will go and helpparents when they find out they have this need. Andindeed there are many systems in place to help the medicalcommunity, the legal community, the nursing staffs, toknow how to get that help in. 18Also contributing to improvements in the last 20years has been progress in rehabilitation technology,such as power wheelchairs and machines that assistpeople with vocal impairments to speak. 17 EdRoberts emphasized another critical aspect in theachievement of potential: motivation to attempt andto innovate.I was told for years by the doctors I couldn't have a powerchair; in fact, it was impossible, I didn't have the kind ofmuscles.15Id. at 87-88 (testimony of Madeleine Will, Assistant Secretaryfor Special Education and Rehabilitative Services, U.S. Departmentof Education). Professor Luckasson testified: "In my owncommunity, essentially all handicapped children, regardless of theseverity of their disability, are educated on regular schoolcampuses, not on isolated campuses, and are integrated to themaximum extent appropriate with nonhandicapped children." Id.at 95 (testimony of Prof. Ruth Luckasson, Department of SpecialEducation, University of New Mexico).18Id. at 256 (testimony of Patricia McGill Smith, DeputyDirector, National Information Center for Handicapped Childrenand Youth).17Id. at 108-09 (testimony of Ed Roberts, President, WorldInstitute on Disability).18Id.19See, e.g., supra note 7 and accompanying text. See alsoProtection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 269-70 (1986) (vol. II) (testimonyof Robert R. Williams, Project Analyst, D.C. Association forRetarded Citizens).Well, I fell in love. . . .and it was ridiculously inconvenientto take my attendant everywhere with me, I justcouldn't be alone. Well I learned how to drive a powerchair in 2 days. . . .I think sometimes. . .we forget. . .that people can doincredible things despite the prejudices, despite the direpredictions, if we give them the help they need. In thiscase, all I needed was something to adapt the wheelchairfor me, to turn the controller around; it didn't costanything really, and I probably saved the State thousandsof dollars in people pushing me around to my classes andto other places. 18Repeatedly, those who support denying lifesavingtreatment to children with severe disabilities invokethe horrors of institutionalization. 19 However, SpecialEducation Professor Ruth Luckasson informedthe Commission:Research such as that conducted in the case of thedeinstitutionalization of all of the residents of PennhurstState School indicates that handicapped people, irrespectiveof the severity of their disability, can live in thecommunity. The fact that they don't is a policy decisionthat has been made by this society, not a reflection of theirfunctioning ability. 20Although there is considerable experience withthe effectiveness of integrated community livingpolicies in a variety of places across the country, theavailability of services to assist in finding employmentand educational rehabilitative services is stillspotty, varying from State to State and sometimesfrom community to community. 21 This reality maypartially account for the continuing view of manythat the lives of people with severe disabilitiesremain hopeless.20Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 96 (1986) (vol. II) (testimony ofProf. Ruth Luckasson, Department of Special Education, Universityof New Mexico). See also id. at 98-99; and chap. 4.21Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 100-02 (1986) (vol. II) (testimonyof Prof. Ruth Luckasson, Department of Special Education,University of New Mexico). See also id. at 187-88 (testimony ofDr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc.) (describingdifficulties for families of children with disabilities in securingadequate financial support, obtaining an appropriate education,and seeking respite care and support facilities, but noting, "Theseare not problems that are inherent in the disability. If we hadsufficient support facilities in society, if there were enoughresources out there, much of the burden would be removed fromparents, and the quality of life of all concerned would besignificantly increased. . . .").35

drome can acquire skills that advance their developmentof independence.In 1974 Menolascino studied the attainment ofsuch adaptive and independent living skills as ambulation,feeding, dressing, toilet etiquette, and groomingamong a population of 72 adults with Downsyndrome with a mean age of 33.4 years. Eventhough these individuals learned their skills in aresidential facility with little stimulation, 75 percentwere able to "walk freely and unassisted," and 79percent could feed themselves "completely andneatly without help. . . ." Sixty-four percent wereable to undress well and dress partially, i.e., "needingonly occasional or minor help." Finally, significantlevels of grooming ability were demonstrated:69 percent could wash and dry their faces; 56percent could brush their teeth; 24 percent couldcomb, brush, and/or part their hair; and 39 percentcould shower and dry themselves completely andadequately. Menolascino concluded that "[o]verall,the levels of functioning are inconsistent with theprevailing belief that Down's syndrome preventsone from performing self-care tasks." 28In another area, in 1973 Sidman and Cressonreported on an attempt to devise a method thatwould allow two men with Down syndrome, whowere labeled severely retarded, to learn to read.Beginning with the assumption that most peoplelearn to read by first learning to match spokenwords with pictures, and then to match printedwords with pictures, Sidman and Cresson postulatedthat, through faulty teaching, most children withmental retardation never learn the final, purelyvisual step in the reading comprehension process,even though they have the capability of doing so.They devised a method to address this problem. Thetwo subjects in the study were initially unable toread the 20 words that Sidman and Cresson hadchosen as their focus. Ten months later, however,after experimentation with the new method, the twomen were able to read between 50 percent and 75percent of the words with comprehension. Theresearchers concluded that "teaching procedures,rather than subjects' deficiencies, may have set the28Putnam & Rynders, Advancing the Development of Independencein Adults with Down Syndrome, in Down Syndrome:Advances in Biomedicine and the Behavioral Sciences 468-69 (S.Pueschel & J. Rynders ed. 1982).29Id. at 469-70.30Id. at 471-72.31Id. at 472-73.32Id. at 473.limiting conditions, even at this level of retardation."29In 1979 Hobson and Duncan reported on a studyin which a small group of adults with Downsyndrome was taught to use sign language. All hadlived in institutions for most of their lives, their meanIQ was 20.2, and they were labeled profoundlyretarded. At the beginning of the study, four of thesubjects were "nonverbal with little ability to gesture,"three had "very limited vocal skills andgesturing abilities," and two could be understood, onoccasion, only with great difficulty. After 6e weeksof focused instruction, they had learned the signs. 30A study reported by Buddenhagen in 1971 describedan effort to promote vocalization in "institutionalizedchildren with Down syndrome who wereseverely retarded and exhibited very maladaptivebehaviors." Institution records indicated that Larea,an 18-year-old woman who participated in the study,could not talk and frequently kicked, bit, and struckother residents and institution aides, although shedid have some self-help skills and could respondappropriately to some verbal stimuli. After 21 hoursof training that used a combination of incentives anddirect instruction, Larea had acquired a fairly sizableverbal repertoire. Furthermore, Larea's social behaviorimproved so dramatically that reports thathad previously characterized her as stubborn andmercurial began to call her cooperative and polite. 31These investigations all show that individuals withDown syndrome can indeed learn to read, tocommunicate, and to interact positively with others,activities that contribute to the development ofindependence. They provide "positive impetus forfurther exploration of specific techniques" 32 thatmay be used, at ever earlier ages, to prepare peoplewith Down syndrome for independent living.Despite Dr. Owens' statement to the court that hehad "never known a Down's child who was gainfullyemployed outside a sheltered workshop," 33 evenpersons with severe disabilities can be "productiveemployees. . .[W]ith appropriate support and ongoingsupervision, individuals who typically would betargeted for sheltered employment or day habilita-33Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 225 (1986) (vol. II) (testimonyof Walter Owens, M.D., Bloomington Obstetrics and Gynecology,Inc.). Dr. Owens told the Commission that subsequent to hiscourt testimony, "I have had to revise that since I heard of oneDown's child, a young woman, who is washing dishes in arestaurant. That's the sole one I have been able to encounter." Id.37

tion programs can become productive, earningemployees in industry settings." 34 One long termstudy has shown that the employability of adultswith mental retardation in competitive environmentsis much more a function of factors other than themere fact that an individual has mental retardation.The two factors with the greatest effect on thelength and quality of the employment of the personwith mental retardation were the extent to whichthey were accurately matched to jobs maximizingtheir particular abilities, and the degree to whichrelevant, high-quality, onsite supervision was available.In situations in which both of these maximized,the mean length of employment was 19 months. 35By contrast, the mean length of employment fornondisabled people performing similar jobs was 5months. 36 The 167 individuals in the study earned$1,069,309 over a 6-year period and paid $245,941 intaxes. 37Other studies show the ability of people withmental retardation to learn employable vocationalskills. One example is the work of Gold, reported in1973. Gold taught a group of 64 moderately andseverely retarded individuals (about 40 percent ofwhom had Down syndrome) how to assemblebicycle braking mechanisms. After their training, 63of the 64 were able to assemble the braking mechanismscorrectly in six of eight consecutive trials. Ayear later, 53 of the 64 put together a 24-piecetraining brake, exhibiting a high degree of skillretention. The individuals with Down syndromeperformed comparably with the others. 38Anecdotes corroborate what empirical studiespostulate about the actual employability of personswith mental retardation. JoAnne Putnam and JohnRynders relate several such success stories in theiressay, "Advancing the Development of Independencein Adults with Down Syndrome." In thiswork, they describe individuals with Down syndromewho all lead prosperous vocational lives.Kathy Hagarty, 19 years old in 1978, was thelibrarian at the St. Collette School for MentallyRetarded Children. Jacques Dumont, in his earlytwenties in 1977, ran the addressograph and mimeo-S4Kiernan, Opportunities and Options for Employment, in TheYoung Person With Down Syndrome[:] Transition From Adolescenceto Adulthood 155, 161-62 (S. Pueschel ed. 1988) (footnoteomitted). Cf. Wehman et al., Competitive Employment for Personswith Mental Retardation: A Follow-up Six Years Later, 23 MentalRetardation 274 (1985) [hereinafter Wehman].35Wehman, supra note 34, at 276-79.38Id. at 279.graph machines in his office, ran errands to the bankand post office, made the morning coffee, and wasconsidered a trustworthy employee. At age 23,David Kaul was earning $2.90 an hour for maintenancework for the contact lens manufacturerPrecision Cosmet, and also mowed lawns with a$2,400 tractor that he had bought with his ownsavings. On weekends, Kaul cleaned the local firestation on a volunteer basis. At 31 years old, DaveStevenson in 1979 was a grounds maintenanceworker with the Maryland National Park andPlanning Commission, earning $3.04 per hour. Stevensonreceived training through the vocationaltraining program at the Melwood HorticultureCenter, Inc. When he enrolled there in 1967, he wasconsidered the lowest functioning person in theprogram because he had scored below 35 on theWechsler Adult Intelligence Scale, and he waslacking even in self-care skills. These factors makehis later success as a paid employee all the moreimpressive. 39Informed of Dr. Owens' estimate that the lifetimecost of a child with Down syndrome would be closeto a million dollars, Diane Crutcher, executivedirector of the National Down Syndrome Congress,wrote that "the lifetime cost of a person with Downsyndrome will drop dramatically because they arenow being raised in the community to live in thecommunity as tax-payers and not tax-burdens." 40Dr. Owens' estimate of the cost associated with aperson with Down Syndrome is a function of hisassumptions about the inability of such an individualto take care of or support himself or herself. Yet,early intervention programs now foster such ability.It is important to recognize that Down syndrome,with the lessened mental capacity associated with it,does not mean "an inability to learn, but rather as aslowed rate of learning." 41 Early interventionprovides the framework for developing additionalskills. By themselves, these skills avoid the cost ofcontinual assistance. But they also create the basisfor participation in employment, through whichmany people with Down syndrome can supportthemselves.37Id.38Putnam & Rynders, supra note 28, at 475.39Id. at 474-75.40Letter from Diane M. Crutcher, Executive Director, NationalDown Syndrome Congress, to U.S. Commission on Civil Rights(May 9, 1988).41Edwards, Living Options for Persons with Down Syndrome, inNew Perspectives on Down Syndrome 337, 340 (1987).38

These studies and anecdotes demonstrate thepositive and powerful effects that focused andappropriate training and education can have on thelives of people with Down syndrome. As such, theysuggest that a proper response to the diagnosis ofDown syndrome at birth is not fatalistic resignation,but the "exploration of specific techniques" capableof advancing the development of independence. 42The final ground advanced by Dr. Owens todefend denying lifesaving treatment to children withDown syndrome is his assertion that they are proneto leukemia and Alzheimer's disease. Although it istrue that those with Down syndrome have a somewhatgreater statistical likelihood of developingleukemia, that incidence is still only 1 in 60,000. 43That lifetime risk is less than the annual risk each ofus faces of death from accidental drowning or as aresult of a fire. 44 Dr. Owens may have beeninfluenced by early studies that gave what proved tobe highly inflated estimates for the incidence ofleukemia in children with Down syndrome. 45Dr. Owens' statement that a majority of personswith Down syndrome develop premature Alzheimer'sdisease is flawed as well. In the words of theexecutive director of the National Down SyndromeCongress: "[Although there is early evidence ofAlzheimer-like. . .[symptomatology] in the brainsof many persons with Down syndrome around theage of 35 (via autopsy), the majority do not showclinical signs of the disease until their 50's to 60's (ifat all). . . ."; i.e., at about the same age as peoplewithout Down syndrome begin to exhibit clinicalsymptoms of the affliction. 4642Putnam & Rynders, supra note 28, at 473.43Letter from Diane M. Crutcher, Executive Director, DownSyndrome Congress, to U.S. Commission on Civil Rights (May 9,1988).44In 1982, 2.3 people drowned and 2.2 died as a result ofaccidents caused by fires and flames for every 100,000 people inthe United States. U.S. Bureau of the Census, Statistical Abstractof the United States 1986, p. 77 (106th ed.) (table 120). The riskthat a person with Down syndrome has of developing leukemia inan entire lifetime is equivalent to 1.7 in 100,000.45"One factor that confused early researchers. . .was the largenumber of [infants] with Down syndrome who developed whatwas thought to be acute myelocytic leukemia and then underwentspontaneous remission." Later researchers "showed that [infants]with Down syndrome are more likely to develop a leukemoidreaction clinically and histologically resembling acute leukemia.This leukemoid reaction, however, undergoes spontaneous remissionand therefore cannot be classified as leukemia. Furthermore,[infants] with this leukemoid reaction who die of other causeshave no histologic signs of leukemia outside of the blood or bonemarrow, which is in contrast to true neonatal leukemia. ..."Sassaman, Oncology, in Down Syndrome[:] Advances in Biomedicineand the Behavior Sciences 237, 237 (S. Pueschel & J.Rynders eds. 1982).Studies have indeed shown that the autopsies ofbrains of most persons with Down syndrome overthe age of 35 evidence "laboratory traits" of Alzheimer's.47 Therefore, "many neuropathologistshave simply stated that all persons with Downsyndrome develop Alzheimer disease with age." 48Oliver and Holland state, "From the neuropathologicalliterature the assumption arises that all elderlypeople with Down's Syndrome. . .would thereforebe expected to have the clinical signs of dementia." 49But this is not the case. There is a lack ofcorrespondence between the laboratory results andclinical observations of senility. 50Some older persons with Down syndrome areconsidered "as normal as their juniors and hardlyever exhibit the personality changes or psychologicalproblems observed in Alzheimer disease." 51 In astudy of individuals with Down syndrome over age36 whose autopsies showed the neuropathology ofAlzheimer disease, only about one-fourth werecharacterized as exhibiting dementia. 52Inaccurate PrognosesA substantial body of evidence shows that timeand time again predictions of a poor quality of lifemade at birth for a child with a disability aresubsequently proved wrong. 53 Too many exampleshave been adduced to be dismissed as isolatedinstances.One of the most highly publicized cases, that ofBaby Jane Doe in New York, is a striking example.The case contained many elements typical of suchsagas: the denial of surgery following her birth; the46Letter from Diane M. Crutcher, Executive Director, NationalDown Syndrome Congress, to U.S. Commission on Civil Rights(May 9, 1988).47 Oliver & Holland, Down's Syndrome and Alzheimer's Disease: AReview, 16 Psychological Medicine 307, 307 (1980).48Schweber, Interrelation of Alzheimer Disease and DownSyndrome, New Perspectives on Down Syndrome 135, 135(1987).49Oliver & Holland, supra note 47, at 318.Schweber, supra note 48, at 138. "[PJrimary care providershave long been aware that the majority of adults with Downsyndrome live out their lives with no apparent changes inpersonality or behavior." Id. at 135.51Pueschel, Health Concerns in Persons With Down Syndrome,New Perspectives on Down Syndrome 113, 127 (1987).52Schweber, supra note 48, at 138.53See Protection of Handicapped Newborns: Hearing Before theUnited States Commission on Civil Rights 180 (1986) (vol. II)(testimony of Dr. Rosalyn Benjamin Darling, Director, EarlyIntervention Services, City Council Clinic in Johnstown, Inc.)("[QJuality of life is not highly predictable even with the bestinformation about a child's current situation. Often, quality of lifeis better than what early prognoses would suggest.").39

unsuccessful efforts of a private attorney—promptedby a whistle blower—to obtain a court order forsurgery; and the unsuccessful efforts of the Departmentof Health and Human Services to gain accessto her medical records. 54 Finally, throughout thecontroversy, the accounts of the future predicted forher—should she survive—were unremittingly bleak.The director of the American Academy of Pediatrics,Dr. Harry Jennison, said, "'Baby JaneDoe'. . .not only has spina bifida but fluid on thebrain and an abnormally small brain. The baby is soseverely deformed that there is nothing that can bedone." 55 A Los Angeles Times editorial noted,"Doctors say that without surgery the girl may liveup to two years; with it she could live until she is 20,but she would be severely retarded, epileptic andparalyzed from the waist down, as well as inconstant pain." 56The Washington Post quoted the court testimonyof pediatric neurologist Dr. George Newman: "[O]nthe basis of the combination of malformations thatare present in this child, she is not likely to everachieve any meaningful interaction with her environment,nor ever achieve any interpersonal relationships.. . ."" Newman also testified, "It's unlikelythat she is going to develop any cognitiveskills" and would experience "nothing whatsoever"that he considered positive on the cognitive scale. 58The baby's parents described in an interview whatthey were told about the child's future by medicalpersonnel—the information on the basis of whichthey decided against surgery:"We were told. . .that the part of the brain that controlsmuch of our awareness was either missing or not entirelyformed.We are not talking about a spina bifida child,. . .onewho could perhaps walk someday with braces. . . .Shewill be an epileptic. Her condition for future life is to bebedridden, and she would not have use of her hands.54See chap. 5, text accompanying notes 25-32; and chap. 6, textaccompanying notes 89-107.55Pro and Con[] Should Uncle Sam Protect Handicapped Babies?U.S. News & World Report, Jan. 16, 1984, at 63, 64.56 Indecent Zealotry, Los Angeles Times, Nov. 16, 1983, pt. II, at6.57Barringer, Meese Approved Intervention in Baby Case, WashingtonPost, Nov. 16, 1983, at A16.»» Transcript at 47, 95-96, People ex rel Washburn v. StonyBrook Hosp., No. 83-19910 (N.Y. Sup. Ct. Oct. 19, 1983).59Quoted in J. Lyon, Playing God in the Nursery 51-52 (1985).80Caplan, Is It a Life? The Nation, Jan. 21, 1984, at 37, 37.We also know that as she grew older, she would alwaysbe an infant. She would never know love. And while shemight feel sorrow and joy, her overall condition would bepain." 59Asking "Is it a Life?" bioethicist Arthur Caplan(then on the staff of the prestigious Hastings Center)wrote of Baby Jane Doe, "No one should be forcedby the government, [or] civil libertarians. . .to livesuch a life, even briefly." 60Notwithstanding the legal efforts opposed toproviding medical treatment for Baby Jane Doe, sheis alive today. 61 Although the courts had upheld herparents' decision to withhold operations to install ashunt and to close her back, the parents had time tochange their minds. A shunt was installed, her backhealed, and she was taken home. 62 As she left thehospital, Dr. George Newman had not changed hisprognosis: "She will still be severely retarded and, Istill think, bedridden all the days of her life." 63When they took her home, her father commentedto a reporter, "We're happy because she appears tobe happy." 64 About a month later, a reporterdescribed her as "smiling and cooing as her motherfeeds her. . . .[S]he grasps a visitor's finger in a tinyfist. . . ," 65 Already she was using her "unusable"hands. In June 1986, when she was 2 years and 8months old:Her. . .father said [she] likes to throw a ball to thefamily's golden retriever, cruise around in a walker and tryto sing "Row, Row, Row Your Boat." He said he and hiswife decided initially against surgery because it appearedshe could die at any moment and they did not want to addto the baby's pain."All of a sudden it turned around," he said. "From thatmoment on, we really saw her sense of fighting and senseto live and we were full steam ahead with what had to bedone for her." 68In December 1987, when she was 4, a reporterwrote of her, "Keri-Lynn talks and laughs; she61Baer, The Half-told Story of Baby Jane Doe, Col. JournalismRev., Nov.-Dec. 1984, at 35, 38.62Horan & Balch, Infant Doe and Baby Jane Doe: MedicalTreatment of the Handicapped Newborn, 52 Linacre Q. 45, 54(1985). Healing of the spinal lesion is rare without surgery but notwithout precedent.83Quoted in Lyon, supra note 59 at 55.84 Baby Jane Doe Goes Home, Milwaukee J., Apr. 6,1984, pt. 2, at3, col. 1.•* 'Adorable' Baby Jane Doe Finally Is Home, MilwaukeeSentinel, May 25, 1984, pt. 1, at 8, col. 1.66Associated Press, "Baby Doe" Parents Applaud Supreme CourtRuling, Domestic News PM Cycle, June 10, 1986.40

smiles and hugs and screams and plants kisses firmlyon a stranger's cheek." 67 She was using a wheelchairand attending school. 68 "I'm thrilled as canbe," her father said. "The fact that she's able torelate to us and her environment is amazing. Hermental awareness is fabulous now." 69 She was"learning to mix with her peers." 70 Of course, shestill has spina bifida. She does not walk, and requiresfrequent catheterization; she has had to have surgeryfor a dislocated hip. 71 But, in the followingdescription of Baby Jane Doe at 4, it is hard torecognize the pain-wracked, unaware, bedriddencreature of her doctors' confident predictions:She has recently begun to demand more than her shareand often resorts to throwing toys or M&Ms when thefocus shifts away from her. Then she whispers, "I'm bad,"aware that her mother is displeased with her behavior.. . .Later, she whispered, "Dance, Daddy, dance," asher father swept her into his arms to sway to the music ofStevie Wonder. 72A woman who works in parent support inPhoenix, Arizona, told the Commission about asimilar story:We also have our own little Baby Doe in Arizona andher name is Jessie. . Jessie was supposed to die the firstnight that she was born. She also had spina bifida,hydrocephalus, lots of severe brain damage, and all ofthose things that were not compatible with life, so notreatment was done for Baby Jessie. Days and days anddays went on and Baby Jessie fooled everybody and didnot die.Finally about the 21st day, right at the time the signswere hanging up in the nurseries, somebody got realnervous and said, maybe she's not going to die, maybe webetter do surgery. So by this time, unfortunately it wasreally too late to do much repair on her back, but they didput a shunt in and that little girl now talks in sentences andgoes to regular preschool.Her family really believed what the doctors said: Shewill die. So they just waited for her to die. And so for me87Kerr, Baby Doe's Success[S\ Progress Defying Prognosis, Newsday,Dec. 7, 1987, at 2.68Kerr, Baby Doe's Success\:] Legal, Medical Legacy of Case,Newsday, Dec. 7, 1987, at 2, 23.69Kerr, Baby Doe's Success[S\ Progress Defying Prognosis, Newsday,Dec. 7, 1987, at 2, 23.70Kerr, Baby Doe's Success[f] Legal, Medical Legacy of Case,Newsday, Dec. 7, 1987, at 2, 23.71Kerr, Baby Doe's Success[S\ Progress Defying Prognosis, Newsday,Dec. 7, 1987, at 2, 23.72Id.73Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 264-65 (1986) (vol. II) (testimonyof Betsy Trombino).as a parent I have a real difficult time with someonemaking that kind of a prognosis for a child and not doingany treatment. Because I have seen too many kids whodefy all the prognoses made for them. 73One family in the Chicago area can give twoexamples of negative predictions disproved. Theyare the adoptive parents of a child with spina bifidaleft to die in Robinson, Illinois, until the JusticeDepartment intervened. 74 When he was a year old,the Chicago Tribune reported that his adoptiveparents "believe that his alertness proves there hasbeen no brain damage and that his paralysis from theknees down won't keep him from walking." 75 Theirother example is their child born a few years earlier:"When she was 4 months old, the doctor told us she hadsome kind of neurological impairment—they still don'tknow exactly what. They advised us to put her in aninstitution and forget about her," said the mother.The child is now an alert, active 5-year-old who movesnormally around the house, and speaks many words, withonly slight hesitation. 76Patricia McGill Smith, deputy director of theNational Information Center for Handicapped Childrenand Youth, told the Commission about a case inOmaha, Nebraska. A child was born with spinabifida, and there was "a recommendation of notreatment based on the fact that the child had spinabifida and predictable mental retardation." After 4months of debate, the parents changed their initialdecision to accept that recommendation, and thechild received treatment and lived. Ms. Smithtestified, "I have tracked the progress of that childand that family ever since. The young lady had nomental retardation whatsoever." 77Such positive results for children born with spinabifida are not anomalous. Dr. David McLone, whoheads a major neurosurgical department and formerlychaired the Professional Advisory Council of theSpina Bifida Association of America, testified:74Telephone interview with Robert D'Agostino, Former DeputyAssistant Attorney General, Civil Rights Division, Departmentof Justice (Dec. 1, 1988).75Nelson, 2d miracle baby gives family joy, Chicago Tribune, Apr.24. 1983, Sec. 3, at 1, col. 1.76Id.77Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 254-55 (1986) (vol. II) (testimonyof Patricia McGill Smith, Deputy Director, National InformationCenter for Handicapped Children and Youth).41

[S]ince I have been at Children's Memorial Hospital, [wehave]. . .operated on all children and have not used anyform of selection.. . .85 percent of them survived and 15 percent of thechildren have died from complications. . . .Of the 85survivors, 73 of them have normal intelligence. Approximately85 percent of them have a shunt for their hydrocephalus.Eighty-nine percent of the survivors are communityambulators. . . .someone who can walk from the schoolbus to the classrooms, between classrooms, and can walkin their neighborhood. A significant number of thosechildren who are community ambulators, however, arewalking with braces and crutches. We have a very smallnumber of children who are in wheelchairs. Ninety-fivepercent of them have no bladder and bowel control, butare rendered socially continent of bladder and bowel bytraining in the use of intermittent catheterization. Wewould, therefore, estimate, based on these numbers, thatsomething like three-quarters of the children who survivewill be competitive and independent as adults.There will be another 10 percent. . .who will requiresome kind of sheltered care, and about 10 percent of thesurvivors will be impaired to the point that they willrequire some kind of nursing care throughout their life. 78Despite these results, Dr. McLone observed:One of the problems. . .with spina bifida is that apediatrician in practice may see one or two of these in anentire lifetime. . . . [TJhere still are occasions in whichphysicians are confronted with spina bifida who are notaware of the outcome or the changes that have occurredover the last 20 or 30 years and give information based onwhat the outcome was 30 or 40 years ago. It's just notappropriate. 79Ed Roberts, president of the World Institute onDisability, testified before the Commission:I began to be a principal in physical disability. . .at 14years of age. I got polio in 1953. Within 2 or 3 days, I wentfrom a child who was achieving his independence topatient and to the label of a helpless cripple, and within 2days I was in an iron lung. My mother went to a doctorand she asked whether I would live or would I die, and thedoctor looked at her and very patronizingly said, "Maybeyou should hope he dies, because if he lives he'll benothing more than a vegetable for the rest of his life."78Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 6-7 (1985) (vol. I) (testimony ofDavid McLone, M.D., Chairman, Division of Pediatric Neurosurgery,Children's Memorial Hospital, Chicago, 111.).79Id. at 10.80Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 102-03, 104 (1986) (vol. II)(testimony of Ed Roberts, President, World Institute on Disabili-42One of the real ironies is when I was about 18 years old,I went to the California Department of Rehabilitation andI asked to be a client, and I was immediately rejected astoo severe to ever go to work. Well, I became director ofthat department 10 years later. 80John Kemp, a lawyer, testified: "I was bornwithout arms or legs,. . .and my parents weretold. . .by the doctor that delivered me. . .that thebest I could hope for would be a life of, hopefully ofcomfort, but certainly not of any kind of achievement."81Robert Williams is deputy director of the PrattMonitoring Program of the D.C. Association forRetarded Citizens, with monitoring responsibilityfor implementation of a court decree requiringtransfer of many people with disabilities from institutionsto community living arrangements. He hascerebral palsy with a speech impairment. He testified:My parents were told from the start just how severe mydisability was. In fact, they were advised on numerousoccasions to put me away in. . .an institution. . . .. . .1 come from solid blue-collar stock. My Dad andtwo brothers own and operate a small constructioncompany. . . .It was clear from the start that I would notbe cut out for such a life. My parents decided if I was tomake it, I would have to do it by a different way and theyprovided me with ample support on my journey. As itturned out, I'm the first in my family to graduate fromcollege, the first to have taken an active interest in politics,the arts, and literature. 82Another person with a disability who testified wasIrving Kenneth Zola, who now teaches sociology atBrandeis University. After he had polio, he usedcanes with leg and back supports for walking; hisrehabilitation agency advised him to go to a vocationalschool, and people at the agency "were upsetwhen I was accepted at Harvard University." 83Mary Jane Owen was once told that her daughterwas mentally retarded; she later graduated cumlaude from Harvard. 84Margaret Burley told the Commission about her24-year-old son who "was diagnosed at varioustimes in his life as having an IQ of somewherety).81Id. at 123 (testimony of John Kemp, Director of HumanResources, National Easter Seal Society).82Id. at 269-70 (testimony of Robert R. Williams, ProjectAnalyst, D.C. Association for Retarded Citizens).83Id. at 178 (testimony of Prof. Irving Kenneth Zola, Departmentof Sociology, Brandeis University).84Id. at 137 (testimony of Mary Jane Owen, Director, DisabilityFocus, Inc.).

etween 5 and 42. . . .He is totally blind, somewhathearing impaired. . . .It has been said he is emotionallydisturbed. He has had every label you wouldwant to put on him. ..." When he was young,medical personnel told her that he would adverselyaffect her other three children and urged her to "puthim away." She testified, however, that he nowworks 5 days a week and enjoys going to rock androll concerts and nightclubs with friends. "[H]e canenjoy life. . . .He is just like anybody else, and Iwill tell you my other children have turned out to bebetter citizens, and I think our whole family hasbeen improved [by his presence]." 85Special Education Professor H. Rutherford Turnbull,himself the parent of a child with mentalretardation, has analyzed letters written to theDepartment of Health and Human Services as partof the public comment on the "Baby Doe" regulationsunder section 504. Letters written by peoplewith disabilities or their family members described anumber of instances in which pessimistic predictionsmade by physicians were later proved inaccurate.Thirty percent of the correspondents indicated alack of confidence in health care providers. 88The Limitations of Medical ExperienceWhy do so many negative predictions about thefuture quality of life of children with disabilities turnout to be wrong? Considerable evidence points to asignificant tendency among health care providers tounderestimate the capacities of children with disabilitiesand erroneously to convey unduly pessimisticprognoses to parents about their projected quality oflife.In the words of Surgeon General Koop, "[N]opediatrician can be expected to know what all of thecommunity supports are that might be available to achild with a given diagnosis. He might understandhemophilia perfectly well in the community, but notcystic fibrosis." 87 Dr. Koop continued, "Therefore,it has been my lifelong endeavor to prevent snap85Id. at 257-58 (testimony of Margaret Burley, Director, OhioCoalition for the Education of Handicapped Children).86Id. at 42-43 (testimony of Prof. H. Rutherford Turnbull,Department of Special Education, University of Kansas). ProfessorTurnbull's written statement excerpts a number of theseletters. See app. B. It also cites a number of publications andresearch studies that document "the positive quality of life thatpeople with severe to mild physical or mental disabilities can haveand do have." Id.87Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 8 (1985) (vol. I) (testimony of C.diagnoses, prognostications made without sufficientknowledge. . . ." 88Dr. David McLone testified:[W]hen you look at the criteria that have been used, suchas a child who has a T-12 level shouldn't be operated on—Dr. John [Lorber], a pediatrician from England, is the onewho first advanced that criterion—when you look at theresults that he published in 1981, in which he treatedsomething like 30 percent of the entire population—if youlook at those 30 percent survivors and compare them toour study in which we treated essentially all children, theyare not significantly different. So the selection criteria thathave been used to select these children that is supposed tobe predictive of quality of life or outcome have beenshown in almost every center in the United States to beinvalid and not predictive and do not produce a populationof children with spina bifida who are superior to the groupwhere everyone is treated. 89Wolraich, Siperstein, and O'Keefe surveyed randomsamples of pediatricians on their assumptionsabout persons with varying degrees of mentalretardation. They asked pediatricians to describespecific skills that each group could be expected todevelop and compared their answers with those ofphysician members of the American Association onMental Deficiency (now the American Associationon Mental Retardation, or AAMR). They thencompared the answers of each of the two groupswith those of special educators and social workerswho were also members of the association. "Pediatricianswere strikingly restrictive in their expectationsof the capabilities of severely mentally retardedindividuals. Their categorizations placed these individualsas devoid of most human capabilities, includingthe ability to sustain friendships; pediatriciansbelieved they were unlikely to work in any settingor reside outside an institutional setting." 90 Thepediatricians had significantly more pessimistic expectationsthan the physician members of theAAMR, who in turn had significantly lower expectationsthan the special educator and social workermembers. 91Everett Koop, M.D., Surgeon General, U.S. Public HealthService).88Id89Id. at 12 (testimony of David McLone, M.D., Chairman,Division of Pediatric Neurosurgery, Children's Memorial Hospital,Chicago, 111.).90Wolraich, Siperstein & O'Keefe, Pediatricians' Perceptions ofMentally Retarded Individuals, 80 Pediatrics 643, 647 (1987).91Id. at 648. See also Protection of Handicapped Newborns:Hearing Before the United States Commission on Civil Rights 49(1986) (vol. II) (testimony of Carlton Sherwood) (As a result of43

Another survey by Siperstein, Wolraich, Reed,and O'Keefe queried a random sample of Fellows ofthe American Academy of Pediatrics on their viewsof the future for a child born with spina bifidawithout hydrocephalus and with hydrocephalus ofvarying severity. 92 The differences in projectionbased on degree of hydrocephalus were great. Forexample, 47.9 percent thought the child withouthydrocephalus would live in an unsupervised apartment;only 2.1 percent believed such a child wouldrequire institutionalization. On the other hand, thechild with severe hydrocephalus was expected byonly 2.9 percent to live in an unsupervised apartmentand by 54.3 percent to live in an institution.Similarly, 53.8 percent thought the child withouthydrocephalus would have skilled competitive employment,with 5.0 percent predicting that such achild would be incapable of any employment. Fully66 percent stated that the child with severe hydrocephaluswould be incapable of any employment,and only 2.3 percent predicted that the child couldenter skilled competitive employment. Only 4.6percent believed the child with severe hydrocephaluswould be capable of any type of unsupervisedemployment. 93Evidently most of the pediatricians thought thatas the degree of hydrocephalus increases, so does thedegree of mental retardation, and also believed thatas the degree of mental retardation increases, thecapacity for independent and productive livingdecreases. 94 However, as the authors of the studypointed out, the pediatricians were wrong:Yet the findings concerning the effect of hydrocephalus onthe intellectual abilities of children born with meningomyeloceleindicate a discrepancy between what the pediatriciansperceived as the impact of hydrocephalus andcurrent information about the actual impact.In contrast to the pediatricians' prognoses for mentalretardation, actual follow-up studies of children withmeningomyelocele accompanied by hydrocephalus havefound that the intellectual capabilities of these children aredifficult to predict. Although there is an increased chancethat there will be some intellectual impairment, otherfactors, such as shunt infection, are more important. Infact, five studies found no clear relationship betweenintelligence and the degree of hydrocephalus. Even ifthere is a relationship between hydrocephalus and mentalretardation, as one study did find in correlating thepalladium thickness to subsequent intelligence, it does notappear that the degree of mental retardation is as low aspediatricians perceive it to be. When the degree of mentalretardation was determined by calculating the meanintelligence quotient scores for children with meningomyeloceleand varying degrees of hydrocephalus, mostchildren with severe hydrocephalus had mild to moderateretardation (mean IQ 57.6). In contrast, the pediatricians inthis study predicted that those children were likely tofunction at a much lower level. "Thus it appears thatpediatricians have an unduly pessimistic perception aboutthe eventual intellectual abilities of children born withmeningomyelocele who have severe hydrocephalus." 95Physicians may have such a propensity for negativeprognosis at least in part because they tend tosee children with disabilities at the time that thechildren are fighting medical problems, when theyare in the hospital—when their condition is at itsworst. 96 Those who have contact with people withdisabilities on a more regular basis, when they arenot in an immediate medical crisis—such as theirteachers, coworkers, and family members—tend tohave much more positive views of their abilities.According to Dr. Darling: "[T]he few pediatricianswho are wholeheartedly in support of treatment forthe disabilities that I have known have all, interestinglyenough, had a sibling or other close familymember who did have a disability." 97 In the sampleDr. Darling studied, however, only 7 percent of thepediatricians had a close family member who had adisability. 98Unfortunately, despite the many instances inwhich pessimistic quality of life projections havebeen proved dramatically wrong, all too frequentlyhis investigations, Sherwood concluded, "[D]octors frequentlyexaggerate the degree of the handicapped newborn's illness in aneffort to justify their decisions and their prejudices.") A possibleexplanation is that physicians are most likely to see persons withdisabilities only when they are sick. See infra notes 96-97 andaccompanying text.92Siperstein, Wolraich, Reed & O'Keefe, Medical Decisions andPrognostications of Pediatricians for Infants with Meningomyelocele,113 The Journal of Pediatrics 835 (1988).93Id. at 838, table 2. The results in this table are reprinted inchap. 4 of this report.94Chap. 4 includes a detailed analysis and empirical refutation ofthe latter assumption.4495Siperstein, Wolraich, Reed and O'Keefe, supra note 90, at 839(footnotes omitted).96Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 115 (1986) (vol. II) (testimonyof Ed Roberts, President, World Institute on Disability).97Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 186 (1986) (vol. II) (testimonyof Dr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc.). Dr. Darlingcommented, "I think that the experience of getting to know aperson with a disability is a significant experience in changing theway a person views that situation. . . ." Id.98Id. at 183.

the prophecies themselves help to bring about whatthey predict. As Ed Roberts testified: "People whoare fundamentally seen as less than they are oftenaccept that. It becomes very self-fulfilling whenyou're put away or put in a nursing home; you beginto accept it." 99Dr. Rosalyn Benjamin Darling, who has conductedstudies of the physicians and families of childrenwith disabilities, testified that these negative attitudesare often based on the nature of the individual'sbackground. 100 Surgeon General Koop expresseda similar view:The snap judgment by the physician. . .can be based uponignorance. It can also be based upon prejudice. And thatprejudice might be of two kinds. One, having seen asimilar patient in the past that he didn't think had thequality of life that he liked, he might advise that familythat nothing should be done. Or his prejudice may bealong the lines, which I think is more common, and that isa stranger looking at a defective newborn baby says, "Gee,if that were mine, I couldn't hack it." But it isn't his, andthe parents feel quite differently about their child than astrange physician. 101Families, Society, and Persons withDisabilitiesThe quality of life argument extends beyond thelife of the person with a disability. It is frequentlyargued that the continued existence of a person withdisabilities will damage the quality of life of theperson's family, or of society as a whole. 102 In otherwords, the burden the person creates for othersoutweighs the benefits they experience because sheor he exists. Dr. Ellison testified:I do think that factors, such as if you have to take homea child who requires 24-hour nursing care,. . .and societyprovides no other person but the mother and the father,but mostly the mother to do that, that is to say, there's norespite care, there's no homemaker service, there's no oneelse who is going to care for that child, and in addition tothat, the family has to pay for a good many of the medical99Id. at 105 (testimony of Ed Roberts, President, World Instituteon Disability).100 Id. at 188-89 (testimony of Dr. Rosalyn Benjamin Darling,Director, Early Intervention Services, City Council Clinic inJohnstown, Inc.).101 Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 11-12 (1985) (vol. I) (testimonyof C. Everett Koop, M.D., Surgeon General, U.S. Public HealthService).102See chap. 4 for a discussion of the economic effect on societyas a whole.103Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 223 (1986) (vol. II) (testimonyexpenses for that, I think the family ought to be permittedto participate in that discussion and in that decision. 103A letter submitted for the record by Dr. WalterOwens (who delivered Bloomington's Infant Doe)exemplifies a willingness to make denial of treatmentdecisions based on the utility of the life to others.The anonymous woman followed Dr. Owen's 1971advice to deny treatment to her child born withspina bifida, hydrocephalus, and unspecified "otheranomalies."I don't think I would be able to have the happy, completequality of life I have now if I had not made the properdecision about that baby, based on your wise and compassionatecounsel. My decision might seem self-serving tosome, but in my heart, I truly feel that I made that choicebased on that baby's lack of potential for a meaningful life,and yes, for my own need for a full life too. 104Similarly, in the Bloomington Infant Doe caseitself, the trial court's opinion reveals that the father"testified that. . .he and his wife have determinedthat it is in the best interest of the Infant Doe and thetwo children who are at home and their familyentity as a whole" that the child should not beprovided lifesaving surgery. 105Children with disabilities, thus, are alleged to havea negative effect on their parents' qualities of life.Dr. Darling's research indicates that the sort ofparental attitude exemplified by Dr. Owen's correspondentand the father of Bloomington's Baby Doetends to change over time and with increasedinteraction with the child:Parents. . .start out with the same kindof. . .stigmatizing attitude physicians have. . . .. . .Even though the initial experience tends to benegative, usually within a short period of time, attitudesturn around.Parents realize that this child is just as lovable asanybody else's child, and they begin to see positive aspectsof Dr. Patricia Ellison, Research Professor, Department ofPsychology, University of Denver).lM Letter from anonymous person to Dr. Walter Owens (Aug.20, 1983) (available in Commission files).«» In re Treatment and Care of Infant Doe, No. GU 8204-004A,slip op. at 2 (Monroe Co. Cir. Ct. Apr. 12, 1982), reprinted inDeclaratory Judgment in the Infant Doe Case, 2 Issues in L. &Med. 77, 79 (1986), petition for writ of mandamus and prohibitiondenied sub nom. State of Indiana ex rel. Infant Doe v. MonroeCircuit Court, No. 482 S 140 (Ind. Apr. 14, 1982), appeal dismissedsub nom. In re Guardianship of Infant Doe, No. 1-782A 157 (Ind.Ct. App. Feb. 3, 1983), petition for transfer denied, No. 1-782 A157 (Ind. June 15, 1983), cert denied, 464 U.S. 961 (1983).45

of life with a child who is disabled. Many parents havesaid that it has become a maturing kind of process withthem. Living with a problem that can't be solved is a verymaturing kind of thing. Many become exposed to a wholeworld of people and activities that they never knewexisted before. Once it happens, they learn to make thebest of it, and even learn to find some positive aspects of itand those aspects are the very things parents don't hearright at the beginning in that decisionmaking situation.. . . 106In both the Baby Jane Doe case of 1983-84 107 andthe Milwaukee Baby Doe case of 1987 108 the parentsultimately decided to provide the lifesaving surgerycourts had ruled they could legally deny.The deputy director of the National InformationCenter for Handicapped Children and Youth, referringto comments concerning burdens imposed onparents by the continued life of children withdisabilities, testified:I have supported hundreds of parents over the 12 yearsthat I have worked, and when parents are supported in thehelp to their children, and when the medical support isgiven, even for severely handicapped children, I have notmet a parent yet that does not want to do it if they can.And I think it is our job to make sure that they have thosesupportive services. 109Propriety of Quality of Life JudgmentsThe deficiencies in quality of life assessments aredemonstrated above. The more fundamental questionis: to what extent should quality of life judgmentsbe viewed as acceptable grounds for life anddeath decisions?There is an important difference between technicalmedical judgments about whether a given courseof treatment is likely or not to preserve life orameliorate an impairment, and judgments aboutwhether a person's life should or should not bepreserved by giving lifesaving treatment. The firstsort of judgment is one that is uniquely medical innature. The second sort of judgment is not, properlyspeaking, a "medical" one. It is a social judgmentabout the value or desirability of particular people'slives. This no more becomes a "medical" judgmentby virtue of its implementation through the denial orprovision of medical treatment than the decisionwhether to impose capital punishment becomes a"medical" judgment if execution is to be by lethalinjection. 110Disability rights advocates argue that to take intoconsideration the burden that children with disabilitiesmight impose on their families or society indeciding whether they should live or die constitutesdiscrimination on the basis of disability. AdrienneAsch testified:[Disabled people. . .have separate interests and civilrights apart from any family, societal, economic, social, oremotional burden that they might cause. Other peoplecause burdens, too, but we don't consider whether theyshould be alive, if it is all right with someone else. . . .Wetalk about the burden that disabled people will cause totheir families, to their siblings, as though it means that theonly way that disabled children should be allowed to liveis if it is all right with someone else. 111Recent decades have seen significant althoughmixed progress in understanding the burdens thatsociety places on people with disabilities and inrecognition of their rights and full humanity. At theFederal level, section 504 of the Rehabilitation Actof 1973 112 applies a general principle of nondiscriminationbased on handicap to all programs or activitiesreceiving Federal financial assistance; the Educationfor All Handicapped Children Act of 1975 113promises to all children with disabilities a "freeappropriate public education which emphasizes specialeducation and related services designed to meettheir unique needs"; the Developmental DisabilitiesAssistance and Bill of Rights Act 114 gives theNation's assurance "that all persons with developmentaldisabilities receive the services and otherassistance and opportunities necessary to enable such106Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 184-85 (1986) (vol. II) (testimonyof Dr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc.).107See supra text accompanying notes 54-72.108In re T.A.P., No. 03231186 (Milwaukee County, Wise. Cir.Ct. July 31, 1987), rehearing (Aug. 12-13, 1987).109Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 256 (1986) (vol. II) (testimonyof Patricia McGill Smith, Deputy Director, National InformationCenter for Handicapped Children and Youth).110See id. at 116—17 (testimony of Prof. Ruth Luckasson,Department of Special Education, University of New Mexico); id.at 202 (testimony of Dr. Rosalyn Benjamin Darling, Director,Early Intervention Services, City Council Clinic in Johnstown,Inc.).111Id. at 126 (testimony of Adrienne Asch, Adjunct Lecturer inSocial Psychology, City College of New York)."• 29 U.S.C.A. §794 (West Supp. 1988).11320 U.S.C.A. §1401 note (West 1978 & Supp. 1988).11442 U.S.C.A. §§6000-6083 (West 1983 & Supp. 1988).46

persons to achieve their maximum potential throughincreased independence, productivity, and integrationinto the community"; and the ArchitecturalBarriers Act of 1968 115 is intended to make publicbuildings physically accessible to people with disabilities.116It is the interpretation of the Department ofHealth and Human Services, the Federal agencycharged with implementing the Child AbuseAmendments of 1984, that "the law [does] notpermit life and death treatment decisions to be madeon the basis of subjective opinions regarding thefuture 'quality of life' of a retarded or disabledperson." 117 Before passage of the Child AbuseAmendments, nine major disability and medicalassociations adopted a set of "Principles of Treatment"that also rejected the use of quality of lifecriteria: "Considerations such as anticipated oractual limited potential of an individual and presentor future lack of available community resources areirrelevant and must not determine the decisionsconcerning medical care." 118ConclusionThe bases typically advanced to support denial oflifesaving medical treatment, food, and fluids basedon disability—that the quality of life of a person witha disability will be unacceptably poor, or that such aperson's continued existence will impose an unacceptableburden on his family or on the Nation as awhole—are often grounded in misinformation, inaccuratestereotypes, and negative attitudes aboutpeople with disabilities. A country committed to thecivil rights of all should address the very realproblems people with disabilities and their familiesface through fostering supportive services and socialacceptance, and through defending their rights toaccessible and integrated transportation, housing,education, health care, and employment—not byeliminating those with disabilities.11542 U.S.C.A. §§4151 to 4157 (West 1977 & Supp. 1988).nsSee generally U.S. Commission on Civil Rights, Accommodatingthe Spectrum of Individual Abilities 46-62 (1983).117Child Abuse and Neglect Prevention and Treatment Program,50 Fed. Reg. 14878, 14879 (1985). See also id. at 14880; 45C.F.R. pt. 1340 App. Interpretative Guideline 9 (1987); chap. 7.118Joint Policy Statement: Principles of Treatment of DisabledInfants, 73 Pediatrics 559, 559 (1984). The cosigning organizationswere the Association for Retarded Citizens, the National Down'sSyndrome Congress, the American Coalition of Citizens withDisabilities, Inc., the Association for Persons with SevereHandicaps, the American Association on Mental Deficiency, theAmerican Association of University Affiliated Programs forPersons with Developmental Disabilities, the Spina Bifida Associationof America, the National Association of Children's Hospitalsand Related Institutions, Inc., and the American Academy ofPediatrics. However, the American Academy of Pediatrics hassince argued, with regard to the Child Abuse Amendments, thatCongress did not "clearly intendQ to exclude consideration of theinfant's quality of life." Comment of the American Academy ofPediatrics on Proposed Rules Regarding Child Abuse NeglectPrevention and Treatment Program 30 (Feb. 8, 1985), quoted inNicholson, Horowitz & Parry, Model Procedures for ChildProtective Service Agencies Responding to Reports of WithholdingMedically Indicated Treatment from Disabled Infants With Life-Threatening Conditions, 10 Mental & Physical Disability L. Rep.220, 227 (1986).47

Chapter 4The Role of Economic Considerations inDenials of Medical TreatmentAn argument frequently heard in favor of denialof treatment is the claim that the costs associatedwith children born with disabilities create a burdentoo great to be borne by family or society.For example, Dr. Walter Owens, the physician inattendance during the death of Bloomington's InfantDoe, told the Civil Rights Commission:In an ideal society, one might say we should consider onlythe welfare of the child, but this is not an ideal world andwe do not have unlimited resources. . . .Money which is spent—and we're talking of many times$100,000 or even $500,000 or even $1 million spent onsuch children—that is money not available for the educationof normal children. 1A similar perspective was articulated by Dr.George Crile, former head of the Department ofGeneral Surgery of the Cleveland Clinic, whoargued in 1984, shortly after passage of the ChildAbuse Amendments:Despite the law, the debate. . .continues. . . .[The question]must be viewed. . .in the light of. . .society's rightfor its members to have productive and pleasant lives, notto be lived mainly to support the growing numbers ofhopelessly disabled, often unconscious people whose1Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 205-06 (1986) (vol. II) (testimonyof Walter Owens, M.D., Bloomington Obstetrics and Gynecology,Inc.).2Crile, The Right to Life, Med. Tribune, Dec. 19, 1984, at 27.Commenting on a draft of relevant portions of this report, Dr.Crile charged that this quotation gives a "false impression" of hisposition because he has "never stood against rehabilitation of anyone with a brain that was functional or a body that wassalvageable. . . .1 am referring to people who are hopelesslydisabled, and that means disabled to the extent that rehabilitationcould not help them to improve or recover." Letter from Georgecostly existence is consuming so much of the grossnational product. . . . 2If a child is born with Down syndrome, Crilewrote:parents can be told that their child has no chance ofgrowing up to be able to take care of itself. If the parentsstill want to rear their child, that should be their decision,but there should be no support from the community or thestate.I wish to emphasize that I do not believe that existenceis necessarily unhappy for the child with Down's nor thatsuch a child cannot be a joy to its parents. That is why theparents should make the final decision. It remains that achild with Down's syndrome. . .will not grow up to beself-sustaining or able to contribute to the economy.Neither the community nor taxpayers should be obliged tosupport the child. 3Similar thinking is found in an article on costbenefitanalysis published in July 1984 in the journalof the American Academy of Pediatrics. 4 Thearticle was written by doctors and researchersaffiliated with the Women and Infants Hospital ofRhode Island and Brown University.This cost-benefit analysis was based on the recordsof 247 infants who weighed between 500 andCrile, Jr., M.D., to William J. Howard, General Counsel, U.S.Commission on Civil Rights (Sept. 15, 1988) (emphasis inoriginal), reprinted in app. D. As his article (which is reprinted infull in app. D) makes clear, however, Dr. Crile's notion of ahopelessly nonfunctional brain is broad enough to include "totallyincurable and accurately diagnosable brain defects such asDown's syndrome." Crile, supra, at 27.3Id. For a consideration of the validity of such claims aboutthose with Down syndrome, see chap. 3.* Walker, Feldman, Vohr & Oh, Cost-Benefit Analysis of NeonatalIntensive Care for Infants Weighing Less Than 1,000 Grams atBirth, 74 Pediatrics 20 (1984).48

999 grams at birth and who were born betweenJanuary 1977 and December 1981. Eighty-sevenpercent of the survivors were evaluated for from 1to 5 years. Most (74 percent) were unimpaired orminimally impaired. Ten percent were "moderatelyimpaired" and 16 percent were labeled "severelyhandicapped." Their projected lifetime costs (estimatedin 1982 dollars) ranged from $362,992 for thelowest birthweight group—600 to 699 grams—to$40,647 per survivor for those in the highest birthweightgroup—900 to 999 grams. Lifetime earningswere estimated at zero for those in the 500 to 699gram birthweight group and $77,084 for those in thehighest birthweight group of 900 to 999 grams. 5The authors concluded that "neonatal intensivecare may not be justifiable for infants weighing lessthan 900 grams at birth." 6 They reached thisconclusion even though 63 percent of the 700 to 799gram and 57 percent of the 800 to 899 grambirthweight groups had no or minimal disabilities. 7They did so by straightforwardly comparing theirestimates of the cost of lifetime care to theirestimates of lifetime earnings. 8Cost-benefit analysis as a justification for denial oftreatment to people with disabilities implies discriminationbased on disability, because such evaluationsare not typically employed in other contexts. 9 TheCommission emphatically rejects the view thatlifesaving medical services should be provided ordenied to any group of people based on thenestimatedeconomic worth to society. The Commissionconsiders it important, however, to give criticalexamination to the factual premises of an argumentfor denial of treatment that is made as frequently asis the economic one.Underlying most cost-benefit projections are twosuperficially plausible assumptions: (1) the moreserious the level of disability, the poorer the prognosisfor residential placement and productive employment;and (2) the poorer the prognosis, the higherthe net cost of lifetime care. 10This approach is based on what may be called a"mythology" of disability, a mythology grounded inthe basic assumption that the circumstances of• Id. at 20.6Id.•> Id. at 22 (table 3).* Id. at 20.9For example, we do not routinely compare the costs juveniledelinquents are likely to cause society with their probableeconomic benefits and then choose death for those with regard towhom the costs are calculated to exceed the benefits.disability (i.e., the living arrangements and work andsocial opportunities for those who have disabilities)emanate from the disability itself, and hence thecosts associated with these arrangements are thedirect result of the disability. However, as shownbelow, this assumption has been refuted during thepast 10 years by the performance of people withdisabilities.The importance of the assumptions that underliethis mythology in the practice of denial of treatmentshould not be underestimated. To understand andcritically appraise estimates of long term care orpublic costs associated with severe disability as theyappear in the medical literature, it is important torecognize how dependent these estimates are onassessing the potential of the individual with thedisability.A recent medical journal article reported theresults of a random survey of 604 Fellows of theAmerican Academy of Pediatrics. Of the 604 pediatricianscontacted, 373 or 62 percent returned thequestionnaires; 56 of these were discarded due toincomplete information. 11One series of questions inquired what each doctorthought the future would be like, in terms of theirresidential placement and potential for work, forchildren with spina bifida. Approximately half thedoctors were asked to make predictions aboutchildren born with spina bifida but no hydrocephalusand those with spina bifida and moderatehydrocephalus; the other half were asked to makepredictions about those with no hydrocephalus andthose with severe hydrocephalus. That is, the questionnaireascertained where the doctors thoughteach of these examples of disability would place achild on the spectrum from relative independence inliving and working all the way to total dependencewith no hope of securing employment.The results of this survey, undertaken to determinehow pediatricians would influence treatmentdecisions based on the presence of varying degreesof hydrocephalus in children born with spina bifida,suggested that most pediatricians assume that moderatehydrocephalus leads inexorably to a lessened10As later portions of this chapter demonstrate, such assumptionsare inaccurate in light of the progress made in the lastdecade that has enabled even those labeled most severely disabledto live in community settings and to become productive membersof society.11Siperstein, Wolraich, Reed, & O'Keefe, Medical Decisions andPrognostications of Pediatricians for Infants With Meningomyelocele,113 J. of Pediatrics 835 (1988).49

©TABLE 4.1Pediatricians' Responses to thePrognostic Belief ScaleInfant withouthydrocephalusn = 317Infant withmoderatehydrocephalusn = 139Infant withseverehydrocephalusn = 178Prognostication for Adult CapabilitiesMean Score21.715.86.4Standard Deviation6.18.07.1Prognostications forResidential PlacementUnsupervised apartment47.9%18.5%2.9%Supervised apartment35.7%31.1%12.0%Group home14.2%31.1%30.8%Institution2.1%14.5%54.3%Prognostications for Vocational PlacementSkilled competitive employment53.8%19.7%2.3%Unskilled competitive employment5.6%6.6%2.3%Supervised full-time employment20.9%25.4%7.6%Supervised part-time employment14.7%31.1%21.5%Incapable of any employment5.0%17.22%66.3%Source: Siperstein, Wolraich, Reed & O'Keefe, Medical Decisions and Prognostications for Infants with Meningomyelocele, 113 Journal ofPediatrics 838 (1988). Reprinted with permission.

ability to live independently (say only in a supervisedapartment or group home) and that severehydrocephalus leads just as inexorably to life in aninstitution. (See table 4.1.) They make similar, assumptionsconcerning the child's ability to work—that moderate hydrocephalus makes only supervisedemployment possible, while severe hydrocephalusmeans no employment at all. 12It is not surprising that these predictions result in atendency by pediatricians to incline away fromencouraging lifesaving surgery toward discouragingit as hydrocephalus becomes more severe. Although34.2 percent of the pediatricians would either notknow what to do or would provide only supportivecare if the child were their own and had spina bifidawithout hydrocephalus, 75.7 percent would notknow what to do or would provide only supportivecare if their child had spina bifida with severehydrocephalus. 13Costs of Residential PlacementA recent study of the costs of residential placementsfor over 1,000 persons with severe disabilitiesin three States calls into question the assumption thatthe more severe the disability, the greater the cost ofresidential placement.The objective of [the project] was to identify differencesin cr>sts associated with providing services to persons indifferent types of residential arrangements and withvarying levels of disability. Accordingly, in selectingservice systems for study, the aim was to identify systemsembracing a variety of residential service options.Two of the three regional systems have been recognizedby the University of Syracuse Center on Human Policy as"model" residential programs. The third, in New Hampshirehas been widely recognized for its commitment toserve persons with all levels of disability in small community-basedliving arrangements and integrated work settings.14Each system relies on a broad range of integratedcommunity homes, including group homes, apartments,and family-type homes. Using data from1984-85 and 1985-86, the study examined costs for1,287 individuals living in 169 group homes, 151family homes, and 43 apartments. 15 Cost data werealso examined for approximately 250 persons fromthese three regions living in institutions. 16 Eachindividual was identified on a scale of 1 to 100 todetermine similar and differing levels of disability. 17The study concluded: "The average annual cost ofresidential services per client varied more, far more,by the type of residential option employed than bythe level of need of the client." 18 Group homes,apartments, and family-type homes were significantlyless costly than institutions for individuals at alllevels of disability, including the most severe levels.19 Persons labeled and considered most disabled,severely and profoundly handicapped by everydefinition, were found in significant numbers in allfour residential options (institutions, group homes,apartments, and surrogate family homes). 20 Morepersons in the most severe range of disabilities werefound in community settings than in institutionalones. 21The definition of severe disability used in thisstudy was limited to those individuals who usuallyhad more than one very significant disability. Profoundmental retardation alone was not consideredenough for a classification of severe disability by anyof the regions. For such a classification, a person hadto experience severe retardation together withblindness or deafness or complex medical or behavioralneeds. 22Despite widely divergent cost of living differencesand salary differences in the three regions, forall:12Id. at 838, table 2. The article points out that these assumptionsare erroneous.13Id at 837, table 1. See chap. 3 (text accompanying notes92-95) and chap. 9 (text accompanying notes 13-18) for a furtherdiscussion of this survey.)14Ashbaugh & Nerney, An Analysis of the Costs of ServingPersons with Mental Retardation by Type of Residential Arrangement:Macomb-Oakland Region in Michigan, Region V inNebraska, and Region V in New Hampshire 2 (1988).15Id at 2. Costs for Michigan and Nebraska, July 1, 1984, toJune 30, 1985; for New Hampshire, July 1, 1985, to June 30, 1986.16Interview with Thomas Nerney, coauthor and projectcoordinator for the above-referenced study (Nov. 29, 1988)[hereinafter Nerney interview].17Ashbaugh & Nerney, supra note 15 at 6.18Id. at 14.19Nerney interview, supra note 17.20More than 33 percent of the sample met the definition of thoseconsidered most severely disabled. Id.21Id. In Michigan's Macomb-Oakland region, there were fivetimes the number of those considered most severely disabledliving in community homes than in institutions.22Id.51

• The differences in average cost per person peryear for those with identical disabilities rangedfrom over 2 times to as much as 6 times as muchfrom one option to another. 23• The average institutional cost was higher thanany of the average community costs no matterwhich community option was chosen and nomatter what the level of disability. 24• Administrators (public officials) agreed thatthe most costly option, the institution, was inevery case the least desirable programmatically:the person with a disability benefited the leastfrom the institution and in most cases was harmedby it.• Administrators agreed that family or familyscaleplacements were always preferable to institutionalplacements for children. 25• The smaller the unit of community residentialplacement, the lower the average cost incurred,no matter the severity of the disability. 26• Family-type placements with appropriatebackup supports were the least costly and, forchildren, the most desirable. 27The cost differentials for the same level of disabilityby nature of residential placement in Michigan'sMacomb-Oakland system, Nebraska's Region Vsystem, and Region V in New Hampshire are shownin figure 4.1.Family PlacementThe trend in providing care for those with themost severe disabilities appears to be moving awayfrom the use of high-cost institutional settings to avariety of community-based ones with significantprogrammatic and fiscal differences. A clear trend in23Id. See also Ashbaugh & Nerney, supra note 15, at fig. 16 andfig. 35.24Nerney interview, supra note 17. For example, in Michigan'sMacomb-Oakland system, community placement could result insaving over $47,000 per person per year compared to institutionalplacement.25Id. See also Medicaid Home and Community Quality ServicesAct of 1987: Hearing on S. 1673 Before the Subcomm. on Health ofthe Senate Comm. on Finance, 100th Cong., 2d Sess. 5 (1988)(hereinafter Medicaid Hearing) (statement of K. Charlie Lakin,Director of Research, Minnesota University Affiliated Programon Developmental Disabilities/Center for Residential and CommunityServices, Minneapolis, Minn.) (regarding the inferiority ofinstitutions to community-based settings).26Id. See also fig. 4.1, with regard to those considered "mostseverely disabled"; Ashbaugh & Nerney, supra note 15, at fig. 16and fig. 35.2728Nerney interview, supra note 17.Id.the direction of use of family-type placements, theleast costly alternative, is developing, especially forchildren. 28 It seems probable, therefore, that in realterms the average cost of residential placement forpeople with disabilities is headed downward, notupward.Despite the clear cost (and desirability) advantageof family placement, most contemporary Federaland State policies do not encourage it. There areimportant, often unrecognized, historical reasons forthis.In the early part of this century, the eugenicsmovement gave rise to the institutional program forpersons with disabilities, 29 with most public institutionsbeing established to remove persons withdisabilities from their communities and familiesbecause they were, mistakenly, thought to be dangerousand responsible for society's ills. 30 Theingrained pattern established by this practice goes along way toward explaining why it is still so difficultautomatically to think of and foster the natural (oradoptive) family as the most humane and logicalchoice for initial support when a child with adisability is born. 31As discussed above in chapter 1, governmentreports from the early part of this century labeledpersons with mental retardation and persons withdisabilities generally as "a parasitic, predatoryclass," "a danger to the race," and "a blight and amisfortune both to themselves and to the public." 32State laws required persons with disabilities to beremoved from the community and parents to surrendertheir children or allow State officials to takethem. 33 In the State of Washington it even became a29Motion and Brief Amici Curiae of Association for RetardedCitizens/USA, Association for Retarded Citizens/Texas, NationalDown Syndrome Congress, People First International andPeople First Organizations of Iowa, Louisiana, Michigan, Nebraska,Oregon and Washington, United Together, S.T.A.N.D.Together, Speaking for Ourselves, Consumer Advocacy Board ofthe Massachusetts Association for Retarded Citizens, TexasAdvocates, Wisconsin Advocates, Capitol People First, and Self-Advocates of Central New York at 5-6, Cleburne v. CleburneLiving Center, 473 U.S. 432 (1985) (No. 84-468).30D. Rothman & S. Rothman, The Willowbrook Wars 47 (1984).31See chap. 1 and text accompanying notes 36-59.32See chap. 1 and text accompanying notes 55-57.33Brief Amici Curiae of the American Coalition of Citizens withDisabilities, People First Organizations of California, Iowa,Louisiana, Michigan, Nebraska, Oregon and Washington, PeopleFirst International, United Together Organizations of Arkansas,California, Florida, Idaho, Kansas, Massachusetts, Minnesota, andMontana, Speaking for Ourselves of Pennsylvania, ConsumerAdvisory Board of Massachusetts, Self-Advocates of Central52

criminal offense, punishable by a fine, to keep a childwith mental retardation at home. 34More enlightened attitudes in recent decades ledto some reform. In the early 1970s, Congressallowed the States to begin using Federal medicaidfunds to improve the terrible conditions found ininstitutions. 35 The Federal medicaid route to reformresulted in an enormous investment of Federal andState dollars in the institutions. 36Soon, however, members of the disability rightsparent and advocacy movement came to the conclusionthat these institutions could not be reformed.Instead, they demanded that the individuals residingthere return to their communities. 37The use of what were originally called "alternatives"to the institutions, i.e., group homes andfamily homes, became commonplace. A number ofStates, including Maine, Rhode Island, 38 Michigan,Nebraska, and New Hampshire, established community-basedsystems. 39 The results were impressive:Numerous studies have compared social participation ofinstitution and community residents. They consistentlyand clearly find community residents to be better integrated.They go to more restaurants, more stores, moremovies, more sporting events. They go on more walks offthe facility grounds. They visit more often with friendswho live elsewhere. They are more likely to havefriendships with non-handicapped peers. They have morecontact with their own families. In short, they are betterintegrated in every conceivable way. 40These policies, however, did not address the needsof families who kept their children at home. 41 Thefiscal incentives to States remained with the institutionsfirst, the community homes a bad second, 42New York, Texas Advocates, Wisconsin Advocates, Disabled inAction of Pennsylvania, Disabled in Action of New York, and theNational Association of Protection and Advocacy Systems at13-14, Bowen v. Am. Hosp. Ass'n, 476 U.S. 610 (1986) [hereinafterACCD Amicus].34Cleburne amicus, supra note 33, at 13.35See generally S.B. Sarason & J. Doris, Educational Handicap,Public Policy and Social History (1979).36Medicaid Hearing, supra note 26, at 2 (opening statement ofSen. George Mitchell).37See, e.g., Pennhurst State School and Hosp. v. Halderman, 451U.S. 1, 6 & n.l (1981); Rothman & Rothman, supra note 31, at49-50.38Medicaid Hearing, supra note 26, at 2 (opening statement ofSen. George Mitchell).39Nerney, Nisbet & Conley, Economic Analysis of ThreeRegional Community Developmental Service Regions (1989) (inpress).40Id. at 5-6 (statement of K. Charlie Lakin, Director ofResearch, Minnesota University Affiliated Program on Developandthe natural family last. 43 Only recently has anattempt been made to change the Federal medicaidlegislation to give priority in funding to families andcommunity homes. Legislation to accomplish this,such as the Medicaid Home and Community QualityServices Act of 1987, has yet to be enacted. 44Because providing support for the family is the mostcost-efficient way to provide residential services,changing the economic incentives from the institutionto the family would cause the cost associatedwith disability to drop significantly.Productivity of Persons with Severe andProfound DisabilitiesState vocational rehabilitation agencies, togetherwith advocacy and service agencies, have begun tooffer new and experimental job training programsfor those with the most profound disabilities. 45These programs are the result of a relatively newconcept in employment training variously referredto as "supported employment" or, for school-ageadolescents, "transitional employment." 46 The evidenceof earning capacity among people commonlyviewed as inherently unproductive after less thanapproximately 5 years of Federal- and State-fundedemployment programs is dramatic.One example is a program run by a nonprofitagency, New England Business Associates. Underthe program, a job coach accompanies a person witha severe or profound disability to the place ofemployment, provides onsite assistance as needed,and helps train the individual while she or he isworking at a regular job paid for by an ordinaryemployer. This job coach fades back as the individumentalDisabilities/Center for Residential and Community Services,Minneapolis, Minn.).41Id. at 8-9 (statement of Valerie J. Bradley, President, HumanServices Research Institute, Cambridge, Mass.).42D. Braddock, R. Hemp & G. Fujiura, Public Expenditures forMental Retardation and Developmental Disabilities in the UnitedStates 50-52 (2d ed. 1986).43National Study Group on State Medicaid Strategies, TheCenter for the Study of Social Policy (Tom Doe, Director),Restructuring Medicaid: An Agenda for Change 11 (1983).44See Medicaid Hearing, supra note 26, at 1 (opening statementof Sen. George Mitchell) and 3 (opening statement of Sen. JohnChafee).45See generally Congress Passes Voc Rehab Bill: SupportedWork for CMIs E National Association of State Mental HealthProgram Directors Report: The U.S. Congress, Oct. 7, 1986, at 3-5.46Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 88 (1986) (vol. II) (testimony ofMadeleine Will, Assistant Secretary for Special Education andRehabilitative Services, U.S. Department of Education).53

FIGURE 4.1Comparative Costs of Institutions, Group Homes and Family Homes in Three StatesAverage annual per person costs for those considered "most severely disabled"Thousands of dollars8 0 ^Institution$72,000Group homesFamily homesMichigan(Macomb-Oakland)FY85Nebraska(Region V)FY85New Hampshire(Region V)FY86* Family home refers to individuals and families, not the natural parents, who take a person(s) with severe disabilities into their ownhome or apartment.

ai gains skills and income but remains alwaysavailable both to the individual with a disability andto the employer. 47Kathy Moore, executive director of New EnglandBusiness Associates, provided the Commission withthese examples of people active in the program:J. C. profoundly deaf, legally blind, severely retarded1987-88 earnings $7,860.00M. D. profoundly deaf, legally blind, brain tumor,mentally retarded, institutionalized at birth 1987-88 earnings$6,220.85M. Gl. profoundly deaf, totally blind, profoundly retarded,institutionalized at birth 1987-88 earnings $7,221.60M. K. profoundly deaf, totally blind, severely mentallyretarded 1987-88 earnings $2,163.00E. R. profoundly deaf, totally blind, severely retarded,progressive sensory neural loss 1987-88 earnings$10,400.00L. T. profoundly deaf, totally blind, severely retarded,institutionalized at birth 1987-88 earnings $332.13"A similar program for adults with autism andsevere behavioral difficulties has been operating inMontgomery County, Maryland, for almost 8 years.This program, run by Community Services forAutistic Adults and Children, included over 46persons ruled "unemployable" by every agency theyhad ever contacted. After living most of their livesin institutions, now all live in small homes inRockville, Maryland, and all earn at least theminimum wage in a program using supported employment.49An 8-year longitudinal study of the costs andbenefits of supported employment for 117 personswith moderate to severe mental retardation foundthat, in comparison to the $1,361,951 that wouldhave been required in SSI payments and alternativeservice programs had these persons not been employed,the supported employment program cost$1,212,117. Those participating in the program47Interviews with Kathy Moore, Executive Director, NewEngland Business Associates (Sept. 19-20, 1988).48Id.49Interview with Susan Goodman, Executive Director, CommunityServices for Autistic Children and Adults (Sept. 17, 1988).earned wages totaling $l,503,779. 50 In other words,in place of a net average cost of $11,640.61 for eachperson with moderate or severe mental retardation,with supported employment there was a net averagebenefit of $2,492.84 for each such person. Theauthors of the study pointed out that with ongoingjob retention, the net benefit will significantlyincrease over time, since the costs of supportiveemployment are substantially frontloaded while theaverage income is constant or increasing. 51 Furthermore,they noted:Our university-based demonstration is very small; in fact,the. . .consumers served over 8 years are unfortunatelydwarfed when compared with large day programs inwhich the sole purpose is to provide vocational or daycare services. Consider the dramatic savings in programs,over time, if substantial reorganization of the operations atthe centers were converted to community- or industrybasedprograms. It is in this area where the truly largedollar savings can be made over a multi-year time period. 82ConclusionDisability does entail cost. But the real economiccosts now associated with disability are less afunction of the disability or its severity than of apolicy that tends to segregate and isolate, at enormouspublic cost, those persons considered mostseverely disabled. The assumption has been that thelevel of severity of disability is the major determinantof lifetime costs and, consequently, that themore severely disabled a child may appear to be atbirth, the less likely it is that the child will be able tocontribute as an adult to his or her own economicsufficiency and the more expensive it will be to meetthat person's basic needs. Although this assumptionis unfounded, it has resulted in a self-fulfillingprophecy: a diagnosis of severe disability leads toplacement of a person in an institutional and nonworkenvironment that significantly limits thatperson's capability and entails far more expense thannecessary.50Hill, Wehman, Kregel, Banks & Metzler, Employment Outcomesfor People with Moderate and Severe Disabilities: An Eight-Year Longitudinal Analysis of Supported Competitive Employment,12 J. Ass'n for Persons with Severe Handicaps 182, 185-86 (1987).51Id. at 187-88.53Id. at 188 (emphasis in original).55

Chapter 5State LawWhat is the law governing denial of lifesavingmedical treatment to children with disabilities?Every State now provides a statutory basis for thecivil authorities to act to protect a child whose lifeor well-being is threatened by abuse or neglect. 1 In46 of those States, those that receive Federal fundingfor child abuse and neglect programs, this law mustbe applied to prevent the withholding of medicallyindicated treatment from disabled infants with lifethreateningconditions in order to comply with theChild Abuse Amendments of 1984. 2The Child Abuse Amendments were enactedlargely because Congress perceived preexistingState law to be inadequate to provide neededprotection. 3 To understand this perception, it ishelpful to contrast the near unanimity in recent State1See Ala. Code §26-14-1(2) (1986); Alaska Stat. §47.17.070(5)(1984); Ariz. Rev. Stat. Ann. §36-2281 (1986); Ark. Stat. Ann.§9-30-103(5)(A) (Supp. 1987); Cal. Pen. Code §11165(C) (West1982); Colo. Rev. Stat. § 19-l-103(20)(d) (1986); Conn. Gen. Stat.Ann. §46(b)-120(b) (West Supp. 1988); Del. Code Ann. tit. 31,§301(3) (1975); D.C. Code Ann. § 16-2301(9)(B) (1981); Fla. Stat.Ann. §39.01(37) (West Supp. 1988); Ga. Code Ann.§15-11-2(8)(A) (Supp. 1988); Hawaii Rev. Stat. §350(1)1 (Supp.1984); Idaho Code § 16-1602n-(l) (Supp. 1988); 111. Ann. Stat. ch.37, §802-3(1) (West Supp. 1988); Ind. Code Ann. §31-6-4-3(a)(l)(Burns 1987); Iowa Code Ann. §232.2(6)(e) (West 1985); Kan.Stat. Ann. §38-8O2(g)(l) (1981); Ky. Rev. Stat. Ann. § 199.01 l(b)(Michie 1982); La. Rev. Stat. Ann. §40:1299.36.1 (West Supp.1988); Me. Rev. Stat. Ann. tit. 22, §4002(1) (Supp. 1988); Md.Fam. Law Code Ann. §5-701(n)(2) (Supp. 1988); Mass. Gen.Laws Ann. ch. 119, §51A (West Supp. 1988); Mich. Comp. LawsAnn. §722.622(d) (West Supp. 1988); Minn. Stat. Ann.§626.556-2(C) (West Supp. 1988); Miss. Code Ann.§43-21-105(l)(i) (Supp. 1987); Mo. Ann. Stat. §210.110(5) (WestSupp. 1988); Mont Code Ann. §41-3-102(3)(C) (1987); Neb. Rev.Stat. §28-71O(3)(C) (1985); Nev. Rev. Stat. Ann. §2OO.5O8(3)(a)(Michie 1986); N.H. Rev. Stat. Ann. §169-C:3 XIX(b) (Supp.1987); N.J. Stat. Ann. §9:6-8.21(c)(4)(a) (West Supp. 1988); N.M.Stat. Ann. §30-6-l(A)(2) (1978); N.Y. Soc. Serv. Lawcases, which have ensured the provision of lifesavingmedical care to nondisabled children, with themixed record of State cases dealing with the withholdingof such care from children with disabilities.Increasing Societal Interest in ProtectingChildrenOver the past century, the States have significantlyexpanded their jurisdiction in protecting children.In 1874 a dying woman in New York City pleadedwith the parish visitor, Mrs. Etta Wheeler, to go tothe authorities about the incessant screams and criesfor help of a child in an adjacent apartment. WhenMrs. Wheeler finally agreed to do so, the police,district attorney, charitable agencies, and clergy allturned her away. So great was the universal respectfor absolute parental autonomy in decisions concern-§371.4-a(i)(A) (McKinney 1983); N.C. Gen. Stat. §7A-517(21)(Supp. 1988); N.D. Cent. Code § 27-2O-O2-5(a) (Supp. 1987);Ohio Rev. Code Ann. §2151.O3(C) (Anderson 1976); Okla. Stat.Ann. tit. 21, §845(B)(1) (West Supp. 1988); Or. Rev. Stat.§418.740(l)(e) (1987); Pa. Stat. Ann. tit. 11, §2203 (West Supp.1988); R.I. Gen. Laws §40-11-3 (Supp. 1987); S.C. Code Ann.§20-7-490(c)(3) (Law Co-op. 1985); S.D. Codified Laws Ann.§26-8-6(4) (1984); Tenn. Code Ann. §37-l-102(10)(D) (Supp.1987); Tex. Fam. Code Ann. §34.01 (West 1988); Utah Code Ann.§78-3a-2(17)(C) (1987); Vt. Stat. Ann. tit. 33, §682(3)(C) (Supp.1987); Va. Code Ann. §16.1-228(2) (1988); Wash. Rev. CodeAnn. §26.44.020(12) (West Supp. 1988); W. Va. Code§49-l-3(g)(l)(A) (1986); Wis. Stat. Ann. §48.981(l)(d) (West1987); Wyo. Stat. § 14-6-20 l(a)(xvi)( A) (1986).The same is true of other jurisdictions: Am. Samoa Code Ann.§45.2001(a)(l)(C) (1986); Guam Gov't Code §9120.20(c)(3)(Supp. 1970); P.R. Laws Ann. tit. 8, §404(b) (Supp. 1987); andV.I. Code Ann. tit. 5, §2502(20) (Supp. 1987).2See chap. 7 for a comprehensive discussion of the Child AbuseAmendments of 1984.3Such a perception was also a motive for efforts by theexecutive branch of the Federal Government to attempt specialmeasures under §504 of the Rehabilitation Act of 1973. See chap.6.56

ing their children that the only person she could getto help was the counsel for the American Society forthe Prevention of Cruelty to Animals, ElbridgeGerry. 4Gerry persuaded a judge to take a novel course: toissue an order requiring that the child be broughtbefore a court. In the court proceeding, 8-year-oldMary Ellen testified that she was beaten with a whipalmost daily, was given no bed or shoes, was neverpermitted outside except in the yard at night, andwas never allowed to play with other children. Shewas never kissed or caressed. Based on that testimony,the judge ordered her removed from the homeand allowed Mrs. Wheeler to assume her guardianship.5 This incident led Gerry to found the NewYork Society for the Prevention of Cruelty toChildren (NYSPCC) in 1875.The first child neglect statutes were relativelysimple and tended to cover merely the failure ofparents to provide for their children's upkeep. Thecoverage of the laws was gradually enlarged. By theend of the 1880s, for example, the New York statutewas broad enough to protect children from neglectin the provision of food, clothing, sanitation, andmedicine. 6In 1922 New York was among the first States toadopt a statute empowering courts to order thatmedical or surgical care be furnished to a child. 7Applying that statute two decades later, a courtobserved:It is doubtful that under the common law, the courts hadthe powers now conferred on them, to order treatment for4Landau, An Overview of Child Protection and the Abused andNeglected Child, in The Abused and Neglected Child 7, 9 (1982).See also Bopp & Balch, The Child Abuse Amendments of 1984 andTheir Implementing Regulations, 1 Issues in L. & Med. 91, 92(1985).5Landau, supra note 4, at 10.s1876 N.Y. Laws, ch. 122, §4; see also Cowley v. People, 83N.Y. 464 (1881) (benevolent institution subject to statute declaringit a misdemeanor to permit a child to be endangered or injuredin life or health).71922 N.Y. Laws ch. 547, §§2 and 23.8In re Rotkowitz, 175 Misc. 948, 25 N.Y.S. 624, 625 (1941).Under the common law, it was recognized that parents owedduties toward their children, as well as having rights over them.Blackstone, the preeminent legal commentator of his day,described the parent-child relationship and the responsibilities ofthe parent in this way:The duty of parents to provide for the maintenance of theirchildren, is a principle of natural law; an obligation,. . .laidon them not only by nature herself, but by their own properact, in bringing them into the world. . . .By begetting them,therefore, they have entered into a voluntary obligation, toendeavor, as far as in them lies, that the life which they havechildren to the extent even of a surgical operation or torequire of parents to do that which is promotive of theinterests and is protective of the rights of a child. We haveemerged from that period in. . .history. . ., and leftbehind its prejudices, biases and limitations. . . . 8In current law, State intervention to ensure medicalcare for nondisabled children, even over parentalobjection, is commonplace. Although recognitionand great deference is given to parental authority, 9parents do not have unbridled control over theirchildren. Their rights, whether rooted in the Constitutionor in a basic public policy, may be limited orterminated, particularly when they affect their children'slife and death. 10 "[T]he family itself is notbeyond regulation in the public interest." 11 Civilgovernment may act to "guard the general interestin youth's well being, the state as parens patriae mayrestrict the parent's control. . . ." 12Parens patriae is the legal doctrine which providesthat the state has the authority, in proper circumstances,to intervene in the normal parent-childrelationship for the protection of the child. Thedoctrine is largely composed of common law,distinguishing it from the provisions found in thechild protection statutes. The conception of thedoctrine of parens patriae, like that of other legaldoctrines, has developed over the past few centuriesas the common understanding of the role of law insociety, as well as the cultural, economic, and socialconditions, have changed. 13Under the modern understanding of that doctrine,the state can intervene to limit parental authority: 14bestowed shall be supported and preserved. And thus thechildren will have a perfect right of receiving maintenancefrom the parents.I W. Blackstone Commentaries* 435.9The Supreme Court observed in Wisconsin v. Yoder that:The history and culture of Western civilization reflect astrong tradition of parental concern for the nurture andupbringing of their children. The primary role of the parentsin the upbringing of their children is now established beyonddebate as an enduring American tradition.406 U.S. 205, 232 (1971). See also Pierce v. Society of Sisters, 268U.S. 510, 535 (1925) ("The child is not the mere creature of theState; those who nurture him and direct his destiny have theright, coupled with the high duty, to recognize and prepare himfor additional obligations.").10See Custody of A Minor, 375 Mass. 733, 379 N.E.2d 1053(1978).IIPrince v. Massachusetts, 321 U.S. 158, 166 (1944).12Id.13See generally Custer, The Origins of the Doctrine of ParensPatriae, 11 Emory L. J. 195 (1978).14In re N.H., 373 A.2d 851 (Vt. 1977).57

Like all authority. . .parental authority may be abused.Family privacy may become a cover for exploiting theinherent inequality between adult and child. Thus childrenwho, by definition, are both physically and psychologicallyat risk may sometimes be placed at further risk by theadult "caretakers" who are presumed to be essential totheir well-being. 15Although primary authority is vested in the parent,that authority is restricted, or even abrogated in full,whenever that authority is abused. In the words ofthe highest court of Massachusetts, "Parentalrights. . .do not clothe parents with life and deathauthority over their children." 16The most frequently encountered situations involvinglife-threatening conditions for nondisabledchildren have been cases in which parents haverefused to authorize medical care because of theirreligious beliefs. Jehovah's Witnesses have provideda recurring example. The traditional view of Jehovah'sWitnesses has been that blood transfusions aremorally prohibited. 17 In the usual situation, theparents refuse to consent to a transfusion that isnecessary for a child in need of an operation. Theparents are brought to court, normally by thehospital, to compel a transfusion through the appointmentof a guardian ad litem to consent to thenecessary medical care. Court after court has foundthat the State has the authority to intervene anddirect a blood transfusion when a child's life is inimminent danger, invoking the State's child neglect15Goldstein, Medical Care for the Child at Risk: On StateSupervention of Parental Autonomy, 86 Yale L.J. 645, 647 (1977).16Custody of a Minor, 379 N.E.2d at 1063.17Jehovah's Witnesses' objections are based upon their understandingof biblical passages directly prohibiting eating blood,which they regard as equivalent to a transfusion. See, e.g., Gen.9:3-6; Lev. 7:26-27; 17:10-14; Det. 12:23-25." In re Clark, 21 Ohio Op. 2d 86, 185 N.E.2d 128, 129 (1962)("When a child's right to live and his parent's religious beliefcollide, the former is paramount and the religious doctrine mustgive way."). See also In re Pogue, No. M-18-74 (Super. Ct. D.C.,Nov. 11, 1974); People ex rel Wallace v. Labrenz, 411 111. 618,104 N.E.2d 769 (1952), cert, denied, 344 U.S. 824 (1952); Morrisonv. State, 252 S.W.2d 97 (Mo. App. 1952); State v. Perricone, 37N.J. 463, 181 A.2d 751, cert, denied, 371 U.S. 890 (1962);Muhlenberg Hosp. v. Patterson, 128 N.J. Super. 498, 320 A.2d518 (1974); Hoener v. Bertinato, 67 N.J. Super. 517, 171 A.2d 140(1961); Sampson v. Taylor, 29 N.Y.2d 900, 278 N.E.2d 918 (1972);Santos v. Goldstein, 16 App. Div. 2d 755, 227 N.Y.S.2d 450,appeal dismissed, 12 N.Y.S.2d 672, 185 N.E.2d 904 (1962);Application of Brooklyn Hosp., 45 Misc.2d 914, 258 N.Y.S.2d 621(1965); In re Green, 448 Pa. 338, 292 A.2d 387 (1972), later appeal,452 Pa. 373, 307 A.2d 279 (1973); Jehovah's Witnesses v. KingCounty Hosp., 278 F. Supp. 488 (W.D. Wash. 1967), affd, 390U.S. 598 (1968).19Prince v. Massachusetts, 321 U.S. 158, 170 (1940). For a childprotection system to be effective, the system must become aware58or abuse statute or the expanded doctrine of parenspatriae. 18As stated by the Supreme Court:Parents may be free to become martyrs themselves. But itdoes not follow they are free, in identical circumstances,to make martyrs of their children before they havereached the age of full and legal discretion when they canmake that choice for themselves. 19Different Treatment of Children withDisabilitiesThe government's disposition changes when thechild denied treatment is one who has a disability.Commentator Joseph Goldstein, who wrote in 1977of the danger of abuse of parental authority that may"cover for exploiting the inherent inequality betweenadult and child," 20 also wrote: [I]t must beleft to the parents to decide, for example, whethertheir congenitally malformed newborn with anascertainable neurologic deficiency and highly predictablemental retardation, should be provided withtreatment which may avoid death, but which offersno chance of cure—no opportunity, in terms ofsocietal consensus, for a life worth living or a life ofrelatively normal healthy growth. 21In 1984 the Minnesota Supreme Court explicitlybased its support for denial of treatment on thedegree of disability:[T]he few patients who have recovered consciousnessafter a prolonged period of unconsciousness were severelyof cases of abuse and neglect. In the 1960s, this need led to theadoption of laws requiring specified individuals to report suspectedcases to the appropriate State agency. Enactment of such lawswas proposed by the Children's Bureau in 1963. U.S. Children'sBureau, The Abused Child: Principles and Suggested Language forLegislation on Reporting of the Physically Abused Child (1963) aycited in Smith, Disabled Newborns and the Federal Child AbuseAmendments: Tenuous Protection, 37 Hastings L. J. 765, 794(1986). These principles were adopted swiftly: all States enactedmandatory reporting laws within 4 years. Fraser, A Glance at thePast, A Gaze at the Present, A Glimpse at the Future: A CriticalAnalysis of the Development of Child Abuse Reporting Statutes, 54Chi.[-]Kent L. Rev. 641 (1978). Although the wording of suchstatutes varies, it normally requires that physicians, other healthcare providers, school personnel, social workers, and othersreport to the proper agencies if they suspect any neglect. SomeStates provide that everyone is obligated to report any suspectedneglect. See, e.g., N.J. Stat. Ann. §9:6-8.10 (West Supp. 1988).Reporting is frequently obligatory even if the individual receivesinformation in a confidential capacity. The penalty for failure toreport varies from a small fine to incarceration. Smith & Meyer,Child Abuse Reporting Laws and Psychotherapy: A Time forReconsideration, 7 International J. L. & Psychiatry 351 (1984).20Goldstein, Medical Care for the Child at Risk: On StateSupervention of Parental Autonomy, 86 Yale L.J. 645, 647 (1977).21Id. at 655-56.

disabled. The degree of permanent damage varied butcommonly included inability to speak or see, permanentdistortion of the limbs, and paralysis. Being returned tosuch a state would be regarded as of very limited benefitby most patients; it may even be considered harmful if aparticular patient would have refused treatments expectedto produce this outcome. Thus, even the extremely smalllikelihood of "recovery" cannot be equated with returningto a normal or relatively well functioned state. 22The trial court judge who decided the Bloomington,Indiana, Infant Doe case 23 later made explicitthat it was the child's disability, Down syndrome,that was the ground for his ruling that the parentaldenial of lifesaving treatment should not be disturbed.In his reply to a correspondent who questionedhim about the case, he wrote:[E]ven at common law the right of the parents toautonomy over their children was not absolute and theState could intervene by way of the Court, acting as parenspatriae, to protect minors and incompetents whose guardianswere acting to the clear detriment of the ward.Today, parental autonomy is still favored, but of paramountconcern, in case law and by statute, is the bestinterest of the child. A child is no longer merely aproperty right. Now the parent-child relationship is morein the nature of a trust, subject to the well-being of thechild as perceived by the Court. . . .The State's role in protecting the welfare of the childbecomes more complicated in a situation as that of the"Infant Doe" case. To say that parents are neglectfulimplies that the State or society knows what is best for thechild. In the "Infant Doe" case, it could not be said thatthe parents were not acting in the best interests of thechild, even though other parents might have acteddifferently. It is a harsh view that no life is preferable tolife, but the great weight of the medical testimony at thehearing I conducted was that even if the proposed surgerywas successful, the possibility of a minimally adequatequality of life was nonexistent. 24In the Baby Jane Doe case, the New York Statecourts upheld denial of treatment to a child bornwith spina bifida and other disabilities. 25 After herbirth in Port Jefferson, New York, on October 11,1983, her pediatric neurosurgeon arranged for hertransfer to the University Hospital of the StateUniversity of New York at Stony Brook so shecould receive lifesaving surgery. 26 Advice herparents received there, however, led them to optagainst authorizing the surgery. 27 Based on informationfrom a source within the hospital, an attorneywho objected to the denial of treatment applied to aState court of general jurisdiction for the appointmentof a guardian ad litem to argue that the courtshould order treatment, a request the court granted.28The court conducted 2 days of hearings, takingtestimony from physicians and the father of thechild. 29 At their conclusion, the trial court judgeruled that surgery should be performed:The testimony of the witnesses before the Court indicatedthat the neurosurgeons' initial advice that surgery beperformed was changed by Dr. Newman.. . .A parent, however, may not deprive a child of lifesavingtreatment, however well intentioned. Even whenthe parents' decision to decline necessary treatment isbased on Constitutional grounds such as religious beliefs, itmust yield to the State's interests as [parens] patriae inprotecting the health and welfare of the child. . . .Therewas instead an affirmative answer to the question, is thereimminent danger of infection, and there was testimonyindicating that the presence of infection would lead todeath, and that in the Court's view the testimony furtherprovided that by correcting the myelomeningocele condition,that this would significantly reduce the risk ofinfection.. . .It is clear. . .that the infant is in imminent danger,and that the infant has an independent right to survive;that right must be protected by the State acting the[parens] patriae, where a life is in jeopardy and the parentshave elected to provide no surgical care. . . . 3022In re Conservatorship of Torres, 357 N.W.2d 332, 338 (Minn.1984). Although the case related to denial of treatment to an olderperson who was unconscious, it revealed an attitude towarddisability relevant to a judicial perspective on denial of treatmentto children with disabilities. The court also considered as relevantthe cost associated with disability: "[L]ong-term treatment commonlyimposes severe financial and emotional burdens on apatient's family, people whose welfare most patients before theylost consciousness, placed a high value on." Id. at 339.23See chap. 1 and text accompanying notes 16-27.24Baker, June 8, 1982 Letter of Judge John Baker to AnonymousPerson, 2 Issues in L. & Med. 81, 82 (1986).28See chap. 3, text accompanying notes 54-72, and chap. 6, textaccompanying notes 89-107.26United States v. Univ. Hosp., State Univ. of New York atStony Brook, 729 F.2d 144, 146 (2d Cir. 1984).27Horan & Balch, Infant Doe and Baby Jane Doe: MedicalTreatment of the Handicapped Newborn, 52 Linacre Q. 45, 53(1985).2 « Id.29Transcript, People ex rel. Washburn v. Stony Brook Hosp.,No. 83-19910 (N.Y. Sup. Ct. Oct. 19, 1983) (available in files ofthe U.S. Commission on Civil Rights).30Id. at 229, 236-38.59

This decision, however, was promptly overturnedby an intermediate appellate court, 31 and when thatruling was appealed to the state's highest court, theNew York Court of Appeals, it held that the trialcourt had been without authority to entertain thecase at all and affirmed the appellate division'sdismissal. The court said:There are overtones to this proceeding which we finddistressing. Confronted with the anguish of the birth of achild with severe physical disorders, these parents, inconsequence of judicial procedures for which there is noprecedent or authority, have been subjected in the last twoweeks to litigation through all three levels of our State'scourt system. We find no justification for resort to orentertainment of these proceedings. 32There have been other cases in which State courtshave upheld denial of lifesaving treatment to childrenon the basis of disability, 33 as well as cases inwhich State courts have prevented the withholdingof such treatment from children with disabilities. 34The key point is that while State courts in the31Weber, Guardian ad litem for Baby Jane Doe v. Stony BrookHosp., No. 3467E (N.Y. App. Div. Oct. 21, 1983).32In re Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 469N.Y.S.2d 63, 456 N.E.2d 1186, 1188 (1983).contemporary era have invariably overridden parentaldecisions to deny treatment clearly necessary topreserve the lives of their nondisabled children,prior to the adoption of the Child Abuse Amendmentsof 1984, they had at best a mixed record indoing so when the children had disabilities.ConclusionIn popular debate, the question whether childrenwith disabilities should be denied lifesaving treatmenthas frequently been couched as though theissue were whether the government should intrudeinto matters of parental discretion. In fact, however,for decades the universally accepted law has beenthat when parents make treatment decisions that willundebatably lead to the death of their nondisabledchildren, the state will intervene to ensure thechildren's survival by mandating provision of lifesavingmedical care. It is only when the childrenhave disabilities that the claim of parental autonomyis given serious sympathetic consideration.33See In re Barry, 445 So.2d 365 (Fla. App. 1984), cert, denied,464 U.S. 1026 (1985); In re L.H.R., 253 Ga. 439, 321 S.E.2d 716(1984); and In re P.V.W., 424 So.2d 1015 (La. 1982).34See Maine Medical Center v. Houle, Civ. No. 74-145 (Me.Super. Ct., Feb. 14, 1974); and In re Cicero, 101 Misc.2d 699, 421N.Y.S.2d 965 (Sup. Ct. 1979).60

Chapter 6The Rehabilitation Act of 1973The history of efforts by the Federal Governmentto prevent medical discrimination against peoplewith disabilities, particularly children, is closelyinterwoven with section 504 of the RehabilitationAct of 1973. 1 Soon after the April 1982 BloomingtonInfant Doe case brought public attention to theissue of denying treatment to children with disabilities,the Department of Health and Human Services(HHS) relied on section 504 as the basis for a writtenwarning to hospitals throughout the country thatdiscriminatory denial of treatment on the basis ofhandicap was illegal. In March 1983, HHS issued an"Interim Final Rule" requiring hospitals to postnotices giving the telephone number of a 24-hourhotline for reporting suspected 504 violations. Thisposter rule evoked heated reaction.The President's Commission for the Study ofEthical Problems in Medicine and Biomedical andBehavioral Research and the American Academy ofPediatrics, joined by other medical organizations,condemned the regulation. They argued that the useof hospital-based ethics committees was preferableto Federal involvement in treatment decisionmaking.The American Academy of Pediatrics suedHHS and convinced a Federal district court to strikedown the regulation on the ground that the proceduresused to issue it had not complied with thosemandated by administrative law.HHS then published a substantially similar rule asa proposed regulation in July 1983, inviting publiccomment. While HHS was analyzing that commentand meeting with medical and disability groupsseeking a compromise, the New York Baby JaneDoe case arose in October 1983. Under the authority129 U.S.C.A. §794 (West Supp. 1988).of section 504, HHS sought Baby Jane Doe'smedical records and, when the hospital refused toprovide them, took it to court. But HHS lost in boththe district court and the Second Circuit Court ofAppeals, with the latter ruling in February 1984 thatsection 504 had no application to medical treatmentdecisions regarding newborn children with disabilities.Meanwhile, in January 1984, HHS had reissued amodified form of its poster regulation as a FinalRule. The American Medical Association and othermedical organizations promptly challenged it incourt as unjustified by section 504. Relying on theholding in the Baby Jane Doe case, both a districtcourt and the Second Circuit Court of Appealsstruck down the mandatory sections of the FinalRule. In June 1986, the Supreme Court affirmed in a5-3 vote. However, an opinion explaining theaffirmation was joined only by a plurality of theCourt, and it addressed much narrower groundsthan had the Second Circuit, leaving importantissues concerning the application of section 504 todenial of treatment on the basis of handicap unresolved.This chapter details these events and analyzes thelegal issues at stake in the controversy over theapplicability of section 504 to the discriminatorydenial of medical treatment to children with disabilities.Enactment of Section 504 of theRehabilitation ActSection 504 provides:61

No otherwise qualified handicapped individual in theUnited States. . .shall, solely by reason of his handicap, beexcluded from the participation in, be denied the benefitsof, or be subjected to discrimination under any program oractivity receiving Federal financial assistance. . . . 2Robert Scotch, who has written a history of theprovision's crafting and enactment, notes: "Section504. . .has been hailed as the first major civil rightslegislation for disabled people. In contrast to earlierlegislation that provides or extends benefits todisabled persons, it establishes full social participationas a civil right and represents a transformationof federal disability policy." 3 Modeled on legislationprohibiting race and sex discrimination by recipientsof Federal financial assistance, section 504 may beenforced not only by cutting off such assistance butalso through suits for injunctive relief by theAttorney General 4 and by aggrieved private individuals.5Section 504 was derived from companion billsintroduced by Senator Hubert Humphrey and RepresentativeCharles Vanik. 6 "[T]he treatment andregard for the rights of handicapped citizens in ourcountry is one of America's shameful oversights,"Representative Vanik said in the speech with whichhe introduced the bill. 7 He referred to the "100,000babies [who] are born with defects" each year.229 U.S.C.A. §794 (West Supp. 1988). For purposes of §794handicapped individual is defined as:any individual who (i) has a physical or mental impairmentwhich substantially limits one or more of such person's majorlife activities, (ii) has a record of such an impairment, or (iii)is regarded as having such an impairment.29 U.S.C.A. §706(8)(B) (West Supp. 1988).3R. Scotch, From Good Will to Civil Rights 3 (1984). Thematerial that follows in this section relies heavily on NationalLegal Center for the Medically Dependent & Disabled, TheMedical Treatment Rights of Children with Disabilities §2.03 at2:9-2:10 (J. Bopp ed. 1987).4Section 504 may be enforced by "any other means authorizedby law, which includes suits by the Attorney General." 42 U.S.C.§ 2000d-l (1982); see United States v. Marion County SchoolDist, 625 F.2d 607, 611-12 (5th Cir. 1980), cert, denied, 451 U.S.910 (1981).5Consolidated Rail Corp. v. Darrone, 465 U.S. 624 (1984).6The Supreme Court has emphasized the importance of thishistory: "[T]he intent with which Congressman Vanik andSenator Humphrey crafted the predecessor to § 504 is a primarysignpost on the road toward interpreting the legislative history of§504." Alexander v. Choate, 469 U.S. 287, 296 n.13 (1985).7117 Cong. Rec. 45,974 (1971) (statement of RepresentativeVanik).Id.118 Cong. Rec. 525 (1972).0118 Cong. Rec. 9,499, 9,500 (1972).Id.•• S. Rep. No. 1297, 93rd Cong., 2d Sess. 38 (1974). In 1977 theDepartment of Health, Education, and Welfare (the predecessorReferring to older citizens with disabilities, hecondemned "confinement without treatment" and"unexplained deaths." 8 In a speech introducing hisbill, Senator Hubert Humphrey said it would affordpeople with disabilities the "right to health." 9Later, to demonstrate a need for the legislation,Humphrey placed in the Congressional Record articlescriticizing medical professionals for devaluingchildren with disabilities. One article referred toparents who "spoke angrily about pediatricians andpurported experts in the field of retardation—theprofessionals who know pathetically little about theunused potential of retarded children and whocontinually discourage and delude parents." 10 Oneparent said, "There was so much willingness toeliminate the child, because they did not considerhim a productive member of society. ..." Thearticle concluded that many parents of children withdisabilities have a "deep anger" at a "system whichregularly has written off certain categories of handicappedchildren, their children, as hopeless." 11It was in response to concerns such as these thatthe Senate committee report on the RehabilitationAct of 1973 specifically stated that section 504'scoverage was to include discrimination in "healthservices." 12to the Department of Health and Human Services) took theposition that section 504 prohibits discrimination in the provisionof medical treatment, although it does not create new entitlementsfor what was not previously provided to anyone:[A] burn treatment center need not provide other types ofmedical treatment to handicapped persons unless it providessuch medical services to nonhandicapped persons. It couldnot, however, refuse to treat the burns of a deaf personbecause of his or her deafness.45 C.F.R. Part 84, App. A para. 36 (1987). The Department thustook the position that section 504 did not mean that psychiatricpatients have a right to receive treatment for the psychiatricproblem for which they have been involuntarily committed orelse be released. 41 Fed. Reg. 29548, 29559 (1976). Although thisposition was later cited for the proposition that the Department'sview had been that section 504 does not authorize regulationsdealing with rights to receive treatment, United States v. Univ.Hosp., 729 F.2d 144, 152 (2d Cir. 1984), Martin Gerry, formerDirector of the Office for Civil Rights of HHS during thedevelopment of the initial implementing regulations to section504, explained that civil rights laws, including section 504, havebeen routinely applied to health care providers who receiveFederal financial assistance:The direct application of federal civil rights laws to theoperation of hospitals and other health care providers whichreceive Federal financial assistance was first established in1964. The Final Regulation implementing Title VI of theCivil Rights Act of 1964, issued by the Department ofHealth, Education and Welfare in December 11 of the sameyear. . .prohibits discrimination on the basis of race, color ornational origin in the operation of health care facilities62

In May 1977, under the compulsion of a courtorder, 13 the Department of Health, Education, andWelfare (the predecessor of HHS) issued a regulationgenerally implementing section 504, much ofwhich is still in effect. The Supplementary Informationpublished with the 1977 regulation noted that"there is overwhelming evidence that in the pasthandicapped persons have been excluded fromprograms entirely or denied equal treatment, simplybecause they are handicapped." 14The regulation defines a "qualified handicappedperson," for contexts other than employment oreducation, as "a handicapped person who meets theessential eligibility requirements for the receipt ofsuch services." 15 It prohibited the providing ofdifferent services or benefits to qualified handicappedpersons unless necessary to ensure that theservices or benefits were as effective as thoseprovided to nonhandicapped persons. 16 Indeed, arecipient of Federal funds must afford a qualifiedperson with a disability a benefit or service that is aseffective as that provided to nonhandicapped persons.17 The regulation also proscribed the use ofcriteria or methods of administration having thepurpose or effect of substantially impairing theaccomplishment of program objectives for qualifiedindividuals with a disability. 18Resort to Section 504 in the Aftermathof the Bloomington Infant Doe CaseThe highly publicized Bloomington Infant Doecase in April of 1982 led to considerable public andpress criticism of the denial of treatment thatresulted in the child's death. 19 Reacting to the caseand the widespread negative response to it, PresidentReagan on April 30, 1982, sent a memorandumto the Attorney General and Secretary of HHSreceiving funds under a wide variety of federal health careprograms. . . .Civil rights obligations imposed upon hospitalsand other health service providers by federal civil rightslaws are neither new nor secret.M. Gerry, The Right of Handicapped Infants to ReceiveBeneficial Medical Treatment: The Responsibilities of HealthCare Providers Under Section 504 of the Rehabilitation Act of1973, Statement Submitted to the 1985 Hearings of the UnitedStates Commission on Civil Rights on the Protection of HandicappedNewborns 27-28 (July 12, 1985) (available in the files ofthe U.S. Commission on Civil Rights).13Cherry v. Mathews, 419 F. Supp. 922 (D.D.C. 1976).14Part 84—Nondiscrimination on the Basis of Handicap inPrograms and Activities Receiving or Benefiting From FederalFinancial Assistance, 42 Fed. Reg. 22,676, 22,676 (1977).« 45 C.F.R. §84.3(k)(4) (1987).»• Id. §84.4(bXl)(iv) (1987).concerning the enforcement of Federal laws prohibitingdiscrimination against individuals with adisability. 20 The memorandum required HHS toissue an explanation to health care providers ofsection 504's applicability to the denial of treatmentto newborn children with a disability. HHS was alsoto enforce section 504 and other appropriate Federallaws to prevent the withholding of potentiallylifesaving treatment from children with a disabilitythat would normally be provided to children withouta disability. The Attorney General was directedto report on "the possible application of Federalconstitutional and statutory remedies in appropriatecircumstances to prevent the withholding from thehandicapped of potentially lifesaving treatment thatwould be given as a matter of course to those whoare not handicapped." 21Accordingly, on May 18, 1982, the Office forCivil Rights of the Department of Health andHuman Services sent hospitals receiving Federalfinancial assistance a Notice to Health Care Providerswhich indicated that it was unlawful to denynutrition or medical or surgical treatment to aninfant with a disability if the denial was based uponthe existence of a handicap and the handicap did notrender treatment or nutritional sustenance medicallycontraindicated. 22 Reflecting a concern that hospitalsor their staff might attempt to do indirectly whatcould not lawfully be done directly, the notice statedthat hospital "[cjounseling of parents should notdiscriminate by encouraging parents to make decisionswhich, if made by the health care provider,would be discriminatory under Section 504." 23In December 1982, internal guidelines for investigatingcomplaints of discriminatory denial of treatmentwere sent to the regional divisions of the HHSOffice for Civil Rights. 24 Between the death of" Id. §84.4(bXlXii) (1987).18Id. §84.4(b)(4) (1987).19See chap. 1 and text accompanying notes 16-27 for adescription of the case.20R. Reagan, President's Memorandum to the Attorney Generaland the Secretary of Health and Human Services, Enforcement ofFederal Laws Prohibiting Discrimination Against the Handicapped(Apr. 30, 1982), noted in S. Rep. No. 246, 98th Cong., 2dSess. 6, portions reprinted in 1984 U.S. Code Cong. & Admin.News 2918.11Id22Discriminating Against the Handicapped by Withholding Treatmentor Nourishment; Notice of Health Care Providers, 47 Fed.Reg. 26,027 (1982).23Id.24Memorandum from Nathan D. Dick, Deputy Director, Officeof Program Operations, HHS, to Regional Directors, Office for63

Bloomington's Infant Doe in April 1982 and March7, 1983, HHS received 11 complaints of discriminatorydenial of lifesaving medical treatment to newbornchildren with disabilities. 25 HHS conductedinvestigations in 9 of the 11 instances, including 5onsite investigations. 26The "Interim Final Rule" of March 1983On March 7, 1983, HHS issued a new regulationthat was to provoke a storm of controversy. 27 It wasthe first of three versions of regulations or proposedregulations under authority of section 504 thatexplicitly and specifically addressed the withholdingof medical treatment from children with disabilities.28The Supplementary Information published withthe Interim Final Rule gave as its purpose to"acquire timely information concerning violations ofSection 504 that are directed against handicappedinfants, and to save the life of the infant. "** Expressingconcern that individuals with knowledge ofactions violating section 504 did not have adequateopportunity to give immediate notice to governmentalauthorities, HHS designed the Interim Final Ruleto increase public knowledge of the law and themanner of bringing suspected violations to theattention of HHS, and to increase the ability of HHSto investigate alleged violations promptly.HHS wrote that the rule had become necessarybecause events "of the past several years suggestthat handicapped infants have died from denial offood in federally assisted programs." 30 The Departmentsaid that although the extent of discriminatoryCivil Rights, HHS Directive OPO-83-1-8 (Dec. 14, 1982)(available in files of U.S. Commission on Civil Rights).25Nondiscrimination on the Basis of Handicap; Procedures andGuidelines Relating to Health Care for Handicapped Infants, 49Fed. Reg. 1,622, 1,646-47 (1984) [hereinafter Final Rule (504)].28Id. In one of the two remaining cases in which no investigationswere undertaken, HHS "postponed" investigation at therequest of local prosecutors. In the other case, HHS reportedhaving conducted an "inquiry," though not an investigation. Onthe basis of the "inquiry," HHS closed the case, finding noviolation. For further discussion of investigations conducted bythe HHS Office for Civil Rights, see chap. 12, text accompanyingnotes 3-11.27Nondiscrimination on the Basis of Handicap, Interim Final Rule,46 Fed. Reg. 9630 (1983).28The number and variety of Federal regulations related to"Baby Doe" that have been proposed or issued at various timescan be confusing. The regulations promulgated under section 504,discussed in this chapter, must be distinguished from the regulationspromulgated under the Child Abuse Amendments of 1984,discussed in the next chapter. For convenience, a chronology ofthe relevant laws, regulations, and court decisions challengingthem may be helpful:denial of treatment was unknown, "for even a singleinfant to die due to lack of an adequate notice andcomplaint procedure is unacceptable." 31The May 1982 Notice to Health Care Providers,the Supplementary Information stated, "explainedwhat is already clear from the language of Section504 and [its existing] regulations. . .: The discriminatoryfailure of a federally assisted health careprovider to feed a handicapped infant, or to providemedical treatment essential to correct a life-threateningcondition, can constitute a violation of Section504." 32 Therefore, HHS wrote, the Interim FinalRule was not intended to create any variance in thesubstantive obligations of health care providers"previously set forth in the statutory language ofSection 504, in the implementing regulations, and inthe Notice to Health Care Providers." 33 Instead:The interim final rule sets forth procedural specificationsdesigned: (1) To specify a notice and complaint procedure,within the context of the existing regulations, and (2) tomodify existing regulations to recognize the exigentcircumstances that may exist when a handicapped infant isdenied food or other necessary medical care. 34The Interim Final Rule required infant healthservice facilities to display posters in conspicuousplaces in nurseries and in delivery, maternity, andpediatric wards. The notices were to state thatdiscriminatory failure to feed and care for handicappedinfants in the facility is prohibited by Federallaw, that anyone having knowledge of an infantbeing denied food or customary medical care shouldcontact the HHS hotline or the State child protec-1973: Passage of Rehabilitation Act, including section 5041977: Basic section 504 regulations issuedMar. 7, 1983: Interim Final Rules (504) issuedApr. 14, 1983: Judge Gesell strikes down Interim Final RulesJuly 5, 1983: Proposed Rules (504) issued for commentJan. 12, 1984: Final Rules (504) promulgatedFeb. 23, 1984: In Baby Jane Doe case, Second Circuit holds 504inapplicable to medical treatment decisionsJune 11, 1984: Final Rules (504) enjoined by Federal district courtOct. 9, 1984: Child Abuse Amendments of 1984 (CAA) signedinto lawDec. 10, 1984: Proposed Rules (CAA) issued for commentApr. 15, 1985: Final Rules (CAA) promulgatedOct. 9, 1985: CAA and Final Rules (CAA) go into effectJune 9, 1986: U.S. Supreme Court holds mandatory portions ofFinal Rules (504) unjustified by administrative record29Nondiscrimination on the Basis of Handicap, Interim Final Rule,48 Fed. Reg. 9,630, 9,630 (1983) (emphasis in original).30Id. at 9,631.31Id.32Id. at 9,630.33Id.3 « Id.64

tive agency, and that the failure to feed and care forinfants might violate State law. 35Normally, HHS is required to wait 10 days fromthe time that the Secretary notifies the suspectedviolator of a failure to comply with section 504before legal action is initiated. The Interim FinalRule provided for a waiver of this waiting periodwhenever, in the judgment of HHS, immediateaccess was necessary to preserve the life or health ofan infant with a disability. 36 It also allowed HHSimmediate access to business records outside normalbusiness hours when necessary to protect the infant'slife or health. 37Although it set up a 24-hour hotline to receivereports of suspected denial of treatment, HHSindicated that it intended to rely heavily on thevoluntary cooperation of State and local agenciesclosest to the scene, which could provide "speedyinvestigation of life-threatening abuse and neglect."38 State child protective agencies would beinformed of cases of which HHS became aware.When the State "expeditiously and effectively investigated"the cases, additional Federal involvementwould be unnecessary although HHS would holditself open for whatever assistance was desired. 39President's Commission ReportIn March 1983—the same month the Interim FinalRule was promulgated—the President's Commissionfor the Study of Ethical Problems in Medicine andBiomedical and Behavioral Research issued a reportentitled Deciding to Forego Life-SustainingThe poster was to read:DISCRIMINATORY FAILURE TO FEED AND CAREFOR HANDICAPPED INFANTS IN THIS FACILITY ISPROHIBITED BY FEDERAL LAWSection 504 of the Rehabilitation Act of 1973 states that nootherwise qualified handicapped individual shall, solely byreason of handicap, be excluded from participation in, bedenied the benefits of, or be subjected to discriminationunder any program or activity receiving federal financialassistance.Any person having knowledge that a handicapped infant isbeing discriminatorily denied food or customary care shouldimmediately contact:Handicapped Infant HotlineU.S. Department of Heath and Human ServicesWashington, D.C. 20201Phone 800 (Available 24 hours a day)In the City of Washington, D.C—863- 00 (TTY capability)orYour State Child Protective AgencyFederal law prohibits retaliation or intimidation againstany person who provides information about possible violationsof the Rehabilitation Act of 1973.Treatment. 40 Although HHS would later cite withfavor some of the statements in the report, 41 notonly did the President's Commission Report specificallycriticize the HHS regulation, 42 but its generalperspective significantly differed from that of HHS.The President's Commission believed that "seriouslyerroneous decisions about the treatment of newborns.. .appear to be very rare." 43 Nevertheless, itacknowledged three shortcomings in decisionmakingabout infants with a disability: "[first,] appropriateinformation may not be communicated to allthose involved in the decision; [second,] professionalsas well as parents do not at times understand thebases of a decision to treat or not to treat; and[third,] actions can be taken without the informedapproval of parents or other surrogates." 44The President's Commission divided circumstancesin which a child with a disability has lifethreateningconditions into three categories: "(1) atreatment is available that would clearly benefit theinfant, (2) all treatment is expected to be futile, or (3)the probable benefits to an infant from differentchoices are quite uncertain." 45 The actions itrecommended are shown in table 6.1.Under the proposal of the President's Commission,both when the physician's assessment is "unclear"and when the joint decision of parents andphysician is to forego treatment, the assessmentwould be reviewed by "intra-institutional mechanismsand possibly thereafter by the court." 46 By"intra-institutional mechanisms" the President'sIdentity of callers will be held confidential.Failure to feed and care for infants may also violate thecriminal and civil laws of your State.HHS provided the sign, and the only permissible alteration wasthe addition of the agency's name and its address and telephonenumber. Id. at 9,631-32.36Id. at 9,630.37Id.38Id. at 9,631.39Id.40President's Commission for the Study of Ethical Problems inMedicine and Biomedical and Behavioral Research, Deciding toForego Life-Sustaining Treatment (1983) [hereinafter President'sCommission Report].41See, e.g., Nondiscrimination on the Basis of Handicap; Proceduresand Guidelines Relating to Health Care for HandicappedInfants, Final Rules, 49 Fed. Reg. 1,622, 1,622 (1984).42President's Commission Report, supra note 40, 225-26 & n.95.43Id. at 208-09.44Id at 209.45Id. at 217.46Id.65

ONONTABLE 6.1Physician's assessmentof treatment options*Clearly beneficialAmbiguous or uncertainFutileParents preferto accept treatment**Provide treatmentProvide treatmentProvide treatment unless provider declines to do soParents preferto forego treatment**Provide treatment during review processForego treatmentForego treatment*The assessment of the value to the infant of the treatments available will initially be by the attending physician. Both when this assessment isunclear and when the joint decision between parents and physician is to forego treatment, this assessment would be reviewed by intra-institutionalmechanisms and possibly thereafter by court."The choice made by the infant's parents or other duly authorized surrogate who has adequate decisionmaking capacity and has been adequatelyinformed, based on their assessment of the infant's best interests.Source: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego LifeSustaining Treatment (1983), 218, table 1 (certain footnotes omitted).

Commission primarily meant hospital ethics committees.47When treatment is "clearly beneficial," the President'sCommission wrote, "[pjarents should be ableto choose among alternative treatments with similarlybeneficial results and among providers, but not toreject treatment that is reliably expected to benefit aseriously ill newborn substantially, as is usually trueif life can be saved." 48 The President's Commissionemphasized that this is a "very strict standard"because:[I]t excludes consideration of the negative effects of animpaired child's life on other persons, including parents,siblings, and society. Although abiding by this standardmay be difficult in specific cases, it is all too easy toundervalue the lives of handicapped infants. The Commissionfinds it imperative to counteract this by treating themno less vigorously than their healthy peers or than olderchildren with similar handicaps would be treated. 49The President's Commission specifically pointed toinfants with Down syndrome, indicating that thisdisability, in itself, does "not justify failing toprovide medically proven treatment, such as surgicalcorrection of a blocked intestinal tract." 50 ThePresident's Commission thus implicitly criticized theresult in the Bloomington Infant Doe case.On the other end of the treatment spectrum, the"clearly futile" category, the President's Commissiontook the position that it is unnecessary toprovide treatment that would only maintain life for ashort period of time:When there is no therapy that can benefit an infant, as inanencephaly or certain severe cardiac deformities, adecision by surrogates and providers not to try predictablyfutile endeavors is ethically and legally justifiable. Suchtherapies do not help the child, are sometimes painful forthe infant (and probably distressing to the parents), andoffer no reasonable probability of saving life for asubstantial period. The moment of death. . .might bedelayed for a short time—perhaps as long as a fewweeks—by vigorous therapy. 51In such circumstances, however, the President'sCommission said that the children are still owed"whatever relief from suffering and enhancement of« Id. at 227.« Id. at 217-18.« Id. at 219.50Id. at 218-21.51Id. at 219. The President's Commission's conclusion thattreatment that merely prolongs dying should not be mandated bylaw has found few dissenters and is congruent with both HHSlife can be provided, including feeding, medicationfor pain, and sedation, as appropriate." 52The third category delineated by the President'sCommission consisted of "ambiguous cases."Although for most seriously ill infants there will be eithera clearly beneficial option or no beneficial therapeuticoptions at all, hard questions are raised by the smallernumber for whom it is very difficult to assess whether thetreatments available offer prospects of benefit—for example,a child with a debilitating and painful disease whomight live with therapy, but only for a year or so, or arespirator-dependent premature infant whose long-termprognosis becomes bleaker with each passing day. 53While the section 504 approach adopted by HHSput emphasis on the substantive standards establishingwhat treatment must be provided, the approachadopted by the President's Commission emphasizedthe procedural standards establishing who shoulddecide what treatment should be given. Rejectingboth regular resort to the courts and the section 504regulatory approach adopted by HHS, the President'sCommission recommended instead a relianceon intra-institutional review. It suggested that hospitalsshould:have explicit policies on decisionmaking procedures incases involving life-sustaining treatment for these infants.. . .Such policies should provide for internal reviewwhenever parents and the attending physician decidethat life-sustaining therapy should be foregone. . . .Somecases may require only a medical consultation to confirm adiagnosis of an inevitably fatal condition. . . .In othercases, when the benefits of therapy are less clear, an"ethics committee" or similar body might be designated toreview the decisionmaking process. This approach wouldensure that an individual or group whose function is topromote good decisionmaking reviews the most difficultcases. 54Section 504 is directed against discriminationbased on handicap. Thus, the measure of whattreatment is required is what treatment would beprovided to a similarly situated nonhandicappedindividual. Since, for example, futile treatment thatwould merely prolong dying is not normally givento nonhandicapped terminally ill patients, section504 would not require that it be provided tosimilarly situated individuals with handicaps. 55interpretations of section 504 and the Child Abuse Amendmentsof 1984.52Id. at 220.53Id." Id. at 227.5SSee 45 C.F.R. Part 84 App. C(a)(2) (1987).67

Essentially, HHS interpreted the substantive ruleunder section 504 to be that unless the handicapitself medically contraindicates the treatment (andthus renders the individual not "otherwise qualified"for the treatment), the handicap must be deemedirrelevant in treatment decisionmaking. 56The President's Commission approach could besaid to have established substantive standards, sinceit divided cases into three categories. However, thedescriptions of the categories were too generalizedto provide much guidance for specific instances,with the meager exception of the Commission'scondemnation of withholding of treatment solely onthe basis of Down syndrome. The effect of thegeneralizations is that the formulae can be widelyinterpreted, leaving, at best, wide discretion inapplying the principles. Although the basic notion offutility is defined with some clarity, the breadth andvagueness of the "clearly beneficial" and the "ambiguous"categories leave much room for differingjudgments.This lack of specificity reflected a deliberatechoice by the President's Commission. It quotedwith approval bioethicist Robert Veatch:The decision [to treat or not] must. . .include evaluationof the meaning of existence with varying impairments.Great variation exists about these essentially evaluativeelements among parents, physicians, and policy makers. 57The report then stated:The Commission agrees that such criteria necessarilyinclude value considerations. Supposedly objective criteriasuch as birth weight limits or checklists for severity ofspina bifida have not been shown to improve the quality ofdecisionmaking in ambiguous and complex cases. Instead,their use seems to remove the weight of responsibility tooreadily from those who should have to face the valuequestions—parents and health care providers. 58The central themes embodied in the President'sCommission report were to become the most widelyreiterated grounds on which medical groups andothers opposed the advocacy by disability groups of56See infra note 100 for a discussion of the situation in which thehandicap is itself the source of the life-threatening condition to betreated.57President's Commission Report, supra note 40, at 222, quoting R.Veatch, The Technical Criteria Fallacy, 7 Hastings Ctr. Rep. 15(1977).58President's Commission Report, supra note 40, at 223.59Am. Academy of Pediatrics v. Heckler, 561 F. Supp. 395(D.D.C. 1983).government action to protect the treatment rights ofchildren with disabilities. These key points wererepeatedly echoed in criticisms of the section 504regulation and—later—the Child Abuse Amendmentsof 1984:• Inappropriate treatment decisions, although theyoccur, do so rarely.• Situations in which treatment decisions must bemade are best broken into the three categories ofclearly beneficial, ambiguous, and futile.• Apart from saying treatment for children withDown syndrome is clearly beneficial, little definitioncan be given to distinguish the clearly beneficialfrom the ambiguous.• Within these broad categories, discretion must begiven to well-informed parents and physicians tomake decisions in the best interests of children.• Intra-institutional review, usually in the form ofethics committees, is the best check on possibleabuses.• Government agencies or courts should normallybecome involved only when an ethics committeeconsiders that clearly beneficial treatment is beingrefused by adamant parents.American Academy of Pediatrics v.HecklerThe HHS regulation was soon subject to morethan rhetorical attack. The American Academy ofPediatrics, the National Association of Children'sHospitals and Related Institutions, and the Children'sHospital National Medical Center filed suit inthe Federal District Court for the District ofColumbia to invalidate it, contending that theInterim Final Rule was arbitrary and capricious, thatHHS lacked the statutory authority to promulgatethe rule, and that the rule impermissibly intrudedinto confidential relationships protected by theConstitution. 59 On April 14, 1983, Judge GerhardGesell invalidated the Interim Final Rule on proceduralgrounds, holding that the Interim Final Ruleshould have been published for public comment. 6060The Administrative Procedure Act requires that a generalnotice of proposed rulemaking be published in the FederalRegister at least 30 days prior to the effective date. An agencymust then give interested individuals the ability to participate inthe rulemaking through submission of written data, views, orarguments. An agency need not adhere to these restrictions ifeither (i) the rules are interpretative (that is, non-binding), generalstatements of policy, or rules of organization, procedure orpractice or (ii) the agency, for good cause, finds the notice andpublic procedure are impracticable, unnecessary or contrary tothe public interest. 5 U.S.C.A. §553 (1977).68

He also ruled that Secretary of Health and HumanServices Margaret Heckler had insufficient materialbefore her to consider relevant factors and assurerational consideration of the effect of the contemplatedregulatory action. 61 Gesell also expressedconsiderable skepticism that section 504 was intendedto apply to medical treatment decisions involvingchildren with disabilities and suggested that, if itwere, it might in at least some applications be anunconstitutional infringement on the right of privacy.62Proposed 504 Rule, July 1983HHS quickly moved to overcome the proceduralobjections that caused Judge Gesell to invalidate theInterim Final Rule. On July 5, 1983, HHS publisheda revised version of the earlier rule for publiccomment in the form of a "proposed rule." 63The Supplementary Information for the proposedrule addressed GeselFs criticisms of the InterimFinal Rule. Finding nothing in the plain language ofsection 504 or its legislative history to indicate anintent that infants not be given the protection thestatute affords those who are not infants, thepreamble concluded that an infant with a disability isboth an "individual" within the protection of section504, and a "person" within the protection of itsimplementing regulation. A "qualified handicappedinfant" was defined as one who could benefitmedically from the treatment:Judge Gesell rejected the government's argument that the InterimFinal Rule was either procedural or interpretive, viewing theaction as substantive because it provided for an "intrusive onpremisesenforcement mechanism." American Academy of Pediatrics,561 F. Supp. at 401. The good cause exception of § 553 of theAdministrative Procedure Act, the court noted, is narrowlyconstrued and only reluctantly countenanced. Id. The governmentargued that the lives of the infants were at risk, and thisrequired the expedited implementation of the regulations. JudgeGesell saw this as a slippery slope:Such an argument could as easily be used to justifyimmediate implementation of any sort of health or safetyregulation, no matter how small the risk for the population atlarge or how long-standing the problem. There is noindication in this case of any dramatic change in circumstancesthat would constitute an emergency justifying shuntingoff public participation in the rulemaking.Id.61Among the factors Judge Gesell believed HHS should haveconsidered were (i) the disruptive effects of the hotline; (ii) "thesudden descent of 'Baby Doe' squads on the scene, monopolizingphysician and nurse time and making hospital charts and recordsunavailable during treatment"; (iii) the interests of a child forciblyremoved from a hospital if the parents refuse to consent tosurgery; (iv) termination of Federal assistance to the hospital as awhole if a violation occurred; (iv) weighing of other factorsSection 504 would hold that where an infant would notbenefit medically from a particular treatment, the infantwould not be "qualified" to receive the treatment; thus, itsdenial would not violate Section 504. 64HHS responded to Judge GeselFs concern thatthere was insufficient evidence of widespread denialof treatment to justify the rule by reviewing anumber of cases and citing surveys indicating thatdenial of treatment was accepted by the majority ofpediatricians. 65The proposed rule was substantially similar to theInterim Final Rule. In response to charges that theInterim Final Rule would lead to a plethora ofunsubstantiated reports by janitors, visitors, andother members of the general public incompetent tomake judgments about the adequacy of medicaltreatment, the proposed rule allowed the requiredposter to be placed only in nurses' stations, ratherthan in wards open to the public. It added a newprovision relating to child protective services agenciesreceiving Federal financial assistance. Theywere required to develop procedures to ensureprompt processing of denial of treatment reports,with provisions for onsite investigations and theseeking of court orders to secure treatment. Theywere to notify the HHS Office for Civil Rights ofreports received and the steps taken to investigatethem. 66against the malpractice and disciplinary risks that would beimposed upon doctors and hospitals; (v) whether the terminationof painful procedures would be preferable when the prognosis iscertain death; (vi) the means of funding the extensive care thatwould be required by the children whom the regulation saved andthe allocation of scarce medical resources between defectivenewborns and other patients; and (vii) alternative means ofprotecting infants with a disability. Id. at 399-400.62561 F. Supp. at 403.63Nondiserimination on the Basis of Handicap, 48 Fed. Reg.30,846 (proposed July 5, 1983).84Id. In response to Judge Gesell's expressed concern that HHShad given inadequate consideration to whether the termination ofpainful procedures would be desirable for a child whose prognosisis certain death, the preamble stated:Section 504 does not compel medical personnel to attempt toperform impossible or futile acts or therapies. . .whichmerely temporarily prolong the process of dying of an infantborn terminally [ill]. . . .Such medical decisions, by medicalpersonnel and parents, concerning whether to treat, and if so,what form the treatment should take, are outside the scope ofSection 504.Id at 30,846-47.6588Id at 30,847-48.Id. at 30,851.69

Final 504 RuleHHS received nearly 17,000 comments on theproposed rule, of which 97.5 percent were favorable.67 It also conducted intensive negotiations withmedical organizations and disability rights advocacygroups. 68 Of particular importance in these discussionswas the position of the American Academy ofPediatrics (AAP). In congruence with the President'sCommission report, the AAP proposed:as an alternative to the proposed rule, that all hospitals, asa condition of participation in the Medicare program (notas a requirement of section 504) establish a reviewcommittee. Under this proposal. . .the committee wouldhave three functions: (1) to develop hospital policies andguidelines for management of specific types of diagnoses;(2) to monitor adherence through retrospective recordreview; and (3) to review, on an emergency basis, specificcases when the withholding of life-sustaining treatment isbeing considered. When the committee disagreed with aparental or physician decision to withhold treatment, thecase would be referred to the appropriate court or childprotective agency, and treatment would be continuedpending a decision. 69As a result of the negotiations, the HHS FinalRule, issued on January 12, 1984, was a compromisethat incorporated features of the AAP proposal andmade other modifications in the proposed rule; inreturn, the AAP agreed not to challenge the FinalRule. 70 HHS wrote: "These modifications aredesigned to establish a framework under which thesubstantial controversy that has attended the Department'sefforts to strengthen enforcement ofsection 504 in this area can be replaced by a morecooperative effort involving the Federal Government,the medical community, private advocacygroups and state governments." 71Key components of the Final Rule were (1) itsintegration of a voluntary, modified form of ethicscommittees, to be called "Infant Care ReviewCommittees"; (2) its modified poster requirement;(3) its requirements for State agencies; and (4) its67Final Rule (504), supra note 25, at 1,623.88Barringer, Koop Acted as Midwife for New "Baby Doe" Rule,Washington Post, Jan. 10, 1984, at A15, col. 3.69Final Rule (504), supra note 25, at 1,623.70Barringer, supra note 68, at A15, cols. 3-4. This agreement didnot keep the AAP's fellow medical organizations, the AmericanMedical Association and the American Hospital Association,from suing (successfully) to enjoin them. See infra note 109 andaccompanying text.71Final Rule (504), supra note 25, at 1,622.72Id. at 1651. HHS noted that review boards were still untried,that enforcement of a requirement for such committees in the70provisions for expedited investigation and enforcementaction.The Final Rule encouraged, but did not require,hospitals to establish infant care review committees(ICRCs), 72 and it described the purpose, procedures,and composition of a model committee. 73 Thedifferences between the AAP model and that in theFinal Rule were intended to "underscore that thepurpose of the ICRC is to advance the basicprinciples embodied in section 504." 74The Department does not seek to take over medicaldecisionmaking regarding health care for handicappedinfants. HHS agrees that the best decisionmakers aregenerally the parents and the physicians directly involved.However, there is, and must be, a framework withinwhich the decisionmakers, the parents and physicians,operate.That framework is established by laws. . . .including]section 504. . . .The fundamental issue involved in deciding whetherreview boards should be a substitute for enforcement ofsection 504 is whether the legal framework within whichthe decisionmaking parents and physicians are supposed tofunction (and generally do function) will be utilized.Under the proposal that review boards act in lieu ofgovernment, whether physicians or hospital review boardsadhere to the principles of section 504 would be determinedby those physicians and boards alone. . . .Whetherthey ever utilize the implementation schemes establishedby law to ensure that those principles are adhered towould also be decided by those parents, physicians, andreview boards. . . .This alternative proposal simply doesnot provide sufficient safeguards that the requirements ofsection 504 will be met. . . .[I]t would not be justifiablefor the Department to refrain from exercising a regulatoryrole to enforce the statute.. . .[Although unacceptable as a substitute, reviewboards can be very valuable. . . .[A] committee thatincludes individuals with medical expertise and peoplewith non-medical perspectives and that is guided byproper standards and protocols can be very helpful inbringing about informed, enlightened and fair decisionmaking.. . ."7,000 hospitals in the country would be difficult, and that becausethe American Medical Association and other medical groupsopposed any mandatory requirement, "there would likely beprotracted legal proceedings challenging the regulation." Id. at1,624.7345 C.F.R. §84.55(a) & (f) (1987). Infant care review committees,and the difference between their role as conceived by thePresident's Commission Report and AAP, on the one hand, andHHS, on the other hand, are discussed in chap. 11.74Final Rule (504), supra note 25, at 1,625.75Id. at 1624.

HHS agreed that when it investigated reports ofdiscriminatory denial of treatment at a hospital, itwould generally first consult with the hospital ICRCand delay investigating for 24 hours to receiveinformation from the ICRC unless "other action isnecessary to protect the life or health of a handicappedinfant." 76 It encouraged State child protectiveservices agencies to adopt similar guidelines forconsulting with ICRCs. 77The Final Rule not only redrafted the originalnotice required to be posted in hospitals, but alsogave hospitals the option of posting either of twoalternative notices. A hospital with an internallyadopted policy congruent with section 504 and withan internal review mechanism, including the opportunityto make an anonymous report free of retaliation,could post a notice with language designed toavoid suggesting that the hospital was an object ofsuspicion. 78 The notice could be posted in anylocation where medical professionals such as nursescould see it; it need not be posted where patients,visitors, or others could see it; and its size wasreduced to 5 by 7 inches. 79The Final Rule established basic duties for Statechild protective services agencies receiving Federalfinancial assistance in dealing with reports to themof medical neglect of children with disabilities. Eachsuch agency was obligated to establish and maintainprocedures to ensure that the agency use its "fullauthority. . .to prevent instances of medical neglectof handicapped infants." 80 The procedures includedrequirements that health care providers report in-7845 C.F.R. Part 84 App. C(b)(2) (1987)." 45 C.F.R. §84.55(c)(2) (1987).78The notice read:PRINCIPLES OF TREATMENT OF DISABLED IN-FANTSIt is the policy of this hospital, consistent with Federal law,that nourishment and medically beneficial treatment (asdetermined with respect for reasonable medical judgements)should not be withheld from handicapped infants solely onthe basis of their present or anticipated mental or physicalimpairments.This Federal law, section 504 of the Rehabilitation Act of1973, prohibits discrimination on the basis of handicap inprograms or activities receiving Federal financial assistance.For further information, or to report suspected noncompliance,call:[Identify designated hospital contact point and telephonenumber] or[Identify appropriate child protective services agency andtelephone number] orU.S. Department of Health and Human Services (HHS):800-368-1019 (Toll-free: available 24 hours a day; TDDcapability).stances of known or suspected medical neglect on a"timely basis"; 81 that a method be established bywhich the agency receives these reports; 82 thatthere be immediate review, and, where appropriate,onsite investigation, of such reports, 83 and provisionfor the protection of "medically neglected handicappedinfants," including, if necessary, court ordersto compel necessary nourishment and medical treatment.84 Further, each State agency was to providetimely notification to HHS of every report of"suspected unlawful medical neglect of handicappedinfants." 85As had its predecessors, the Final Rule authorizedexpedited access to hospital records when, in thejudgment of HHS, immediate access was necessaryto protect the life or health of an individual with adisability. 86 The Final Rule also eliminated thenormal 10-day notice requirement when, in thejudgment of the responsible HHS official, immediateaction to effect compliance was necessary to protectthe life or health of an individual with a disability. 87The expedited compliance provisions were designedto permit HHS to obtain a temporaryrestraining order to sustain the life of an infant inimminent danger of death. 88Effect of University HospitalThe underlying premise of the Final Rule wascalled into question by the Second Circuit's ruling inthe Baby Jane Doe case on February 23, 1984."Baby Jane Doe was born on October 11, 1983. 90The final New York court ruling against requiringThe identity of callers will be held confidential. Retaliationby this hospital against any person for providing informationabout possible noncompliance is prohibited by this hospitaland Federal regulations.Id. § 84.55(b)(3). The notice to be used in hospitals without suchpolicies was essentially the same, but began "Federal lawprohibits discrimination on the basis of handicap" and eliminatedreferences to hospital policy. Id. §84.55(b)(4).79Final Rule (504), supra note 25, at 1,626.80Id. §84.55(c)(l)." Id. §84.55(c)(l)(i).82Id. §84.55(c)(l)(ii).83Id. §84.55(c)(l)(iii).84Id. §84.55(c)(l)(iv).85Id. §84.55(c)(l)(v). The Supplementary Information madeclear that this applied to decisions of parents. Final Rule (504),supra note 25, at 1,622.8845 C.F.R. §84.55(d).8745 C.F.R. §88.45(e).88Final Rule (504), supra note 25, at 1,628.89The case is also discussed in chap. 2 (text accompanying notes14-15); chap. 3 (text accompanying notes 54-72); and chap. 5 (textaccompanying notes 25-32).90United States v. Univ. Hosp., 729 F.2d 144 (2d Cir. 1984).71

lifesaving operations to close her back lesion andinstall a shunt for her hydrocephalus came onOctober 28, 1983. On October 19, HHS had receiveda complaint under section 504 relating to the case. 91After studying the evidence entered in the Statecourt proceedings, which included the child's medicalrecords from birth through October 19, theSurgeon General considered it necessary to obtainmore recent medical records to determine if anyviolation of section 504 had occurred. The SurgeonGeneral stated: "An appropriate determination concerningwhether the current care of Infant Jane Doeis within the bounds of legitimate medical judgment,rather than based solely on a handicapping conditionwhich is not a medical contraindication to surgicaltreatment, cannot be made without immediate accessto. . .current medical records. . . ." 92 When repeatedrequests for the records by HHS wererebuffed, the Department of Justice filed suit inFederal district court for an injunction requiring thehospital to make them available. 93Although acknowledging that University Hospitalwas a recipient of Federal financial assistance andsubject to section 504, the district court enteredsummary judgment against the government, holdingthat the records already available established thatthe hospital had not engaged in discriminationprohibited by 504. The court found that "the paperssubmitted demonstrate conclusively that the decisionof the parents to refuse consent to the surgicalprocedures was a reasonable one based on dueconsideration of the medical options available.. . ." 94The government appealed to the Second CircuitCourt of Appeals. It maintained that the districtcourt's ruling had the absurd effect of requiringHHS to make an advance evidentiary showingconcerning the ultimate issue of unlawful conduct asa prior condition to securing the materials necessary91Id. at 146.92Quoted in id.93HHS relied upon 45 C.F.R. §80.6(c):Each recipient [of Federal funds] shall permit access by theresponsible Department official or his designee duringnormal business hours to such of its books, records, accountsand other sources of information, and its facilities as may bepertinent to ascertain compliance. . . .Asserted considerationsof privacy or confidentiality may not operate to barthe Department from evaluating or seeking to enforcecompliance. . . .94United States v. Univ. Hosp., 575 F. Supp. 607, 614-15(E.D.N.Y. 1983), affd 729 F.2d 144 (2d Cir. 1984).to reach the determination whether unlawful conducthad occurred. The Second Circuit noted that"[a]n administrative agency is entitled to access toinformation 'not plainly incompetent or irrelevant toany lawful purpose of the [agency] in the dischargeof [its] duties.'" 95 However, the Second Circuitconcluded that the proper question was whether"the subject matter of the investigation is within theagency's statutory jurisdiction." 96The Second Circuit concluded it was not. Afterdismissing the regulatory history as "inconclusive,"97 and holding that Baby Jane Doe was indeeda "handicapped individual" for purposes of section504, 98 the court essentially argued that the languageof the provision was not naturally adapted to theevaluation of medical treatment decisions. First, thecourt focused on the statute's requirement that suchan individual be "otherwise qualified" for the benefitsin question:[T]he phrase cannot be applied in the comparatively fluidcontext of medical treatment decisions without distortingits plain meaning. In common parlance, one would notordinarily think of a newborn infant suffering frommultiple birth defects as being "otherwise qualified" tohave corrective surgery performed or to have a hospitalinitiate litigation seeking to override a decision againstsurgery by the infant's parents."Second, the court wrote that medical decisionmakingis too complex to be analyzed in terms of"discrimination":Where the handicapping condition is related to thecondition(s) to be treated, it will rarely, if ever, be possibleto say with certainty that a particular decision was"discriminatory". . . .Beyond the fact that no two casesare likely to be the same, it would invariably requirelengthy litigation primarily involving conflicting experttestimony to determine whether a decision to treat, or notto treat, or to litigate or not to litigate, was based on a"bona fide medical judgment," however that phrase mightbe defined. 10095University Hospital, 729 F.2d at 149, quoting Endicott JohnsonCorp. v. Perkins, 317 U.S. 501, 509 (1943).98Id. at 150.97Id. at 154.98Id at 155.99Id. at 156.100Id. at 157. In fact, HHS had already described the distinctionbetween the condition requiring treatment and the "handicap"which is illegitimate as a ground for discrimination under section504. It did so in the supplemental information published with theFinal Rule on Jan. 12, 1984:[W]here the handicapping condition and the condition to betreated are the same. . .the "handicap" is the physical ormental impairment the infant has or will have (or "is72

Next, the Second Circuit reviewed the legislativehistory of section 504 and concluded that "Congressnever contemplated that section 504 would apply totreatment decisions of this nature." 101 It quoted withapproval Judge Gesell's dicta in his opinion strikingdown the Interim Final Rule: "[N]o congressionalcommittee or member of the House or Senate evereven suggested that section 504 would be used tomonitor medical treatment of defective newborninfants or establish standards for preserving a particularquality of life. No medical group appeared alertto the intrusion into medical practice which somedoctors apprehend from such an undertaking.. . ." 102Finally, the court took the position that requiringa hospital to go to court or to child protectiveservices agencies to override parental refusals ofconsent to their children's lifesaving treatment"would impose a particularly onerous affirmativeaction burden on the hospital." 103 Although itconceded that the precedent was "not directly onpoint,"-the Second Circuit quoted the 1979 SupremeCourt decision in Southeastern Community College v.Davis 10 * distinguishing between the "evenhandedtreatment of qualified handicapped persons" requiredby 504 and "affirmative efforts to overcomethe disabilities caused by handicaps" not required by504. 105 Therefore, the Second Circuit held thatsection 504 did not authorize the type of investigationthat had precipitated this lawsuit. 106The government did not ask the Supreme Courtto review University Hospital. Baby Jane Doe'sparents changed their minds, directing that theirdaughter be given life-preserving surgery; 107 withthe risk to her life removed, the government nolonger saw a need to pursue the case.Bowen v. American Hospital AssociationFollowing the Second Circuit's decision in UniversityHospital, the American Hospital Associationamended its complaint in an existing suit, and theAmerican Medical Association filed a separate suit,to challenge the four mandatory components of theFinal Rule. 108 The plaintiffs in both suits assertedthat the Final Rule was beyond the authority ofHHS under section 504. The two suits were consolidated.109The district court, regarding the legal issues ashaving been settled by the holdings in UniversityHospital, concluded that the mandatory provisionsof the Final Rule were "invalid, unlawful and mustbe set aside pursuant to the Administrative ProcedureAct, because [these provisions were] promulgatedwithout statutory authority." 110 The districtcourt issued an extremely broad injunction prohibitingHHS from:regarded as having") after completion of the treatment underconsideration. . . .[I]f the surgery would. . .be likely, in theexercise of reasonable medical judgment, to bring about itsintended result of avoiding. . .fatal consequences, thenfailure to perform the surgery because of the anticipatedimpairments in future life offends section 504, as thewithholding of surgery is because of the handicap and in spiteof the infant's being qualified to receive the surgery.Final Rule (504), supra note 25, at 1637 (emphasis in the original).101729 F.2d at 157. The legislative history of section 504described at the beginning of this chapter paints a differentpicture. See supra notes 6-12 and accompanying text.102Id. at 159, quoting Am. Academy of Pediatrics v. Heckler, 561F. Supp. at 401.103Id. at 160.104442 U.S. 397 (1979).105University Hospital, 729 F.2d at 160, quoting Davis, 442 U.S. at410. HHS took the position that hospitals generally do go to courtor to child protection agencies to override parental refusals ofconsent to lifesaving treatment for nondisabled children (when,for example, parents refuse to consent to blood transfusions fortheir children for religious reasons), so that requiring them to doso on behalf of children with disabilities merely mandatesevenhanded treatment, not affirmative action. Final Rule (504),supra note 25, at 1,631.10SUniversity Hospital, 729 F.2d at 161. Circuit Judge RalphWinter dissented. He wrote:[In adopting section 504,] Congress was persuaded that ahandicapped condition is analogous to race and that, so far asthe administration of federal financial assistance is concerned,discrimination on the basis of a handicap should be onstatutory par with discrimination on the basis of race.. . .A judgment not to perform certain surgery because aperson is black is not a bonafide medical judgment. So too, adecision not to correct a life threatening digestive problembecause an infant has Down's Syndrome is not a bona fidemedical judgment.Id. at 162.107Kerr, Baby Doe's Success[i\ Legal, Medical Legacy of Case,Newsday, Dec. 7, 1987, at 2, col. 2, 23, col. 1.108Additional plaintiffs included the Hospital Association ofNew York State, the American College of Obstetricians andGynecologists, the Association of American Medical Colleges,the American Academy of Family Physicians, and individualphysicians. Bowen v. Am. Hosp. Ass'n, 476 U.S. 610, 613, n.2(1986).109Bowen, 476 U.S. at 620.110Am. Hosp. Ass'n v. Heckler, 585 F. Supp. 541, 542(S.D.N.Y.), affd without opinion 794 F.2d 676 (2d Cir. 1984), affdsub nom. Am. Hosp. Ass'n v. Bowen, 476 U.S. 610 (1986) (citationomitted).73

any further implementation of the Final [Rule. . .andfrom] any other actions. . .to regulate treatment involvingimpaired newborn infants taken under authority of Section504, including currently pending investigation and otherenforcement actions. 111The Second Circuit summarily affirmed the districtcourt in an unpublished opinion." 2By a vote of five to three, the Supreme Court alsoaffirmed. However, only four Justices joined in theopinion, making it a nonbinding plurality, ratherthan a majority, opinion. 113 Justice Stevens wrotethe plurality opinion, in which Justices Powell,Marshall, and Blackmun joined. Former Chief JusticeBurger concurred in the judgment without anopinion and without explaining his refusal to joinStevens' decision. Justices White, O'Connor, andBrennan dissented, and Justice Rehnquist took nopart in the decision.The plurality acknowledged that section 504protects a child with a disability from discriminationsolely by reason of the person's disability:"[H]andicapped infants are entitled to 'meaningfulaccess' to medical services provided by hospitals,and. . .a hospital rule or state policy denying orlimiting such access would be subject to challengeunder Section 504." 114 However, noting that the suitarose out of a facial challenge to the Final Rule andwas not an enforcement action in a particular case,the plurality opinion declined to express a view onwhether section 504 "ever applies to individualmedical treatment decisions involving handicappedinfants," thus refusing to reach the central issuedecided by the Second Circuit. 115Instead, Justice Stevens focused on what theplurality regarded as a lack of evidence in theadministrative record sufficient to support the regulation:"It is an axiom of administrative law that anagency's explanation of the basis for its decisionmust include 'a "rational connection between thefacts found and the choice made.'"" 116 Substantialevidence had been assembled by HHS demonstratingwidespread denial of treatment to children withdisabilities, but Stevens pointed out that in the cases111476 U.S. at 625 n. 11.112Id. at 620.113Cf. United States v. Pink, 315 U.S. 203 (1942): "[T]he lack ofan agreement by a majority of the Court on the principles of lawprevents [an opinion] from being an authoritative determinationfor other cases." Id. at 216 (citation omitted).114Bowen, 476 U.S. at 624.115Id.116Id. at 626, quoting Motor Vehicle Mfrs. Ass'n v. State FarmMut, 463 U.S. 29, 43 (1983) and Burlington Truck Lines v.United States, 371 U.S. 156, 168 (1962).74documented, the children's parents had agreed notto give consent for treatment: "A hospital's withholdingof treatment when no parental consent hasbeen given cannot violate section 504, for withoutthe consent of the parents or a surrogate decisionmakerthe infant is neither 'otherwise qualified' fortreatment nor has he been denied care 'solely byreason of his handicap.'" 117This, perhaps the central point in the pluralityopinion, stimulated the U.S. Commission on CivilRights to invite extensive testimony and undertakesubstantial research focusing on the interrelationshipof parents and physicians in the making of treatmentdecisions. The evidence thus gathered has beenanalyzed in chapter 2 of this report. In the view ofthe Commission, it provides convincing proof that,in the words of Professor James Ellis:[The Stevens plurality opinion] misperceives the nature ofthe process by which parents, in conjunction with theirdoctors, make decisions about handicapped newborns.. . .All of the literature suggests and all of the accounts byparents, including those who testified before [the Commission],suggest that. . .it's one in which parents look totheir physician for information, seek guidance from theirphysician and, although they ultimately have the formaland ultimate decision, often that's shaped by what they'retold. And discrimination can take place in what they'retold. 118In dissent in Bowen, Justices White and Brennanraised this very point:[T]he parental consent decision does not occur in avacuum. In fact, the doctors (directly) and the hospital(indirectly) in most cases participate in the formulation ofthe final parental decision and in many cases substantiallyinfluence that decision. Consequently, discriminationagainst a handicapped infant may assume guises other thanthe outright refusal to treat once parental consent has beengiven. Discrimination may occur when a doctor encouragesor fails to discourage a parental decision to refuseconsent to treatment for a handicapped child when thedoctor would discourage or actually oppose a parentaldecision to refuse consent to the same treatment for a117Bowen, 476 U.S. at 630. Since section 504 applies only torecipients of Federal financial assistance and parents are not suchrecipients, section 504 does not reach decisions by parentsthemselves to withhold consent for treatment solely on the basisof handicap.118Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 18 (1986) (vol. II) (testimony ofJames W. Ellis, School of Law, University of New Mexico).

nonhandicapped child. Or discrimination may occur whena doctor makes a discriminatory treatment recommendationthat the parents simply follow. Alternatively, discriminationmay result from a hospital's explicit laissez-faireattitude about this type of discrimination on the part ofdoctors. 119However, the plurality could not find such reasoningor evidence for it in the administrativerecord: "The Secretary. . .has not even adumbrateda theory of 'discrimination' remotely resembling theone invented by the dissent, and therefore has notmade the essential connection between the evidenceof physician attitudes and the regulatory choicemade here." 120Because the plurality believed that the administrativerecord then before it supplied no basis for thisapproach to a justification of the HHS investigationsand regulatory action, Justice Stevens' pluralityopinion did not reach the question of what effect theexistence of such an administrative record mighthave had on the ruling in Bowen. It did, however,briefly raise two potential objections to such anapproach."[T]he dissent's theory," Justice Stevens wrote,"rests on the unstated premise that the statute mayprevent the giving of advice to do something whichSection 504 does not itself prohibit. It is hardlyobvious that the Rehabilitation Act of 1973 forbidsphysicians from 'aiding and abetting' a parentaldecision which parents admittedly have a right tomake." 121But most civil rights laws, when they do not reachpurely private discrimination, nevertheless prohibitcooperation with it by the State or by those whomay be held accountable for their use of publicmoney. "That the Constitution may compel tolerationof private discrimination in some circumstancesdoes not mean that it requires state support for suchdiscrimination." 122 Section 504 exists to ensure thattax funds are not used to participate in or fosterdiscrimination based on handicap. A regulationdating to 1977 includes in the list of discriminatoryactions prohibited by section 504 an attempt to19476 U.S. at 658-59 (White & Brennan, JJ., dissenting).20Id. at 637 n.22 (plurality opinion).Id. at 636-37 n.22.22Norwood v. Harrison, 413 U.S. 455, 463 (1973).» 45 C.F.R. §84.4(b)(v) (1987).24476 U.S. at 637 n.22.25Brandenburg v. Ohio, 395 U.S. 444, 447 (1969) (emphasisadded).126The argument that there may be some constitutional right ofphysicians that precludes governmental action to protect the"[a]id or perpetuate discrimination against a qualifiedhandicapped person by providing significantassistance to. . .[a] person that discriminates on thebasis of handicap in providing any aid, benefit, orservice to beneficiaries of the [recipient's] program."123Justice Stevens' second objection was based onthe first amendment. "[O]ne might expect an explanationfrom the Secretary," he wrote, "as to how thehotlines and emergency on-site inspections contemplatedby the Final [Rule] square with the constitutionaldoctrines on regulation, direct or indirect, ofspeech in general and of decisionmaking by healthcare professionals in particular." 124This objection misconceives the protections theConstitution affords to freedom of speech. A physicianis protected by the first amendment in makingthe general claim that children with disabilitiesought to be denied lifesaving medical treatment, justas she or he would be in advocating in general termsthe violent overthrow of the government. But aphysician is no more protected in using words tobring about denial of treatment to a particular childin violation of section 504 than she or he would be inusing words to conspire in a specific and particularattempt to assassinate the President. "[T]he constitutionalguarantees of free speech and free press do notpermit a State to forbid or proscribe advocacyof. . .law violation except where such advocacy isdirected to inciting or producing imminent lawlessaction and is likely to incite or produce such action. " 125The exception is tailormade for circumstances inwhich health care personnel urge the parents to optfor denial of lifesaving medical treatment to aparticular otherwise qualified child solely on thebasis of the child's handicap. 126As the plurality recognized, HHS independentlysought to justify the Final Rule on the ground that"a hospital's failure to report parents' refusals toconsent to treatment violates Section 504, and thatpast breaches of this kind justify federal oversight."127 Justice Stevens recognized that "a hospital'sselective refusal to report medical neglect ofrights of children with disabilities to be free of discriminatorydenial of medical treatment is laid to rest by Whalen v. Roe, 429U.S. 589 (1977). There, the Court held that a physician's right toadminister medical care is no greater than the patient's right toreceive it—that, in effect, any constitutional rights physicianspossess specifically in their role as physicians is only a derivativeone. Id. at 604, n.33.127Bowen, 476 U.S. at 637.75

handicapped infants might violate Section 504. . .ifthe hospital failed to report medical neglect of ahandicapped infant when it would report suchneglect of a similar nonhandicapped infant" 128Nevertheless, the plurality considered that "theSecretary has failed to point to any specific evidencethat this has occurred," 129 and therefore concludedthe regulation was not adequately supported by theadministrative record. 130The plurality opinion leaves a puzzling gapbetween the logic of its analysis and the apparentbreadth of the plurality's description of the Court'sinjunction. Nothing in Justice Stevens' analysissuggests that HHS should be prevented from investigatinginstances in which it is alleged that a recipientof Federal financial assistance is failing to reportmedical neglect solely because the victim has adisability, 131 only that HHS had provided insufficientevidence of the prevalence of discriminatorynonreporting to provide an administrative justificationfor the Final Rule. Yet, Justice Stevens wrote,"the injunction forbids continuation or initiation ofregulatory and investigative activity directed atinstances in which parents have refused consent totreatment. . . ." 132 Taken literally, that might appearto forbid investigations of discriminatorynonreporting by a Federal financial assistance recipi-128Id. at 637 n.23. Justice Stevens wrote:Because respondents have challenged the Secretary's regulationson their face, we have no occasion to address thequestion whether infants with birth defects are similarlysituated with infants in need of blood transfusions (theparadigm case in which hospitals have reported or havesought to override parental decisions. . .) or whether ahospital could legitimately distinguish between the twosituations on the basis of the different risks and benefitsinhering in certain operations to correct birth defects, on theone hand, and blood transfusions, on the other hand.Id. at 637-38 n.23. Naturally, if consent for treatment is withheld,not because there is a preference that the child die, but becausethe risks to the child's life from the treatment appear to outweighthe chance that the treatment would be successful in preservingthe child's life, there is no violation of section 504.129Bowen, 476 U.S. at 637-38.130The plurality also regarded as unjustified HHS directives toState child protective services agencies that receive Federalfinancial assistance concerning the manner in which they shouldprocess reports of medical neglect of children with disabilities andthe priority they should give to them:The Final Rule also order[s] state agencies to "immediate[ly]"review reports from hospitals, §84.55(c)(l)(iii), toconduct "on-site investigation[s]," id., and to take legalaction "to compel the provision of necessary nourishmentand medical treatment," § 84.55(c)(l)(iv)—all without regardto the procedures followed by state agencies in handlingcomplaints filed on behalf of nonhandicapped infants. . . .The complaint-handling process the Secretary wouldimpose on unwilling state agencies is totally foreign to the76ent, nonreporting that, of course, could only becomean issue when parents have at least nominallyrefused consent. 133Because there was no binding majority opinion,and because the plurality opinion is ambiguous, itmight be appropriate for the Department of Healthand Human Services to act to enforce section 504 ina well-documented instance of discriminatory failureto report as a way of ultimately obtaining clarificationor adjustment from the Court.Enforcement of section 504 is contingent, ofcourse, on receipt of Federal financial assistance bythe source of alleged discrimination. In the pluralityopinion, Justice Stevens wrote: "We do not addressthe question whether reporting, either as a hospitalpractice or as a requirement of state law, constitutesa 'program or activity receiving Federal financialassistance' under Section 504." 134 The Commissionconcludes that passage of the Civil Rights RestorationAct eliminates this concern, since it defines"program or activity" under section 504 as including"all of the operations of. . .an entire corporation,partnership, or other private organization. . .whichis principally engaged in the business of providing.. .health care. . . ," 135 If a hospital engages inauthority to prevent discrimination conferred on him bySection 504. .... . .Even if a state agency was scrupulously impartial asbetween the protection it offered handicapped and nonhandicappedinfants, it could still be denied federal funding forfailing to carry out the Secretary's mission with sufficientzeal.Id. at 639-41.131But see text accompanying note 134, infra.132133Bowen, 476 U.S. at 625, n.ll.The dissent took note of this point:The plurality apparently would enjoin all enforcementactions by the Secretary in situations in which parents haverefused to consent to treatment. . . .Yet it is not clear to methat the plurality's basis for invalidating these regulationswould extend to all such situations. I do not see, for example,why the plurality's finding that the Secretary did notadequately support his conclusion that failures to reportrefusals to treat likely result from discrimination means thatsuch a conclusion will never be justified. The Secretary mightbe able to prove that a particular hospital generally fails toreport nontreatment of handicapped babies for a specifictreatment where it reports nontreatment of nonhandicappedbabies for the same treatment. . . .The fact that the Secretaryhas not adequately justified generalized action under theregulations should not mean that individualized action inappropriate circumstances is precluded.Id. at 2132 (White & Brennan, JJ., dissenting).134Id. at 2119 n.25.135Pub. L. No. 100-259, §4, 102 Stat. 29 (1988), codified at 29U.S.C. §793(b)(3)(A)(ii) (Supp. 2, July 1988).

eporting cases of medical neglect to the State childprotective services agency, that is part of theoperations of a corporation that principally provideshealth care; if any part of the hospital receivesmedicaid or medicare, discrimination based on handicapin the reporting operation, therefore, violatessection 504.Importance of Section 504 EnforcementAlthough there is another basis for Federal enforcementof the right to treatment of children bornwith disabilities—the Child Abuse Amendments of1984, 136 which are described in the next chapterenforcementof section 504 would provide certainadvantages not present in the Child Abuse Amendmentsalone. For one, section 504 reaches medicaldiscrimination against people with disabilities of anyage; unlike the Child Abuse Amendments, its coverageis not limited to children. For another, the ChildAbuse Amendments apply only to States that chooseto accept Federal funding for their child abuseprograms. 137 In fiscal year 1988, four States—including California, the Nation's most populous—were not covered by the amendments. 138 Even inthe other States, there are a number of ways inwhich the amendments are inferior to section 504 inprotecting against medical discrimination. As JamesBopp, Jr., a member of the President's Commissionon Mental Retardation and the director of a legalservices program specializing in denial of medicaltreatment to people with disabilities, testified:[T]he remedies available in Section 504 are superior. TheChild Abuse Amendments of 1984 require, at the pain ofloss of Federal funds, State child protective serviceagencies to act. That is quite in contrast with theapplication of Section 504, which provides a substantivelaw standard for the entities that are discriminating againstpersons with disabilities in the delivery of medical care,which are hospitals and hospital employees and otherswho are recipients of Federal financial assistance. So theChild Abuse Amendments are quite indirect in their abilityto influence the discrimination that is occurring withinhospitals. Pub. L. No. 98-457, tit. 1, §§ 121-28, 98 Stat. 1749, 1752-55(codified at 42 U.S.C.A. §§ 5101-5103 (West Supp. 1988)).137Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 35 (1986) (vol. II) (testimony ofJames W. Ellis, School of Law, University of New Mexico).Accord, id. at 159 (testimony of James Bopp, Jr., President,National Legal Center for the Medically Dependent and Disabled).138Telephone interview with Mary McKough, Program Analyst,National Center for Child Abuse and Neglect, DepartmentSecond, section 504 provides for private remedies,remedies where a child who is denied treatment can go toFederal court and insist upon treatment if a hospital woulddeny treatment or, second, may seek damages to compensatehim for his injuries.Third, actions by State child abuse and neglect agenciesonly occur on a case-by-case basis. Section 504, incontrast, can be the subject of a class action. . . .TheChild Abuse Amendments only would involve a case-bycaseprotection of then-alive infants that are deniedtreatment, whereas under section 504 you can get injunctiverelief to prohibit the hospital from using this form ofcriteria and protect all future infants. 139The Commission heard revealing testimony frompediatric neurologist Dr. Patricia Ellison concerningthe comparative effect of the section 504 regulationsand those under the Child Abuse Amendments of1984. When the section 504 rules were issued, shesaid, discussions about stopping lifesaving treatmentin the neonatal intensive care unit "promptlyceased." Because physicians feared getting intotrouble, "They treat[ed], and they continue[d] totreat." By contrast, under the Child Abuse Amendments,because physicians have "long worked withpeople in child abuse[,]. . .we would be surprised ifit were an overwhelmingly interfering system.. .and one doesn't expect that they will bedoing a lot of newborn investigation by andlarge." 140It creates a strange anomaly for the FederalGovernment to mandate that State agencies enforcedetailed national standards that forbid medical discrimination,while permitting Federal funds to beused for programs that are engaged in the samediscrimination. The Federal Government enforcesracial and sexual antidiscrimination standards forrecipients of its funds; it should do the same toprevent medical discrimination against persons withdisabilities.ConclusionThe Commission's reading of the legislative historyand plain meaning of section 504 persuade it thatof Health and Human Services (Dec. 2, 1988). Ohio receivedfunds in prior fiscal years, but was denied FY 1988 funds forreasons unrelated to the Baby Doe requirements. Id.189Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 162 (1986) (vol. II) (testimonyof James Bopp, Jr., President, National Legal Center for theMedically Dependent and Disabled).140Id. at 240-41 (testimony of Patricia Ellison, M.D.). Dr.Owens concurred. Id. at 241 (testimony of Walter Owens, M.D.,Bloomington Obstetrics and Gynecology, Inc.).77

the provision does cover discriminatory denial ofmedical treatment to people with disabilities. Acentral problem with the Bowen plurality opinion isthat it suggests that section 504 puts no constraintson a Federal financial assistance recipient's discriminatorydenial of treatment to a person with adisability if the denial is authorized by a nonrecipientsuch as a parent who, as a surrogate decisionmakerfor a child with a disability, normally has the legalauthority to provide or withhold consent for thechild's medical treatment. (The logic of the pluralityopinion applies equally to such authorizations byother surrogate decisionmakers, such as a guardianfor a person with a disability who is not competentto make health care decisions. The position taken bythe plurality thus puts at risk not only children, butalso older people with disabilities.) In the view ofthe Commission, a recipient of Federal financialassistance should not be able to escape the requirementsof section 504 simply by persuading orencouraging a nonrecipient to authorize what, butfor the nonrecipient's involvement, would be prohibiteddiscrimination. A recipient's substantial involvementin a nonrecipient's discriminatory practicesshould be held to violate section 504.141The Commission does not consider that this course of actionwould violate the decision of the Supreme Court in Bowen. First,the analysis in the plurality opinion depends almost entirely on thenature of the administrative record then before the Court. Thisreport, by supplying information missing from that record,provides a basis for reopening many of the questions the pluralityresolved against HHS. Second, this report provides a basis forconcluding that the "decisions" by many parents to denyThe Commission's hearings and research summarizedin chapter 2 supply information related to theissue that the Court considered not to have beensatisfactorily addressed in the administrative recordat the time Bowen was decided. Chapter 2 demonstratesthat decisions nominally made by parents todeny treatment to children with disabilities oftenmay, in fact, be generated by health care personnelwho act as the agents of health care facilities. Insuch cases, health care providers who do notprovide lifesaving medical treatment to childrenwith disabilities that would be provided were it notfor the disabilities should be held to violate section504 despite parental acquiescence in the treatmentdenial.In light of this, and in light of the advantages ofsection 504 for addressing denials of treatment, theCommission recommends that the Executive branchgive careful consideration to resuming investigationof allegations that children with disabilities arediscriminatorily denied medical treatment based onhandicap and initiate enforcement of section 504 incases in which the allegations are found to bejustified. 141treatment are not truly the product of informed consent; hence, itis questionable that they offer a legally valid or binding consent.Since the injunction bars investigation only of cases "in whichparents have refused consent to treatment," Bowen, 476 U.S. at625 n.ll, investigations of instances in which it is suspected thatparents have not given a legally binding consent to denial oftreatment are not enjoined.78

Chapter 7The Child Abuse Amendments of 1984While HHS was responding to the public furoraroused by the Bloomington Infant Doe case byissuing its Notice to Health Care Providers and,later, the first version of the section 504 Baby Doeregulations, 1 Members of Congress were alsoreacting. 2 On May 26, 1982, Representative JohnErlenborn introduced a bill to prevent denial oftreatment to children with disabilities—a bill that, insubstantially modified form, eventually became theChild Abuse Amendments of 1984. 3 The bill wasdesigned to create a private right of action againstany person using the facilities of a health carefacility who sought to "deprive a handicapped infantof nutrition which is necessary to sustain life, ordeprive a handicapped infant of medical treatmentwhich is necessary to remedy or ameliorate a lifethreateningmedical condition, if. . .any such deprivationis carried out for the purpose of causing orallowing the death of such infant; and. . .suchnutrition or medical treatment generally is providedto similarly situated infants and handicapped infants."4The bill was not acted upon in 1982, but, onMarch 3, 1983, a significantly altered version wasintroduced by Representative Austin Murphy,Chairman of the House Select Education Subcom-1See chap. 6.2See, e.g., Newborn Baby Starves to Death in Bloomington,Indiana, 128 Cong. Rec. 7143-44 (1982) (statement of RepresentativeHyde); A Question of "Equal Justice Under Law," 128 Cong.Rec. 12171-72 (1982) (statement of Representative Erlenborn).3Pub. L. No. 98-457, tit. 1, §§ 121-28, 98 Stat. 1749, 1752-55,codified at 42 U.S.C.A. §§5101-5103 (West Supp. 1988).• H.R. 6492, 97th Cong., 2d Sess., sec. 3, §202 (1982).sH.R. 1904, 98th Cong., 1st Sess. (1983).6 This act established a program of Federal financial assistance toState agencies for the identification, prevention, and treatment ofmittee, Representative John Erlenborn, the rankingminority member of the House Education and LaborCommittee, and a number of other cosponsors. 5This bill would have required States receiving fundsunder the Child Abuse Prevention and TreatmentAct 6 to establish "procedures. . .to be followed bychild protective service agencies, health care facilities,health and allied medical professionals, suchother agencies or individuals as a State may deemappropriate, social service providers, and courts ofcompetent jurisdiction, to insure that nutrition (includingfluid maintenance), medically indicatedtreatment, general care, and appropriate social servicesare provided to infants at risk with life-threateningcongenital impairments." 7The House committee reported an amended versionof the bill on May 16, 1983. Under this version,as described by the House committee report, theSecretary of Health and Human Services was toconduct a study of the incidence of denial oftreatment and then:[to] promulgate guidelines to encourage and assist theStates in establishing local health care review mechanismsfor health and allied professionals and facilities thatprovide care to those at risk infants. These local reviewmechanisms would include medical professionals, disabilityrepresentatives, and persons concerned with the rightschild abuse and neglect. It also created the National Center onChild Abuse and Neglect to facilitate the gathering and disseminationof information on child abuse, as well as to keep records onthe incidence of child abuse. The underlying act was amendedand extended several times. Pub. L. No. 93-247, 88 Stat. 4 (1974),codified at 42 U.S.C.A. §§5101-5106 (West 1983 & Supp. 1988).See id § 5101 note (West 1983 & Supp. 1988) for citations to otheramending legislation.7H.R. 1904, 98th Cong., 1st Sess. sec. 103(a)(3) (1983).79

of the infants. The review mechanism would providespecial consideration of the uniqueness of each case whilethe child was being cared for, and would not preventeither the parents or health care professionals or others onthe review mechanism from utilizing other procedures toappeal any findings and conclusions. In a case where theparents, attending physicians and review mechanism concurto not treat an infant, an automatic referral of the caseshall be made to a child protection agency to assure thatthe decision was made on medical considerations and notsolely based on other considerations such as the futurequality of life or future disabling conditions. 8In an effort to satisfy objections from medicalorganizations, the principal sponsors and committeestaff prepared amendments to the legislation after itwas reported to delete the HHS incidence study, tomake the "local review mechanisms" optional foreach hospital, and to allow the required proceduresto be incorporated into existing State child protectiveservices procedures. 9 Nevertheless, medicalorganizations lobbied against the bill, 10 and theWaxman-Chandler amendment was proposed on theHouse floor "to eliminate the current Baby Doeprovisions from the bill and to provide instead forlocal review committees to advise families andphysicians on a case-by-case basis." 11 This amendmentwas defeated by a vote of 231 to 182, with 20not voting. 12On September 28, 1983, the Senate Committee onLabor and Human Resources reported its version ofthe legislation. The committee report stated that theproblems required "greater scrutiny and remedialaction." 13 Declaring that there was a "sufficientbody of evidence" indicating that infants withdisabilities were being denied treatment, 14 it stated,"this practice is not isolated to one or two instances."15 The Senate committee bill would haveestablished an advisory committee to the Secretaryof Health and Human Services to "conduct acomprehensive study of decision making proceduresin health care facilities that involve the medicalmanagement of seriously ill handicapped infants." 16The advisory committee was to complete its study in6 months, after which the Secretary could issueregulations "concerning the establishment of localdecision-making procedures with regard to seriouslyill handicapped infants which procedures will at aminimum guarantee that each health care facilitywill provide such infants proper feeding and appropriatemedications for pain and sedation," regulationsthat the hospitals would have to follow or loseFederal financial assistance. 17Disability rights groups considered the Senatecommittee version unacceptable because it failed toprovide what they considered adequate guaranteesfor treatment and because of its reliance on internalhospital self-policing. After these views were madewidely known, six Senators whose views spannedthe ideological spectrum (Orrin Hatch, ChristopherDodd, Jeremiah Denton, Alan Cranston, Don Nickles,and Nancy Kassebaum) and their staffs encouragedrepresentatives of the interest groups involvedto negotiate a compromise amendment. 18 ThomasNickels, legislative director and counsel to theAmerican Nurses Association, told the Commission:"[I]t seemed to us [that] we perceived very clearlythat there was a mood in the Congress that thereshould be some process by which reporting could8H.R. Rep. No. 159, 98th Cong., 1st Sess. 2-3 (1983).9Murphy, Committee Explanation of the Child Abuse Reauthorization,H.R. 1904 (undated) (letter to colleagues circulatedshortly before House floor debate) (available in files of U.S.Commission on Civil Rights). See also 130 Cong. Rec. 1433(1984).10See Letter to Members of Congress from American Academyof Pediatrics, American Association of Medical Colleges, AmericanPsychiatric Association, National Association of Children'sHospitals and Related Institutions, American Academy of FamilyPhysicians, American Medical Association, American HospitalAssociation, Federation of American Hospitals, and AmericanCollege of Obstetricians and Gynecologists (Nov. 4, 1983); letterto Members of Congress from American College of Obstetriciansand Gynecologists (Nov. 7, 1983); Letter to Members of Congressfrom American Hospital Association (Jan. 31, 1984) (available infiles of U.S. Commission on Civil Rights).11Letter to Colleagues from Reps. Henry Waxman, JohnDingell, Rod Chandler, James Quillen, and J. Roy Rowland(Nov. 14, 1983) (available in files of U.S. Commission on CivilRights).2130 Cong. Rec. 1442-43 (1984).3S. Rep. No. 246, 98th Cong., 1st Sess. 11, reprinted in 1984 U.S.Code Cong. & Admin. News 2918, 2928.Id.5Id. at 16, 1984 U.S. Code Cong. & Admin. News at 2933.8Id. at 16, 1984 U.S. Code Cong. & Admin. News at 2933.7Id. at 17, 1984 U.S. Code Cong. & Admin. News at 2934.Interview with Thomas Nerney, disability rights grouprepresentative present at the negotiations (Sept. 19, 1988). Stafffrom the office of Sen. Edward Kennedy were also involved inthe negotiations. Id. Gary J. Caruso, former Legislative Directorof the House Select Subcommittee on Education of the Committeeon Education and Labor, told the Commission: "[A] numberof Democrats and Republicans on both sides. . .felt that this wasa civil rights matter that should be addressed. And when all thegroups finally saw that the Democrats and Republicans. . .weregoing to act on something, they got involved." Protection ofHandicapped Newborns: Hearing Before the United States Commissionon Civil Rights 234 (1985) (vol. I).80

occur. . . .We got involved because we wanted tohave a say in how that process worked. . . ." 19A precedent existed for negotiations among medicaland disability rights groups in connection withthe Baby Doe issue. In 1983, under the auspices ofthe Office for Special Education and RehabilitativeServices in the Department of Education, 20 disabilityrights and medical groups negotiated a set of"Principles of Treatment of Disabled Infants." Thedocument was signed on November 29, 1983, after 7months of discussions. With respect to medical care,it provided:When medical care is clearly beneficial, it should alwaysbe provided. When appropriate medical care is notavailable, arrangements should be made to transfer theinfant to an appropriate medical facility. Consideration[s]such as anticipated or actual limited potential of anindividual and present or future lack of available communityresources are irrelevant and must not determine thedecisions concerning medical care. The individual's medicalcondition should be the sole focus of the decision.These are very strict standards.It is ethically and legally justified to withhold medicalor surgical procedures which are clearly futile and willonly prolong the act of dying. However, supportive careshould be provided, including sustenance as medicallyindicated and relief of pain and suffering. The needs of thedying person should be respected. The family also shouldbe supported in its grieving.In cases where it is uncertain whether medical treatmentwill be beneficial, a person's disability must not be the basisfor a decision to withhold treatment. At all times duringthe process when decisions are being made about thebenefit or futility of medical treatment, the person shouldbe cared for in the medically most appropriate ways.When doubt exists at any time about whether to treat, apresumption always should be in favor of treatment. 21These principles were to be referred to frequentlyin the negotiations over the Child Abuse Amendments.Those negotiations were lengthy and intense.22 They eventually produced an agreementthat was announced in the Congressional Record onJune 29, 1984, in the form of proposed statutorylanguage and a "Joint Explanatory Statement" bythe principal sponsors of the compromise amendment.23 This statement was to serve the legislativehistory function of a committee report.The Senate passed the compromise amendment onJuly 26, 1984, by voice vote and the amended bill bya vote of 89-0. 24 On September 19, 1984, theconference committee reported an agreed bill thatessentially incorporated the Senate-passed compromiseversion. Furthermore, the conference committeereport included most of the Principal Sponsors'Statement. 25 The conference committee version wasadopted by the House on September 26 and by theSenate on September 28. 26 The President signed itinto law on October 9, 1984. 2719Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 57 (vol. I) (1985). Dr. JamesStrain, past president of the American Academy of Pediatrics,testified: "I think we became aware, as the discussion went on,that there was a growing need to have something in place. Weweren't terribly enthusiastic about this to begin with, frankly. Butwhen it became apparent that there was a good deal ofconcern. . .[w]e felt it was better to get in and make oursuggestions to try to develop a law that would be workable." Id.at 56.20Interview with Thomas Nerney, former expert consultant,Office for Special Education and Rehabilitation Services, U.S.Department of Education (Sept. 19, 1988).21Joint Policy Statement: Principles of Treatment of DisabledInfants, 73 Pediatrics 559 (1984) [hereinafter Principles of Treatment].The signatories were the Association for Retarded Citizens,the National Down's Syndrome Congress, the AmericanCoalition of Citizens with Disabilities, Inc., the Association forPersons with Severe Handicaps, the American Association onMental Deficiency (now the American Association on MentalRetardation), the American Association of University AffiliatedPrograms, Persons with Developmental Disabilities, the SpinaBifida Association of America, the National Association ofChildren's Hospitals and Related Institutions, Inc., and theAmerican Academy of Pediatrics.22Among groups represented at one time or another in thenegotiations were the American Medical Association (whichultimately actively opposed the compromise), the AmericanHospital Association, the American Academy of Pediatrics, theAmerican Nurses Association, the National Association of Children'sHospitals and Related Institutions, the American Collegeof Obstetricians and Gynecologists, the Nurse's Association of theAmerican College of Obstetricians and Gynecologists, the AmericanCollege of Physicians, the California Association of Children'sHospitals, the Catholic Health Association, the NationalRight to Life Committee, the American Life Lobby (whichultimately actively opposed the compromise), the ChristianAction Council, the Association for Retarded Citizens of theUnited States, the American Association on Mental Deficiency,the Spina Bifida Association of America, the Down's SyndromeCongress, People First of Nebraska, the Association for Personswith Severe Handicaps, the Disability Rights Center, and OperationReal Rights.23130 Cong. Rec. S8951 (daily ed. June 29, 1984) [hereinafterPrincipal Sponsors' Statement]. See also Association for RetardedCitizens of the United States, Compromise Reached on "BabyDoe" Legislation, Press Release (July 2, 1984) (available in files ofU.S. Commission on Civil Rights).2 * 130 Cong. Rec. S9307, S9328 (daily ed. July 26, 1984).25H.R. Conf. Rep. No. 1038, 98th Cong., 2nd Sess. 40 (1984),reprinted in 1984 U.S. Code Cong. & Admin. News 2947, 2969-[hereinafter Principal Sponsors' Statement].261984 U.S. Code Cong. & Admin. News 2918.2798 Stat. 1749 (1984).81

Under the law, the Department of Health andHuman Services was obligated to promulgate regulationsto implement the act and to publish modelguidelines for hospital-based infant care reviewcommittees. 28 These committees are voluntaryunder the 1984 amendments, as are the guidelinessuggested for them. 29 A proposed implementingregulation was published by HHS on December 10,1984. 30 In excess of 116,000 comments, most of themfavorable, were received on the proposed regulation.31On April 15, 1985, the HHS promulgated theFinal Rule. In addition to the regulation itself, HHSpublished an appendix containing "InterpretativeGuidelines." The Interpretative Guidelines were inlarge part derived from part of the proposedregulation. In response to critical comments frommedical organizations, HHS decided to remove theclarifying definitions from the final regulation itself.However, because HHS continued "to believe thatguidance relating to interpretations of keyterms. . .will aid in effective implementation of thestatute (a belief shared by many commenters)," itincorporated its understanding of them into theappendix. 32 HHS wrote:In publishing these interpretative guidelines, the Departmentis not seeking to establish them as binding rules oflaw, nor to prejudge the exercise of reasonable medicaljudgment in responding to specific circumstances. Rather,this guidance is intended to assist in interpreting thestatutory definition so that it may be effectively andrationally applied in specific cases so as to fully effectuatethe statutory purpose of protecting disabled infants. 33Thus, the Interpretative Guidelines give "all partiesthe benefits of very relevant interpretations of thestatute by the agency charged with its implementation."3428ChDd Abuse Amendments of 1984, 42 U.S.C.A. §5103 note(West Supp. 1988).29See chap. 11 for a detailed consideration of the HHS modelguidelines for infant care review committees issued in accordancewith the amendments.30Child Abuse and Neglect Prevention and Treatment Program,49 Fed. Reg. 48160 (1984) (to be codified at 45 C.F.R. pt. 1340)(proposed Dec. 10, 1984) [hereinafter Proposed Rule (CAA)].31Child Abuse and Neglect Prevention and Treatment Program,50 Fed. Reg. 14878, 14879 (1985) (codified at 45 C.F.R. pt. 1340)[hereinafter Final Rule (CAA)].32Id. at 14880.33Id.34Id. at 14882.35Id. at 14878.36Telephone interviews with Mary McKeough, Program Analyst,National Center for Child Abuse and Neglect, Office of82The relevant provisions of the Child AbuseAmendments of 1984 and their implementing regulationbecame effective on October 9, 1985. 35 As ofDecember 1988, four States—California, Indiana,Ohio, and Pennsylvania—did not receive fundsunder the Child Abuse Prevention and TreatmentAct, and the law did not apply to them. 36 Theremaining 46 States, the District of Columbia, andPuerto Rico receive grants under the act, and theprovisions of the amendments apply in these jurisdictions.37A sizable number of children with disabilities,those in the States that do not receive funds underthe act, are not protected by the Child AbuseAmendments. Moreover, the funding the FederalGovernment provides through the underlying act ismeager in comparison to that under other Federalprograms: in fiscal year 1988, each compliant eligiblejurisdiction received an annual base of $35,000 andan additional amount depending on the number ofresidents under the age of 18. Payments ranged froma high of $739,006 (Texas) to a low of $35,980(Commonwealth of the Northern Mariana Islands). 38As a result, the financial incentive for States tocomply is not very great. 39The Standard of CareAs noted by the six principal Senate sponsors,each word in the standard of care enacted by theamendments "was chosen with utmost care." 40Their nuances require careful analysis. 41 Under thelaw, for a State to be eligible for Federal funds, itmust have in place procedures to respond to reportsof medical neglect; the definition given to medicalneglect in the context of denial of treatment tochildren with disabilities is the meticulously negotiatedfederally required standard of care.Human Development Services, Department of Health and HumanServices (Dec. 2 & 5, 1988).37Id.38Id. The former trust territory is funded under a differentformula. Id.39In the words of Commissioner Blandina Cardenas Ramirez:"When I was in HHS, which was HEW at the time, the ChildAbuse Act was one of the ones I was responsible for. . . .[Ijtwasvery difficult to get the States to comply because you had no stickand very little carrot." Transcript, Meeting of the United StatesCommission on Civil Rights 142 (Nov. 18, 1988).40Final Rule (CAA), supra note 31, at 14879.41See generally Mumaw, The Child Abuse Amendments of 1984:The Infant Doe Amendment, 18 Akron L. Rev. 515 (1985); Bopp &Balch, The Child Abuse Amendments of 1984 and their ImplementingRegulations: A Summary, 1 Issues in L. & Med. 91 (1985).

Perhaps the best short statement of the medicalstandard of care established by the Child AbuseAmendments of 1984 is found in the SupplementalInformation HHS published with the ProposedRule:[F]irst, all such disabled infants must under all circumstancesreceive appropriate nutrition, hydration and medication.Second, all such disabled infants must be givenmedically indicated treatment. Third, there are threeexceptions to the requirement that all disabled infants mustreceive treatment, or, stated in other terms, three circumstancesin which treatment is not considered "medicallyindicated." 42The required standard of care may be divided forthe purpose of convenient analysis into nine elements:(1) a disabled (2) infant (3) with a lifethreateningcondition (4) must always be givennutrition, hydration, and medication (5) and mustnormally be given the treatment most likely tocorrect or ameliorate the condition (maximal treatment)(6) based upon the reasonable medical judgmentof the treating physician, (7) but the maximaltreatment rule is not applicable in three situations:when the child is "chronically and irreversiblycomatose," (8) when maximal treatment would befutile in saving the child's life for long, and (9) when"provision of such treatment would be virtuallyfutile in terms of the survival of the infant and thetreatment itself under such circumstances would beinhumane." 43Disabled"Disabled" is not expressly defined in the statute,its implementing regulations, or the HHS InterpretativeGuidelines. However, some light is cast upon its42Proposed Rule (CAA), supra note 30, at 48163.43The statute prohibits "withholding of medically indicatedtreatment from disabled infants with life-threatening conditions,"42 U.S.C.A. §51O3(b)(2)(K) (West Supp. 1988), and defines thekey term as follows:[T]he term "withholding of medically indicated treatment"means the failure to respond to the infant's life-threateningconditions by providing treatment (including appropriatenutrition, hydration, and medication) which, in the treatingphysician's or physicians' reasonable medical judgment, willbe most likely to be effective in ameliorating or correcting allsuch conditions, except that the term does not include thefailure to provide treatment (other than appropriate nutrition,hydration, or medication) to an infant when, in thetreating physician's or physicians' reasonable medical judgment,(A) the infant is chronically and irreversibly comatose;(B) the provision of such treatment would (i) merely prolongdying, (ii) not be effective in ameliorating or correcting all ofthe infant's life-threatening conditions, or (iii) otherwise befutile in terms of the survival of the infant; or (C) themeaning by the legislative history. The originalformulation of what became "disabled infants withlife-threatening conditions" in the statute was "infantsat risk with life-threatening congenital impairments"in the House-passed bill. 44 Concern wasexpressed that this language would be interpreted tocover only those disabled infants whose life-threateningcondition arose directly from a congenitalimpairment. 45 The enacted language clarifies thatthe 1984 amendments protect all infants with adisability, including those who develop a disabilityafter birth, from withholding of medically indicatedtreatment for any life-threatening condition, regardlessof whether the condition is related to thedisability.Model Procedures developed under a Federalgrant by the American Bar Association's Commissionon the Mentally Disabled and the NationalLegal Resource Center for Child Advocacy andProtection suggest the following meaning for theterm "disabled":"Disabled infant" means an infant with a physical ormental impairment which substantially limits or holds thereasonable prospect of in the future substantially limitingone or more major life activities. "Major life activities"include functions such as, but not limited to, breathing,seeing, hearing, walking, caring for one's self, performingmanual tasks, learning and working. 46The Model Procedures explain that this definition isbased on the definitions of "[h]andicapped person,""[p]hysical or mental impairment," and "[m]ajor lifeactivities" in the implementing regulations for section504 of the Rehabilitation Act of 1973, 47 exceptprovision of such treatment would be virtually futile in termsof the survival of the infant and the treatment itself undersuch circumstances would be inhumane.Id. §5102(3).44The House Committee report interpreted this original languageto mean that those to be protected by the law were infantswho are "born with a medically-identifiable handicapping conditionand a life-threatening condition, the latter of which requiresmedical intervention in order to increase the infant's changes [sic]of survival." H.R. Rep. No. 159, 98th Cong., 1st Sess. 2 (1983).45Bopp & Balch, supra note 41, at 107.48Nicholson, Horowitz & Parry, Model Procedures for ChildProtective Service Agencies Responding to Reports of WithholdingMedically Indicated Treatment From Disabled Infants With Life-Threatening Conditions, 10 Mental & Physical Disability L. Rep.220, 228 (1986) [hereinafter Model Procedures].47Id. These definitions are found in 45 C.F.R. §84.3 (j) (1987).They are not part of the "Baby Doe" regulations enjoined by theU.S. Supreme Court in Bowen v. Am. Hosp. Ass'n, 476 U.S. 610(1986), but are part of the preexisting 1977 regulation implement-83

that "the phrase 'or holds the reasonable prospect ofin the future substantially limiting [a major lifeactivity]' is added. This reflects the fact that infantsand young children, in the normal course of development,do not yet possess the capability of performingmany of the enumerated 'major life activities.'"48In addition to one who actually has such animpairment, the Rehabilitation Act includes onewho "is [erroneously] regarded as having such animpairment." 49 That category was incorporated inthe amended Rehabilitation Act to ensure that thosesubjected to discrimination because they are erroneouslybelieved to have a disability receive the sameprotection under the law as those who actually havea disability. If this group were not included amongthose protected by the Child Abuse Amendments,then when lifesaving treatment is denied a childbased on a mistaken prognosis of degree of disability,the very fact that the prognosis is mistaken mightprevent the denial of treatment from being overturned.InfantThose protected by the standard of care aredisabled infants with life-threatening conditions. Theterm "infants" includes, but is not limited to,children under 1 year of age. The first birthday isnot an automatic cutoff from protection under thestatute. The Principal Sponsors' Statement statedthat although the law was intended primarily toprotect infants under 12 months, it was not to beconstrued to justify discontinuance of otherwisemandated treatment at that age. 50 Accordingly, theFinal Rule provides that the law "shall not beconstrued to imply that treatment should be changedor discontinued when an infant reaches one year ofage, or to affect or limit any existing protectionsavailable under State laws regarding medical neglectof children over one year of age." 51Again tracking the Principal Sponsors' Statement,the Final Rule also provides that the standard ofcare "should be consulted thoroughly in the evaluationof any issue of medical neglect involving aninfant older than one year of age who has beencontinuously hospitalized since birth, who was bornextremely prematurely, or who has a long-termdisability." 52 The Supplemental Information HHSpublished with the Final Rule explained this definitionby noting that, as a condition of receiving childabuse and neglect grants, States must have proceduresthat protect children of all ages from medicalneglect.[A]s a general rule, issues of medical treatment for infantsover one year of age are to be considered under the lessprecisely defined, but clearly applicable, standards of"medical neglect." Issues of medical treatment for disabledinfants under one year of age with life-threatening conditionsmust be considered under the more precisely definedstandards of the definition of "withholding of medicallyindicated treatment."[But f]or certain infants over one year of age, theConference Committee believed the more precisely definedstandards of the definition of "withholding ofmedically-indicated treatment" might be more appropriateto use in considering the question of medical treatmentthan the more general standards of "medical neglect.".. .The apparent Congressional intent is to recognizethat these three categories of infants, although overone year of age, share important characteristics with thoseinfants under one year of age who are the principal focusof the statutory provision. 53It is noteworthy that the third category, those over 1year of age who have "a long-term disability," isextremely broad. Thus, it is arguable that under thelaw the more precise standards should be consultedconcerning medical treatment decisions for practiingsection 504 in general. They are based on the statutorylanguage of the Rehabilitation Act of 1973 itself. 29 U.S.C.A.§706 (West Supp. 1988).48Model Procedures, supra note 46, at 228.4929 U.S.C.A. §706(8)(B)(iii) (West Supp. 1988).50Principal Sponsors' Statement, supra note 25, at 41, 1984 U.S.Code Cong. & Admin. News at 2970." 45 C.F.R. §1340.15(b)(3)(i) (1987).MId.53Final Rule (CAA), supra note 31, at 14882.84

cally all children with disabilities, of whatever age. 54Life-Threatening ConditionsUnder the Interpretative Guidelines, a life-threateningcondition includes a condition that, in thephysician's "reasonable medical judgment, significantlyincreases the risk of the onset of complicationsthat may threaten the life of the infant." 55 Theintent of this clarification was to deal with circumstancesin which a condition does not in and of itselfthreaten life but, unless corrected, poses the dangerof a life-threatening condition developing. TheSupplementary Information published with the ProposedRule gave the example of spina bifida, inwhich the open lesion on the back does not, of itself,threaten life, but a failure to close the lesionsurgically leaves an open pathway for a life-threateninginfection. 56Nutrition, Hydration, and Medication"Appropriate" nutrition, hydration, and medicationmust always be supplied, even when one of thethree exceptions to required maximal treatmentapplies.54Presumably the term "infant" itself puts some limits on such aconstruction. Indeed, HHS suggested as much:[N]o revision is necessary to clarify that "infant" does notinclude older children and adults. The potential appropriatenessof applying the more precisely stated standards of thedefinition of "withholding of medically indicated treatment"to certain infants over one year of age is still stated, as it wasin the proposed rule and in the Conference Report, in termsof infants over one year of age. Older children and adults arenot "infants over one year of age."Id. at 14882. However, "infant" can encompass a broad gamut ofages, especially in its use as a legal term. Black's Law Dictionarydefines "infancy" as "Minority; the state of a person who is underthe age of legal majority,—at common law, twenty-one years;now, generally 18 years." Black's Law Dictionary 699 (5th ed.1979). Webster's gives a range of meanings for the term, includingnot only "a child in the first year of life" and "a child severalyears of age" but also "a person who is not of full age: minor" and"common law: a person under the age of 21." Webster's ThirdNew International Dictionary 1157 (P. Grove ed. 1986) (emphasisin original). The Oxford English Dictionary includes the definition,"A person under (legal) age; a minor. In common law, onewho has not completed his or her twenty-first year. . . ." OxfordEnglish Dictionary 1426 (1971). When the applicability of legalstandards is at stake, ambiguity of the sort that now exists in thedefinition of those covered by the Child Abuse Amendments isregrettable.5545 C.F.R. pt. 1340 App. Interpretative Guideline 2 (1987); seeBopp & Balch, supra note 41, at 107.56Proposed Rule (CAA), supra note 30, at 48163. But cf. note 96,infra.In cases concerning adults, a considerable numberof courts have rejected any distinction between theprovision of nourishment and the provision ofmaximal treatment: when it would be inappropriateto cut off the latter, they have ruled, it is equallyappropriate to terminate the former. 57 In clearcontrast to this approach, Congress plainly placeditself on the side of the dissenting judge in the 1986Massachusetts case Brophy v. New England SinaiHospital who wrote, "The process of feeding issimply not medical treatment. . . .Food and waterare basic human needs." 58 Surgeon General C.Everett Koop had testified before the Senate Committeeon Labor and Human Resources:[T]he bottom line. . .is that you must nourish the patient.Whether an infant in a hospital is denied food and care, orwhether an infant at home is denied food and care, theresult is the same; it is child abuse. 59On the Senate floor, one of the principal sponsorsof the 1984 amendments affirmed that "the words'appropriate nutrition [and] hydration'. . .are notmeant to sanction outright denial of all nutrition andhydration but are intended only to affirmativelyrequire appropriate nutrition and hydration in allcases[.] In other words, nothing in this amendment57See Corbett v. D'Alessandro, 487 So.2d 368 (Fla. App. 2Dist.), review denied, 492 So.2d 1331 (1986); In re Drabick, 245Cal. Rptr. 840 (Cal. App. 6 Dist.), cert, denied, 57 U.S.L.W. 3347(1988); Severns v. Wilmington Medical Center, 421 A.2d 1334(Del. Supr. 1980); In re Gardner, 534 A.2d 947 (Me. 1987);Brophy v. New England Sinai Hosp., 398 Mass. 417, 497 N.E.2d626 (1986); In re Hier, 18 Mass. App. 200, 464 N.E.2d 959, rev.denied, 392 Mass. 1102, 465 N.E.2d 261 (1984); In re Jobes, 108N.J. 394, 529 A.2d 434 (1987); In re Conroy, 98 N.J. 321, 486 A.2d1209 (1985); Delio v. Westchester County Medical Center, 129App. Div. 2d 1, 516 N.Y.S.2d 677 (2d Dept. 1987); In re Grant,109 Wash.2d 545, 747 P.2d 445 (1987), corrected, 757 P.2d 532(Wa. 1988); see also cases dealing with persons who expressedtheir wishes while competent: Bouvia v. County of Los Angeles,195 Cal. App. 3d 1075, 241 Cal. Rptr. 239 (2d Dist 1987); Bouviav. Superior Court, 225 Cal. Rptr. 297 (Cal. App. 2d Dist. 1986); Inre Peter, 108 N.J. 365, 529 A.2d 419 (1987); cf. Leach v. AkronGeneral Medical Center, 68 Ohio Misc. 1, 426 N.E.2d 809 (1980)(the court did not make a decision on whether nutrition andhydration could be removed); later proceeding, Estate of Leachv. Shapiro, 13 Ohio App. 3d 393, 469 N.E.2d 1047 (Summit Co.1984); contra In re Steinhaus, No. J-86-92, Amended Findings ofFact and Order at 3 (Redwood County Ct. Fam. Div. Minn. Oct.13, 1986) (court ruled that nutrition, hydration, or medicationcould not be withdrawn from an infant who was chronically andirreversibly comatose, although resuscitation could be, in light ofthe 1984 Child Abuse Amendments and conforming Minnesotalegislation).58398 Mass. 417, 497 N.E.2d 626, 640 (1986) (Nolan, J.,dissenting).59Quoted in S. Rep. No. 246, 98th Cong., 1st Sess. 10, reprinted in1984 U.S. Code Cong. & Admin. News 2918, 2927.85

allows an infant to be denied nutrition and hydration.. . ." 60 In addition, the HHS InterpretativeGuidelines affirm:[I]t should be clearly recognized that the statute iscompletely unequivocal in requiring that all infants receive"appropriate nutrition, hydration, and medication,"regardless of their condition or prognosis. 61It is difficult to contend, therefore, that under theChild Abuse Amendments it can ever be appropriateto withhold nutrition or hydration from a child witha disability who is capable of assimilating it. Instead,the legislation requires that basic sustenance beprovided in the form "appropriate" to the patient'scondition. For example, if a patient is incapable ofreceiving food and liquids orally, the patient mightmost appropriately receive nutrition and hydrationthrough such measures as intravenous fluids, nasogastricor gastric tube feedings, or hyperalimentation.62The same absolute requirement that applies tonourishment also applies to "medication." It seemsclear that the congressional intent was to requirethat pain-relieving and other palliative medicine begiven even to those children from whom maximalmedical treatment is withheld. Before the finallegislation was drafted, Dr. George Little testified:Obligations to comfort and respect a dying person remain,and infants whose lives are destined to be brief are owedwhatever enhancement and relief from suffering that canbe provided, including medication for pain and sedation,as appropriate. 6380130 Cong. Rec. S9322 (daily ed. July 26, 1984) (Colloquybetween Senators Helms and Hatch). The Principal Sponsors'Statement said: "[T]he six principal sponsors of this compromisemeasure. . .[intend] that this statement. . .be the definitive legislativehistory in the Senate on it. Any remarks of individualSenators, including the principal sponsors, on this legislationexpress only their personal views and do not, therefore, constituteauthoritative interpretation or explanation of the measure." 130Cong. Rec. S9319 (daily ed. July 26, 1984). However, theinterpretation of Senator Hatch was never challenged by anyother sponsor and appears to parallel the unequivocal language ofthe statute itself. It is useful primarily as an aid in understandingthe importance attached to this aspect of the legislation at thetime of passage.8145 C.F.R. pt. 1340 App. Interpretative Guideline 10 (1987).62Major disability organizations strongly oppose starvation ordehydration of people with disabilities. For example, the Associationfor Retarded Citizens of the United States, noting that"debate is currently taking place concerning the appropriatenessof withdrawing food and fluids from some persons labeled'comatose' or 'in a permanent vegetative state'" and recognizingthat persons so labeled "may appear to share many characteristicswith some persons labeled 'profoundly mentally retarded'"resolved that the group "opposes the cessation of nutrition and/orThe Principles of Treatment adopted by medicaland disability groups articulated a similar baselinestandard of care:It is ethically and legally justified to withhold medical orsurgical procedures which are clearly futile and will onlyprolong the act of dying. However, supportive careshould be provided, including sustenance as medicallyindicated and relief of pain and suffering. The needs of thedying person should be respected. 64In the case of In re Steinhaus, a Minnesota courtheld that antibiotics to deal with infection areincluded in the required medication. 65Treatment Most Likely to Be Effective inAmeliorating or Correcting All Life-ThreateningConditionsThe centerpiece of the Child Abuse Amendments'standard of care is found in this phrase. It is the carethat must be provided to all children covered by thelaw unless one of the three exceptions to bediscussed below applies.The history of the wording is instructive. Soonafter Senate negotiations began on the standard ofcare, staff of the Senate Committee on Labor andHuman Resources suggested a definition for the"medically indicated treatment" to be required thatsought to incorporate the nondiscrimination approachof section 504. It required "treatment whichwould normally be provided to infants withoutregard to the presence of disabling conditions andincludes treatment specifically designed to amelioratea disabling condition." 66 Later drafts alsohydration for the purpose of hastening or causing the death ofpersons with mental retardation." ARC Resolution on Cessation ofNutrition and/or Hydration, 3 Issues in L. & Med. 313 (1987)(resolution adopted Oct. 25, 1986). Similarly, the Association forPersons with Severe Handicaps adopted a resolution stating thatthe group "strongly opposes any cessation of nutrition andhydration for people who are incapacitated. . . ." TASH Resolutionon Nutrition and Hydration, 3 Issues in L. & Med. 315 (1987)(resolution adopted Nov. 15, 1986).63Quoted in S. Rep. No. 246, 98th Cong., 1st Sess. 10, reprinted in1984 U.S. Code Cong. & Admin. News 2918, 2927.84Principles of Treatment, supra note 21, at 559.65In re Steinhaus, No. J-86-92, slip op. at 10 (Minn. RedwoodCounty Ct., Juv. Div. Sept. 11, 1986), reprinted in Order in theSteinhaus Case, 2 Issues in L. & Med. 241, 246-47 (1986).88Gerry & Nimz, The Federal Role in Protecting Babies Doe, 2Issues in L. & Med. 339, 345 (1987), quoting Senate Labor andHuman Resources Staff Discussion Draft of Proposed Amendmentsto S. 1003 (May 18, 1984). An earlier draft from Sen.Edward Kennedy's staff would have required "that all suchnewborns be provided treatment provided to other similarlysituated children without congenital impairments that is necessaryto correct or ameliorate a life-threatening condition, relief fromsuffering including feeding, and medication for pain and sedation86

incorporated the nondiscrimination approach withvarious modifications.When face-to-face negotiations among advocacygroups began, however, medical groups insteadproposed language requiring "medical or surgicaltreatment, including treatment specifically designedto ameliorate a disabling condition, when suchfailure is clearly contrary to the best interests of theinfant." 67 The "best interests" language was rejectedbecause it would have allowed consideration ofprojected quality of life, 68 but the approach ofrequiring specifically defined treatment, instead ofsimply employing the nondiscrimination or equalprotection approach of the earlier drafts, was retained.Further negotiations resulted in the languageused in the statute as adopted: "'withholding ofmedically indicated treatment' means the failure torespond to the infant's life-threatening conditions byproviding treatment (including appropriate nutrition,hydration, and medication) which in the treatingphysician's or physicians' reasonable medicaljudgment, will be most likely to be effective inameliorating or correcting all such conditions." 69This definition creates a high standard of care—indeed, a higher standard of care than would equalprotection language alone. Children covered by thelaw must be provided the treatment "most likely tobe effective," not just the level of treatment thatwould be provided to their nondisabled counterparts.This places a responsibility on physicians tobecome knowledgeable about and employ the bestavailable treatment rather than simply to avoiddiscriminating on the basis of disability.The Interpretative Guidelines issued by the Departmentof Health and Human Services contain anumber of clarifications of the scope of the standardof care. The Department emphasized:as appropriate." Gerry & Nimz, supra, at 345, quoting SecondDraft of Proposed Amendments to S. 1003 from Sen. EdwardKennedy's Staff (late April 1984).67Gerry & Nimz, supra note 66, at 347, quoting Memorandum toStaff/Organizations re S. 1003 from Susanne Martinez (June 19,1984).68Gerry & Nimz, supra note 66, at 347.69Id. at 348. The language now appears at 42 U.S.C.A. § 5102(3)(West Supp. 1988).7045 C.F.R. pt. 1340 App. Interpretative Guideline 1 (1987).71Id., Interpretative Guideline 4.72Id., Interpretative Guideline 3.73Id., Interpretative Guideline 7. This interpretation is discussedmore fully below in the context of the futility exception.7 « 42 U.S.C.A. §5102(3) (West Supp. 1988).75In Maine Medical Center v. Houle, Civ. No. 74-145 (Me.Super. Ct., Feb. 14, 1974), reprinted in Trial Court Decision in[T]he definition's focus on the potential effectiveness oftreatment in ameliorating or correcting life-threateningconditions makes clear that it does not sanction decisionsbased on subjective opinions about the future "quality oflife" of a. . .disabled person. 70The Interpretative Guidelines stated that treatmentmeans more than a "particular medical treatmentor surgical procedure"; it refers to a "completepotential treatment plan," including "multiple medicaltreatments and/or surgical procedures over aperiod of time. . .designed to ameliorate or correcta life-threatening condition or conditions." 71 Treatmentalso includes diagnostic procedures to evaluatethe need for medical intervention, including, asappropriate, "further evaluation by, or consultationwith, a physician or physicians whose expertise isappropriate to the conditions(s) involved or furtherevaluation at a facility with specialized capabilitiesregarding the condition(s) involved. . . ," 72 Finally,if palliative treatment makes a condition moretolerable, even though the condition will not becured, that treatment is required. 73Reasonable Medical JudgmentUnder the 1984 amendments, the determination ofwhat "will be most likely to be effective in amelioratingor correcting all [life-threatening] conditions"is to be made "in the treating physician's orphysicians' reasonable medical judgment." 74 Byrequiring that the physician determine what themost effective treatment will be, the provisionavoids the problem encountered in some cases inwhich the physician determined not what would bethe treatment most likely to preserve life, butwhether the treatment would produce a child withan acceptable quality of life. 75Deference to "reasonable medical judgment" wasnot intended to authorize physician discretion toHoule Case, 2 Issues in L. & Med. 237 (1986), for example, thepediatrician for a child with disabilities who in addition had atracheoesophageal fistula testified:I feel he [the infant] has already endured much insult to hisbrain and that considering the total child, I do not believe hewill be able to function as a reasonable, normal child in latelife. I honestly believe that with the insults of the last twentyfourhours, that he will be severely both motor and mentallyretarded.Quoted in Brown & Truitt, Euthanasia and the Right to Die, 3Ohio N.U.L. Rev. 615, 633 (1976). The judge rejected thephysician's quality of life analysis, holding that "the doctor'squalitative evaluation of the value of the life to be preserved is notlegally within the scope of his expertise." Houle, slip op. at 4, 2Issues in L. & Med. at 238-39.87

avoid the explicit standards set forth in the legislation,but only to recognize the role of technicalmedical judgment in determining whether the conditionsto which the legal standards refer exist inparticular cases. 76 This distinction has been describedby Loretta Kopelman, Ph.D., Thomas Irons,M.D., and Arthur Kopelman, M.D.:[The law] only indicates that physicians are permitted touse reasonable medical judgment to determine whetherthe guidelines' conditions have been met. . . .[T]he guidelinesmust allow such appraisals by physicians if they areto be applied. In contrast, the traditional understanding ofreasonable medical judgment includes not only suchtechnical or scientific assessments but moral judgmentsabout what is in the patients' best interests. The Baby Doeguidelines do not allow doctors, nurses, review committees,or state investigators to use their own views aboutwhich exceptions constitute reasonable medical judgment.Permitted exceptions to the provision of maximal treatmentare spelled out in the rules; other behavior is definedas medical neglect. Hence, no deference is shown toreasonable medical judgment as traditionally understood—ajudgment that includes moral as well as technicalconsiderations of the proportional benefits of alternativetreatments in alleviating suffering and in prolonging life. 77While rejecting the incorporation of nonmedicalfactors into "reasonable medical judgment," the lawcreates a high standard for that judgment on thetechnical level. Testifying before the Senate Committeeon Labor and Human Services, SurgeonGeneral Koop said:The physician must know a great deal about the infant'sdisease process or disabling condition. As science andmedicine continue to evolve, this is an ever-growingresponsibility and requires that physicians must have greatknowledge about and experience with the [condition] inquestion. . . . 7876In the words of the Model Procedures developed by theAmerican Bar Association: "[T]he decision to withhold medicaltreatment or care from a disabled infant with life-threateningconditions is to be made only in terms of the statutory definition.This definition does not include nonmedical factors in the'reasonable medical judgment' used to determine 'withholding ofmedically indicated treatment.'" Model Procedures, supra note 46,at 227. The Model Procedures point out that principles oftreatment jointly adopted by medical and disability groups state:"considerations such as anticipated or actual limited potential ofan individual and present or future lack of available communityresources are irrelevant and must not determine the decisionconcerning medical care. The individual's medical conditionshould be the sole focus of the decision. These are very strictstandards." Id., quoting Principles of Treatment, supra note 21, at559.77Kopelman, Irons, & Kopelman, "Baby Doe"Regulations (letterto the editor), 319 New Eng. J. Med. 726 (1988).Accordingly, the Principal Sponsors' Statementprovided: "The reference to 'reasonable medicaljudgment' of the treating physician or physiciansmeans a medical judgment that would be made by areasonably prudent physician, knowledgeable aboutthe case and the treatment possibilities with respectto the medical conditions involved." 79 HHS adoptedthis definition verbatim in the Final Rule. 80 Forthe physician to be knowledgeable about the caseand treatment possibilities, information which surpassesthat with which the ordinary physician isfamiliar may be required. Reasonable judgments inlife and death situations often will decree consultationand further evaluation. 81 Nevertheless, as theAmerican Bar Association's Model Procedurespointed out: "This standard of care is used widely inother treatment contexts, and only its application tothe issue of withholding of medically indicatedtreatment from disabled infants with life-threateningconditions is new." 82Exceptions to Providing TreatmentThe Child Abuse Amendments create three exceptionsto the requirement to provide the treatmentmost likely to correct or ameliorate a child's lifethreateningconditions (maximal treatment)—although"appropriate nutrition, hydration, and medication"must always be provided.The Comatose ExceptionThe first exception applies when a child is"chronically and irreversibly comatose." 83 Themedical groups originally proposed an exception tocover those who are "permanently and completelyunconscious." 84 "Unconscious" is defined as "insensible"or "not conscious." 85 The disability rightsgroups rejected this proposal as too broad and78Quoted in S. Rep. No. 246, 98th Cong., 1st Sess. 10, reprinted in1984 U.S. Code Cong. & Admin. News 2918, 2927.79Principal Sponsors' Statement, supra note 25, at 41, 1984 U.S.Code Cong. & Admin. News at 2970.8045 C.F.R. §1340.15(b)(3)(ii) (1987).81See supra note 72 and accompanying text.82Model Procedures, supra note 46, at 227. The Model Proceduresparaphrase W. Prosser, Handbook of the Law of Torts § 32,at 161 (1982): "[P]hysicians who undertake work requiring specialskill are required to possess a minimum standard of specialknowledge and ability." Model Procedures, supra note 46, at 246n.28.8342 U.S.C.A. §5102(3)(A) (West Supp. 1988).84Gerry & Nimz, supra note 66, at 349, quoting ProposedAmendment to S.1003 by Medical Groups (June 25, 1984).85Stedman's Medical Dictionary 1512 (24th ed. 1982).88

proposed the more restrictive language now in thelaw. 86 "Coma" has a precise meaning:Coma was defined operationally as a sleeplike, unarousable,unresponsive state in which the patient shows noawareness of self or environment. Such patients (1) do notopen their eyes either spontaneously or in response to anyverbal stimulus, (2) utter no comprehensible words, and(3) neither obey commands nor move their extremitiesappropriately to localize or to resist noxious stimuli. 87In the 1986 Minnesota case In re Steinhaus, thecourt ruled that although the statute makes anexception for those who are "chronically and irreversiblycomatose," it makes no exception for thosein a "persistent vegetative state." 88 In an article onpersistent vegetative state, Dr. Philip Hansotiawrote that, in contrast to those in a coma:Patients in the PVS [persistent vegetative state] areawake without being aware. They open their eyes andlook about randomly but do not follow objects or respondto verbal command. The eyes open and blink spontaneouslyand to menace but are unattentive. Patients may sleep attimes. Chewing and bruxism [grinding of teeth] arecommon, and a grasp reflex is often present. 89The Futility ExceptionThe second exception applies when:[T]he provision of such treatment would (i) merelyprolong dying, (ii) not be effective in ameliorating orcorrecting all of the infant's life threatening conditions, or(iii) otherwise be futile in terms of the survival of theinfant. . . . 90When life is inevitably ebbing away, and dyingcannot be halted but only prolonged, the interest inpreserving life can no longer be satisfied. Thisexception was designed to ensure that in suchcircumstances there would be no requirement thatlife-prolonging treatment be employed to eke life outfor a brief period longer. The HHS InterpretativeGuidelines state that the exception does not "applywhere many years of life will result from theprovision of treatment, or where the prognosis is notfor death in the near future, but rather the moredistant future." 91In its proposed rule, HHS used the word "imminent"to define the period within which death mustbe expected in order to make the exception applicable.92 However, the Senate sponsors of the compromiselegislation wrote a joint letter objecting to theterm:In the negotiations leading to the final language, therewas much discussion about whether or not to include theword "imminent" in the statutory definition. It becameapparent that "imminent" would create undue confusionboth because it was ambiguous and because the expectedtime of death cannot be predicted with precision. Adecision was made, therefore, not to include "imminent,"and we urge that it be dropped in the regulations as well. 93Accordingly, in the Interpretative Guidelines accompanyingthe Final Rule, HHS retracted the term"imminent" and indicated that the precise determinationof what is a "near" versus a "more distant"future was left to reasonable medical judgment. 94The second category of the second exceptionspecifically addresses circumstances in which deathwill inevitably occur shortly even though some lifethreateningconditions could be cured. As two legalcommentators have noted:In HHS' view, this [exception] was intended to apply tosituations in which an infant suffers from several lifethreateningconditions, some of which can be treatedeffectively, but at least one of which cannot. If and only ifthe untreatable condition will produce death in the near86Gerry & Nimz, supra note 66, at 349.87Hansotia, Persistent Vegetative State, 42 Arch. Neurol. 1048,1048 (1985) (emphasis in original).88Transcript at 73, In re Steinhaus, No. J-86-92 (Minn.Redwood County Ct., Fam. Div., Oct. 6, 1986); In re Steinhaus,No. J-86-92, slip op. at 11-12 (Minn. Redwood County Ct., Juv.Div. Sept. 11, 1986), reprinted in Order in the Steinhaus Case, 2Issues in L. & Med. 241, 247-48 (1986). The court later ruled thatthe child was in fact chronically and irreversibly comatose. In reSteinhaus, No. J-86-92, Amended Findings of Fact and Order 3(Minn. Redwood County Ct., Fam. Div. Oct. 13, 1986).Lance Steinhaus received serious injuries when just over a monthold and became unconscious. After a decision was made not togive him antibiotics and to place a "Do Not Resuscitate" order onhis medical chart, the county welfare department petitioned thecourt to prevent the withholding of antibiotics. After the courtruled that he was chronically and irreversibly comatose and thattreatment other than nutrition, hydration, and medication couldlegally be withheld, the "Do Not Resuscitate" order wasrestored. Agreement Will Allow Comatose Baby to Die, The Sun,Oct. 25, 1986, at A10. He subsequently died. Baby Who WasSubject of Right-to-Live Case Dies, Minneapolis Star and Tribune,Feb. 11, 1987, at 1A, col. 1.89Hansotia, supra note 87, at 1048. See also Levy, The ComatosePatient, in I The Clinical Neurosciences 955, 956 (R. Rosenberged. 1983):The patient in the vegetative state appears awake but shows noevidence of content, either confused or appropriate. He oftenhas sleep-wake cycles but cannot demonstrate an awarenesseither of himself or his environment.Id. (emphasis in original) (footnote omitted).9042 U.S.C.A. §5102(3)(B) (West Supp. 1988).9192939445 C.F.R. pt. 1340 App. Interpretative Guideline 5 (1987).Proposed Rule (CAA), supra note 30, at 48164, 48167.Quoted in Final Rule (CAA), supra note 31, at 14879.45 C.F.R. pt. 1340 App. Interpretative Guideline 5 (1987).89

(as opposed to the far) future, then treatment need not beprovided for the other life-threatening conditions whichtheoretically could be treated. In other words, if the childis going to die shortly anyway from ailment A, it makes nosense (and is not required) to treat ailments B, C, or D. If,on the other hand, the child is terminally ill from ailmentA, but will not die from it for some time, this exceptionprovides no excuse for failing to treat the immediatethreats to life from ailments B, C, or D. 95HHS also interpreted the law to require thatpalliative care, including treatment that goes beyondmedication, 96 must be provided even when lifesavingtreatment would not be effective:If. . .palliative treatment will ameliorate the infant's overallcondition, taking all individual conditions into account,even though it would not ameliorate or correct eachcondition, then this palliative treatment is medicallyindicated. 97The third category in the second exception appliesif treatment would "otherwise be futile in terms ofthe survival of the infant." This category is simply a"cover all bases" logical extension of the other twocategories, each of which describes circumstances inwhich treatment would be futile. The language,however, carefully ties futility to the "survival" ofthe infant, emphasizing that only the inevitability ofdeath despite treatment, and not the persistence ofdisability despite treatment, renders the treatmentlegally futile. 98The Virtually Futile and Inhumane ExceptionThe third exception reads:[T]he provision of such treatment would be virtually futilein terms of the survival of the infant and the treatmentitself under such circumstances would be inhumane. 99The exception is phrased in the conjunctive: toremove the maximal treatment mandate, both of tworequirements must be met.The first of the requirements is that the treatmentbe "virtually futile." The distinction between "futile"as used in the second exception and "virtuallyfutile" as used in the third exception lies in thedegree of probability or uncertainty in determiningthe futility of the treatment. Under the InterpretativeGuidelines, the term "virtually futile" is understoodto mean that treatment is "highly unlikely toprevent death in the near future." 100The second requirement of this third exception isthat the treatment itself be inhumane. The InterpretativeGuidelines state that this is true only in thepresence of "significant medical contraindicationsand/or significant pain and suffering for the infantthat clearly outweigh the very slight potentialbenefit of the treatment for an infant highly unlikelyto survive." 101The Interpretative Guidelines note that althoughthe initial two exceptions concerned themselveswith the expected results of treatment, the thirdexception focused on the process of possible treatment:It recognizes that in the exercise of reasonable medicaljudgment, there are situations where, although there issome slight chance that the treatment will be beneficial tothe patient (the potential treatment is considered virtuallyfutile, rather than futile), the potential benefit is sooutweighed by negative factors relating to the process ofthe treatment itself that, under the circumstances, it wouldbe inhumane to subject the patient to the treatment. 10295Bopp & Balch, supra note 41, at 112-13. See 45 C.F.R. pt. 1340App. Interpretative Guideline 6 (1987).96At the time it published the Proposed Rule, HHS gave theexample of a child with an uncorrectable and life-threateningheart problem who also had an imperforate anus; in such asituation, the absence of effective treatment for the heart problemwould not relieve physicians of the responsibility of providing acolostomy to relieve "the severe pain associated with theintestinal obstruction caused by the imperforate anus." ProposedRule (CAA), supra note 30, at 48164. However, when HHS issuedthe Final Rule, it noted that commenters had "stated that,depending on medical complications, exact prognosis, relationshipsto other conditions, and other factors, the treatmentEnforcement of the Child AbuseAmendmentsWhile the 1984 amendments were in the processof negotiation under the auspices of Senate staff,Senator Kennedy's office suggested an approach toenforcement that would have "required states, as acondition of continued receipt of federal child abusefunds, to create an ombudsman program for thepurpose of protecting and advocating for the interestsof newborn infants with life-threatening congensuggested.. .might not necessarily be the treatment that reasonablemedical judgment would decide would be most likely to beeffective. In response to these comments, specific diagnosticexamples have not been included in this discussion. . . ." 45C.F.R. pt. 1340 App. Interpretative Guideline 7 (1987).9745 C.F.R. pt. 1340 App. Interpretative Guideline 7 (1987)(emphasis in original).98See Gerry and Nimz, supra note 66, at 349.9910010110242 U.S.C.A. 5102(3)(C) (West Supp. 1988).45 C.F.R. pt. 1340 App. Interpretative Guideline 8 (1987).45 C.F.R. pt. 1340 App. Interpretative Guideline 9 (1987).Id. (emphasis in original).90

ital impairments and infants or children with specialneeds." 103 This was rejected by the medical groupson the ground that it would lead to undue intrusion.Instead, the American Academy of Pediatrics madea counterproposal giving enforcement authority toState child protective services agencies, the frameworkthat was eventually adopted. 104 Under thestatute as enacted, within 1 year after the act becamelaw, such agencies desiring to receive Federal fundswould have to:have in place for the purpose of responding to thereporting of medical neglect (including instances of withholdingof medically indicated treatment from disabledinfants with life-threatening conditions), procedures orprograms, or both (within the State child protectiveservices system), to provide for (i) coordination andconsultation with individuals designated by and withinappropriate health-care facilities, (ii) prompt notificationby individuals designated by and within appropriatehealth-care facilities of cases of suspected medical neglect(including instances of withholding of medically indicatedtreatment from disabled infants with life-threatening conditions),and (iii) authority, under State law, for the Statechild protective service system to pursue any legalremedies, including the authority to initiate legal proceedingsin a court of competent jurisdiction, as may benecessary to prevent the withholding of medically indicatedtreatment from disabled infants with life-threateningconditions. 105The Principal Sponsors' Statement of the Senatesponsors adopted by the conference committeenoted that preexisting law required recipient Stateagencies "to provide certain mechanisms for thereporting of abuse or neglect cases. The samereporting mechanisms and standards set forth in theAct and existing regulations would be applicable tothe reporting of cases of medical neglect. . . ." 106Those preexisting regulations establish a Stateduty to create classes of individuals legally requiredto report both known and suspected cases of childabuse and neglect, a State duty to permit all otherpersons to submit such reports, 107 and a State dutyto investigate promptly to substantiate the accuracyof all such reports. 108The HHS Final Rule implementing the ChildAbuse Amendments is largely built on these require-103Gerry & Nimz, supra note 66, at 344.104Id.10542 U.S.C.A. §51O3(b)(2)(K) (West Supp. 1988).1M H.R. Conf. Rep. No. 1038, 98th Cong., 2d Sess. 41, reprintedin 1984 U.S. Code Cong. & Admin. News 2947, 2970. It madespecial mention of the requirement that a guardian ad litem beappointed for children in the course of all judicial proceedingsrelating to abuse or neglect. Id.ments. To ensure that health care facilities takeseriously their obligation to designate individualswith the specific responsibility to report known orsuspected withholding of medically indicated treatmentand to serve as a point of contact andcoordination during investigations, it mandates thatState agencies contact each health care facilityannually to identify the names, titles, and telephonenumbers of the designated individuals. 109 It requiresthat States demonstrate, through statute, regulation,or the opinion of the State attorney general, thattheir State laws give adequate authority to enablethem to prevent violations of the federally definedstandard of care. 110Perhaps the most important feature of the FinalRule pertaining to enforcement was its emphasis onproviding the mechanisms necessary to ensure anindependent medical evaluation of circumstancesthat give rise to a report of suspected medicalneglect. As the American Bar Association's ModelProcedures point out: "The judgment of physician(s)who specialize in the medical problems and disablingconditions of newborn infants is necessary to assesswhether reasonable medical judgment was employedin a decision to withhold medical treatmentor care from a disabled infant." 111 A social workeror other child protective services specialist is rarelyequipped to make an accurate judgment aboutwhether legally required treatment is being withheld.Short of outright admissions by medical staff,detection of such withholding normally requires aspecialist's knowledge of the appropriate level ofcare for the life-threatening condition, so as to judgewhether the treatment being accorded by the healthcare facility falls short of it. Furthermore, a judgmentabout what care is appropriate necessarilydepends on an accurate diagnosis of the child'scondition. Without the assistance of a consultantqualified to make an independent evaluation of thatcondition, a child protective services worker wouldin most cases be reduced to relying solely upon theunconfirmed representations of the very physicianswhose conduct is the subject of investigation. 1120745 C.F.R. §1340.14(c) (1987).08Id. §1340.14(d).45 C.F.R. §1340.15(c)(3) (1987).Id. §1340.15(d)(2)(ii) (1987).Model Procedures, supra note 46, at 229.The analogy in a more "traditional" child abuse case, one inwhich someone reports that a neighboring child has been severelybeaten by her parents, would be a child protective services91

It was recognized, therefore, that the key toeffective enforcement would be resort to physicianswho were at the same time specialists in the field oftreatment alleged to have been denied and personscommitted to the standards of treatment embodiedin the Federal law. HHS sought to provide them thekey tools—access to medical records and the abilityto conduct an independent medical examination—necessary to enable them to obtain the informationessential to make an independent evaluation. Underthis approach, there is no need to find a "smokinggun" in the form of proof that treatment has beenintentionally denied in order to cause the child'sdeath. It need only be determined, by the consultingexpert or experts, that in order to meet the federallydefined standard of care, the child needs treatmentshe or he is not getting.worker restricted to asking the parents to describe the child'swounds, without being able to look at the child.Accordingly, the Final Rule required that Stateagencies specify procedures they will employ toobtain access to medical records when necessary foran appropriate investigation of a report of medicalneglect, and a court order for an independentmedical examination when necessary for an appropriateresolution of such a report. 113ConclusionThe Child Abuse Amendments of 1984, theproduct of considerable debate and negotiation, setout a detailed and, for the most part, unambiguousbut nuanced standard of care which States thatreceive Federal funds for their child abuse andneglect programs must enforce among health carefacilities. If adequately enforced, the law wouldprovide strong protection for many children withdisabilities against denial of lifesaving treatment.11345 C.F.R. §1340.15(c)(4) (1987). The regulation permittedStates to show that they may obtain an independent medicalexamination in some manner other than with a court order.92

Chapter 8Constitutional IssuesSince the record developed by the Commissiondemonstrates that persons with disabilities have beendenied necessary medical care on the basis of theirdisabilities, 1 and that neither Federal, State, norlocal protective agencies make it a practice tointervene on their behalf, 2 two constitutional questionsarise:First: whether constitutional rights are at stake indisputes over the denial of medical treatment fornewborns and other persons with disabilities; andSecond: if so, whether there exist under State andFederal law adequate substantive and proceduralsafeguards (including a forum) to protect thoserights.Such an inquiry can be obscured by the technicalnature of the medical decisionmaking process, thedeference the law gives to parental choices allegedto be in the best interests of their children, and thepower of the States over matters of family law.Nonetheless, it is important to note that the factualsetting of denial of treatment cases is critical to ananalysis of their constitutional aspects. Based on the1See chaps. 1, 9.2See chaps. 10-12. See also United States v. Univ. Hosp., 729F.2d 144 (2d Cir. 1984); Am. Academy of Pediatrics v. Heckler,561 F.Supp. 395 (D.D.C. 1983); In re Infant Doe, No. GU8204-00(Cir. Ct. Monroe County, Ind. Apr. 12, 1982), affdsub nom. Stateof Indiana on Relation of Infant Doe by Guardian, No. 482 SI39(Ind. S.Ct, May 27, 1982), No. 482 S.140 (Ind. S.Ct. Apr. 26,1983), cert, denied, 464 U.S. 961 (1983).3That the factual record is significant to a complete understandingof both the statutory and constitutional policy issues whichcan arise in denial of treatment cases is illustrated by the U.S.Supreme Court's ruling in Bowen v. Am. Hosp. Ass'n, 476 U.S.610 (1986). Justice Stevens' opinion for the plurality rested itsholding that section 504 of the Rehabilitation Act of 1973 did notapply to denial of treatment cases, where parental consent wasrefused, where there was a lack of a clear factual record thatrecord developed during the Commission's inquiry,at least four basic types of denial of treatment casescan be identified: 31. Cases where the denial of treatment reflectsthe medical judgment of the attending physiciansthat the treatment would not be useful to thepatient, and that the parents or guardians havegiven a fully informed consent to the denial oftreatment;2. cases where medical professionals presentinadequate or prejudiced information concerningthe future quality of life of individuals with theparticular disability in question, and the refusal bythe parent or guardian to consent to otherwiseuseful treatment is based on such information;3. cases where medical and other qualified professionalsmake a full and fair presentation of thechild's present medical needs, the limitationsassociated with the disability, and the rehabilitationand support services resources available, butthe parents refuse consent based on either theirown view of the future quality of life of individudiscriminationon the basis of handicap influenced the parentalchoice to refuse consent. 476 U.S. at 636 & n.22 (Stevens, J.,plurality opinion). See also, 476 U.S. at 653-54 & n.7, 656-63(White, J., dissenting). Given the breadth of the injunction thatlimits the power of the Secretary of Heath and Human Servicesto intervene under section 504 on behalf of infants with disabilities,it is arguable that Bowen itself is a legal development thatmay have the effect of leaving unregulated acts which do, in fact,"constitute] discrimination or a denial of equal protection of thelaws under the Constitution, because of race, color, religion, sex,age, handicap, or national origin or in the administration ofjustice." 42 U.S.C.A. § 1975c(2) (1988). See Am. Hosp. Ass'n v.Heckler, 585 F.Supp. 541 (S.D.N.Y., 1984), affd in reliance onUnited States v. Univ. Hosp., 729 F.2d 144 (2d. Cir, 1984), 794F.2d 676 (2d. Cir, 1984). For a full discussion of the Bowen casesee chap. 6.93

als with the particular disability in question ortheir view of the burden that caring for such achild will place on them or their family; and4. cases where agencies charged with the protectionof children or persons with disabilities havereason to believe that a disability, rather than theneed for and usefulness of treatment, was thedeterminative factor in the decision to denytreatment, and the agency declines to intervene,even though it would do so if the child in questiondid not have a disability.Part one of this chapter, therefore, examines thenature and extent of the equal protection andprocedural due process constitutional rights at stakein the types of denial of treatment cases raisedabove. Part two examines the interests and rights ofparents as potential substantive limitations on therecognition and protection of such rights, and partthree discusses the ability and willingness of courtsto protect the rights of newborns denied treatmenton the basis of disability. The chapter concludeswith a discussion of whether or not there is a needfor Federal legislative, administrative, or judicialintervention on behalf of newborn children who aredenied treatment on the basis of disability.The Constitutional Rights of NewbornChildren with DisabilitiesThe constitutional right of newborn children todue process and equal protection of the law is notopen to question. Section 1 of the 14th amendmentprovides in relevant part that:All persons born or naturalized in the United States andsubject to the jurisdiction thereof, are citizens of theUnited States and of the State wherein they reside. NoState shall make or enforce any law which shall abridgethe privileges or immunities of citizens of the UnitedStates; nor shall any State deprive any person of life,liberty, or property, without due process of law; nor denyto any person within its jurisdiction the equal protection ofthe laws. 4As persons who are also citizens, persons withdisabilities, including newborn children, 5 are entitledto the same legal protection of their lives,physical integrity, and procedural due process rightsas infants, children, and adults without disabilities. 6Equal Protection of the LawsThe legal standards governing discrimination onthe basis of handicap or disability are undergoingrapid development as developments in vocationalrehabilitation, biotechnology, and medicine influencechanges in public attitudes toward those withdisabilities. 7 Federal law requires, among otherthings, that any federally funded program or activitymust refrain from discriminating against an "otherwisequalified" individual "solely on the basis of hishandicap" 8 and that children with disabilities mustbe offered equal educational opportunities. 9 Many4U.S. CONST, amend. XIV, § 1. Although this language appliesonly to the States, the Supreme Court has held that "[t]he federalsovereign, like the States, must govern impartially. The conceptof equal justice under law is served by the Fifth Amendment'sguarantee of due process, as well as by the Equal ProtectionClause of the Fourteenth Amendment." Hampton v. Mow SunWong, 426 U.S. 88, 100 (1976). Accord, United States Dep't ofAgriculture v. Moreno, 413 U.S. 528, 533, n. 5 (1973); Boiling v.Sharpe, 347 U.S. 497, 499 (1954).5In re Gault, 387 U.S. 1, 13 (1967) ("[W]hatever may be theirprecise impact, neither the Fourteenth Amendment nor the Bill ofRights is for adults alone."). Accord Thompson v. Oklahoma, 108S.Ct. 2687 (1988) (death penalty for minors); Goss v. Lopez, 419U.S. 565 (1975) (procedural due process). The liberty interests ofchildren are also protected, though, in some cases, to a lesserdegree than for adults. See, e.g., Hazelwood School Dist. v.Kuhlmeier, 108 S.Ct. 562 (1988); Tinker v. Des Moines SchoolDist., 393 U.S. 503 (1969); West Virginia Bd. of Educ. v.Barnette, 319 U.S. 624 (1943).6City of Cleburne v. Cleburne Living Center, 473 U.S. 432(1985) [hereinafter Cleburne Living Center].7See, e.g., Cleburne Living Center, 473 U.S. 432 (1985)(constitutional standard for discrimination against the personswith disabilities in cases involving exclusionary zoning); ConsolidatedRail Corp. v. Darrone, 465 U.S. 624 (1984) (coverage offunded programs); Alexander v. Choate, 469 U.S. 287 (1985)(application of "disparate impact" theory as a matter of law orregulation); Smith v. Robinson, 468 U.S. 992 (1984) (relationshipof the Education of the Handicapped Act, 20 U.S.C.A.§§ 1400-1485, (1982) [hereinafter cited as E.HA.] to section 504 ofthe Rehabilitation Act of 1973, 29 U.S.C.A. §794 (1982) and the14th amendment); Bd. of Educ. v. Rowley, 458 U.S. 176 (1982)(extent of rights under E.H.A.); Southeastern Community Collegev. Davis, 442 U.S. 397 (1979) (limits on reach of section 504).See also, Americans with Disabilities Act of 1988, S. 2345, 100thCong., 2d Sess.8Section 504 of the Rehabilitation Act of 1973, 29 U.S.C.A.§794 (1988) provides, in relevant part:No otherwise qualified individual with handicaps. . .shall,solely by reason of his handicap, be excluded from theparticipation in, be denied the benefits of, or be subjected todiscrimination under any program or activity receivingFederal financial assistance. . . .See Consolidated Rail Corp. v. Darrone, 465 U.S. 624 (1984)(Federal funds need not be given with the "primary objective" ofpromoting employment to subject the recipient to the requirementsof section 504). The definition of the term "handicappedindividual" is found in 29 U.S.C.A. §7O6(8)(B) (1988): "the term'individual with handicaps' means. . .any person who (i) has aphysical or mental impairment which substantially limits one ormore of such person's major life activities, (ii) has a record of suchan impairment, or (iii) is regarded as having such an impairment."94

State and local laws provide similar protection. 10The appropriate place to begin 11 an analysis of theappropriate equal protection standard for "disability"cases is Congress' prohibition against discriminationagainst those with disabilities in federallyfunded programs, including its expression of particularconcern about medical care discriminationagainst infants with disabilities. 12In a series of cases elaborating on various Federallaws governing the rights of persons with disabilities,13 the United States Supreme Court has heldthat the intent of these laws is twofold: 14 to protectthose with disabilities from the discriminatory actsof others 15 and to eliminate what might be called"benign neglect" based on "thoughtlessness andindifference." 16 The Court has also held thatdiscrimination on the basis of disability is a violationof the equal protection clause of the 14th amendmentwhen the government is unable to demonstratethat its rationale for the challenged discriminatoryactivity is grounded in an unprejudiced evaluation ofthe differences caused by the disability itself. 1710See, e.g., Fla. Stat. Ann. §760.10 (West Supp. 1985); N. Dak.Cent. Code §§ 14-02.4-03 to 4-06, 14-02.4-08 (1981); Ohio Rev.Code §4112.02 (Page 1984); Tenn. Code Ann. §8-50-103, 104(1979). Unlike the Federal Government, the States are notconstrained by a Federal constitutional requirement that nondiscriminationprovisions relating to private sector discrimination onthe basis of disability must be tied to a funding source or somematter of Federal concern such as interstate commerce. As aresult, they may, and do, prohibit private sector discriminationdirectly.11This is not to say that constitutional and legislative standardsare the same, but merely to point out that, whatever theconstitutional standard of protection, Congress retains the abilityto mandate a minimum level of additional protection which is nototherwise inconsistent with the Constitution. U.S. CONST, amend.XIV, §5. Katzenbach v. Morgan, 384 U.S. 641, 651-52 n.10(1966).18Child Abuse Amendments of 1984, 42 U.S.C.A. §§5101-5103(Supp. 1988). For a full discussion of the law, see chap. 7.13See cases cited supra note 7.14That the congressional concern was for both the social welfareand the civil rights of persons with disabilities is criticallyimportant to an understanding of the Supreme Court's approachto disability cases, and to the approach taken by this Commissionin this report and others. See U.S. Commission on Civil Rights,Accommodating the Spectrum of Individual Abilities (1983).There is an inherent relationship between civil rights law andsocial welfare policy, yet they address separate problems. Personsin need of material or economic assistance often need the legalprotection afforded by the civil rights laws. Proof of materialneed, however, is not necessary to state a claim under the civilrights laws.15See Alexander v. Choate, 469 U.S. 287 (1985) (holding thatsection 504 would clearly cover cases of intentional discriminationagainst the persons with disabilities, but refusing to holdeither that the regulations promulgated under the statute areCleburne v. Cleburne Living CenterIn City of Cleburne v. Cleburne Living Center, aunanimous 19 Supreme Court ruled that the equalprotection clause forbids exclusionary zoning thatwould make it impossible for people with mentalretardation to live in a neighborhood group homeenvironment. 20 The Court began its discussion ofthe constitutional standards that govern legislationhaving an adverse impact on the mentally retardedwith a review of the general standards that areapplicable to cases raising equal protection claims,and held that mental retardation is not a "quasisuspectclassification calling for a more exactingstandard of judicial review than is normally accordedeconomic and social legislation." 21 Instead, theCourt chose a minimum rationality standard, andhighlighted the obvious relationship between thesocial and constitutional concerns that motivated itschoice:First. . .those who are mentally retarded have a reducedability to cope with and function in the everydayworld. . . .[T]hey range from those whose disability isnot immediately evident to those who must be constantlylimited to such cases or that the statute necessarily comprehendsthe use of "disparate impact" analysis); Consolidated Rail Corp.v. Darrone, 465 U.S. 624 (1984) (coverage of funded programs);Smith v. Robinson, 468 U.S. 992 (1984).18Alexander v. Choate, 469 U.S. 287, 295 & nn. 12-16. (1985).The sources cited in the Court's footnotes make it clear that abright line was drawn between "thoughtlessness and indifference"which, though neglecting the needs of the persons withdisabilities, might be considered "benign" in that they are notintentional or "invidious":To be sure, well-catalogued instances of invidious discriminationagainst the handicapped do exist. See, e.g., United StatesCommission on Civil Rights, Accommodating the Spectrumof Individual Abilities, Ch. 2 (1983); Wegner, The AntidiscriminationModel Reconsidered: Ensuring Equal OpportunityWithout Respect to Handicap Under Section 504 of theRehabilitation Act of 1973, 69 Cornell L. Rev. 401, 403 n.2(1984).469 U.S. at 295, n. 12. Intentional neglect of the needs of personswith disabilities—such as denying food and water (nutrition andhydration) or necessary medical care because the disability isalleged to cause a diminished quality of life—are not "benign."» Cleburne Living Center, 473 U.S. 432 (1985).18473 U.S. 432 (1985).19Justice Stevens and Chief Justice Burger joined the opinion ofthe Court, but also filed a concurring opinion advocatinga new single tier standard for equal protection analysis.Justices Brennan and Marshall filed an opinion concurringin part and dissenting in part, which arguesthat the proper standard for disability cases is heightenedscrutiny, and that the ordinance should have been declaredinvalid on its face.20See chap. 4.21Cleburne Living Center, 473 U.S. at 442. For a generaldiscussion of these standards, see supra note 7.95

cared for. They are thus different, immutably so, inrelevant respects, and the States' interest in dealing withand providing for them is plainly a legitimate one. Howthis large and diversified group is to be treated under thelaw is a difficult and often a technical matter, very much atask for legislators guided by qualified professionals andnot by the perhaps ill-informed opinions of the judiciary.Heightened scrutiny inevitably involves substantive judgmentsabout legislative decisions, and we doubt that thepredicate for such judicial oversight is present where theclassification deals with mental retardation. . . , 22Because mental retardation is a characteristic that thegovernment may legitimately take into account in a widerange of decisions, and because both state and federalgovernments have recently committed themselves toassisting the retarded, we will not presume that any givenlegislative action, even one that disadvantages retardedindividuals, is rooted in considerations that the Constitutionwill not tolerate. 23Although the practical effect of the Court'srefusal to deal with equal protection cases involvingpersons with disabilities at a heightened level ofscrutiny is arguably to make it more difficult tochallenge State or Federal policies that are allegedto be discriminatory, the majority opinion by JusticeWhite makes it clear that "refusal to recognize theretarded as a quasi-suspect class does not leave thementirely unprotected from invidious discrimination."24 Even though the Court refused to "presumethat any given legislative action, [including] one thatdisadvantages retarded individuals, is rooted inconsiderations that the Constitution will not tolerate,"25 the standard actually applied in Cleburne isquite similar to that applied in gender cases: itexplicitly requires lower courts to focus on the realreasons behind the challenged unequal treatment and22Cleburne Living Center, 473 U.S. at 442-43 (footnotesomitted).23Id. at 446 (footnotes omitted).24Id. at 446. Justice White's opinion for the Court was joined byChief Justice Burger and Justices Powell, O'Connor, Rehnquist,and Stevens.The lower court opinions in Cleburne Living Center areinstructive as to the operation of the standards of review inpractice. The district court was criticized by the Fifth Circuit forusing a "minimum rationality" test to uphold the ordinance, bothon its face and as applied. The Court of Appeals for the FifthCircuit held that the proper equal protection test was "heightenedscrutiny," and ruled that the ordinance was invalid, both on itsface and as applied. 726 F.2d 191 (1984).25Cleburne Living Center, 473 U.S. at 446.26The area in question was zoned "R-3" (apartment housedistrict) and the ordinance permitted the following uses:1. Any use permitted in District R-2.2. Apartment houses, or mulitple dwellings.3. Boarding and lodging houses.96to analyze whether the discriminatory policy isactually related to a legitimate government purpose.The Supreme Court undertook such an analysis inCleburne and found that the zoning ordinance 26 wasinvalid under the equal protection clause. It foundthat the reason for the discriminatory treatment was"the negative attitude of the majority of the propertyowners located within 200 feet of the. . .facility,as well as the fears of elderly residents of theneighborhood." 27 In short: "an irrational prejudiceagainst the mentally retarded." 28Denial of Treatment to Newborn Children withDisabilitiesThe record of the Commission's inquiry leaves nodoubt that newborn children have been denied food,water, and medical treatment solely because they areperceived to be disabled. It is undisputed that thepurpose of the denial of treatment was to end thelives of these children because of social, economic,or eugenic factors unrelated to the child's medicalneed or ability to benefit from the proposed treatment.In some cases, the discriminatory denial oftreatment was based on ignorance and false stereotypesabout the "quality of life" of persons withdisabilities, and in others, about the nature of theparticular disability the child would have if he or shewere permitted to survive. The testimony of Dr.Walter Owens, the physician who treated the originalBaby Doe in Bloomington, Indiana, 29 illustratesthe point.COMMISSIONER DESTRO. . . .How was the issue ofrecommending [a] course of treatment posed to theparents?4. Fraternity or sorority houses and dormitories.5. Apartment hotels.6. Hospitals, sanitariums, nursing homes or homes forconvalescents or aged, other than for the insane or feeblemindedor alcoholics or drug addicts.7. Private clubs or fraternal orders, except those whosechief activity is carried on as a business.8. Philanthropic or eleemosynary institutions, other thanpenal institutions.9. Accessory uses customarily incident to any of the aboveuses.Cleburne Living Center, 473 U.S. at 436 n.3.27Id. at 448.28Id. at 450.29In re Infant Doe, No. GU82O4-OO (Cir. Ct. Monroe County,Ind. Apr. 12, 1982), affd sub nom. State of Indiana on Relation ofInfant Doe by Guardian, No. 482 SI39 (Ind. S.Ct. May 27, 1982),No. 482 S.140 (Ind. S.Ct. Apr. 26, 1983), cert, denied, 464 U.S. 961(1983).

DR. OWENS. I think that's a little distortion. They werenot recommended courses of treatment but simply alternatives.As I indicated earlier, the pediatrician and Dr.Schafer and the family physician, Dr. Wenzler, weresimply saying to them, "This child must go to RileyHospital to be operated on tonight." I'm not sure theyeven mentioned the Down's syndrome or they certainlydownplayed it and were giving the impression to thefamily that surgery would make the child okay. Thosewere their words: "The baby will be okay."My words to the family were simply, as I said before,that "I think you must realize that if the child has thesurgery, and if the surgery is successful, that this child willstill be a Down's syndrome child with all that thatimplies," and as I indicated earlier, the parents were prettywell-acquainted and had a good knowledge of what thisimplied. I said to them, "There is the alternative of doingnothing, in which case the child will survive a few daysand will die." These were not recommendations in thatsense at all. These were alternatives presented to thefamily of what could be done. They chose not to treat thechild.COMMISSIONER DESTRO. IS it fair to say, then, that thedecision not to treat was based on the fact that the childhad Down's syndrome?DR. OWENS. I think it was, and all that this implied. Inother words, that the gain, if you want to say this, that togo through all of this, to treat such a child with everythingthat's involved in that, and then to do all that with such adreary, hopeless outlook as to the future, the parents feltthis was not indicated either for themselves or the child. 30The significance of Dr. Owens' approach to thetreatment of persons with disabilities was echoed inthe statements of other witnesses, and therein lies thecrux of the constitutional problem. It occurs in lightof a history of discrimination against persons withmental disabilities that has been described by eachJustice of the United States Supreme Court as"grotesque." 31 More important, what is at stake indenial of treatment cases is not merely "equalprotection of the laws" but protection of life itself. 32Thus, when medical care decisionmaking is basedon little more than personal experience and hearsayregarding the capabilities and problems of personswith disabilities and their families—that is, on deeplyingrained stereotypes that relegate persons withdisabilities to a perpetually subordinate status—therecan be no question that the equal protection clause30Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights, 228-29 (1986) (vol. II).31Cleburne Living Center, 473 U.S. at 438, 454 (Stevens, J.,concurring), 461 (Marshall, J., concurring and dissenting in part).forbids government action that either rests on suchstereotypes or affirms them.Procedural Due ProcessThe due process clauses of the 5th and 14thamendments require, among other things, that certainprocedural protections must be provided beforethe government may deprive individuals of life,liberty, or property. Known as procedural dueprocess, the doctrine is most frequently interpretedas providing an opportunity to be heard on the issueof the fairness and lawfulness of the proposeddeprivation. The procedure required is determinedby weighing several factors:First, the private interest that will be affected by theofficial action; second, the risk of an erroneous deprivationof such interest through the procedures used, and theprobable value, if any, of additional or substitute proceduralsafeguards; and finally, the Government's interest,including the function involved and the fiscal and administrativeburdens that the additional or substitute proceduralrequirements would entail. 33Disabled infants who are denied food, water, andmedical care on the basis of their disability aredenied both life and liberty. At a minimum, the 5thand 14th amendments require that they be affordedprocedural due process, but in many of the casesbrought to the Commission's attention, there was noprocedural protection afforded at all. Potentialadvocates for the child were not identified andnotified of the denial of treatment, nor were theygiven adequate opportunity to present the case forproviding care that children without disabilitieswould be provided as a matter of course.A thorough evaluation of the type of proceduralprotection that should be provided is beyond thescope of the Commission's inquiry, but the factorsaddressed by the Supreme Court in Mathews v.Eldridge 3 * counsel that careful and informed evaluationof each case by independent and disinteresteddecisionmakers is required. 35 Evidence in the recordsupports a finding that the risk of erroneous determinationsregarding the nature and extent of futuredisability is extremely high. The record also supportsa finding that children have been deprived oftreatment based on both uninformed and biased32See Furman v. Georgia, 408 U.S. 238, 272 (1972) (Brennan, J.,concurring) (the right to life is the "right to have rights").33Mathews v. Eldridge, 424 U.S. 319, 335 (1976).34424 U.S. 319 (1976).35See chaps. 10-13.97

medical advice. Given the magnitude of the child'sinterest and the risk of error to life and health, noargument has been made that there even exists asubstantial government financial interest that wouldpreclude a hearing. 36 Instead, it has been argued thatthe private nature of most medical care decisionmaking,as well as the substantial deference accordedparents in the care and upbringing of their childrencounsels against government intervention on behalfof newborn children with disabilities.Factors Limiting the Rights of NewbornChildren with DisabilitiesRelevance of "Privacy"Although the term "privacy" appears in severalState constitutions, 37 it does not appear in theConstitution of the United States. As commonlyunderstood in constitutional law, the term "privacy"refers to two distinct concepts: (1) the inviolabilityof one's person, home, or things from unreasonablegovernmental intrusions; and (2) individual autonomyor liberty with respect to certain mattersimportant to one's person or the course of one's life36There are, in fact, existing mechanisms for such hearings. Thequestion for present purposes is whether they should be requiredas a matter of procedural due process. See chaps. 10-13.37E.g., ARIZ. CONST, art. II, sec. 8; FLA. CONST, art. I, sec. 23(1980) WASH. CONST, art. 1, sec. 7.38See generally, Whalen v. Roe, 429 U.S. 589 (1977).39U.S. CONST, amend. IV: "The right of the people to be securein their persons, houses, papers, and effects, against unreasonablesearches and seizures, shall not be violated, and no Warrants shallissue, but upon probable cause, supported by Oath or affirmation,and particularly describing the place to be searched, and thepersons or things to be seized."40U.S. CONST, amend. XIV, sec. 1: "nor shall any State depriveany person of life, liberty, or property, without due process oflaw;. . . ."41See, e.g., Meyer v. Nebraska, 262 U.S. 390 (1923) (autonomy tomake educational decisions; invalidating State law which forbadeteaching any language other than English); Griswold v. Connecticut,381 U.S. 479 (1965) (autonomy of married persons to usecontraceptives; invalidating State laws prohibiting the use of birthcontrol devices); Roe v. Wade, 410 U.S. 113 (1973), reh'g denied,478 U.S. 1039 (1986) (autonomy to choose abortion; invalidatingState laws protecting the unborn). But see Bowers v. Hardwick,478 U.S. 186 (1986), rehg denied 410 U.S. 959 (1973) (refusing torecognize autonomy of homosexuals to engage in consensualsodomy, but reserving decision with respect to sodomy bymarried couples).42Kg., Am. Academy of Pediatrics v. Heckler, 561 F. Supp. 395,402-03 (D.D.C. 1983) (dictum). Another example is found inRasmussen v. Fleming, 154 Ariz. 207, 741 P.2d 674, 682 (1987) inwhich the Arizona Supreme Court construed article 2, section 8,of the Arizona Constitution, which provides that "No personshall be disturbed in his private affairs, or his home invaded,without authority of law," to include the right of a competentadult to grant another a proxy to refuse medical treatment on thegrantor's behalf should he or she become incompetent.98(e.g., marriage, sex, childbearing). 38 The protectionfor the locational aspect of privacy is found in the4th amendment, 39 whereas the due process clause ofthe 14th amendment 40 is generally held to be thebasis of the rights of individual autonomy that theUnited States Supreme Court has recognized overthe years. 41 It is in the latter sense—individualautonomy—that the term "right to privacy" is usedin cases involving the right to refuse medicaltreatment for oneself or others. 42Control and Upbringing of ChildrenIt has long been held that parents have constitutionallyprotected interests in the custody, care, andcontrol of the upbringing of their children. 43 It isalso well-settled that the government may overrideparental decisions when the life, health, or safety ofthe child is endangered. 44 The reluctance of courtsto intervene in disputes involving parental authorityover children is evident in several of the reportedcases involving denial of medical treatment toinfants and children with disabilities. 45 Nevertheless,43See, e.g., Smith v. Org. of Foster Families, 431 U.S. 816 (1977);Wisconsin v. Yoder, 406 U.S. 205 (1972) (education); May v.Anderson, 345 U.S. 528 (1953) (custody); Pierce v. Society ofSisters, 268 U.S. 510 (1925); (education); Behn v. Timmons, 345So.2d 388, 389 (Fla. App. 1977) ("a natural, God-given right");New Hampshire v. Robert H., 118 N.H. 713, 393 A.2d 1387(1978). See generally, B.C. Hafen, The Constitutional Status ofMarriage, Kinship, and Sexual Privacy—Balancing the Individualand Social Interests, 81 Mich. L. Rev. 463 (1983).44See, e.g., Prince v. Massachusetts, 321 U.S. 158 (1944) (childlabor). In In re Rinker, 117 A.2d 780 (Pa. Super. 1955), forexample, the court discussed the policy considerations supportinginvoluntary deprivation of child custody for neglect as follows:It is a serious matter for the long arm of the state to reachinto a home and snatch a child from its mother. It is a powerwhich a government dedicated to freedom for the individualshould exercise with extreme care, and only where theevidence clearly establishes its necessity. . . .Under our system of government children are not theproperty of the state to be reared only where and under suchconditions as officials deem best.The power of the juvenile court is not to adjudicate what isfor the best interests of a child, but to adjudicate whether ornot the child is neglected. In re Rose Child DependencyCase, 161 Pa. Super. 204, 208, 54 A.2d 297 (1947).Accord Petition of Kauch, 358 Mass. 327, 264 N.E.2d 371 (1970).Cf, In the Matter of Baby M, 109 N.J. 396, 537 A.2d 1227 (1988)(rejecting both the right of parental consent and an absolute rightof procreational autonomy where important State and childinterests are at stake.) See generally, Thomas, Child Abuse andNeglect Part I: Historical Overview, Legal Matrix, and SocialPerspectives, 50 N.C. L. Rev. 293 (1972); Note, State Intrusion intoFamily Affairs: Justifications and Limitations, 26 Stan. L. Rev.1383 (1974).45See, e.g., Bowen v. Am. Hosp. Ass'n, 476 U.S. 610 (1986);United States v. Univ. Hosp., 729 F.2d 144 (2d Cir. 1984); Am.

the Supreme Court's concern for parental prerogativeshas always been tempered by the recognitionthat there is broad legislative authority to protectchildren from the misguided, negligent, or harmfulacts of parents. 46Parental Autonomy and Medical DecisionmakingThe testimony developed during the course of theCommission's two hearings on the protection ofnewborns with disabilities left no doubt that parentalchoice in medical decisionmaking is strongly influencedby attitudes and prejudices reflected in thesuggestions of attending physicians, medical staff,and others close to the family, such as clergymenand other family members. 47 Parents generallystrive to act in the best interests of their children,whether those children have disabilities or not, andseek out medical advice to assist them in the difficultdecisionmaking process which surrounds any medicalcare decision of consequence. 48 Thus, the firstsituation described in the introduction to this chapter—fullyinformed parents who refuse consent tomedical treatment that is either not useful or burdensometo their child—was not the subject of any partof the Commission's inquiry.It is only when parents are alleged to be neglectingthe child's health interests that the cause forgovernmental intervention on behalf of the childarises. To speak of parental or familial autonomy or"privacy" in such a situation would be to argue thatgovernmental intervention is inappropriate even inthe face of a charge of parental neglect. The factthat the child is born with a disability does notchange the analysis.The significant issues for constitutional purposesarise when parental or guardian refusal to consent tomedical treatment for a person with a disability isnot based on a medically defensible difference ofopinion about the harmful or useless nature of theproposed treatment. Instead, it is based on either: (1)lack of adequate, accurate information about thedisability itself; or (2) irrational or negative attitudesand prejudices about the quality of life of personswith disabilities generally, or of persons with similardisabilities. 49The record explicitly supports a finding thatmedical care decisions affecting persons with disabilities—particularlymental disabilities—are stronglyinfluenced by a lack of adequate information aboutsuch important matters as rehabilitation opportunities,costs, and community support. 50 Physicians andmedical personnel often do not provide the informationparents need, and many times the informationthat is provided is simply wrong or out of date. 51State child protective agencies have an educationalintervention role to play in such cases. 52 In thesmall, but significant, number of cases that are alsoinfluenced by negative attitudes about persons withdisabilities, 53 State refusal to intervene to protecttheir interests raise serious equal protection problems.The medical neglect statutes discussed in chapters5 and 7 address each of these concerns, and theyneed not be repeated here. The important point isthat parental and legal guardianship rights to makemedical care decisions for dependent persons aresubject to government oversight on behalf of thedependent. There is simply no other way to protecta dependent's interests.For purposes of making policy, however, thedifference between an argument based on an allegedconstitutional right to parental autonomy and onebased on the common law or statutory right ofparents or guardians to refuse medical treatment isthat the autonomy argument is far broader. In a caseasserting the common law or statutory right torefuse treatment, the best interests of affected individualsare the central issues, and appropriate guidelinescan be written to protect both the parental orguardianship relationship and the interests of thechild or ward. As a matter of common or judgemadelaw, such standards can be modified in wholeor in part by legislation. Constitutional rights toprivacy (autonomy), however, operate as limits onthe power of the government to make any regula-Academy of Pediatrics v. Heckler, 561 F.Supp. 395 (D.D.C.1983); Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d1186 (1983), ajfg, 95 A.D.2d 587,467 N.Y.S.2d 685 (App. Div. 2dDept. 1983); In re Phillip B., A Minor, No. 66103 (Super. Ct,Santa Clara County, Cal., Apr. 27, 1978), ajfd, 92 Cal. App. 3d796 (1979), cert, denied, 445 U.S. 749 (1980).46Parham v. J.R., 441 U.S. 584 (1979); Prince v. Massachusetts,321 U.S. 158 (1944).47See chap. 2.48Id.49See, supra, text accompanying notes 13-16 (distinguishingbetween actions based on "thoughtlessness and indifference" andthose based on prejudice).50See chaps. 2, 3, and 9.51See chaps. 2 and 3.52See chap. 10.53See chaps. 1-4 and 9.99

tions at all regarding the subject matter. 54 Decisionsbased squarely on constitutional concepts of parentalautonomy reflect a policy position that seeks toremove the issues from legislative or executivecompetence altogether. 55 Such a proposition findslittle, if any, support in the case law. 56"Substituted Judgment": The Right to RefuseMedical Treatment by ProxyOften raised in denial of treatment cases is theright of an individual to consent to or refuse medicaltreatment. This right, however, is not absolute, evenfor a competent adult who seeks to refuse personaltreatment. 57 It must give way in the face ofimportant governmental interests in protecting others:1. The preservation of life;2. the protection of interests of innocent thirdparties (e.g., children and other dependents);3. the prevention of suicide; and4. the maintenance of the ethical integrity of themedical profession. 58In the case of newborns with disabilities, thisinterest manifests itself in the principle that parentsand legal guardians may give or withhold consent tomedical treatment for their children or wards,subject to the power of the government to preventmedical neglect. 59 By definition, an infant is incapa-ble of making individual decisions or exercisingautonomy. Thus, to the extent that courts might relyon the infant's asserted right to individual autonomyas the basis for parental decisionmaking, 60 suchcourts are operating in the realm of legal fiction. 61Issues of CostBecause the issues in deprivation of treatmentcases involve such a massive deprivation of life andliberty in the form of withholding food, water, andneeded medical treatment, the cost of such treatmentalone is an insufficient reason for denial of treatment.There is no question that the added financial andother burdens that a child with a disability mayplace on other members of the family are seriousissues of social welfare policy, 62 but these burdensalone cannot justify deprivation of life througheither design or neglect.The Ability and Willingness of Courts to ProvideProtectionAlthough the Supreme Court has held that personswith mental retardation are not entitled to thebenefit of "heightened [judicial] scrutiny" whenthey complain of discriminatory treatment by thegovernment, 63 the Court was motivated by concernthat legislative and administrative judgments affectingpersons with mental retardation involve sensitive54Cf. In the Matter of Baby M, 109 N.J. 396, 537 A.2d 1227(1988) (holding that where important interests of the child are atstake, parental consent is not the determinative consideration;rejecting absolute right of procreational autonomy which wouldsupport an absolute parental discretion over the health andwelfare of the child).55See, e.g., In re Peter, 108 N.J. 365, 529 A.2d 419, 427 (1987)(decided on nonconstitutional grounds); In re Colyer, 99 Wash.2d114, 119-21, 660 P.2d 738 (1983) (decided, in part, on constitutionalgrounds). For an interesting discussion of the relationshipbetween the concepts of consent and constitutionally basedprivacy or autonomy, see In the Matter of Baby M, 109 N.J. 396,468 n.16, 537 A.2d 1227 (1988).56See, e.g., Planned Parenthood of Central Missouri v. Danforth,428 U.S. 52 (1976) (parents' statutory right to refuse consent tominor's abortion overridden on constitutional grounds); Prince v.Massachusetts, 321 U.S. 158 (1944) (State interest in health ofchildren outweighs guardian's right to employ the child in amanner the State has determined to be harmful). See also casescited supra note 55." In re Conroy, 98 N.J. 321, 346, 348-54, 486 A.2d 1209, 1222,1223-26 (1985). See also Roe v. Wade, 410 U.S. 113 (1973)(rejecting absolute right to control one's body).58Kg., Brophy v. New England Sinai Hosp., 398 Mass. 417, 497N.E.2d 626, 634 (1986). See also In re A.C., 533 A.2d 611 (D.C.App. 1987) rehggranted en bane, 539 A.2d 203 (D.C. App. 1988)(protection of others); In re E.G., a Minor, 161 111. App. 3d 765,515 N.E.2d 285 (1987) (prevention of suicide: right of minor toreject blood transfusion for religious reasons).59See chap. 5.80See, e.g., In re L.H.R., 253 Ga. 439, 321 S.E.2d 716, 722-23(1984); In re P.V.W., 424 So.2d 1015, 1020 (La. 1982).61In re Conroy, 98 N.J. 321, 486 A.2d. 1209, 1246 (1985)(Handler, J., dissenting).62While it is also possible to argue that resource allocation issuesaffecting persons with disabilities should also be analyzed underthe equal protection clause, such arguments are beyond the scopeof the analysis presented here. There has been considerable debateamong Supreme Court Justices concerning the propriety of usingthe equal protection clause to analyze eligibility criteria for socialwelfare programs. Compare, e.g., San Antonio Indep. School Dist.v. Rodriguez, 411 U.S. 1 (1973) (guarantee does not prohibitclassifications having differential impact on the poor), with, e.g.,Dandridge v. Williams, 397 U.S. 471, 521 (1970) (Marshall, J.,dissenting) (when analyzing classifications affecting receipt ofgovernmental benefits, a court must consider "the character ofthe classification in question, the relative importance to individualsin the class discriminated against of the governmental benefitsthat they do not receive, and the asserted state interests in supportof the classification."). See also, Plyler v. Doe, 457 U.S. 202 (1982)(though guarantee does not prohibit classifications based onaliens' legal status, State refusal to permit undocumented alienchildren to attend public schools is invalid). The discussionpresented here, however, deals only with denial of eithertreatment or legal protection usually available to all on the basisof simple need.63Cleburne Living Center, 473 U.S. 432, 443 (1985).100

policy judgments related to their needs. 64 TheCourt's deference to legislative judgment, however,places a particularly heavy burden on Congress andthe State legislatures to protect the rights andinterests of persons with disabilities by statute.State Action IssuesThe obligations of decisionmakers whose actionsare fairly attributable to the government 65 aregoverned directly by the Constitution. Among thosewhose actions are subject to scrutiny under the equalprotection and due process clauses are: (1) Federal, 66State, and local hospitals and their employees(including staff physicians when their decisions aregoverned by hospital policy), 67 even though theaction in question is taken at the request of theparents; 68 (2) State and local child protectiveagencies; (3) Federal, State, and local agenciescharged with the enforcement of laws prohibitingdiscrimination on the basis of disability; and (4) Stateand Federal courts.Although the Supreme Court's "state action"jurisprudence has been described as a "conceptualdisaster area" and "a 'doctrine' without shape orline," 69 several of its holdings are relevant toquestions involving discriminatory denials of medicalcare by physicians. First, and perhaps mostimportant, substantial government funding or regulationof an institution, program, or activity will nottransmute what is otherwise a private decision intoone which "may be fairly treated as that of the stateitself." 70 The key is whether the decisionmaker isacting in his or her private capacity. In Blum v.Yaretsky, 71 for example, the plaintiffs complainedthat physicians responsible for the discharge ortransfer of medicaid patients were "state actors"64See supra, text at notes 13-15.65See supra notes 7-10.86See supra note 3.67See, e.g., Johnson v. Sullivan, Civ. No. 85-2434 A (W.D.Okla., filed Oct. 3, 1985). See also, S. Paulus, Suit Filed inOklahoma Alleging Twenty-Four Infants Died After Being DeniedBeneficial Medical Treatment, 1 Issues in L. & Med. 321 (1986).- Parham v. J.R., 442 U.S. 584, 606-07 (1979).69C. Black, State Action, Equal Protection and California'sProposition 14, 81 Harv. L. Rev. 69, 95 (1967).70Jackson v. Metropolitan Edison Co., 419 U.S. 345, 351 (1974)(extensive regulation); Blum v. Yaretsky, 457 U.S. 991 (1982)(State subsidy of more than 90 percent of the medical expenses ofpatients insufficient). "The ultimate issue in determining whethera person is subject to suit under [42 U.S.C.A.] § 1983 is the samequestion posed in cases arising under the Fourteenth Amendment:is the alleged infringement of federal rights 'fairly attributable tothe state'?" Rendell-Baker v. Kohn, 457 U.S. 830 (1982), citingLugar v. Edmundson Oil, 457 U.S. 922, 938 (1982).because their activities were almost fully subsidizedby government. The Court stated:[Ajlthough the factual setting of each case will besignificant, our precedents indicate that a state normallycan be held responsible for a private decision only when ithas exercised coercive power or has provided suchsignificant encouragement, either overt or covert, that thechoice must in law be deemed to be that of the state. 72Thus, while the facts in each case must beexamined to determine whether or not physiciansand other medical care personnel are chargeablewith constitutional violations if they engage indiscrimination in the provision of medical care, 73 itgoes without saying that when State child protectiveagencies, civil rights enforcement agencies, andcourts act or fail to act on the grounds that anindividual has a disability, such acts or omissions aresubject to examination under the equal protectionclause. The more difficult question arises when thegovernment knowingly acquiesces in private discriminationor deprivations of life and liberty. 74There are circumstances where the Court has heldthat government inaction—declining to act to preventprivate conduct—may constitute governmentaction, particularly where there is some indication ofpublic encouragement of the private conduct inquestion. 75 As the Supreme Court noted in Palmorev. JSidoti: "The Constitution cannot control such[private] prejudices, but neither can it tolerate them.Private biases may be outside the reach of the law,but the law cannot, directly or indirectly, give themeffect." 76ConclusionThe record developed during the Commission'stwo hearings and continuing investigation demon-Section 504 of the Rehabilitation Act of 1973, 29 U.S.C.A. §794(Supp. 1988), however, protects an "otherwise qualified handicappedindividual" from discrimination or denial of benefits"solely by reason of his handicap,. . .under any program oractivity receiving Federal financial assistance. . . ."71457 U.S. 991 (1982).72Id. at 1004.73Burton v. Wilmington Parking Auth., 365 U.S. 715, 722 (1961)("Only by sifting facts and weighing circumstances can thenonobvious involvement of the State in private conduct beattributed its true significance.").74See, e.g., Deshaney v. Winnebago County Dep't of SocialServices, 812 F.2d 298 (7th Cir., 1987) cert, granted, 108 S.Ct.1218 (1988) (No. 87-154).75See, e.g., Reitman v. Mulkey, 387 U.S. 369 (1967); Shelley v.Kraemer, 334 U.S. 1 (1948).76466 U.S. 429, 433 (1984).101

strates that there is a grave danger to the constitutionalrights of newborn children in cases wherefood, water, and necessary medical care are deniedon the basis of disability and predictions concerningfuture quality of life. The principle of equal protectionof the laws is offended when disability is thebasis of a nontreatment decision. Procedural protectionfor the interests of both child and parents isoften absent completely or is woefully inadequate tothe task of sifting the facts.Since the Supreme Court's decision in Bowen v.American Hospital Association, 11 it has been clearthat judicial action is insufficient to protect newbornchildren with disabilities. The task of protectingsuch children from discrimination and neglect,whether based on ignorance or outright prejudice,thus falls to Congress and to the State legislatures.476 U.S. 610 (1986).102

Chapter 9The Incidence of Discriminatory Denial ofMedical TreatmentHow frequently in contemporary America arepeople denied medical treatment for treatable lifethreateningconditions, or life-preserving food andfluids, because they have disabilities? The answer tothis question is of great importance. If discriminatorydenials of treatment in general occur only inisolated and unusual instances, the need for anygovernment intervention in treatment decisionsmight be questioned, especially the need for aFederal role. If it were the case that there was asignificant incidence of such discrimination beforethe effective date of the Child Abuse Amendmeu*'-of 1984, 1 but that since then the incidence hadgreatly shrunk, that might imply that the amenoments themselves are adequate to address the sitition and that they are being effectively enforce'Such conclusions would suggest that there is lit sneed for a change in the status quo.Suppose, on the other hand, the evidence sb'" vsthat there has been a significantly high incidenc ofmedical discrimination against children with disabilitiesthat is part of a much larger pattern of medicalcare discrimination against people with disabilitiesgenerally, and that this incidence largely persistsdespite 3 years of experience under the Child Abuse142 U.S.C.A. §§5101-5103 (West Supp. 1988). The 1984 law,discussed in detail in chap. 7, established standards of treatmentfor children with disabilities in all States that receive Federalfunds for their child abuse and neglect programs.3Nor is it usually reported to others within the hospital, such asmembers of an infant care review committee. A study of suchcommittees in 10 hospitals in eight cities found that only one"requires [committee] review of any case where withdrawal oflife support is proposed." Office of Inspector General, Departmentof Health and Human Services, Infant Care ReviewCommittees Under the Baby Doe Program ii (1987). The othernine review such cases only when there is disagreement betweenthe treating physician and parents or "the treating physicianAmendments. Such a conclusion would suggest aneed to examine critically the current approach toimplementing the amendments with a view to seeinghow it might be improved and whether otherinstruments are needed to protect the medicaltreatment rights of children with disabilities.Difficulties of EstimationAny attempt to quantify denial of treatment, nowor in the recent past, is subject to inherent limitations.When health care personnel and parents agreeto reject a course of lifesaving medical treatment fora child with a disability, they typically do notannounce it to the world at large or report it in thoseterms to statisticians or public officials. 2 There havebeen isolated instances of treatment denials beingpublicly announced in medical journal articles,including one article that reported decisions towithhold lifesaving treatment from a number ofnewborn children with disabilities at Yale-NewHaven Hospital in the early 1970s 3 and anotherdescribing similar decisions at Children's Hospital ofOklahoma in the 1980s. 4 The physicians whoauthored these articles were crusading for openacceptance of denial of treatment practices by theirfellow professionals. 5requests advice." Id. Nor may incidence easily be estimated basedon records from retrospective reviews of such instances. Onlytwo of the committees studied have or are planning to haveretrospective review of "selected" cases, although patient deathsmay be reviewed by other quality assurance committees. Id. at 5.3Duff & Campbell, Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890 (1973).4Gross, Cox, Tatyrek, Pollay & Barnes, Early Management andDecision Making for the Treatment of Myelomeningocele, 72Pediatrics 450 (1983).5For example, the Oklahoma health care personnel stated:"[D]ocumented suffering. . .is not only reduced but prevented, ifone is persuaded that death is preferable to life under certain103

Disincentives to Whistle BlowingDenial of treatment cases typically come to publicattention only when a "whistle blower"—usually ahealth care professional 6 or a family member 7 whois convinced the denial of treatment is wrong—reports the matter to a public agency or other rightsadvocate. 8There are substantial disincentives to whistleblowing whether it takes place among health carepersonnel or in the general population. A recentstudy of whistle blowers by Donald and KarenSoeken found that all of those studied who blew thewhistle in the private sector lost their jobs. One-fifthof those surveyed (who also included FederalGovernment employees) were without jobs at thetime of the study; 86 percent had "negative emotionalconsequences, including feelings of depression,powerlessness, isolation, anxiety and anger"; and 80percent had physical deterioration. Mr. Soeken, apsychiatric social worker with a doctorate in humandevelopment, concluded (as paraphrased by a reporter)that "[Tjhere is so much retaliation againstknown whistle blowers [because]. . .it is associatedwith cultural taboos against tattling." 9Mr. Soeken said there are seven stages of life forthe whistle blower: discovery of the abuse, reflectionon what action to take, confrontation withsuperiors, retaliation, the long haul of legal or otheraction involved, termination of the case, and goingon to a new life. "The last stage is the most difficultto reach," he said, "and most [of] them don't reachit." 10Bill Bush, himself a whistle blower who wasdemoted, maintains a computer file on whistlecircumstances. . .it is prima [facie] irresponsible to obtain knowledgeabout the results of surgery on high risk infants and then notto use the negative results in informing the parents and others ofthe consequences of surgery." Id. at 451, quoting with approvalFletcher, Spina Bifida with Myelomeningocele: A Case Study inAttitudes Towards Defective Newborns, in Decision Making and theDefective Newborn 281 (C. Swinyard ed. 1978).6Health care professionals did so in the "Baby Jane Doe" case.Lawyer Fights on For Baby Doe, USA Today, Dec. 13, 1983, at 2A,col. 1.7A family member did so in In re T.A.P., No. 03231186(Milwaukee County, Wis. Cir. Ct. July 31, 1987), rehearing (Aug.12-13, 1987), a case involving denial of surgery to a child withspina bifida. Telephone interview with Thomas C. Potter,Assistant District Attorney, Milwaukee County, Wis. (Nov. 25,1988).8Occasionally, unusual circumstances bring a case to publicattention in other ways. In a Minnesota case, In re Steinhaus, No.J-86-92 (Minn. Redwood County Ct., Juv. Div. Sept. 11, 1986),reprinted in 2 Issues in L. & Med. 241 (1986), the child to whomtreatment was being denied was in the legal custody of a childblowers with 8,500 entries. "When individualsphone him with dark secrets he exhorts them to keepquiet unless they're independently wealthy. 'I wantto emphasize this one thing,' he says. 'Whistleblowing is dangerous. I've seen people bloodied.And it's not going to get easier to do. Nobody wantsa snitch.'" 11 Sociology Professor Myron PeretzGlazer, an expert on whistle blowers, observes,"They break the unwritten law of social relationships.. . .They break a norm—the norm of loyalty."12These realities lead to the conclusion that countingthe number of reported or publicized cases alonewould underestimate the incidence of discriminatorydenial of treatment. It is probable that such casesrepresent only the tip of the iceberg. It is necessaryto turn, therefore, to methods other than countingthe reported cases.Surveys of Physician AttitudesOne method of judging the prevalence of denial oftreatment is by examining the attitudes of treatingphysicians and other health care personnel. Althoughsurveys of attitudes toward denial of treatmentdo not provide direct evidence of the numberof actual cases, the statements of health care professionalsdo establish that a significant proportion ofthem would participate in denial of treatment incertain circumstances. Two surveys of pediatricianspublished in 1988 suggest that contemporary denialof treatment is not infrequent.The November 1988 issue of the Journal ofPediatrics contains a report on a poll undertaken tolearn how pediatricians would influence treatmentabuse agency (although the agency had placed him with hismother) because of previous abuse by his father. For that reason,the agency received information about the treatment denial.Telephone interview with Michael H. Boyle, attorney for LanceSteinhaus (Dec. 1, 1988). In the Idaho "Baby Ashley" case, theproposed denial of treatment evoked public attention and agencyintervention because the child—whose disability was not initiallyapparent—was found in a trash can shortly after birth, an eventthat made the headlines and led to reporters' putting a spotlighton the case. Medical professionals openly deplored the publicattention, and agency involvement focused on them because theybelieved that without the publicity treatment could have beenquietly withheld. Telephone interview with James Baugh, ManagingAttorney, Coalition of Advocates for the Disabled, amicuscuriae in the case (Dec. 1, 1988).9Farnsworth, Survey of Whistle Blowers Finds Retaliation but FewRegrets, New York Times, Feb. 22, 1987, at 22, cols. 1-5.10Id. at col. 5.11Kleinfield, The Whistle Blowers' Morning After, New YorkTimes, Nov. 9, 1986, sec. 3, at 1, col. 2, at 10, col. 2.» Id. at 10, col. 2.104

decisions based on the presence of varying degreesof hydrocephalus in children born with spina bifida.13 The subjects of the study were 604 Fellows ofthe American Academy of Pediatrics selected on arandom basis from the membership. Of the 604pediatricians contacted, 373 or 62 percent returnedthe questionnaires, although 56 were discarded dueto incomplete information. 14The questionnaires were designed to determinewhat approach the doctors would take towardlifesaving treatment for children with spina bifida.Approximately half the physicians were asked aboutchildren with spina bifida but no hydrocephalus andthose with both spina bifida and moderate hydrocephalus.The other half were asked about childrenwith spina bifida but no hydrocephalus and thosewith both spina bifida and severe hydrocephalus. 15On the survey form, doctors could indicate that theywould encourage surgery, be neutral, or discouragesurgery. If the child were their own, the doctorscould obtain all possible care, could provide onlysupportive care, or could answer that they were notsure what they would do. 16The authors wrote: "Previous experience withphysician surveys suggests that the responses tosurveys tend to be conservative. . . .Thus the resultsof this study would be more likely to err on theless controversial side (treatment of all infants)." 17Nevertheless, the results of this survey were significant:the presence of hydrocephalus (which thepediatricians perceived as related to mental retardation)would lead the doctors away from encouragingsurgery toward discouraging surgery, a trend moremarked as the degree of the hydrocephalus becamemore pronounced. If the child were the doctor'sown, a similar trend toward choice of supportivecare only, increasing with the degree of hydrocephalus,was evident. About a third of the doctors (34.2percent) either would not know what to do orwould provide only supportive care if the childwere their own and only had spina bifida, with nohydrocephalus. If the same child were another's, 36percent would be neutral or would discourage13Siperstein, Wolraich, Reed & O'Keefe, Medical Decisions andPrognostications of Pediatricians for Infants with Meningomyelocele,113 J. of Pediatrics 835 (1988). See chap. 1, notes 9 and 14, fordescriptions of spina bifida and hydrocephalus.14Id. at 837.Id. at 836-37.16Siperstein, Wolraich, Reed & O'Keefe, supra note 13, at 836.Id. at 840.18Id. at 837, table 1. Further discussion of the results of thissurvey appears in chap. 4, at the text accompanying notes 12-14.surgery. The percentage of doctors who wouldeither not know what to do or would provide onlysupportive care almost doubled (to 62 percent) fortheir own child with the presence of moderatehydrocephalus. In the same circumstances, 55.1percent would be neutral or would discouragesurgery for the child of another. With the presenceof severe hydrocephalus, 75.7 percent would notknow what to do or would provide only supportivecare for their own child (49.7 percent were certainthey would provide only supportive care), and 75.1percent would be neutral or would discouragesurgery for the child of another. 18Another survey, this one answered by 49 percentof the membership of the Perinatal Pediatrics Sectionof the American Academy of Pediatrics duringfall 1986, disclosed widespread hostility to thestandards of treatment adopted by the Child AbuseAmendments of 1984 and their implementing regulations.19 Sixty-six percent declared that the standardsdo not allow sufficient consideration of the parents'views, and 60 percent stated that they do not allowadequate consideration of the infant's suffering. 20An attitude that discourages treatment is sometimesinculcated in medical school. Pediatric residentsat Baylor College of Medicine in Houston,Texas, were asked the following questions both atthe beginning and at the end of their 3-year residencies:In which of the following situations would you employheroic measures to save an infant's life; that is, would youresuscitate a child with:19Minor birth defects (eg, skin tags, extra digits)?Major defects (eg, tracheoesophageal fistula, duodenalatresia)?Birth weight less than 1000 g?Severe defects (eg, congenital hydrocephalus myelomeningocele)?Severe mental defects (eg, anencephaly, known severebrain damage)? 21The standard of treatment the act and regulation require isdescribed in chap. 7, at the text accompanying notes 42-102.20Kopelman, Irons & Kopelman, Neonatologists Judge the "BabyDoe" Regulations, 318 New Eng. J. Med. 677, 683 (1988). Thesurvey authors agree with the majority, arguing that death is inthe best interests of some infants who must be given lifepreservingtreatment under the Child Abuse Amendments.21Berseth, Kenny & Durand, Longitudinal Development inPediatric Residents of Attitudes Toward Neonatal Resuscitation, 140Am. J. Diseases of Children 766, 767, table 2 (1986).105

Using a cumulative scaling procedure known asGuttman scoring, the authors were able to concludethat "residents demonstrated a significant increase inreluctance to resuscitate during the first year. . .oftraining. . .[and] a highly significant change duringthe third year. . . .Both periods of change demonstratedincreasing Guttman scale scores, indicatingthat residents had developed attitudes during thosetime intervals of increased reluctance to resuscitate.. . ," 22 The authors attributed the increasedreluctance to resuscitate to the assumption that"these residents may have been strongly influencedby faculty members and other role models whointeracted with the residents." 23Turnbull AnalysisApart from these recently published studies, themost comprehensive and well-documented evaluationthat has been done to date appears in thestatement prepared for the Commission by H.Rutherford Turnbull, professor of Special Educationand Law at the University of Kansas. It has beenincluded as appendix B to this report. In it, ProfessorTurnbull evaluated the available polls of health carepersonnel, summarized relevant sociological research,and surveyed the professional literature.What follows is a brief synopsis of TurnbulFs paper.Turnbull summarized earlier polls of attitudesamong health care professionals, incidence data, andrecent trends in the literature on medical ethics. Heconcluded that these demonstrated the existence of"a contemporary attitude in the medical professionthat supports discrimination in medical care againstchildren, particularly newborns with moderate tosevere/profound disabilities" that "has been linkedto unwarranted deaths" and that justifies Federalaction to prevent such discrimination from occurring.24Several polls have been conducted among pediatricsurgeons, pediatricians, and nurses in neonatalintensive care units eliciting their responses tohypothetical treatment situations involving infantswith medically correctable life-threatening condi-22Id. at 767. Unfortunately, the authors provided no breakdownof the percentage of residents unwilling to resuscitate for any ofthe particular conditions listed.2 * Id. at 768.24App. B.25Intestinal obstructions may occur as frequently as 1 in each1,500 births. R. Behrman & V. Vaughan, Textbook of Pediatrics780 (W. Nelson 13th ed. 1987).If a complete obstruction is not corrected promptly, the infant'scondition deteriorates rapidly, with persistent vomiting, loss of106tions who were also at risk for mental retardation orother disability after the treatment. Approximately77 percent of the surgeons and 50 percent of thepediatricians in a 1975 survey conducted by theSurgical Section of the American Academy ofPediatrics said that they would "acquiesce in parents'decision to refuse consent for surgery in anewborn with intestinal atresia 25 if the infant alsohad Down's syndrome." Approximately 63 percentof the surgeons and 43 percent of the pediatriciansindicated that in such cases they would also stopsupportive services such as the provision of intravenousfluids and nasogastric suction. 26A 1977 survey of Massachusetts pediatriciansrevealed that 51 percent of them believed that aDown syndrome child with intestinal block, whoseparents rejected surgery, should not be operatedon. 27 Even of the 46 percent of pediatricians in thisMassachusetts survey who would recommend surgery,only 40 percent (approximately 18 percent ofthe entire group) would obtain a court order fortreatment of the infant. 28 Sixty-seven percent ofthose surveyed would not recommend surgery for ababy with severe myelomeningocele, while 60 percentof those who would recommend surgery wouldnonetheless acquiesce in a parental decision not toauthorize it. 29A 1984 survey of nurses at neonatal intensive careunits and intermediate care nurseries in Houstonrevealed the predominance of attitudes favorable tothe denial of treatment to infants with disabilities. Inthis survey, approximately 71 percent of the nursesfelt that nurses and physicians should never resuscitatean infant with severe mental disabilities (e.g.,severe brain damage). For infants with such disabilitiesas myelomeningocele or congenital hydrocephalus,approximately 48 percent of the nurses said thatnurses and physicians should only occasionallyresuscitate, while approximately 13 percent of thenurses stated that infants with such disabilitiesshould never be resuscitated. 30 Indeed, approximately37 percent of the nurses in this study "feltthat sometimes a doctor should act in such a way asweight, dehydration, and death, usually within a few days. Mostcases of intestinal atresia and other obstructions of the intestinesare susceptible to surgical correction. Id.28App. B.27Id.28Id.29Id.30Id.

to cause an infant's death," and approximately 31percent of them indicated that the decision whetherto treat a sick newborn child should be influenced bywhether or not there are healthy children at home. 31To test the view advanced by Dr. James Strain,former president of the American Academy ofPediatrics, that "shifts in attitude" in the medicalcommunity have resulted in more frequent treatmentfor infants with disabilities who have life-threateningconditions, making earlier studies obsolete, 32 Turnbullsurveyed more recent medical literature expressingcontemporary health care providers' attitudestoward appropriate treatment responses to thebirth of newborn children with disabilities. He foundsuch literature to be "overwhelmingly in favor ofdenying treatment to those deemed to lack asufficient 'quality of life.'" 33 Turnbull quoted fromnearly two dozen articles and books, all authored byphysicians, to show the predominance in the contemporarymedical community of the belief that a"low quality of life ethically justifies or evenmandates letting some children with disabilitiesdie. . . ." 34Turnbull focused on two examples reinforcing theconclusion that numerous unwarranted deaths ofchildren with disabilities have resulted from thecurrent hegemony of the "quality of life. . .over theequality of life" ethos in the medical community. 35One was a study of the disparate treatment over aperiod of 6 years of two groups of individualsaffected with a potentially life-shortening heartmalformation. The prospects for successful surgicalcorrection of this malformation decrease over timeto the point of disappearance, making early actionvital. The study found that all children with theheart malformation but without Down syndromewere referred for surgical correction or treatment atan appropriately early age. However, 10 out of 28children who had both the heart problem and Downsyndrome were not referred until they were beyond1 year of age, with the result that half of thesechildren with Down syndrome had deteriorated tothe point that surgery for their heart condition couldno longer be performed. 3631Id.32Id. (statements of Dr. James Strain, former President of theAmerican Academy of Pediatrics, which conducted the 1975 pollcited in app. B).33Id.34Id. Articles and books excerpted at id.35Id. (phrase used by Dr. Robert M. Blizzard, Chairman,Department of Pediatrics, University of Virginia School ofMedicine).The other example was the practice at Children'sHospital of Oklahoma in which a quality of lifeformula served explicitly as part of the basis fordenying treatment to 24 of 69 infants with spinabifida, an approach that resulted in their death. 37The Commission relies heavily on the materialTurnbull assembled in assigning considerable weightto his conclusion that: "It is obvious that manyhealth care professionals still feel that there arecircumstances in which it is proper to deny medicalcare to children with disabilities. Overwhelmingly,these decisions appear to be based on the doctor'sown opinion regarding the child's 'quality of life'after treatment." 38Investigative ReportingProfessor Turnbull's conclusion is supported byother evidence obtained by the Commission. TheCommission received detailed testimony from aPulitzer and Peabody award-winning investigativejournalist, Carlton Sherwood. He described theapproach taken by himself and the teams workingwith him, as well as their findings.Since 1983 I have authored three separate in-depthseries dealing with so-called Baby Doe cases, two fortelevision and one for print. Roughly speaking, I havedevoted about 18 months of direct field research to thesubject and perhaps another year of study on Babies Doeand the host of related medical, social, legal, and ethicalissues.During the course of my research, I traveled to 28States, visited 19 intensive care hospital nurseries, andinterviewed more than 250 physicians, nurses, lawyers,hospital officials, and parents who, at one time or another,were directly involved in Baby Doe cases.— In all, my research staffs and I reviewed upward of 700cases where there was a probability that infants died as aresult of decisions to withdraw medical treatment. Fromthat number, we targeted 300 cases where there was anadmitted or a high degree of certainty, based on first-handeyewitness testimony, that nonheroic or extraordinarymedical care had been withheld based solely on the real orperceived presence of a mental or physical handicap36Id. at 4-5; Sondheimer, Byrum, & Blackman, Unequal CardiacCare for Children with Down's Syndrome, 139 Am. J. Diseases ofChildren 68 (1985).37Id.38Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 45-46 (1986) (vol. II) (testimonyof Carlton Sherwood).107

Of that 300 we targeted, approximately 120 cases wereacknowledged outright, sometimes in writing, by thephysicians who actually took part in the process. . . .On a secondary level, we were able to documentthrough records and the supporting testimony of otherphysicians, nurses, and parents directly involved, anadditional 27 incidents where beneficial medical care waswithdrawn or withheld because of a real or perceivedmental or physical handicap. 39Sherwood described "the attitude that these childrenare disposable" as "pervasive" among thepediatricians with whom his teams spoke. 40It is sometimes argued that in many instances inwhich treatment was denied to a child with adisability like spina bifida or Down syndrome, thereal basis for denial was the existence of otheranomalies or life-threatening conditions that severelycomplicated the case. This was a claim thatSherwood also frequently confronted.On several occasions, however, I was fortunate enoughto have the medical records. . .and let me tell you whatsome of the other anomalies. . .were.According to the medical charts of one baby boy withspina bifida we looked at, there were the additionalcomplications of a hernia and an ear infection, both ofwhich went untreated.Another spina bifida boy also developed bronchitis, butbecause antibiotics might have saved his life. . ., none wasprescribed to alleviate his chest congestion. He died.A Down's syndrome baby who had an esophagealatresia also suffered from a hernia and a kidney infection.This severely handicapped child died after 23 days; hedied of [de]hydration which, I'm told, is a remarkable featfor any healthy baby. 41Testimony from People with Disabilitiesand Their RelativesThere is a strong impression among many peoplewith disabilities that the medical profession ingeneral is influenced by negative and inaccurateS9Id. at 51-52.40Id. at 48-49.41Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 103 (1986) (vol. II) (testimonyof Ed Roberts, President, World Institute on Disability). See alsoid. at 176 (testimony of Prof. Irving Kenneth Zola, Department ofSociology, Brandeis University) ("I think the medical professionmay be less well-equipped than other segments of our society tomake judgments as to what is the quality of life. This is based onat least a quarter of a century of experience of teaching at medicalschools and looking at. . .who ultimately becomes a physicianand the training to which they are exposed.")stereotypes about them. Ed Roberts, who uses awheelchair and a respirator, testified: "Disabilitycreates its own stigma, [its] own fear; people react toit in different ways, but most of it often manifestsitself in prejudice. . . .The medical profession isamong the worst in this area; they see the worst." 42John Kemp, who also uses a wheelchair, presented asimilar view:[A]s chairman of the Board of Access Living, an independentliving center in Chicago, I work very closely with theCEO of that organization, who is a quadraplegic [sic]female. We regularly conduct training programs for theUniversity of Illinois Medical School for the doctors andto-be doctors there, and we are continually astounded atthe naivete of the medical profession regarding the rightsof and services for disabled individuals. Her problems, ifthey are female in nature, are usually referred to a physicalmedicine and rehabilitation person only because of herquadraplegia, and this phenomenon continues to astoundher and infuriate her. That is symptomatic of the medicalcommunity, and I would say I have heard this commenton numerous occasions dealing with people who aredisabled, that the disability becomes the primary focus ofthe medical attention, when, in fact, they may be in needof medical services unrelated to their physical disability ormental disability. 43The Commission heard testimony reporting thatphysicians who diagnose muscular dystrophyaround age 4 or 5 frequently describe it as a terminaldisability, without revealing that if a respirator isused, the person might well live a normal lifespan. 44Mental retardation evokes similar responses.In a paper by Ann and H. Rutherford Turnbull on theethics of early intervention, the authors talk about theparents of a profoundly retarded young man of 15 whowere frequently asked by the physicians who wereworking with the. . .youngster, whether they really wantedto continue with kidney dialysis or blood transfusions.Would those physicians have asked such a thing, evendared ask such a thing of the parents of any other 15-yearoldminor child without a disability? Of course not. 4542Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 123-24 (1986) (vol. II) (testimonyof John Kemp, Director of Human Resources, National EasterSeal Society). See also id. at 132.43Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 107 (1986) (vol. II) (testimonyof Ed Roberts, President, World Institute on Disability).44Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 127 (1986) (vol. II) (testimonyof Adrienne Asch, Adjunct Lecturer in Social Psychology, CityCollege of New York).45Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 8 (1985) (vol. I) (testimony of C.108

Surgeon General Koop testified that most of theproblems concern the child with mental retardation"who has a problem that will kill him withoutsurgery. . . ." 46There was particular objection to the terminologyoften used by health care personnel. "The absurdityof calling disabled people of any age defective is likecalling us cars and. . .there is an implied warrantythat's been breached in some way. We're notproducts or appliances, we're people, and I don'tthink we're defective." 47Research by sociologist Dr. Rosalyn BenjaminDarling tends to confirm these impressions:[P]hysicians lack information about the experience ofliving with disability. They too have been exposed tosocietal stigma towards the disabled, resulting in attitudeslike these expressed by pediatricians I interviewed: "It ishard to find much happiness in this area. The subject ofdeformed children is depressing. Other problems I can bephilosophic about; as far as having a mongoloid child, Ican't come up with anything good it does. There's nothingfun or pleasant. It's somebody's tragedy. I can find goodthings in practically everything, even dying, but birthdefects are roaring tragedies. Death doesn't bother me, butthe living do." 48Darling pointed out that physicians are traditionallytrained to seek to heal, and that when adisability will persist in spite of lifesaving treatment,some do not feel rewarded. She quoted a pediatricianshe interviewed: "I don't really enjoy a reallyhandicapped child who comes in drooling, can'twalk, and so forth. Medicine is here to perfect thehuman body. Something you can't do anythingabout challenges the doctor and reminds him of hisown inabilities." 49The parent of a 24-year-old man who has mentalretardation testified that in April 1986 she took himto an Ohio physician because he was experiencingsevere side effects from medication: "[The physi-Everett Koop, M.D., Surgeon General, U.S. Public HealthService).46Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 133 (1986) (vol. II) (testimonyof John Kemp, Director of Human Resources, National EasterSeal Society).47Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 181 (1986) (vol. II) (testimonyof Dr. Rosalyn Benjamin Darling, Director, Early InterventionServices, City Council Clinic in Johnstown, Inc.).48Id. at 181. Cf. Alexander, Medical Science Under Dictatorship,241 New Eng. J. Med. 39, 45 (1949) ("The original concept ofmedicine and nursing was not based on any rational or feasiblelikelihood that they could actually cure and restore but rather.. .motivated by the compassion in alleviating suffering.").cian] said it really wasn't important because he wasmentally retarded. . . ." 50 She also described beingon a panel with pediatric neurologists in Colorado in1984 during which the physicians, when asked theconditions under which they would perform lifesavingsurgery for any child, insisted that the criteriaare different "when the child is mentally retarded." 51Recent Medical LiteratureAnother approach to determining the extent ofthe problem is to consider how pervasive articulatedsupport for denial of treatment may be. The Turnbulltestimony appended to this report documentswith numerous quotations and citations his conclusionthat in the recent medical literature the "commentaryon the issue is overwhelmingly in favor ofdenying treatment to those deemed to lack asufficient 'quality of life.'" 52When made aware of the legal requirementsconcerning discriminatory denial of treatment,health care personnel sometimes seem more interestedin ensuring that no one finds out about theirviolations than in implementing them. After a case inDanville, Illinois, in which Siamese twins wereinitially denied surgery, food, and water until publicexposure by a whistle blower led to criminalproceedings, the American Medical News quoted Dr.L. W. Tanner as saying, "[I]f hospital business hadstayed within hospital walls, perhaps the state wouldnever have been called in." The article went on toreport: "Since the twins' birth, the hospital hasintensified its courses on confidentiality, particularlyfor new employes, and has reminded physicians tobe cautious when discussing cases when they mightbe overheard." 5349Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 257-58 (1986) (vol. II) (testimonyof Margaret Burley, Director, Ohio Coalition for the Educationof Handicapped Children).10Id. at 259.51See app. B. It is noteworthy that, contrary to some suggestions,negative quality of hie assessments continue to be givenconcerning those with Down syndrome and spina bifida, oftencharacterized as the "easy cases." Protection of HandicappedNewborns: Hearing Before the United States Commission on CivilRights 44-45 (1986) (vol. II) (testimony of Prof. H. RutherfordTurnbull, Department of Special Education, University of Kansas).58Siamese Twins' Case "Devastates" MDs, Am. Med. News, Oct.9, 1981, at 1, 15-16.53App. B.109

Conclusionphysicians set forth in their professional journals allThus, the surveys of health care personnel, the combine to suggest the likelihood of widespreadanalysis submitted to the Commission by Professor denials of lifesaving treatment to children withTurnbull, the results of investigative reporting, the disabilities that have continued since implementationtestimony of people with disabilities and their of the Child Abuse Amendments of 1984 on Octoberrelatives, and the repeatedly declared views of 1, 1985.110

Chapter 10Child Protective Services Agencies andEnforcement of the Child AbuseAmendments of 1984Principal enforcement responsibility for the ChildAbuse Amendments (CAA) of 1984 resides withState Child Protective Services (CPS) agencies, thevariously named entities that exist to administer eachjurisdiction's child abuse and neglect laws. 1 Undercurrent law, the fate of children with disabilitieswho are threatened with denial of lifesaving medicaltreatment, food, and fluids largely depends on howeffectively CPS agencies carry out this responsibility.Alternative avenues are scarce. Direct Federalefforts to prevent this type of medical discriminationto date have been stymied by the Supreme Court.Ruling in Bowen v. American Hospital Association, theCourt enjoined the Federal Government from directregulation and investigation, under section 504, of"instances in which parents have refused consent totreatment." 2 The ability of private organizations orindividuals to mount legal challenges to denial oftreatment is restricted because in many States thereare severe limitations on private standing to challengethreatened denials of treatment. 3CPS Delegation of InvestigativeResponsibilityForty-eight jurisdictions receive Federal fundsfrom the Department of Health and Human Servicesunder the Child Abuse Prevention and TreatmentAct. A review of their policies and procedures hasshown that, on their faces, the policies of 14 of theseStates explicitly abdicate to internal hospital infantcare review committees or hospital staffs the authorityto decide whether illegal denial of treatment is1Child Abuse and Neglect Prevention and Treatment Program,50 Fed. Reg. 14,878, 14,878 (1985).* 476 U.S. 610, 625 n. 11 (1986). See chap. 6, text accompanyingnotes 109-135, and chap. 12, text accompanying note 65, forfurther discussion of this decision.sIn forty-four. . .jurisdictions. . .anyone may bring thematter to the court's attention. However, [12 jurisdictions].. .place some limitation upon who may bring thematter to the court's attention. Even in the other jurisdictions,just because the matter may be brought to the court'sattention by an attorney or his or her client does not meanthat a hearing before a judge will necessarily be had. A littleover half of the jurisdictions surveyed employ some type ofpetition screening process. . . .In some jurisdictions the statechild protection agency investigates, in others the countyattorney or district attorney. In yet others, a court staffperson is charged with conducting the investigation. Theinvestigator often has authority to dismiss the petition, allowthe petition to be filed or "informally adjust" the matter.National Legal Center for the Medically Dependent and. Disabled,The Medical Treatment Rights of Children with Disabilities§8.01 (1987) (available from the Legal Services Corporation).Ill

taking place when a report of suspected denial oftreatment is received by the State agencies. 4Federal regulations, however, require that StateCPS agencies make the determination whethertreatment is medically indicated under the ChildAbuse Amendments. The existence of hospital-administeredinfant care review committees (ICRC)does not relieve a State CPS agency of its responsibilityto investigate suspected cases of withholdingof medically indicated treatment or to employ itslegal authority to prevent such withholding:[T]he existence and activities of the ICRC do not amendthe responsibilities under State law of medical professionalsand the hospital to report to the child protectiveservices agency suspected instances of medical neglect(including the withholding of medically indicated treatmentfrom disabled infants with life-threatening conditions).. . .Although the child protective services agencyand the ICRC are to be guided by similar principles andstandards regarding the best interests of the child, theDepartment [of Health and Human Services] believes theyhave separate and distinct functions. The primary functionof the ICRC in this context is to offer counsel to theattending physician(s), the hospital and the family toassure that the parents have the benefit of prudent,knowledgeable and professional evaluations, recommendationsand services, consistent with appropriate medicalstandards, to assist them in making sound decisionsregarding the welfare of their child. The function of thechild protective services agency is to determine thosecircumstances in which the power of the State must beinvoked to protect the infant, and then to take appropriateaction to do so. 5Section 5103(2) of the Child Abuse Preventionand Treatment Act of 1978 provides: "In order for aState to qualify for assistance under this subsection,4Ala. Dep't of Pensions and Sec., I Family and Children's Servs.Manual, Pt. VII-53 (Rev. May 1988); Alaska Division of Familyand Youth Services, Child Protective Services Policy Manual tits.300. §5.045(c)(l) & (d)(l) (January 1987); Ariz. Dep't of EconomicSec. Policy 5-55-8.E.1 (May 1988); Del. Dep't of Servs. forChildren, Youth and Their Families, Policy on Medical Neglectof Handicapped Infants at 2 (August 1986); Fla. Dep't of Healthand Rehabilitative Servs., Health and Rehabilitative ServicesPamphlet 175-1, §3.4.17 (July 1988); Ga. Dep't of HumanResources, Guidelines for Medical Neglect of Disabled Infants,Introduction, 1J3 (undated); Haw. Dep't of Social Servs. andHousing Policy Manual Ch. 1100.9.2 (June 1987); Memorandumfrom Sandy Hodge, Me. Child Protective Servs. ProgramManager, to Regional Program Managers for Child and FamilyServs. (incorporating Action for Child Protection Fact Sheet at 3,question 7) (Apr. 16, 1985); Mich. Dep't of Social Servs. ManualBulletin, Children and Youth, No. 86-11 at 46 (Rev. Nov. 3,1986); Nev. State Welfare Div. Serv. Manual §417.1 l(c)(4)(September 1985); N.M. Human Servs. Dep't., Social Servs. Div.Procedure §4.8.3.2.1. (Oct. 1, 1987); Wash. Dep't of Social AndHealth Servs., Div. of Children and Family Servs. Manual ch.26.33 F.(5)(b) (March 1987); Memorandum from Rozella Archer,such State shall. . .provide for the reporting ofknown and suspected instances of child abuse andneglect;. . ." 6 The implementing regulations requirethat programs receiving Federal funds mustprovide for "[p]rompt notification by individualsdesignated by and within appropriate health carefacilities of cases of suspected medical neglect(including instances of the withholding of medicallyindicated treatment from disabled infants with lifethreateningconditions);. . ." 7 Subsection1340.14(d) requires that "the State must provide forthe prompt initiation of an appropriate investigationby a child protective agency or other properlyconstituted authority to substantiate the accuracy ofall reports of known or suspected child abuse orneglect." 8Shortly after the adoption of the Child AbuseAmendments, Professors Nancy Rhoden and JohnArras openly challenged hospital infant bioethicscommittees to "educate" local CPS agency personnelso that they "come to appreciate all of themorally relevant factors involved and will, accordingly,defer to the decisions made by parents,doctors, and committees, except in cases where thechild's best interests are clearly being threatened."The objective of such "education" is to encouragehospital committees "occasionally [to] condone nontreatmentin circumstances not contemplated" bythe Child Abuse Amendments of 1984 and theirimplementing regulations. 9One State CPS worker told Commission staff thatthere had been "only one reported case in the 3years I've been here. Of course, we hear through theDirector, Servs. to Families and Children, W. Va. Dep't ofHuman Servs. to Area Administ., Social Serv. Coordinators [and]Child Protective Servs. Supervisors, Child Protective Servs.Policy pt. 2 f2, pt. 3 (Aug. 28, 1986).5Services and Treatment for Disabled Infants; Model Guidelinesfor Health Care Providers To Establish Infant Care ReviewCommittees, 50 Fed. Reg. 14,893, 14,900-01 (1985).642 U.S.C.A. §5103(bX2XB) (West 1983).745 C.F.R. §1340.15(c)(2)(ii) (1987).845 C.F.R. § 1340.14(d) (1987). The entity being investigated ishardly a "properly constituted authority" to conduct the investigation.9Rhoden & Arras, Withholding Treatment From Baby Doe: FromDiscrimination to Child Abuse 63 Milbank Mem. Fund. Q. 18,47-48 (1985) (emphasis in original). Similarly, Thomas Murrayhad confidently predicted that the Child Abuse Amendments of1984 and their implementing regulations would be of purely"symbolic" importance because in practice "the impact of thelegislation and rule will be minimal." Murray, The Final Anti-Climactic Rule on Baby Doe, Hastings Center Rep., June 1985, at5, 6-7.112

grapevine from medical personnel of cases that gounreported." 10 A Florida administrator stated, "Isuspect that these cases are occurring in the State ofFlorida, but that the hospitals are handling thesituations appropriately—which is the best of allworlds, really." 11 An administrator for the Districtof Columbia declared that "all of these cases havebeen resolved at the hospital level and we have notbeen called in." 18When State CPS agencies do not delegate theirauthority to internal hospital committees, they sometimesdelegate it to the same organized elements ofthe medical profession who have strongly objectedto the Child Abuse Amendments. In Nebraska, theState CPS agency simply turned over principalresponsibility for evaluating reports of such denial tothe State chapter of the American Academy ofPediatrics. 13On September 30, 1985, Dr. Kenton Shaffer, on behalfof the Committee on Maternal and Child Health of theNebraska Medical Association and the Fetus and NewbornCommittee of the Nebraska Chapter of the AmericanAcademy of Pediatrics, notified the Nebraska Departmentof Social Services (DSS) that an Ad-Hoc ResourceCommittee had been formed to offer assistance to DSS inevaluating cases of suspected medical neglect of infantsborn with a handicapping condition. . . .Gina Dunning, state director of the DSS, accepted thisoffer on October 8, 1985, and entered into an agreement.. . .The DSS will refer all reports to the Ad-HocResource Committee, which will supply consultativeservices 24 hours a day, at no charge to the department. 1410Telephone interview with Michelle Gore, CPS Specialist,Kentucky Department for Social Services (July 21, 1988).11Telephone interview with Chris Christmas, Senior HumanServices Specialist, Florida Department of Health and HumanServices (July 25, 1988).12Telephone interview with Carolyn Smith, Chief of Intake forProtective Services, District of Columbia Department of HumanServices (Aug. 9, 1988).13See chap. 6, and text accompanying notes 59-62, 70, for adescription of the position taken by the American Academy ofPediatrics on government intervention to protect children withdisabilities.14Eggert, Shaffer & Bausch, Baby Doe—The Saga Continues,Neb. Med. J., April 1986, at 103, 103-104. Commenting on a draftof this report, the Nebraska Department of Social Services tookissue with the "inaccuracy" of these statements, stating: "Whilethis Committee of experts MAY provide consultation to theDepartment regarding planning for and intervention steps of theinvestigation, by no means has the '. . .state CPS agency simplyturned over principal responsibility for evaluating reports of suchdenial to the state chapter of the American Academy ofPediatrics.'" Letter from Kermit R. McMurry, Director, NebraskaDepartment of Social Services, to William J. Howard, GeneralCounsel, U.S. Commission on Civil Rights (Oct. 3, 1988)(emphasis in original). However, the letter concedes that casesThe Arkansas Department of Human Services,Division of Children and Family Services, seems torely almost entirely for enforcement on the ArkansasChildren's Hospital. The hospital has estimated it"treat[s] 90-95 percent of the 'Baby Doe' cases inthe entire state." 15 The State agency even contractedwith the hospital to provide training workshopsfor its own "agency attorneys and child protectiveservice workers." 16 It worked with the hospital indeveloping its procedures, without input or consultationfrom disability groups. 17 The "independent"physician who advises the State agency aboutwhether medically indicated treatment is in factbeing withheld is also selected by the hospital. 18 Inother words, in 90 to 95 percent of the cases, thehospital under investigation for medical neglect ispermitted to name the "independent" medical authoritywho will rule on whether the course oftreatment or nontreatment is proper.Special Relationship Among CPSAgencies and DoctorsThis widespread and remarkable readiness of CPSagencies to surrender their arms-length oversightresponsibility concerning medical neglect appears inpart to be rooted in the special relationship that hasdeveloped between CPS workers and many membersof the medical profession. In dealing withtraditional forms of child abuse and neglect, CPSagencies rely primarily on health care professionalsfor diagnosis and reporting. These include situations"may require independent consultation from practicing, specializedphysicians which are available to the Department under anagreement with the Committee on Maternal and Child Health ofthe Nebraska Medical Association." Id. Furthermore, the Nebraska"Central Office Procedures in Regard to a Report ofSuspected Medical Neglect of an Infant Born with HandicappingConditions" state that upon receiving notification of such a reportCPS agency staff "will immediately contact a representative ofthe Ad-Hoc Resource Committee for consultation of the report"and that based on "discussion and consultation with the Ad-HocResource Committee" the agency general counsel will be contactedfor a legal opinion. These procedures do not makeinvolvement of the Ad-Hoc Resource Committee optional; theymake it mandatory. It is clear that the agency's reaction to anyreport is heavily dependent on the advice of the Ad-HocResource Committee.15Letter from Bobbie Ferguson, Acting Administrator, ChildProtective Services, to Mr. Tommy Sullivan, Regional Director,Administration of Children, Youth and Services 2 (Apr. 10, 1986)(available in files of U.S. Commission on Civil Rights).16Id at 1.17Telephone interview with Sandra Haden, Arkansas Departmentof Human Services, by Dr. Leon Bourke (June 10, 1987).18 Id.113

where the parents say "the child fell down thestairs" but the bones were in fact broken by theparents, or where the child has been neglected to thepoint of exhibiting "failure to thrive" syndrome.Medical witnesses before the Commission repeatedlyemphasized this point. An attorney for theAmerican Hospital Association (AHA) testified:from the internal hospital's point of view, one of thereasons AHA participated in the Child Abuse Amendments—afterfiling suit, of course, on 504—was the factthere was a possibility of dealing with these difficultdecisions by building upon existing collaborative relationshipswithin the hospital between the social workers andthe child protective agency people. 19The contrast between the receptivity of most CPSag*encies to views from medical organizations—someof whose numbers were responsible for abuses theChild Abuse Amendments were enacted to curtail—and to views from disability organizations—thegroups representing those whom the amendmentswere designed to protect—is striking. According toa survey conducted by the journal Issues in Law andMedicine, of 37 responding jurisdictions, 34 said thatthey had consulted with medical representatives informulating their implementing procedures, whileonly 11 said they had consulted with disabilitygroups. 20CPS agencies have clearly been anxious not tooffend the physicians whose discrimination they aresupposed to be preventing. When the law thatbecame the Child Abuse Amendments of 1984 wasfirst proposed, the CPS agencies' national lobbyingorganization, the National Council of State PublicWelfare Administrators, opposed it in part because"the good working relationship between socialworkers and physicians could be jeopardized." 21Any belief that the amendments would lead to thedevelopment of an oversight (let alone an adversary)relationship with the medical profession hardlyseems to have been justified. One physician whotestified before the Commission was openly confidentthat, despite the Child Abuse Amendments,CPS agencies would do little to question nontreatmentdecisions:In terms of the workings of the Child Abuse Amendments,many of us have long worked with people in childabuse. We're used to that system and we would besurprised if it were an overwhelmingly interfering system.That is to say, they have their hands full with child abusein the community as it is, and one doesn't expect that theywill be doing a lot of newborn investigation by and large. 22Indeed, in over a third (17) of the jurisdictionsreceiving Federal funding, the State CPS agenciestold the Health and Human Services Office ofInspector General either that "Baby Doe fundscould be put to better use on general child protectiveprograms, medical neglect or other prioritiesidentified by States" or that the "Baby Doe problemis too small to warrant special Federal funds orattention." 2319Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 54 (1985) (vol. I) (testimony ofMary Ahem, Attorney, American Hospital Association). AccordTestimony of Dr. James Strain, American Academy of Pediatrics("We, the medical profession, have a good relationship with childabuse agencies in the State. We have worked closely with them inthe past. Of course, the reporting many times of child abusecomes from physicians.") Id. at 45. Testimony of Evan J. Kemp,Jr., Director, Disability Rights Center ("I think there's a bit of aproblem in basing too [many] resources in the child abuse statute.Basically those statutes were set up so that doctors could reporton parents that abuse their children, and this situation is sort ofthe reverse. We're asking them now to report on doctors who aredenying treatment, and I think this whole setup is bad for theprotection of infants born with disabilities.") Protection of HandicappedNewborns: Hearing Before the United States Commission onCivil Rights 36 (1986) (vol. II); testimony of Carlton Sherwood("In my experience, the State child abuse. . .workers. . .workhand-in-glove with the local hospitals for child abuse reports;they're one and the same. Some of the State child abuse agenciesactually have offices in the hospitals where they actually workright there so the physicians can report something. They knowthese guys, they work with them.") Id. at 61.20Interview with Dr. Leon Bourke, Issues in L. & Med. (Nov.30, 1987). All the jurisdictions which consulted disability representativesalso consulted medical representatives. One additionalresponding jurisdiction indicated it "probably" had contacteddisability representatives. Those responding on behalf of threeother jurisdictions said either that the jurisdiction had consultedno one or that they didn't know who, if anyone, had beenconsulted. Id.21Bopp & Balch, The Child Abuse Amendments of 1984 and TheirImplementing Regulations: A Summary, 1 Issues in L. & Med. 91,104 n.66 (1985).22Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 240-41 (1986) (vol. II) (testimonyof Patricia Ellison, M.D.). Dr. Walter Owens, the physician inthe Bloomington Infant Doe case, was on the same panel as Dr.Ellison. He immediately said, "I would endorse Dr. Ellison'sstatement completely." Id. at 241. Cf. testimony of CarltonSherwood ("Why do you think the AMA and the rest of theseorganizations are willing to let the State child abuse agency comein and look at anything they want to but not somebody fromHHS? They're friends. They work together. . . .") Id. at 61.23Office of Inspector General, Department of Health andHuman Services, Survey of Baby Doe Programs 11 (1987).114

CPS Agencies' Failure to Comply withFederal RegulationsThe delegation of significant investigational responsibilityby watchdog agencies to those they aresupposed to be watching is perhaps the most seriousform of widespread noncompliance by CPS agencieswith the medical discrimination regulations it is theirduty to implement. It is not, however, the only one.In direct contravention of the governing regulations,six States' CPS agencies have no writtenpolicy specifying the manner in which they wouldobtain medical records to investigate a report ofmedical neglect. 24In addition, Federal regulations require that StateCPS systems must have the ability to obtain: "[a]court order for an independent medical examinationof the infant, or otherwise effect such an examinationin accordance with processes established underState law, when necessary to assure an appropriateresolution of a report of medical neglect (includinginstances of withholding of medically indicatedtreatment from disabled infants with life threateningconditions)." 25 Yet 10 States' CPS agencies havepolicies that fail to provide for securing an independentmedical examination of a child with a disabilityabout whom a report of a suspected medical neglecthas been filed. 26The impression that some States pay little or noattention to the standards of treatment embodied inthe Federal law and regulations is reinforced by thefact that 11 States' CPS agencies have policies thateither misdefine the term "withholding of medicallyindicated treatment," do not define it at all, or definethe term in such an abbreviated fashion as to inviteambiguity and uncertainty. 27 In fact, Utah's CPSagency went so far as to create a new exception.Under its procedures, medical treatment need not beprovided when "in the treating physician's judg-24These States are Alabama, Arkansas, Connecticut, Georgia,Mississippi, and New York.2545 C.F.R. §134O.15(4Xii) (1987). The term "independent"connotes an individual free from the influence, guidance, orcontrol of another. A hospital's own physicians, such as thoseserving on its ICRC, therefore cannot qualify as an "independent"source for the CPS agency. Each State's CPS system mustconstruct its own bank of independent medical consultants.26These States are Arkansas, Connecticut, Florida, Georgia,Hawaii, New York, Mississippi, Oklahoma, Utah, and Washington.Missouri's CPS agency will secure a court order for anindependent medical examination only if the parent(s) do notconsent and/or the attending physician disagrees with therecommendation of the ICRC. Missouri Division of SocialServices, Division of Family Services, Children's Section Specialment. . .the treatment itself under such circumstanceswould be inhumane." 28A majority of the States reviewed are not evenclear in their policies concerning who is covered bythe standards of treatment in the act. The ChildAbuse Amendments standard of treatment applies to"disabled infants with life-threatening conditions." 2945 C.F.R. §134O.15(b)(3)(i) (1987) provides:The term "infant" means an infant less than one year ofage. The reference to less than one year of age shall not beconstrued to imply that treatment should be changed ordiscontinued when an infant reaches one year of age, or toaffect or limit any existing protections available underState laws regarding medical neglect of children over oneyear of age. In addition to their applicability to infants lessthan one year of age, the standards set forth in paragraph(b)(2) of this section [defining "withholding of medicallyindicated treatment"] should be consulted thoroughly inthe evaluation of any issue of medical neglect involving aninfant older than one year of age who has been continuouslyhospitalized since birth, who was born extremelyprematurely, or who has a long-term disability.Twenty-four State CPS agencies have policiesthat either do not define the term "infant" or—indirect contravention of the governing regulations—define the term to encompass only infants of lessthan a year in age. 30CPS Attitudes to Treatment PrinciplesThere have also been a number of indications thatsome State CPS agency personnel are unsympatheticto the principles of treatment embodied in theChild Abuse Amendments.When a bill that, in modified form, would becomethe Child Abuse Amendments was first beforeCongress, the national organization which representsCPS agencies conceded that "child protectiveservice agencies should appropriately intervene incases where it is alleged that medically beneficialtreatment is being denied to handicapped infants."Child Abuse/Neglect Investigation Procedure: Baby Doe, A-7,P (Oct. 1,1986) (available in files of U.S. Commission on CivilRights).27These States are Arizona, Iowa, Mississippi, Montana, NewJersey, New York, Oklahoma, Oregon, Utah, Washington, andWest Virginia.M Utah Division of Family Services, Department of SocialServices, Division of Family Services Policy and Procedures forImplementation of "Baby Doe" Legislation Pt. II-B (3).2845 C.F.R. §1340.15(a) (1987).30 These States are Alabama, Alaska, Arizona, Delaware, Maine,Maryland, Minnesota, Mississippi, Missouri, Montana, New Jersey,New York, North Dakota, Ohio, Oklahoma, Oregon, SouthDakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington,and West Virginia.115

Nevertheless, the organization opposed the bill,emphasizing that:Cases involving the denial of health care for handicappedinfants should not automatically be defined as child abuseor neglect. These decisions are most often the result ofdifficult medical/ethical judgments made by both theparents and doctors, and not instances of willful abuse orneglect resulting from malice or ignorance. 31A 1987 Health and Human Services InspectorGeneral's report found that personnel at 11 of 49State CPS agencies took the position that "[b]ecauseof medical and ethical issues involved, CPS responsibilityfor Baby Doe cases is not appropriate," and10 others were unwilling to state whether theyregarded such responsibility as appropriate or not. 32CPS agencies are largely staffed by social workers.A witness before the Commission, Mary JaneOwen, director of Disability Focus, Inc., reviewedthe literature of the social work profession. Althoughshe found articles that discussed how to help"so-called healthy families deal with the tragedy ofhaving a flawed infant or child," she found nomaterial giving any positive picture of life withdisabilities or describing the maximization of thepotential of people with disabilities. 83 Social psychologistAdrienne Asch testified:[SJocial workers, like everybody else, are brought up in aculture that devalues people with disabilities. And there'sno reason to think that they're not going to bring thatdevaluing right to their work and they say, "These poorparents, I really understand why they don't want to treatthis child. It's not really child abuse. I don't care what thelaw says. It is really understandable. The child is going tobe a great burden." 34Individual expressions of a negative attitude byCPS personnel toward the mission implicit in theirresponsibilities under the Child Abuse Amendmentsof 1984,are not hard to find. For example, whenasked if there had been any reports of withholding ofmedically indicated treatment in Texas in the pre-31Statement of the Role of Child Protective Services Agencies InCases Involving Denial of Health Care for Handicapped Infants,Resolution of the National Council of State Public WelfareAdministrators of the American Public Welfare Association, May11, 1984, cited in Bopp & Balch, The Child Abuse Amendments of1984 and Their Implementing Regulations, 1 Issues in L. & Med.104 n.66 (1985).32Office of Inspector General, Department of Health andHuman Services, Survey of Baby Doe Programs 11 (1987).33Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 146 (1986) (vol. II) (testimonyof Mary Jane Owen, Director, Disability Focus, Inc.).34Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 147-48 (1986) (vol. II) (testimo-116ceding year, the CPS administrator there replied,"Are you kidding?" and described the Baby Doequestion as "a misunderstood issue caused by anextraordinary event in Bloomington, Illinois. Thisissue is primarily an issue related to parents' andphysicians' decisions concerning treatment of thechild—it is a medical issue, not a political issue." 35Similarly, when a court action was initiated inOregon to prevent the starvation of a terminally illchild with a disability, the CPS reaction was hostile:Karen Green, a state assistant attorney general for theChildren's Services Department, said the reaction to theintervention. . .was "outrage. . .that a family which hadthe trauma of having a deformed child in the first placeshould then be dragged into court and have it suggestedthat they are not being proper parents. . . .The people Ihave spoken to are unhappy," she said. 36Even in well-publicized cases, State CPS agencieshave repeatedly been reluctant or unwilling to act toprotect children with disabilities from denial of lifepreservingtreatment. In the original "Infant Doe"case in Bloomington, Indiana, the local CPS agencywas appointed by the trial judge to act as the child'sguardian ad litem for the purpose of consideringwhether to appeal from his ruling supporting thedeath of the child. The agency considered the caseand declined to appeal it. 37The Connecticut CPS agency has an agreementfor shared responsibility with the Connecticut Departmentof Health Services "with regard to coordinationand consultation with health care facilitiesproviding inpatient newborn care and response toreports of medical neglect (including instances ofwithholding of medically indicated treatment fromdisabled infants with life-threatening conditions).. . ." Under that agreement, the health servicesdepartment has the responsibility to "[r]eviewand approve health care facility policies concerningthe care of critically ill/handicapped newborns." 38ny of Adrienne Asch, Adjunct Lecturer in Social Psychology,City College of New York).35Telephone interview with David Brock, Child ProtectiveServices Manager, Texas Department of Human Services (July29, 1988).36Hilts, Brain-Damaged Baby Dies Amid Court Fight OverTreatment,3.37Washington Post, Apr. 23, 1983, at A2, cols. 1-5, col.Telephone interview with James Bopp, Jr., Attorney forRobert and Shirley Wright, a couple who sought to adopt InfantDoe (Nov. 30, 1988).38Connecticut Department of Children and Youth Services,Agreement Between the Connecticut Department of HealthServices and the Connecticut Department of Children and Youth

In 1981 a State legislative committee asked theConnecticut Department of Health Services toinvestigate denials of treatment at Yale-New HavenHospital and in other hospitals around the State afterhearings the committee held, stimulated by theinvestigative reporting of the Hartford Courant,documented a pattern of such denial. That patternincluded the starvation of children with Down'ssyndrome (in one case taking 23 days), the provisionof lethal overdoses to parents to give to childrenwith disabilities, and the falsification of death certificatesto cover up such deaths. 39 Instead of acting tostop such practices, the agency responded with areport that took the following positions:Parents may have to choose between caring for adevastated infant and maintaining food, shelter and clothingfor the rest of the family.No one reviewing or making these decisions will be ableto ignore economic considerations of some kind.The state, acting through the legislature, should notattempt to define or interfere with medical practice;. . .The state, acting through the legislature, cannotestablish ethical or moral standards for its citizens toobserve, because of the enormous variety of personalfeelings on the subject which are present in our society.Such laws would be ignored and ineffective. . . . 40Confronted with denial of lifesaving surgery to achild with spina biflda in Robinson, Illinois, theIllinois CPS agency acted to protect the child onlyunder threat of a Federal lawsuit. 41 In the "BabyJane Doe" case, not only did the CPS agency refuseto act, but it provided a letter to the attorneysdefending the denial of treatment stating that thedenial constituted "no credible evidence of neglect."42Although some of the examples above of attitudesof CPS workers antedate the Child Abuse Amend-Services Regarding Medical Neglect of Infants in ConnecticutHealth Care Facilities 1 (Oct. 9, 1985).39See chap. 12 and text accompanying notes 12-33.40Connecticut Department of Health Services, Infant Death:Life and Death in Newborn Special Care Units, 46 Conn. Med. 589,594-95 (1982).ments, there is little reason to conclude that suchattitudes have changed dramatically, given people'sgeneral reluctance to change their views.Conflict of InterestCPS agencies are part of the State government,often in the same department that runs hospitals andother institutions that provide medical treatment tochildren with disabilities. This can create a directconflict of interest for the CPS agency. The "BabyJane Doe" incident is a case in point. Jane Doe wasdenied treatment at University Hospital of the StateUniversity of New York at Stony Brook. The Stateattorney general represented the hospital—arguingnot only against treatment, but even against governmentalinvestigation of the situation. Similarly, theOklahoma CPS agency never investigated or actedto thwart the course of selective denial of treatmentto children with spina bifida at Oklahoma Children'sMemorial Hospital. As James Bopp, Jr., testified, ithad a strong incentive not to do so:In the Oklahoma case. . .the Oklahoma child abuse andneglect State authority is the very same State authoritythat operates the hospital at which the children weredenied medically indicated treatment. You then have asituation in which the two agencies which may beinvolved, one in denying medical treatment and the otherin enforcing and insuring that medical treatment is provided,are within the same department of the State government.It is difficult to believe in that circumstance thatchild abuse and neglect agencies would take enforcementaction against a hospital that is a member agency of itsown State department. 43ConclusionIn sum, the close working relationship betweensome CPS personnel and members of the medicalprofession has resulted in the substantial failure ofmany State child protective service agencies toeffectively enforce the Child Abuse Amendments of1984.41Telephone interview with Robert D'Agostino, former DeputyAssistant Attorney General, Civil Rights Division, Department ofJustice (Dec. 1, 1988).42Letter from William Larson and Jane Raven, Suffolk CountyChild Protective Services, to Paul Gianelli (Nov. 7, 1983).43Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 156 (1986) (vol. II) (testimonyof James Bopp).117

Chapter 11The Role and Performance of Infant CareReview CommitteesThe establishment of infant care review committees—internalhospital committees that considerinstances in which life-preserving medical treatmentis being or may be withheld from infants withdisabilities—is encouraged by the Child AbuseAmendments of 1984, 1 as it was by the finalregulations the Department of Health and HumanServices issued under section 504. 2 A 1986 surveyfound that 51.8 percent of hospitals with either aneonatal intensive care unit or over 1,500 birthsannually had established such committees, and anadditional 8.9 percent were in the process of formingthem. 3Many maintain that using infant care reviewcommittees 4 for advice when denial of treatment isbeing considered is preferable to governmentalinvolvement. Robert Weir makes a typical argument:Simply put, such a committee can work as the third stageof a four-stage process of decision making and review—consisting of parents, physicians, the committee, and thecourts as a seldom-used final stage. The committee canfunction as an advisory board to pediatricians makingdifficult decisions in the neonatal intensive-care unit, aninternal appeals and review board, and an institutional142 U.S.C.A. § 5103 note (West Supp. 1987) (see generally chap.7).2 45 C.F.R. §§ 84.55(a) &(f) (1986) (see generally chap. 6, and thetext accompanying notes 72-77).3University of Connecticut Health Center, Pediatric Researchand Training Center, National Collaborative Survey of InfantCare Review Committees in United States Hospitals 6 (1987)(available from American Academy of Pediatrics) [hereinafterNational Collaborative Survey]. The survey, largely funded bythe National Institute for Disability and Rehabilitation Researchof the U.S. Department of Education, was conducted by theUniversity of Connecticut Pediatric Research and TrainingCenter and the American Academy of Pediatrics. It was sent tocheck on abusive practices. This procedural process ispreferable to having moral decisions in neonatal intensivecare units hamstrung by governmental regulations, and itwill achieve basically the same end: the provision ofmedical treatment to handicapped newborns who needand will on balance benefit from such treatment. 5On the other hand, some disability rights advocatesare skeptical about the effectiveness of suchcommittees in protecting the medical treatmentrights of people with disabilities. For example,Professor James Ellis told the Commission:[A]necdotal evidence suggests they are very hit-andmissas to whether or not they effectively investigate casesthat are like the ones that have been under discussion here,and there is anecdotal evidence to suggest that some ofthem have not been very effective. And to place all of ourcivil rights enforcement resources in such a hit-and-misskind of mechanism when the stakes are so high for the kidsinvolved is distressing. 6HistoryThe genesis of these committees may probably betraced to suggestions made in a 1975 law reviewarticle by pediatrician Dr. Robert Teel. 7 Theconcept was given impetus the following year by theNew Jersey Supreme Court in its In re Quinlan870 hospitals in 48 States, of which 643 (73.9 percent) responded.Id., app. D at 1.4They are also frequently called "ethics committees" andsometimes "patient care review committees."5Weir, Sounding Board[/\ The Government and Selective Nontreatmentof Handicapped Infants, 309 New Eng. J. Med. 661, 663(1983).8Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 35-36 (vol. II) (1986) (testimonyof Prof. James W. Ellis, School of Law, University of NewMexico).7Teel, The Physician's Dilemma: A Doctor's View: What the LawShould Be, 27 Baylor L. Rev. 6, 8-10 (1975).118

decision. 8 The court wrote that the establishment ofsuch committees "would be protective to the hospitalas well as the doctor in screening out, so to speak,a case which might be contaminated by less thanworthy motivations of family or physician." 9However, a study published in March 1983 concludedthat as of that date ethics committees had"not been widely adopted as a means of handlingmedical ethical problems. Only 1 percent of thehospitals in this country. . .have such committees."10Widespread advocacy and then implementation ofethics committees came only in reaction to thepublic outcry over the Bloomington Infant Doe caseand the Federal response under section 504 theoutcry evoked." In November 1983, a journalistdescribed the change in the medical community:Under assault from the federal government. . .theAmerican Academy of Pediatrics (AAP) has quietly butsignificantly changed its position.In the last several months, the AAP has come forwardto say that hospitals should establish ethics committeesmade up not only of hospital staffers but also of communitymembers. These committees would establish proceduresto review cases in which doctors and parents havedecided to forego life-sustaining measures."Historically, the American Academy of Pediatrics hasbeen unwilling to allow outsiders to participate in thedifficult decisions these newborns bring up," said ThomasMurray of the Hastings Center in Hastings-on-Hudson,N.Y., an ethics think tank.Yet, given recent government attempts to intervene intreatment decisions, the medical profession now views"the ethics committee route as the lesser of the evils,"Murray said. 12In 1983 the ethics committee concept was championedby two important sources: the President'sCommission for the Study of Ethical Problems in870 N.J. 10, 355 A.2d 647 (1976), cert, denied, 429 U.S. 922(1976).9Id. at 669. Other courts subsequently spoke with approbation ofethics committees, primarily in the context of cases of potentialtermination of treatment for older patients. See, e.g., In re Colyer,99 Wash. 2d 114, 660 P.2d 738 (1983); In re Spring, 380 Mass. 629,405 N.E.2d 115 (1980); Superintendent of Belchertown StateSchool v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977).10Youngner, Jackson, Coulton, Juknialis & Smith, A NationalSurvey of Hospital Ethics Committees, in President's Commissionfor the Study of Ethical Problems in Medicine and Biomedicaland Behavioral Research, Deciding to Forego Life-SustainingTreatment 443, 448 (1983).Medicine and Biomedical and Behavioral Research,and the American Academy of Pediatrics. In March1983, the President's Commission issued its report,Deciding to Forego Life-Sustaining Treatment. Whilecondemning the denial of lifesaving surgery to achild with Down syndrome 13 (in apparent reactionto the Bloomington Infant Doe case 14 ), the President'sCommission rejected resort to governmentenforcement of section 504 of the Rehabilitation Actof 1973 as contemplated by the then recentlypromulgated Department of Health and HumanServices' "Baby Doe" regulations. 15 Instead, itproposed a process of internal hospital review,including the use of ethics committees:This approach would ensure that an individual or groupwhose function is to promote good decisionmaking reviewsthe most difficult cases [including] those in which adecision to forego life-sustaining therapy has been proposedbecause of a physical or mental handicap, as well ascases where a dispute has arisen among care givers andsurrogates over the proper course of treatment.Such a review could serve several functions. . . .First,it can verify that the best information available is beingused. Second, it can confirm the propriety of a decisionthat providers and parents have reached or confirm thatthe range of discretion accorded to the parents is appropriate.Third, it can resolve disputes among those involved ina decision, by improving communication and understandingamong them and, if necessary, by siding with one partyor another in a dispute. Finally, it can refer cases to publicagencies (child protection services, probate courts, orprosecuting attorneys) when appropriate. Such a reviewmechanism has the potential both to guarantee a discussionof the issues with a concerned and disinterested "representativeof the public" and to insulate these agonizing, tragicdecisions from the glare of publicity and the distortions ofpublic posturing that commonly attend court proceedings.16When it filed its legal challenge to the first set of"Baby Doe" rules, the American Academy ofPediatrics also promoted medical ethics committeesas an alternative. 17 An article by Dr. Norman Fost,11 See, e.g., Cranford & Doudera, The Emergence of InstitutionalEthics Committees, L., Med. & Health Care, February 1984, at 13,14.12Herskowitz, The 'Baby Doe' Dilemma: The Ethics of Life andDeath, Philadelphia Inquirer, Nov. 20, 1983, at ID, cols. 1-2.13President's Commission for the Study of Ethical Problems inMedicine and Biomedical and Behavioral Research, Deciding toForego Life-Sustaining Treatment 6 (1983) [hereinafter President'sCommission Report].14Id. at 224 & n. 92.1518Id. at 225-27.Id. at 227." American Academy of Pediatrics, News Release: PediatriciansOppose Federal Rule on Handicapped Newborns 2 (Mar. 18,1983) (available in files of U.S. Commission on Civil Rights).119

a member of the American Academy of Pediatrics'Infant Bioethics Task Force, which played a keyrole in proposing such committees, makes clear thatthey were designed less to enforce the treatmentstandards of the law than to protect doctors andhospitals from "intrusion" by the government orother outsiders:The theoretic basis for ethics committees is that theyshould be better able to emulate the "ideal ethicalobserver" than could any single individual. Even if theydid not achieve this ideal, however, they might serve thefollowing purposes.Political They offer a mechanism for accountability thatcould avoid less desirable alternatives.Therapeutic. They offer a forum for nurses and otherswho are aggrieved by decisions to express their concernsand feel part of the decisionmaking process. This not onlyhelps professionals who experience suffering, but it mayavoid the whistle-blowing that leads to unwelcome publicityand intrusion.Legal. The risks of civil or criminal liability wouldpresumably be fewer if the responsible physician couldshow his or her decision was reached after extensiveconsultation and deliberation. Consultation should reducethe chance of making decisions that create actual civil orcriminal liability. It is also less likely that charges will bebrought if decisions are seen as resulting from extensiveconsultation and deliberation. Even if charges are brought,the risk of conviction is reduced by demonstrating thatdue care was taken in making a decision.Educational By increasing sensitivity within the institution,committees can presumably improve the ethicalacceptability of complex decisions. 18Central to the rationale for reliance on suchcommittees was the position, taken by both thePresident's Commission and the Academy of Pediatrics,that precise substantive rules about whentreatment should be provided or withheld are18Fost, Treatment of Seriously III and Handicapped Newboms, 2Critical Care Clinics 149, 157 (1986) (emphasis in original). Dr.Fost's justification has been given in its entirety. Three out of fourof the purposes described relate to fending off perceived threatsto medical autonomy.19President's Commission Report, supra note 13, at 217-23.20Id. at 223. See the more detailed discussion of the President'sCommission's approach in chap. 6 at the text accompanying notes40-59.21Strain, AAP Will Fight Rule, Milwaukee Sentinel, July 22,1983, at 6, col. 5.22Strain, The Handicapped Infant, AAP News and Comment,July 1983, at 15. The AAP developed guidelines for suchcommittees. Infant Bioethics Task Force and Consultants, Guidelinesfor Infant Bioethics Committees, 74 Pediatrics 306 (1984)[hereinafter Infant Bioethics Task Force and Consultants]. Dr.inappropriate. The President's Commission arguedthat there are three categories of situations in whichchoices between provision and denial of lifesavingtreatment are made: those in which treatment isclearly beneficial, those in which it is clearly futile,and a gray area in between. 19 The content of thesebroad categories was left deliberately vague. Beyondstating that treatment is clearly beneficial forthose with Down syndrome, the President's Commissionrejected the use of "[supposedly objectivecriteria [which] seems to remove the weight ofresponsibility too readily from those who shouldhave to face the value questions—parents and healthcare providers." 20 In effect, the President's Commissionconcluded that because no hard and fast rulesshould be established for the gray area, the bestapproach to making appropriate decisions in individualcases would be to foster a process in which allinformation would be weighed by compassionateand knowledgeable individuals from a variety ofbackgrounds. This could best be achieved throughthe use of hospital ethics committees.The American Academy of Pediatrics groundedits support for ethics committees in a similar analysis."[I]t is impossible to develop a consensus onwhich infants within a broad range should betreated," the organization's president, Dr. JamesStrain, wrote. "The academy believes these difficultmedical decisions should be made only after athorough review, including consultation with a localmedical review committee." 21 Dr. Strain emphasizedthat the committees should operate in the areaof ambiguity: "It is the management of the. . .'inbetween' group where indications for unusual medicalor surgical care are uncertain. . .which shouldbe reviewed by an ethics committee at the localhospital level." 22Strain's perspective on the role of ethics committees did notchange following the adoption of the Child Abuse Amendmentsof 1984. Addressing a December 1985 Colorado conferenceintended to examine implementation of the regulations issuedunder the amendments, he did not discuss the standard of careestablished by the amendments as the basis for committeedeliberations, but rather repeated the view that treatment decisionsfall into the categories of "clearly beneficial,.. .futile[,]. . .and that in which the burden of treatmentmust be weighted against the benefits—that 'gray area' ofdecisionmaking. Parents, physicians and IBCs will be called on todetermine the best course of treatment." Strain, Bloomington toHere: A Brief History of the Baby Doe Regulation, in The Centerfor Applied Biomedical Ethics at Rose Medical Center, MedicalNeglect and the Disabled Infant: The Impact of the Baby DoeRegulation 12, 14 (rev. ed. 1987).120

From this perspective, as Carl Schneider hasobserved:[T]he wide range of deeply held opinions about neonataleuthanasia. . .presses us to take the problem. . .outsidethe sphere of substantive social rules by seeking ways tomake decisions about neonatal euthanasia which do notrequire social conclusions about its underlying questions.Where there is pressure of this kind, the law. . .seeksprocedural devices that obviate the need for substantiverules. For neonatal euthanasia, the nonsubstantive solutionhas commonly been to establish hospital committees todecide case by case whether neonatal euthanasia isappropriate. 23Thus, the proponents of ethics committees sought toshift the question from the substantive one of whethertreatment should be withheld to the procedural oneof who should decide whether treatment should bewithheld.As a substitute for HHS's proposed "Baby Doe"rule to implement section 504, the AAP submitted adetailed proposal for mandatory infant bioethicscommittees in each hospital. 24 Before promulgatingthe Final Rule, HHS conducted negotiations withthe AAP, other medical groups, and disability rightsgroups, negotiations that soon focused on incorporatingsome modification of the AAP proposal. 25As a result of these discussions, the Final Ruleincluded a recommendation that hospitals establishwhat HHS called "Infant Care Review Committees."However, HHS recognized that the originalrationale for ethics committees stood in stark contrastto the approach embodied in the nondiscriminationtenets of section 504. 26 Inherent in reliance onsection 504 was the assumption that the law establishesa societally defined basis for determining whenlife-preserving treatment must be provided to childrenwith disabilities and when it may be withheldfrom them. In contrast, inherent in the originalrationale for ethics committees was the assumptionthat such determinations should be decided on a23Schneider, Rights Discourse and Neonatal Euthanasia, 76 Calif.L. Rev. 151, 153-54 (1988). See also Fost, Putting Hospitals onNotice, Hastings Ctr. Rep., August 1982, at 5, 7 ("[T]he search forsubstantive criteria may be too difficult, and procedural safeguardsmay prove more serviceable. The government could, forexample, require the establishment of a local review process,similar to the institutional review boards. . . .")•24Nondiscrimination on the Basis of Handicap; Procedures andGuidelines Relating to Health Care for Handicapped Infants, 49Fed. Reg. 1622, 1623 (1984) [hereinafter Final Rule (504)].25Hilts, HHS Moves to End "Baby Doe" Controversy on theHandicapped, Washington Post, Aug. 24, 1983, at A2, cols. 1-5.26The hospital ethics committee was understood by its proponentsto be an alternative rather than a complement to enforcecase-by-casebasis varying from hospital to hospital.Because of this dichotomy, the SupplementaryInformation published with the Final Rule explainedthat HHS had "revised the Academy's model somewhatto underscore that the purpose of the ICRC isto advance the basic principles embodied in section504." 27In the words of bioethicist Thomas Murray, aproponent of ethics committees and an opponent ofthe Final Rule:[Although the hospital committee described in the rule isclosely modeled on the one suggested by the AmericanAcademy of Pediatrics, its name has been changed from"Infant Bioethical Review Committee" to "Infant CareReview Committee"—substituting a medical for a moralterm. And one type of member recommended by theAcademy is absent from the HHS version—"the ethicist ormember of the clergy." 28The 504 Final Rule was promulgated in January1984. In October the Child Abuse Amendments of1984 were signed into law. This legislation directedHHS to publish model guidelines for infant carereview committees, 29 and when the Department didso in April 1985, the model guidelines were quitesimilar to those promulgated as a part of the FinalRule under section 504. 30 Before issuing the modelrules, the Department had published interim modelguidelines on December 10, 1984, and provided a 60-day period for public comment. 31 Responding toviews expressed during this comment period bymedical groups, the Department noted:Some commenters suggested a different name for thecommittee, such as "Infant Bioethics Committee" or someother term that emphasized the committee's function ofconsidering questions of medical ethics. The Departmenthas not changed the title of the committee because nothingin the authorizing statute corroborates the notion that thefocus of the committee should be "medical ethics," at leastto the extent that term connotes considerations differentthan those involved in evaluating medical treatmentment of section 504. See, e.g., Fleischman & Murray, EthicsCommittees for Infants Doe, Hastings Ctr. Rep., December 1983,at 5, 6-8.27Final Rule (504), supra note 24, at 1625.28Murray, At Last, Final Rules on Baby Doe, Hastings Ctr. Rep.,February 1984, at 17, 17 (emphasis in the original).2942 U.S.C.A. §5103 note (West Supp. 1988).30Services and Treatment for Disabled Infants; Model Guidelinesfor Health Care Providers To Establish Infant Care ReviewCommittees, 50 Fed. Reg. 14893 (1985) [hereinafter HHS ModelICRC Guidelines].31Services and Treatment for Disabled Infants; Interim ModelGuidelines for Health Care Providers to Establish Infant CareReview Committees, 49 Fed. Reg. 48170 (1984).121

possibilities that "will be most likely to be effective inameliorating or correcting" all life-threatening conditions.32As contemplated by the model guidelines, "thebasic policy [of infant care review committees(ICRCs)] should be to prevent the withholding ofmedically indicated treatment from disabled infantswith life-threatening conditions." 33 The Departmentenvisioned that ICRCs would serve essentially asprognosis committees, marshalling and evaluatingspecialized medical opinion to determine whetherthe facts in particular cases placed them within thecategories of the Child Abuse Amendments thatrequire treatment or within the exceptions that makethe provision of treatment (other than nutrition,hydration, or medication) legally discretionary.Thus, the HHS guidelines assumed that theparticular cases that came before a committee wouldnot involve relitigation of the ethical and socialdebates about the propriety of treatment that precededenactment of the law, but would instead focuson an analysis of how the law should properly beapplied to the facts of that case. The "ethical issues"concerning what circumstances justify withholdingof treatment were not to be up for reconsiderationon a case-by-case basis; they were to be regarded assettled by the provisions of the Child Abuse Amendments.34 Dr. Richard Barthel, chair of the EthicsAdvisory Committee at Children's Hospital of Wisconsin,commented: "What does an ethics committeedo at this point? Does it say, 'People, follow thelaw?' Then they put themselves out of business,frankly. Because the law is pretty clear. Youprobably don't have to debate many of theseissues. . . ." 3532HHS Model ICRC Guidelines, supra note 30, at 14897.»» Id at 14894.34The HHS guidelines have no mandatory force. No hospital isrequired to establish an infant care review committee. Anyhospital that does is not required to follow the Federal guidelines,nor will it receive any reward for doing so. HHS Model ICRCGuidelines, supra note 30, at 14893. However, to qualify forFederal funds, each State must have in place procedures thatprovide for prompt notification by health care facilities ofsuspected withholding of medically indicated treatment, asdefined by the Federal standards. 45 C.F.R. §134O.15(c)(2)(ii)(1987). An infant care review committee following the President'sCommission/AAP model instead of the HHS model would notreport cases which the committee judged to be within the "grayarea" and in which, upon consideration, it considered withholdingof treatment ethically acceptable. If such withholding couldInfant Care Review Committees in ActionAre the infant care review committees serving asprognosis committees, providing advice on whetheror not the facts in particular cases bring them withinthe circumstances the Child Abuse Amendmentsdefine as requiring treatment as contemplated by theHHS model guidelines? Or do they act as "ethics"committees, making quality of life judgments aboutwhether or not treatment should be withdrawnwithout reference to detailed legal standards—therole originally envisioned for them by the President'sCommission and the American Academy ofPediatrics? A limited number of accounts describingthe functioning of committees have appeared sincethe effective date of the Child Abuse Amendments.A May 1986 article coauthored by the chair of theChildren's Hospital of Wisconsin Ethics AdvisoryCommittee described its functioning. 36 He and hiscoauthor advocated a model State statute that wouldgive absolute and unreviewable authority to aunanimous hospital ethics committee (provided thatparents and treating physicians agree) to choose todeny treatment to any newborn child "who allegedlyhas substantial physical and/or mental deficienciesthat cannot be significantly cured or alleviatedby surgery or other medical treatment." 37 Thisposition is self-evidently closer to the President'sCommission/AAP model than to the Department ofHealth and Human Services' model. Nevertheless,the authors stated that "[i]n making many of [its]determinations," the Children's Hospital committee"was guided by the Baby Doe regulations," whichthey then paraphrase, including this description ofthe third exception to required treatment: "treatmentwould be virtually futile in terms of the survival ofthe infant and, under the circumstances, inhumane."38 However, in describing four cases inwhich the committee agreed with parents andbe suspected of transgressing the Federal standards, this failure toreport would violate the law.35Address by Dr. Richard Barthel, Interpreting the Law: TheRoles of the Hospital, Child Protective Services, and LegalSystem in "Baby Doe" Cases, Conference on 'Baby Doe' Ethical,Legal, and Child Protection Issues in Medical Treatment ofInfants with Disabilities (Oct. 6, 1987) (videotape in files of U.S.Commission on Civil Rights).36Shapiro & Barthel, Infant Care Review Committees: AnEffective Approach to the Baby Doe Dilemma? 37 Hastings L.J. 827(1986). Dr. Richard Barthel chaired the committee; RobynShapiro is a bioethicist and attorney." Id at 859.38Id. at 855 n. 164. Cf. discussion in chap. 7, text accompanyingnotes 99-102.122

treating physicians that life-preserving treatmentshould be withheld, they wrote: "In each case, thecommittee determined that the treatment either wasfutile, only prolonged the dying process, or wasinhumane and not in the best interests of the child. " 89This third category is far broader than the ChildAbuse Amendments exception and effectively reintroducesa panoply of subjective judgments aboutthe projected quality of life of a child with adisability. 40The authors said the committee reviewed othercases "in which the parents, the physician, or othercaregivers questioned whether the child's quality oflife merited continued support or treatment." 41 Inone such instance, the treating physician wanted toterminate ventilation for a child with congenitalparalysis.The EAC [Ethics Advisory Committee] split strongly onthe answer to this question because of the members'differing perspectives on the child's quality of life. Somefelt that the child's inability to move and to communicaterendered the quality of his life negligible. Others feltunable to make such a judgment given the infant's age andthe unpredictability of treatment outcome. Because theEAC could not reach a consensus, it advised continuedventilator support. 42On the basis of the facts given, it is hard to see evena colorable basis under the Child Abuse Amendmentsthat would have justified denial of lifesavingtreatment in this case. 43 Nevertheless, it was thesubject of intense discussion and division on thecommittee. More to the point, even those supportingcontinued treatment did so apparently based only ontheir differing judgments concerning the child'sprojected quality of life—a factor emphaticallyexcluded from consideration under the Child AbuseAmendments. 4439Shapiro & Barthel, supra note 36, at 855 (emphasis added).40See the extended discussion of this point in chap. 7 at the textaccompanying notes 83-102.41Shapiro & Barthel, supra note 36, at 854-55.42Id. at 856.43As with all the cases discussed, it is not clear whether this oneoccurred before or after the effective date of the Child AbuseAmendments. The article described the committee's functioning"over its three-and-one-half years of existence prior to the passageof the Child Abuse Regulations and during the six monthsfollowing the law's implementation." Id. at 853. It is noteworthythat the authors made no mention of a significant change in themethodology of the committee during the last 6 months. Moreover,the article presented the committee's approach to the casesthey describe as a model in general worth emulating, not as amethodology that should be radically altered in light of theentrance into effect of the Child Abuse Amendments.In another case, "consultants" and "the majorityof the nursing staff' wanted to terminate treatmentfor a child whose "prognosis included blindness,deafness, seizures, and negligible developmentalpotential." 45 The child's parents strongly supportedcontinuation of treatment.The committee reached a consensus that further care wasnot ethically mandatory. There was a strong minorityopinion that further care violated the child's best interestsand that the mother's "abusive" stance should be reportedand the case should be "taken to court." The committee'srecommendations were entered into the child's chart, butthere was no change in care. 46In this instance, it appears from the facts availablethat the committee supported denial of treatmentthat would have violated the standards of treatmentin the Child Abuse Amendments. 47 There is noindication that the child was chronically and irreversiblycomatose, that the treatment would havemerely prolonged dying, that treatment would havebeen ineffective or otherwise futile in terms of thesurvival of the child, or that the treatment wouldhave been "virtually futile in terms of the survival"of the child—a prerequisite to any legally validconsideration of whether "the treatment itself undersuch circumstances would be inhumane." 48 Had itnot been for the insistence of the child's parents thattreatment be provided, it seems evident that thecommittee would have sanctioned—and certainlynot reported—denial of treatment of the sort nowrequired by the law.The committee did support treatment in two casesin which physicians and parents wanted to stop itand in all three cases in which parents wanted tostop it but physicians wanted to continue it, as wellas in two cases in which the physician was uncertain.49 Although the published record does not44The HHS Interpretative Guidelines state: "The Departmentstrongly believes such an interpretation [consideration of the infant'sfuture 'quality of life'] would be inconsistent with the statute." 45C.F.R. Pt. 1340 App. Interpretative Guideline 9 (1987) (emphasisin original).45Shapiro & Barthel, supra note 36, at 857.46Id. at 857-58. Because the parents refused to accept thenegative prognosis for their child, physicians went to the extent ofordering a psychiatric assessment of the mother. It concluded"that she was under stress but competent, well informed butunable to accept the medical information." Id. at 857. Cf. chap. 2.47It is unclear, however, whether the case occurred before orafter the Child Abuse Amendments of 1984 took effect in October1985.4845 C.F.R. §1340.15(b)(2) (1987).49Shapiro & Barthel, supra note 36, at 855-57.123

clearly indicate that the committee's deliberationsactually resulted in the denial of treatment to anychild in violation of the Child Abuse Amendments, 50it does establish that during the period described inthe article the committee gave consideration tofactors impermissible under the Child AbuseAmendments. Rather than regarding itself as aprognosis committee with the role of making judgmentsabout the medical facts and then applying thedecided legal principles to them, it conducted itself,at least to some extent, as an autonomous ethicalarbiter. In significant respects, therefore, the Children'sHospital of Wisconsin Ethics Advisory Committeeappears in practice to have acted in a mannermore closely approaching the President's Commission/AAPmodel than the HHS model.The infant bioethical review committees of theAlbert Einstein College of Medicine-MontefioreMedical Center affiliated hospitals have not onlybeen the subject of published accounts, 51 but havealso been held up as "a useful reference for hospitalsconsidering the establishment of similar committees"by the HHS Inspector General. 52 Dr. Alan Fleischman,director of the Division of Neonatology andprofessor of pediatrics at the Albert Einstein Collegeof Medicine and Montefiore Medical Center, haswritten about their operation. Although he notedand quoted the standards of treatment embodied in50With regard to the four reported instances in which thecommittee agreed with the physicians and parents that treatmentshould be withheld (see supra note 39 and accompanying text), thearticle is ambiguous about how many of the cases involvedtreatment that would merely prolong dying—a legal basis fortermination of treatment—as opposed to circumstances in whichlife could be preserved but treatment was considered "inhumane"for quality of life reasons. It is also unclear which, if any, of thesecases occurred after the effective date of the Child AbuseAmendments.51Fleischman, Bioethical Review Committees in Perinatology, 14Clinics in Perinatology 379 (1987); Fleischman, An Infant BioethicalReview Committee in an Urban Medical Center, Hastings Ctr.Rep., June 1986, at 16. See also Fleischman & Murray, EthicsCommittees for Infants Doe? Hastings Ctr. Rep., December 1983,at 5 (describes "Neonatal Ethics Rounds" at Montefiore MedicalCenter that preceded formation of bioethical review committeesand sets forth Fleischman's view of the purpose of suchcommittees).52Office of Inspector General, U.S. Department of Health andHuman Services, Infant Care Review Committees Under theBaby Doe Program 11 (1987) [hereinafter Committees OIGReport]. Commenting on an earlier draft of this report, MontefioreMedical Center noted that personnel from the Office ofInspector General (OIG) "spent a full-day on-site. . .[at] Montefiore,in which OIG staff conducted case reviews and interviewedCommittee members to get an in-depth understanding of theCommittee's work." Letter from Nadia C. Adler, Vice President—LegalAffairs and General Counsel, Montefiore Medicalthe Child Abuse Amendments, 53 he described theapproach the committees take in language that couldhave come from the President's Commission report:We believe that the proper role of the ethics committee isto "decide who should decide"; that is, ethics committeesshould not. . .[arrogate] all decisions to themselves.. . .Our committee believes that there are threetypes of cases. First are those instances where treatment isclearly required based on the best interests of the infantand the future assessment of the benefits of that treatment.Second are cases where nontreatment is morally indicated—wheninfants are in the process of dying or whentreatments would be clearly futile. Third are the caseswhere in our imperfect wisdom we honestly do not knowwhat is in the best interests of the infant. This third "grayarea" comprises a significant share of the morally problematiccases in newborn nurseries. . . .On these occasionswhen the principle of best interests of the infant cannot tellus what to do, we honor two other principles—respect forthe autonomy of the family and letting those who bear theburdens make the choice; in other words, the parents whobear the burdens ought to make a decision consistent withthe range of reasonable alternatives provided by thetreating physicians. Thus, our ethics committee has agreedto differing outcomes in similar cases based on parentaldiscretion within the range of the alternatives presented bythe treating physicians. 5 *Fleischman stated that: "Although the federal regulationsprovided certain standards or guidelines, wehave proposed. . .principles that might be utilizedas the basis for decision making in complex cases andCenter, to William J. Howard, General Counsel, United StatesCommission on Civil Rights, at 5 (Nov. 11, 1988) (reprinted inapp. D). Montefiore pointed out that the Inspector General'sreport stated that the Inspector General's report described theEinstein-Montefiore Committees as "generally structured andfunctioning in conformance with the HHS model guidelines." Id.,quoting Committee's OIG Report at 11.In a letter commenting on the portion of chap. 12 critical of theOffice of Inspector General for, among other things, praising theEinstein-Montefiore Committees in its report, the InspectorGeneral wrote, "[Y]ou state that the OIG failed to review thefacts in unreported cases considered by hospital infant carereview committees. The purpose of our hospital visits was todetermine how hospital committees are structured and functioningto deal with potential baby doe situations. It was never ourintent to review actual case files." Letter from Richard Kusserow,Inspector General, to William Howard, General Counsel,U.S. Commission on Civil Rights 1-2 (Oct. 12, 1988). Referring tothe draft's criticism of the Inspector General's report fordescribing the principles used by the Einstein-Montefiore Committeeswithout pointing out their divergence from the standardsrequired by the Child Abuse Amendments, the Inspector Generalwrote, "The purpose of this portion of the report was simply toserve as a reference to other hospitals considering the establishmentof similar committees." Id.53Fleischman, Bioethical Review Committees in Perinatology, 14Clinics in Perinatology 379, 383 (1987).54Id. at 387-88.124

have found these principles to be helpful in deliberationsand discussions at our infant bioethical reviewcommittee meetings." 55 Among those principles is:"Withholding or withdrawing treatment may beconsidered when such treatments are reasonablydeemed futile and merely prolonging the dyingprocess or when the medical treatment imposes aburden that lacks compensating benefits for theinfant." 56Commenting on an earlier draft of this report,Montefiore Medical Center asserted that these "principlesare intended to assist the Committee membersin applying the Child Abuse Amendments to thecases under review." 57 Emphasizing that the "ChildAbuse Amendments and the regulations thereunderexpressly defer to the 'treating physician's (orphysicians') reasonable medical judgement,'" thecenter stated:In other words, Congress and HHS have made clear thatthe determination as to what, if any, treatment is medicallyindicated, is to be left to the professional judgment of thetreating physician(s). Given that medical judgments arekey to decision-making under the Child Abuse Amendments,it cannot responsibly be suggested that the Committeehas violated the Child Abuse Amendments, simply onthe superficial observation that medical treatment has beenwithheld. 58The center relied in particular on the HHSinterpretation of the exception to a general requirementof treatment the Child Abuse Amendmentscreate when "the treatment itself involves significantmedical contraindications and/or significant painand suffering for the infant that clearly outweighsthe very slight potential benefit of the treatment foran infant highly unlikely to survive." 59 As thequoted passage makes clear, however, such benefitsburdenbalancing is legal only when the child is» Id. at 384." Id. at 384-85. But cf. 45 C.F.R. § 1340.15(b)(2) (1987)(definition of the Federal medical treatment standard of carebarring "withholding of medically indicated treatment") (discussedin chap. 7).5TLetter from Nadia C. Adler, supra note 52, at 3." Id. at 7-8.S9Id. at 7, quoting 45 C.F.R. §1340.15 app. (1987). See chap. 7.» 42 U.S.C.A. §51O2(2)(B)(3) (West Supp. 1988).81Montefiore Medical Center, commenting on this statement inan earlier draft, expressed concern that it implied the view "thatthe Einstein-Montefiore Committee took a neutral stance and wasattempting to evade responsibility" when in fact the committeemade the referral in order to override the parental refusal toconsent to treatment. Letter from Nadia C. Adler, supra note 52,at 11. The Commission does not mean to suggest that thecommittee's action in this case implied neutrality; rather, in this"highly unlikely to survive." The statutory languageitself requires that "the provision of such treatmentwould be virtually futile in terms of the survival ofthe infant and the treatment itself under suchcircumstances would be inhumane." 60 Although thelaw is phrased in the conjunctive, the principleFleischman says the Einstein-Montefiore committeesemploy is phrased in the disjunctive: unlike the law,it allows treatment denial in cases of futility or underbenefit-burden analysis.From February 1984 through August 1986 (duringthe last 11 months of which the Child AbuseAmendments were applicable), eight cases involvingwithholding of life-preserving surgery from children"in the first days of life" were reviewed by theaffiliated committees. (A total of 30 neonatal caseswere reviewed; the article is not clear about thetreatment/nontreatment outcome in the other 22cases.) In one case in which the attending physicianbelieved treatment should be provided and theparents disagreed, the committee referred the matterto the child protective services agency. 61 In asecond case in which the treating physicians andparents believed treatment should be withheld, thecommittee considered that it should be provided,and both the physicians and parents were thenconvinced to agree to continued treatment.In a third case the treating physicians wanted todeny treatment while the parents desired it to beprovided; although the child died (presumably withoutreceiving the life-saving surgery), the committeeretrospectively concluded that "the parents' requestwas imposing undue pain and suffering on the infantfor no potential benefit." In all the other cases thecommittee agreed with the desire of physicians andparents to withhold treatment. 62case it is clear that the committee acted properly and fulfilled theresponsibility to report imposed upon it by the law.62Fleischman, supra n. 53, at 388-89. In its letter of comment,Montefiore says, concerning the third case: "As Dr. Fleischman'sarticle plainly states, a retrospective review of the case (the infantwas imminently dying and indeed died before the Committeecould be convened for prospective review) indicated that theparents' wish to provide treatment would have imposed 'unduepain and suffering on an infant for no potential benefit.' (Fleischman,p. 389) The Report, once again, omits this detail." Letterfrom Nadia C. Adler, supra note 52, at 12. In fact, the Fleischmanarticle at no point states that the child was imminently dying. IfMontefiore is making this assertion based on its review of themedical records of the case, rather than on the article, then thedenial of treatment would in fact not have violated the ChildAbuse Amendments. However, what is striking about the descriptionof the case in Fleischman's article, like that of all the other125

Reviewing the first 30 months of the committees'operations, Dr. Fleischman concluded that "itsexistence had reversed the treatment decision foronly one patient." 63 This did not lead him toconsider, however, that the committees were notserving their function. Rather, he wrote:Since withholding or withdrawing of medical treatmentsis often carried out by the nurses with the consent andinvolvement of the families, review and confirmation ofthe appropriateness of this course of action by the ethicscommittee has made both nurses and parents far morecomfortable with this aspect of the care of infants.. . .The psychological trauma of making a decisionthat results in the death of one's own child, we believe,may be greatly relieved by this decisional review process.64The Commission emphasizes that in the absence ofmore detailed facts about the cases reviewed by theMontefiore committees from October 1985 onward,it is impossible to determine whether any of thetreatment denials violated the standards establishedby the Child Abuse Amendments. However,Fleischman's article describes a set of committeesthat has been employing a balancing of "burden"and "benefit" standard that takes into accountquality of life factors, rather than directly andexplicitly applying the standards created by theamendments. Therefore, it seems a fair conclusionthat the Einstein-Montefiore committees adheremore closely to the President's Commission/AAPmodel than to the HHS model.The committee at University Hospitals of Clevelandhas also been the subject of a published report. 65The authors, who are associated with the committee,are quite open about their rejection of the HHSmodel:Although federal regulations have stimulated creation ofethics review committees their essential function is notadherence to government regulations but fulfillment ofimportant needs within the hospital.cases he details, is that the committee's reasoning is neverdescribed in terms of whether the cases fit within the categoriesestablished by the Child Abuse Amendments, but always in suchambiguous and amorphous terms as whether treatment ornontreatment would be "beneficial," or "appropriate," or in "thebest interests of the infant," language largely popularized by thePresident's Commission's Report.83Fleischman, supra n. 53, at 389. Fleischman believed that in thecase referred to the child protective services agency, "it is highlylikely that the same outcome. . .would have occurred prior tothe existence of our infant bioethical review committee." Id.Our approach differs. . .with the optional model [proposedby HHS].. . .We prefer not to specify exceptions tothe requirement to provide lifesaving treatment, becauseof concern that this might lead to oversimplification,neglecting unique aspects of individual cases. . . .Wespecify that the best interests of the patient are our primaryconcern in dealing with infant (or other incompetent)patients. 66The authors are frank in acknowledging that theircriteria for treatment decisionmaking differ fromthose required by the law, but they claim they donot violate the "spirit" of the law when theyconclude a child should be denied legally mandatedlifesaving treatment as long as they consider death tobe in the child's "best interests":Committee recommendations are based on moral ratherthan legal. . .considerations. . . .. . .If the committee, family, and physician recommendationsare in agreement but the proposed medical actionappears contrary to government regulations, the potentialconflict should be communicated to the medical directoror chairman of the pediatric department. Some may regardan action (or inaction) that runs counter to specific statutesas civil disobedience. Although civil disobedience ismorally justified if a law is unjust, we do not claim that thenew federal regulations are unjust. Rather, the regulationsare open to alternative interpretations of what constitutesthe best treatment for individual patients. . . .In otherwords, the spirit of the law supports the practitioners'obligation to promote the patient's interests in situationswhere literal observance may oppose it. 67It is evident from the article that the authors thinkone of the good effects of a functioning committeesystem is a decreased risk of government intervention.They report that on two occasions the committeewas contacted by the Department of Health andHuman Services because Baby Doe complaints hadbeen received. "When the results of [committeedeliberations] were reported to the Department. . .,no further investigation was judged necessary." 68The authors suggest that "proceedings might have64Id. at 389-90.65Kliegman, Mahowald & Youngner, In Our Best Interests:Experience and Workings of an Ethics Review Committee, 108 J. ofPediatrics 178 (1986).66Id. at 178-79.67Id. at 180, 185 (emphasis in original). The idea of havinghospital legal counsel on the committee was rejected because of"the desire to focus on ethical rather than legal matters, andconcern that an attorney's presence might impede that purpose."Id. at 186.68Id. at 183.126

een initiated in at least the two cases reportedanonymously to the federal government, had ourcommittee not been in place." 69Public information about a fourth hospital committeeplaces it in the pattern of the President'sCommission/AAP model rather than the HHSmodel as well. St. Joseph's Hospital in Denver,Colorado, made a point of calling its committee an"Infant Bioethics Committee" rather than an "InfantCare Review Committee" in order "to stress thatours is a human value—not a legal—emphasis." 70 Italso "decided early on not to include a lawyer,believing his/her presence could alter the humanvalue course set by the IBC." 71What evidence is available from surveys suggeststhese four committees are not atypical. In September1987, the HHS Inspector General published a reportbased on visits to ethics committees in 10 hospitals ineight major cities. 72 Although the HHS guidelinesrecommend that committee meetings be calledwhenever a preliminary decision has been made towithhold or withdraw life sustaining treatment froman infant with a disability in relevant categories, 73 8of the 10 committees visited had no such requirement.In contrast, "All committees indicated they reviewcases involving disagreement between principalparties in the case (treating physician, parents,other hospital staff)." 74 The 1986 AAP/Universityof Connecticut survey found that of the ethicscommittees with prospective review, only 23.2percent made it mandatory in certain cases—andonly 61.7 percent of that 23.2 percent, or 14.3percent of all committees with prospective review,required review in all cases in which treatmentmight be withheld or withdrawn from any infant. 75These are significant findings. It appears that thevast majority of committees convene only to dealwith disagreements and do not attempt to scrutinizemost denial of treatment decisions to see whetherthey comply with the law. This implies that manyhospital infant care review committees seem moreattuned to diffusing and resolving conflict in a waythat keeps any controversy as much as possiblewithin hospital walls than to ensuring that childrenwith disabilities receive the lifesaving treatment towhich they are entitled under the Child AbuseAmendments. 76Infant Care Review Committees andReportingEven before the passage of the 1984 amendments,the Federal regulations implementing the ChildAbuse Prevention and Treatment Act requiredStates receiving Federal funding for their childprotective services programs to "provide by statutethat specified persons must report and by statute oradministrative procedure that all other persons arepermitted to report known and suspected instances ofchild abuse and neglect to a child protective agencyor other properly constituted authority." 77 Theimplementing regulations for the Child AbuseAmendments of 1984 establish that States receivingFederal funds must ensure that health care facilitiesdesignate individuals with the duty promptly tonotify the State child protective services agency ofall "cases of suspected medical neglect (includinginstances of the withholding of medically indicatedtreatment from disabled infants with life-threateningconditions)." 78Because not merely known but also "suspected"instances must be reported, the health care facility'sobligation to notify the State agency is not limited tocases in which, for example, the infant care reviewcommittee or the responsible hospital official makesa final determination that illegal withholding oftreatment is occurring or about to occur. Nor is itlimited to cases in which the infant care reviewcommittee or the responsible hospital official hasattempted to convince a parent or guardian toconsent to legally required treatment but has failedand is turning to the civil authorities as a last resort.89Id. at 187.70Infant Bioethics Committee, A Demonstration by the St. JosephHospital IBC, in The Center for Applied Biomedical Ethics atRose Medical Center, Medical Neglect and the Disabled Infant:The Impact of the Baby Doe Regulation 25, 25-26 (rev. ed. 1987)(quoting Dr. Donald W. Parsons, chair of the Infant BioethicsCommittee).71Id.72Committees OIG Report, supra note 52, at ii.73HHS Model ICRC Guidelines, supra note 30, at 14895.74Committees OIG Report, supra note 52, at 7.7565.8 percent of the 23.2 percent, or 15.3 percent of allcommittees with prospective review, required review in instancesof withholding or withdrawing treatment from noncomatoseinfants. The rest of those who did make review mandatory did soin cases of disagreement among medical staff, or among medicalstaff and parents. National Collaborative Survey, supra note 3, at44 (1987) (table 22).76Cf. the rationale for such committees given by Dr. NormanFost, supra note 18 & accompanying text.7745 C.F.R. §1340.14(c) (1987) (emphasis added).7845 C.F.R. §1340.15(cX2)(ii) (1987).127

Webster's defines "suspected" as "that one suspectsor has a suspicion of. . . ." 79 "Suspicion" is definedas "imagination or apprehension of somethingwrong or hurtful without proof or on slight evidence."80 By contrast, "known" is defined assomething "that has become a part of knowledge ." 81 Clearly, when there isenough question about an ongoing or contemplatedwithholding of treatment that an infant care reviewcommittee is convened to discuss it, there must be atleast a "suspicion" that withholding of medicallyindicated treatment may be in prospect. The plainlanguage of the applicable law would require areport.Yet, it is evident that this is not the practice ofmost infant care review committees. The HHSInspector General's report noted that of the "between20 and 36 baby doe cases" considered byethics committees at the 10 hospitals studied "sincethe regulations went into effect in October 1985,"only 3 were reported to State child protectiveservice agencies. 82 "Committee members pointedout that differences of opinion between treatingphysicians, parents and the committee can usually beresolved through an informal discussion process. Ifthis is not possible, the hospital refers the case to CPSfor investigation and possible legal action." 83These widespread failures to report are especiallyserious in light of the adoption by many hospitalethics committees of an approach that in generalbypasses the Child Abuse Amendments standard ofcare in favor of the nebulous and subjective tripartitedivision of cases promoted by the President'sCommission and the AAP. It means that there hasusually been no independent review or investigationof what may have been—if the figures from the 10hospitals contacted by the HHS Inspector Generalmay be projected to the Nation at large—hundreds79Webster's Third New International Dictionary of the EnglishLanguage 2303 (P. Grove ed. 3rd ed. 1981).80Id. at 2304.Id. at 1253.12Committees OIG Report, supra note 52, at iii.Id. at 5 (emphasis added).HHS Model ICRC Guidelines, supra note 30, at 14894.15Infant Bioethics Task Force and Consultants, supra note 22 at307.84Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 144 (vol. II) (1986) (testimonyof Adrienne Asch, Adjunct Lecturer in Social Psychology, CityCollege of New York).87National Collaborative Survey, supra note 3, at 35 (1987)(table 13). Even if local hospitals were to seek to broadenof potential Infant Doe cases since the Child AbuseAmendments went into effect in October 1985.Limitations of Hospital Self-policingIt is questionable whether most committees areconstructed in a manner that suits them to searchingscrutiny of proposed denials of treatment. Infantcare review committees, although they upon occasionhave "outside" members, represent an approachto the "Baby Doe" problem that relies essentiallyupon the internal self-regulation of the health carecommunity. Not only the Department of Health andHuman Services, 84 but also the American Academyof Pediatrics, 85 recommended that committeesinclude representatives of disability groups. But, asAdrienne Asch testified, in practice, a disabilityperspective is often unrepresented on the committees.86 The 1986 survey found that of the respondinghospitals, less than a quarter of their ethics committees—23.9percent—had a representative of a disabilitygroup. 87 Instead, the committees are dominatedby health care personnel from the institutions themselves.A practicing pediatrician serves on 86.6percent of the committees, a practicing neonatologiston 75 percent, a practicing physician of anotherspecialty on 80.2 percent, a practicing registerednurse on 88.4 percent, and a hospital administratoron 78.3 percent. 88Yet, a preponderance of medical personnel oncommittees does not necessarily mean that they areespecially well equipped to serve as prognosiscommittees. As Dr. Mildred Stahlman testified,"[M]ost committees are not committees of experts inthe medical field that the patient's problem lies." 89In the words of George Annas, chief of the HealthLaw Section at the Boston University School ofPublic Health, "If consultation concerning the patient'sprognosis is indicated,. . .a medical expert inthe particular condition from which the patient isrepresentation of disability groups, it is doubtful that suchorganizations have enough resources to provide adequate inputinto every individual hospital's ethics committee. It would bedifficult to find an adequate number of disability rights advocateswith up to date and accurate information on the treatment ofevery disability to cover every hospital in the Nation.88Id.89Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 9 (vol. I) (1985) (testimony ofMildred T. Stahlman, M.D., Director, Division of Neonatology,Vanderbilt University). Dr. Stahlman opposed resort to committeesnot because she believed they are disposed to approve illegaldenial of treatment but because she believed decisions aboutprovision or denial of treatment should be left to "neonatologists[who are] their patients' best advocates." Id. at 5.128

suffering should be consulted, not a committee ofgeneralists." 90Many hospital ethics committees are largely insularbodies, sharing the mores and limitations ofknowledge and viewpoint of the local hospital. Areluctance to criticize one's colleagues, let alonereport their decisions to a State agency, is onlynatural in such a setting.As Carlton Sherwood testified:Physicians and spokesmen from medical organizationsfrequently render offhand criticism of nontreatment incidents.Yet you'll note that not one physician or medicalorganization has ever formally or informally filed acomplaint against any of the physicians who conductedthese experiments, including Bloomington, Indiana.Indeed, rather than being censured, several of thephysicians went on to more prestigious hospitals wherethey continue to practice medicine, and some even teach,presumably, the same methods that they were practicingwhen they authored these articles. 91Resort to infant care review committees, in short,presents the same problem generally applicable tothe creation of an internal body as a means ofshowing the public that the institution is seriousabout correcting abuses: an institution rarely does agood job of policing itself. "Institutions and theirstaffs," Annas has written, "often see the primaryfunction of ethics committees as protecting themagainst potential legal liability for treating or not90Annas, Ethics Committees in Neonatal Care: SubstantiveProtection or Procedural Diversion?, 74 Am. J. Pub. Health 843, 844(1984). After the New Jersey Supreme Court, in the Karen AnnQuinlan case, called for the use of hospital ethics committees todetermine when life support systems should be withdrawn: "Thiswas soon seen as an improper use of such a committee: the courtfound medical prognosis the determining factor, and only qualifiedphysicians can make this determination. Thus New Jersey'ethics committees' have been replaced by 'prognosis committees'made up entirely of consulting physicians." Id. at 843.91Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 47-48 (vol. II) (1986) (testimonyof Carlton Sherwood).treating particular patients. . . .Ultimately, it willbe seen as unjust to have fundamentally differentpolicies regarding the treatment of handicappednewborns at different hospitals. Policy in this areawill have to be nationally based and thus consistentfrom one hospital to another. . . .[A]s soon as anational consensus does develop, it will not be fair orfeasible for individual hospitals to ignore it and settheir own idiosyncratic policies." 92 Outside oversightis needed.ConclusionTaking note of the great propensity by many inthe medical profession to disagree with the treatmentstandards in the Child Abuse Amendments, 93and of the available evidence concerning the functioningto date of hospital-based ethics or infant carereview committees, the Commission is persuadedthat they cannot be relied upon alone to ensure thatchildren with disabilities are accorded the lifesavingtreatment that is their right by law.At the same time, it is clear that such committeesare here to stay. Therefore, the Commission believesthere is a need to ensure that there be independent,contemporaneous scrutiny of infant care reviewcommittee proceedings, preferably by medicallyknowledgeable and experienced disability advocates,and that the prompt reporting requirement be morevigorously enforced to make this possible. 9492Annas, supra note 90, at 843, 845. Annas wrote before thepassage of the Child Abuse Amendments of 1984, whichestablished the national standards. Annas pointed out that, incontrast to the HHS model set forth in its section 504 Final Rule,the AAP model "tilts more in the direction of protecting theinstitution by keeping difficult cases out of court than ofprotecting the infant. . . .[LTJnlike the Administration's proposal,the AAP proposal contains no substantive rules for the ethicscommittee to apply. . . ." Id. at 844.93See chap. 9.94See chap. 13.129

Chapter 12The Performance of the FederalGovernmentHow well has the Federal Government fulfilledits responsibilities to ensure adequate enforcement ofFederal laws that protect children with disabilitiesfrom discriminatory denial of medical treatment forlife-threatening conditions? The two principalsources for Federal involvement have been enforcementof regulations issued under section 504 of theRehabilitation Act of 1973 1 until they were struckdown, and enforcement of the Child Abuse Amendmentsof 1984. 2Section 504Responsibility for enforcing section 504 in thiscontext rested with the Office for Civil Rights(OCR) in the Department of Health and HumanServices until a final judgment and order wasentered by the New York Federal District Courtenjoining the final version of the "Baby Doe"regulations on June 11, 1984. 3In none of the cases OCR investigated—even theBloomington Infant Doe case—did it officiallydetermine that a violation of section 504 hadoccurred. 4 Standing alone, however, that observationis misleading. When it found a discriminatorydenial of treatment, OCR asked for assurances thatpractices would be changed to achieve compliancewith section 504 in the future. If it got them, it didnot make a public "finding of discriminatory with-1See chap. 6.2See chap. 7.sAm. Hosp. Ass'n v. Heckler, 585 F. Supp. 541 (S.D.N.Y.), affd794 F.2d 696 (2d Cir. 1984), affd sub nom. Am. Hosp. Ass'n v.Bowen, 476 U.S. 610 (1986). See chap. 6.* Nondiscrimination on the Basis of Handicap; Procedures andGuidelines Relating to Health Care for Handicapped Infants, 49Fed. Reg. 1622 (1984).130holding of medical care." 5 Thus, in theory OCRmight detect noncompliance in fact and secureremedial action by the discriminating party, thusfulfilling its role, without officially reporting afinding of noncompliance.However, OCR has been criticized for failure toconduct prompt and effective investigations. 6 Of150 cases OCR investigated from April 1982through December 1983, only 31 were closed by thelatter date—all with a finding of no violation or ofinsufficient information to investigate. 7It appears that members of the OCR staff assignedto Baby Doe investigations were unsympathetic totheir enforcement duties:[C]ritics. . .within the department. . .say the government'spolicy violates family privacy and intimidateshospitals and their staffs.One department employee, who has been sent toinvestigate Baby Doe cases, called the assignment "probablythe ugliest thing I've ever done," and added, "I neverwant to face another mother who is looking at me andsaying, 'Why are you into my family business?'". . . .Another Baby Doe team member, who has almost adecade of experience in policing civil rights for theagency, said, "We never had a Baby Doe problem beforethis administration. It was beyond our imagination. It justcame out of the blue from someone who has a verycreative mind."5Id. at 1649.6See, e.g., Protection of Handicapped Newborns: Hearing Beforethe United States Commission on Civil Rights 250 (1986) (vol. II)(testimony of Thomas Nerney, President, Disability Institute).7Sherwood, Baby Doe: The Politics of Death 11 (1984) (WashingtonTimes reprint).

Department employees interviewed all said they hadserious misgivings about the Baby Doe emphasis. 8Under the OCR procedures for Baby Doe investigations,medical consultants not unnaturally playeda significant role. 9 Generally speaking, only aneducated and experienced medical expert—not a layinvestigator inexperienced in medicine or disability—canmake the technical judgment concerningwhat medical treatment is necessary to preserve aparticular patient's life. Effective investigations,therefore, necessarily depend upon the use of medicalconsultants who are competent and willing tomake such a medical judgment in strict accordancewith the nondiscrimination principles embodied insection 504.OCR's selection of at least some medical consultantswas surprising. They included Dr. Gordon B.Avery and Dr. George Little, both of whomsubmitted affidavits on behalf of the plaintiffs in thesuit to invalidate the original regulations. 10 In amedical journal article, Dr. James Strain, the presidentof the American Academy of Pediatrics,revealed that during an investigation of allegeddenial of treatment at Rochester, New York's,Strong Memorial Hospital in March 1983, theneonatologist flown in as OCR's consultant refusedto examine the children concerning whom denial oftreatment was alleged on the grounds that "theinvestigators had failed to obtain the parents' consentto examine the children." 11 Since the parentshad presumably at least nominally acquiesced in thesuspected denial of treatment, unilaterally givingthem veto power over an investigation of theallegations was not a realistic way for the consultant8Cimons and Green, U.S. Moves in Baby Doe Cases Stir Anger,Los Angeles Times, Nov. 12, 1983, at Al, col. 4, A6, col. 2(emphasis added). See also Protection of Handicapped Newborns:Hearing Before the United States Commission on Civil Rights250-51 (1986) (vol. II) (testimony of Thomas Nemey, President,Disability Institute) (Department of Health and Human Servicesprobably has many physicians who "make arguments about theprimacy of the medical profession").9See, e.g., Office for Civil Rights, Department of Health andHuman Services, Discrimination Against Handicapped Infants byWithholding Treatment or Nourishment: Interim ExpeditedProcedure 3 (March 22-25, 1983) (included as Attachment 4 toAffidavit of Betty Lou Dotson, Am. Academy of Pediatrics v.Heckler, 561 F. Supp. 395 (D.D.C. 1983)).10See Office for Civil Rights' Medical Consultants, attachmentto Affidavit of Nathan D. Dick, Affidavit of George A. Little,M.D., attachment to Plaintiffs complaint for Declaratory andInjunctive Relief, Statement of Points and Authorities in Supportof Complaint for Declaratory and Injunctive Relief (filed Mar.to do an unbiased investigation of whether theallegations were substantiated.Significant delays prevented efficient enforcementin investigations of substantial and notorious denialof treatment practices in Connecticut and Oklahoma.Perhaps the first public acknowledgement ofregular denial of lifesaving treatment to childrenwith disabilities concerned Yale-New Haven Hospital.In 1973 Yale-New Haven pediatrician RaymondS. Duff coauthored a medical journal article revealingthat 14 percent of a series of 299 deaths in thehospital's Newborn Special Care Unit were causedby deliberate withholding of life-preserving treatment,and providing a defense of the practice. 12In June 1981, the Hartford Courant published aseries of articles by medical reporter Diane Brozekdescribing the continuation of the practices that hadbeen set forth in 1973. 13 "Doctors at Yale-NewHaven Hospital's Special Care Unit routinely offerparents the option of letting newborns with spinabifida die by withholding food and the surgeryneeded to close the baby's lesion to prevent infection,"she concluded. 14 She recounted a number ofspecific instances presenting prima facie violations ofsection 504 as it was being publicly interpreted bythe Departments of Justice and Health and HumanServices:* [Michael Renfrew had brain damage resulting from ahemorrhage shortly after his birth. T]he doctors recommendedmore than once that Michael be allowed to die.[His father] Douglas Renfrew couldn't bring himself tomake the decision. He remembered telling the medicalteam that multiple [sic] handicapped children deserve tolive "if only because they teach us to value life."18, 1983), and Affidavit of Gordon B. Avery, M.D., Exhibit A toDefendant's Deposition of Gordon B. Avery, M.D. (Mar. 30,1983), Am. Academy of Pediatrics v. Heckler, 585 F.Supp. 541(S.D.N.Y. 1983) (Civil Action No. 83-0774).11Strain, Special Report: The American Academy of PediatricsComments on the "Baby Doe II" Regulations, 309 New Eng. J.Med. 443, 444 (1983).12Duff & Campbell, Moral and Ethical Dilemmas in the SpecialCare Nursery, 289 New Eng. J. Med. 890 (1973).13Brozek, Defective Newborns Are Dying By Design, HartfordCourant, June 14, 1981, at 1, col. Al; Brozek, At Issue: AProductive Life or Tragedy, Hartford Courant, June 15, 1981, atAl, col. 1; Brozek, Siamese Twins Case a Test of Infant CarePractices, Hartford Courant, June 16, 1981, at A1, col. 3; Brozek,Parents Chose Death for Baby, Hartford Courant, June 17, 1981, atAl, col. 1.14Brozek, At Issue: A Productive Life or Tragedy, HartfordCourant, June 15, 1981, at Al, col. 1.131

The baby's doctor, E. Laurence Hoder, agreed tocontinue care, but the infant died January 27. When thebaby's heart began failing that night, Renfrew finallyagreed by phone to disconnect a respirator so Michaelcould die. . . ."* [When Eric Scuterud was born with spina bifida atYale-New Haven hospital in 1980, his parents] were toldthey could go ahead with the lifesaving operation and theninstitutionalize their baby. The doctors also gave thecouple the option of letting the baby die by withholdingfood and the surgery that would close the back lesion toprevent infection.Doctors offered to let Eric go home to die, with anadequate supply of morphine to sedate him. . . .Doctors also told Honey Scuterud she would not befeeding him. 16* Dr. Richard A. Ehrenkranz, on staff at the Yale-New Haven unit, said doctors there almost always abideby parents' decisions, whether for life or death.. . .Ehrenkranz said the staff doesn't intervene to save achild against his parents' wishes, even when the child has areasonable chance to survive with treatment. "Somemedical institutions choose to step in, through the courts,"he said. "We do not.""* [Although ojverdose deaths at Yale-New Haven are"infrequent,". . .a doctor there said[, in some cases] heand other doctors suggested the option, assuring parentsthey would sign the death certificate, no questions asked.The parents, he said, ended their infants' lives withmorphine or phenobarbital prescribed by the doctors andusually dissolved in a baby bottle. 18In reaction to the Courant series, the ConnecticutSenate Public Health Interim Study Committee on15Brozek, Defective Newborns Are Dying By Design, HartfordCourant, June 14, 1981, at Al, col. 4.16Id. at A25, cols. 2-3. Mrs. Scuterud felt she could not face theprospect of starving her child at home:"That was the one thing I know I couldn't do, not in myhouse," she recalled. The couple ordered the surgery, hopingthe doctors were right when they said Eric probably wasn'tbrain damaged.Id at A25, col. 3. In 1981 Brozek wrote, "Eric Scuterud isintellectually normal for a year-old baby. He is quick with a grinand flirts with strangers by throwing kisses with a loud smack ofhis lips." Id. at A25, col. 1.17Id at A25, cols. 3-4.18Id. at Al, col. 3. Brozek commented:This daring practice and its acknowledgement by a doctorsignal how routine the concept of nontreatment of defectivenewborns has become in medical practice and how far somemedical professionals have taken it.132Medical Treatment for Newborn Infants began aseries of hearings, chaired by Senator Regina Smith.At those hearings, "Dr. Joseph B. Warshaw, directorof newborn services at Yale-New Haven, saidthat 'two or three times' in the last five years, infantswith Down's Syndrome. . .were not treated forintestinal blockages that prevented them from digestingfood." 19Dr. Raymond S. Duff testified:[I]n light of religious, personal, and family values andcircumstances, some medical conditions are estimated toinvolve such a destructive impact on the family and oftenon the child as well that rescue seems unwise. Family andhealth professionals in these situations believe that tragedywill only be compounded for everyone if rescue isattempted. 20However, the committee received evidence thatthese judgments seemed at times to be less those ofthe family than those of Dr. Duff. For example,concerning his son James, born with cerebral palsyat Yale-New Haven Hospital in 1975, Leo Arriawrote Senator Smith:Even after realizing that James may not be normal wedecided that as long as he was alive we wanted to doeverything we possibly could do for him. It was then thatwe were called into conference with a Doctor Duff, whowe were told was the head of Pediatrics for the hospital.Doctor Duff told us that James was going to be a greatburden to us throughout our lives. He also told us thatJames would be a vegetable and a helpless human being.He told us to consider very seriously abandoning thechild."Theodore and Cheryl Mekdeci wrote Senator Smiththat their daughter Kimberly was born with spinabifida in 1975:Ending a human life by overdose clearly moves the issueout of the long disputed area of passive euthanasia bywithholding care into the outlawed territory of activeeuthanasia, or causing death.Id. at A25, col. 1.19Cohen, Doctor Admits Hospital Let Newborns Die, HartfordCourant, Oct. 1, 1981, at Al, col. 1. See also DeRenzo, Summaryof Hearings on the Treatment of Newborns with Disabilities 6(Feb. 10, 1982) (on file at U.S. Commission on Civil Rights).20Duff, Decision Making in Extreme Situations 5 (Testimonyprepared for presentation at hearings of the Public Health InterimStudy Committee on Medical Treatment for Newborn Infants,Oct. 20, 1981).21Letter from Leo F. Arria to State Sen. Regina Smith (Apr. 7,1982) (on file at U.S. Commission on Civil Rights). Mr. Arria andhis wife talked with another pediatrician and decided to authorizemedical treatment. See also letter from Theodore and CherylMekdeci to State Sen. Regina Smith (undated) (on file at the U.S.Commission on Civil Rights).

Kimberly was placed in the Newborn Special Care Unit atYale New Haven Hospital. [We] were approached by Dr.Duff. He wanted to know if we fully understood the futurelife we would be faced with. Our daughter would be aburden to us and would need constant care and may neveramount to anything other than to be a vegetable, is whathe had told us. There was the possibility that she wouldcause us much pain. We asked him if he was advis[ing] usagainst the surgery, asking us to take the chance of ourdaughter dying. He told us it was something that weshould consider. 22The committee obtained a Yale-New Haven hospitalpolicy that explicitly stated that among thefactors to be considered in decisions to provide orwithhold treatment were "the quality of life for thechild and family" and "the risks of psychologicalburdens." 23The Brozek series and the legislative hearingsprompted an investigation headed by Thayer Baldwin,Jr., chief of the Bureau of Health SystemRegulation of the Connecticut State Department ofHealth Services. At the conclusion of his investigation,the report of the bureau recommended againstany "attempt to define or interfere with medicalpractice." It said "the enormous variety of personalfeelings on the subject" meant that laws preventingdenial of treatment "would be ignored and ineffective."24 However, the report did make factualfindings about a number of cases involving 11hospitals around the State:Two. . .infants had multiple congenital anomalies involvingone or more organs and body systems and includingintestinal and neurological dysfunction in varying degrees.Although individual physical anomalies were treatable,with resultant varying prognoses, a physician/parentdecision was made to withdraw/withhold treatment andactive support, including intravenous fluids which providednourishment. Alternative nourishment was then offeredorally "as tolerated" to one of these infants. Although thisinfant died of "malnutrition," it is not known whether thiswas due to lack of adequate intake or to intestinaldysfunction. The second infant was provided no nourishmentin any form and subsequently died of dehydration.22Letter from Theodore and Cheryl Mekdeci to State Sen.Regina Smith (undated) (on file at the U.S. Commission on CivilRights). The Mekdecis wrote:This time [after birth] is a very trying time for the parentsand being persuaded in the direction of ending the newbornchild[']s life is something that might be regreted [sic] later ifparents were to decide this way without feeling that there areother alternatives. . . .[A] low birth weight, full term infant was transferred fromanother hospital on oxygen support. Problems noted earlyon included physical signs of Down's Syndrome, heartdefect (probable AV canal), and probable duodenal stenosis.(The heart problem was operable, but with a highmortality rate.) The infant was prepared for duodenalsurgery, however the parents chose not to performsurgery. The mother did not want the baby to suffer or toruin the lives of their other children. . . .A physiciansupported,subsequent parent decision was made to discontinueall support. A statement signed by the parentsappeared in the record which stated their decision againstabdominal surgery and their decision to withdraw "medicalsupport" and their understanding of the "full meaningof this decision."All "support" was discontinued on the fourth day of life,including oral feedings (which were not feasible) andintravenous nourishment. These activities were substantiatedby doctors' orders and nurses' records. At death (at23 days old) the infant showed a substantial weight lossfrom birth.[A] severely premature infant required suctioning forresuscitation. . . .A genetic consult confirmed the probabilityof Down's. A surgical consult revealed probableduodenal atresia. There were several instances of bradycardia(slow heart rate) beginning on the first day of life.On the third day of life, the parents made a decision to "letnature take its course" and opted for "non-active intervention".. . .[RJecords indicated that the IV line (whichincluded nourishment), antibiotics and other support werewithdrawn on the third day. The infant died on the fourthday, following increased episodes of bradycardia.[F]our infants had multiple congenital anomalies andphysiological and medical problems including varyingdegrees of cardiorespiratory and/or neurological deficiencies.(An infant with Down's Syndrome was included inthis group.) Physician/parent decisions were made towithhold or withdraw artificial means of respiration fromthese infants apparently based on prognoses of poorquality lives from complications requiring continuingextensive support.. . .Notes such as "Plan is to not ventilate the infant.. . .The parents accept this plan," "little chance ofeven a remotely normal life," "multiple surgery andmaximal family support and medical care will be requiredKimberly today is mainstreamed into a regular classroomat school. She is socially and emotionally well adjusted and isa beautifully bright individual. She also shows much love.23Guidelines for Deciding Care of Critically 111 or DyingPatients[:] A Summary of the Yale-New Haven Hospital Policy 5(undated) (on file at the U.S. Commission on Civil Rights).24Baldwin, Infant Death[:] Life and Death in Newborn SpecialCare Units 11 (1982) (on file at U.S. Commission on Civil Rights).See chap. 10 and text accompanying notes 38-40.133

to achieve a reasonable life". . .were observed in themedical records. . . .Articles in the Hartford Courant which precipitated thisinvestigation by the Department of Health Servicesreferred to cases in which infants were starved oroverdosed at home. In three of the eighteen casesreviewed, the infant died at home. Our review of hospitalrecords did not provide enough information to eitherprove or rule out any malfeasance after discharge from thehospital. However, there appears to be a high possibilitythat active euthanasia was involved in at least one of thesecases.. . .From our review, it would appear that in everyhospital in which we reviewed records, selectivelife/death decisions, involving withdrawal or withholdingof treatment, were being made by physicians and parentson a case by case basis.. . .Some records at one institution included signed statementsby parents that it was their decision to withdrawtreatment even though death would necessarily follow. 25On June 17, 1982, State Senator Smith filed aformal complaint with the U.S. Department ofJustice, to which she attached the Brozek articles,the Baldwin report, and information from testimonygiven at the hearings before her committee (includingthe two parental letters concerning Dr. Duffquoted earlier). 26 She requested an investigation "todetermine whether or not Section 504 of the RehabilitationAct or any other federal criminal or civilstatute is being ignored and violated." 27 The JusticeDepartment did not itself initiate an investigationand did not refer the complaint to the HHS Office25Id. at 14-17. In another case involving a child with "perinataland neonatal asphyxia resulting in serious brain damage andrelated complications," who was "able to breathe room air and tobe fed by mouth," a "parent/physician decision had beenmade. . .to discontinue tube feedings and feed only by mouth ondemand with the expectation that this course would result indeath." The infant was "discharged home. . .and subsequentlydied at home of cardiorespiratory arrest." Id. at 16.M Letter from State Sen. Regina Smith to William BradfordReynolds, Assistant Attorney General, Civil Rights Division,U.S. Department of Justice, and Arthur Peabody, SpecialLitigation Section, U.S. Department of Justice (June 17, 1982) (onfile at U.S. Commission on Civil Rights).27Id. at 1.28Memorandum from Betty Lou Dotson, Director, Office forCivil Rights, U.S. Department of Health and Human Services, toThomas Donnelly, Acting Secretary, U.S. Department of Healthand Human Services 1 (Mar. 1, 1983). According to Ms. Dotson,"OCR had already initiated a compliance review of the Yale-NewHaven Hospital in August 1982, which covered the same issuesinvolved in the Regina Smith complaint." Id. According to Yale-New Haven Hospital, it received a letter announcing a civil rightsfor Civil Rights until October 1982. 28 It was notuntil February 10, 1983, that any response was sentto Senator Smith on her complaint. On that dateCaroline Chang, Region I Director of the Office forCivil Rights, wrote her to inform her that onFebruary 1, 1983 (3 months after the complaint hadbeen referred to OCR by the Justice Department),her complaint had been referred to the Region Ioffice for investigation. The Chang letter continued:You have provided OCR with complete informationsufficient to initiate our processing of your complaint.OCR has jurisdiction over the subject matter of thecomplaint pursuant to Section 504 of the RehabilitationAct of 1973. . . .We have determined that Yale-New Haven Hospital is arecipient of Federal financial assistance from the Departmentof Health and Human Services. . . .In approximately ninety days, OCR will complete itsinvestigation to determine if there has been a violation ofSection 504 and its regulation. If no violation is identified,OCR will inform you and Yale-New Haven hospital inwriting. If there is a determination that a violation hasoccurred, Yale-New Haven Hospital will be notified andrequested to take corrective action within the next ninetydays. 29However, Peter Chan of the Region I officetelephoned Senator Smith some months later to tellher that the investigation would take longer thanexpected. Finally, approximately a year later, heinformed her that the investigation had been concludedat the regional level. 30 The investigativefindings were cleared at the regional level on March2, 1984, and the national office cleared a letter ofcompliance review on July 27, 1982, and Federal investigatorsarrived on Sept. 14, 1982.During the fall of 1982, HHS personnel reviewed over onehundred charts of deaths between January and June, 1981,and March through August, of 1982. They subsequentlyreviewed 110 charts of babies with specified conditionsadmitted between October 1979 and December 1982. Theyalso conducted extensive reviews with Hospital physicians,nurses, social workers, administrators and others. . . .InMarch, 1983, OCR Investigator Peter Chan returned to theHospital for additional interviews with physicians. On July21, 1983, Investigator Chan again met with representatives ofthe Hospital requesting additional information.Letter from John E. Fenn, Chief of Staff, Yale-New HavenHospital to William J. Howard, General Counsel, U.S. Commissionon Civil Rights 1-2 (Oct. 6, 1988) (printed in app. D of thisreport).29Letter from Caroline Chang, Region I Director, Office forCivil Rights, U.S. Department of Health and Human Services, toState Sen. Regina Smith (Feb. 10, 1983) (on file at U.S.Commission on Civil Rights).30Telephone interview with State Sen. Regina Smith (Sept. 16,1988).134

finding on May 18, 1984. 31 In the meantime,however, enforcement was suspended in March1984 as a consequence of the suit challenging thefinal rules. 32 As a result, the letter of finding wasnever issued. 33In short, in a matter that by its nature was a matterof life and death, it took nearly 2 years from the timethe complaint was filed to bring an investigation toconclusion, at least 10 months of which was usedafter the investigators' medical chart review andinterviews of hospital personnel had already occurred.By the time HHS was finally ready to act, itwas too late.This pattern was to continue. In October 1983, anarticle entitled "Early Management and DecisionMaking for the Treatment of Myelomeningocele"was published in Pediatrics, 3 * the journal of theAmerican Academy of Pediatrics. The authors wereRichard H. Gross, MD, Alan Cox, MD, RuthTatyrek, MSW, Michael Pollay, MD, and WilliamA. Barnes, MD. They were from the departments ofOrthopaedic Surgery, Pediatrics, Neurosurgery, andUrology of the University of Oklahoma HealthSciences Center, and Department of Social Service,Oklahoma Children's Hospital, Oklahoma City. 35The article described a selective treatment programcarried out at Oklahoma Children's Hospital.The article tracked the "treatment" regimen for 69infants born with spina bifida between July 1, 1977,and June 30, 1982. 36 According to the article, ahospital team assessed each infant within 48 hours ofbirth. For those infants born with high lesions whowere suspected of having hydrocephalus or otheranomalies, a meeting was convened to decide upon atreatment recommendation to the family. The recommendationcould be for "vigorous" treatment orfor "supportive care." 37 "Supportive care" meantthat lifesaving surgery to close the lesion would notbe performed and "active treatment" would not begiven "for infection and other acute illnesses." 38 Inaddition, the criteria used by the team included anassessment of "contribution from home and family"31Telephone interview with Patricia Mackey, Office for CivilRights, U.S. Department of Health and Human Services (Sept.20, 1988).32Telephone interview with Peter Chan, Region I Office, Officeof Civil Rights, U.S. Department of Health and Human Services(Sept. 19, 1988).33Telephone interview with Patricia Mackey, Office for CivilRights, U.S. Department of Health and Human Services (Sept.20, 1988).34Gross, Cox, Tatyrek, Pollay & Barnes, Early Management andDecision Making for the Treatment of Myelomeningocele, 72Pediatrics 450 (1983).so that those families who had greater resourcesmight receive a recommendation for treatment andthose families with fewer resources would be morelikely to receive a recommendation against it, eventhough the severity of the disability might be thesame in both cases. 39Of the 69 infants in the experiment, 36, or 52percent, were recommended for treatment. Thirtythree,or 48 percent, were recommended for "supportivecare." Of those recommended for treatment,all survived with the exception of one who died as aresult of a car accident. Twenty-eight of the familiesreceiving the recommendation for nontreatment(supportive care) accepted the recommendation.The families of five children demanded treatment,and of those five children, three, according to theauthors, "are alive and well." 40 The majority ofinfants for whom no treatment was planned weresent to a facility called the Children's Shelter. 41 Atthe end of the experiment, 24 families had finallyagreed to the nontreatment regimen, and all 24children died. The experiment was called a successby the authors: "[T]his approach seems to us the bestalternative available at this time." 42The Pediatrics article came to the attention ofCarlton Sherwood, one of only two investigativereporters to have won both the Pulitzer and thePeabody awards for investigative reporting. He wasthen working for Cable News Network and took atelevision crew with him to Oklahoma. Initially, hewas denied interviews by both the hospital and theChildren's Shelter, a facility to which, according tothe article, children being provided only "supportivecare" were frequently sent. One snowy Sunday,however, a nurse named George McCormack decidednot only to allow the reporter and camera crewinside the shelter, but also to tell the story of hisunsuccessful attempts to obtain lifesaving surgeryfor a baby born with spina bifida who had not beentreated. 43Sherwood's camera captured the picture of CarltonJohnson, a black baby born with spina bifida to353837383940414243Id. at 450.Id at 452.Id.Id. at 452, 453.Id at 456.Id. at 451.Id. at 452.Id. at 457.Interviews with Carlton Sherwood (February 1984).135

an unmarried mother receiving welfare. 44 A largesac was visible on Carlton Johnson's back, accordingto McCormack the result of the refusal ofOklahoma Memorial Hospital-associated physiciansto treat him. McCormick told the reporter that hehad requested an operation for Carlton Johnson onmore than one occasion. 45Sherwood's discoveries and interview withMcCormack were aired in February 1984, as part ofa three-part series on Cable News Network whichprovided graphic evidence that the Oklahoma Children'sHospital not only had conducted the selectivetreatment experiment but also was apparently stillrefusing to provide necessary medical treatment tochildren born with surgically correctable problems,especially if the child came from a poor family.Of particular importance for the future legal statusof calls for Federal investigation of the selectionprocess was an interview with Carlton Johnson'smother. Sharon Johnson stated that the doctors hadtold her that her child could not live. She had noidea that with an operation her son would be able tomove into a family home and live as normal a life ashis disability would allow. 46 This evidence suggestedthat the physicians were not simply deferring toparental decisions, but rather securing parentalconsent to nontreatment by providing unwarrantablypessimistic prognoses. It raised the question ofwhether parents were in fact giving legally effectiveinformed consent.Attention within the disability rights movementwas drawn to the Pediatrics article soon after it waspublished. Michael Lottman, a disability rightsattorney and former Justice Department official,drafted a letter alleging that the Oklahoma proce-44Interviews with Carlton Sherwood (February 1984).45Cable News Network Transcript, Who Lives, Who Dies? 3(Feb. 21, 22, & 24, 1984) (on file at U.S. Commission on CivilRights).48Id.47Telephone interview with Michael Lottman (Aug. 24, 1988).48The Department of Health, Education, and Welfare wassubsequently divided into HHS and the Department of Education.HHS now has responsibility for these issues.49Interview with Martin Gerry (Sept. 13, 1988).50Letter to William French Smith, Attorney General, U.S.Department of Justice, and Margaret Heckler, Secretary, U.S.Department of Health and Human Services (Feb. 24, 1984) (onfile at U.S. Commission on Civil Rights).51The alleged violations were of section 504 of the RehabilitationAct, 29 U.S.C.A. §794 (1985); of the medicaid requirementsthat services not be denied to eligible recipients without a fairhearing, 42 U.S.C.A. §1396a(a)(3) (West Supp. 1988); thatmedical assistance to eligible recipients be of the same amount,dures entailed various constitutional and statutoryviolations. 47 His draft was brought to Martin Gerry,former director of the Office for Civil Rights in theDepartment of Health, Education, and Welfare. 48Gerry agreed with the basic findings in the Lottmandraft and circulated a revised letter of complaint tovarious disability rights groups. The Association forPersons with Severe Handicaps, the Association forRetarded Citizens/United States, the NationalDown Syndrome Congress, the Spina Bifida Associationof America, Martin Gerry, and Nat Hentoff, acivil libertarian columnist for the New York Cityweekly The Village Voice, joined in the formalcomplaint. 49On February 24, 1984, the written complaint wassubmitted to both Attorney General William FrenchSmith and Margaret Heckler, Secretary of theDepartment of Health and Human Services. 50 Thecomplaint alleged violations of three Federal statutesand the HHS regulations involving humanexperimentation. 51 It emphasized the urgency ofgovernment action in response to the complaint. "Itis imperative that the Federal Government actdecisively to put an end to these multiple and longstandingillegalities, and that intervention be effectedimmediately before more lives are lost. If existingadministrative procedures. . .cannot move quicklyenough in this desperate situation, then the governmentmust go to court to put an end to these deathspending a final administrative or judicial determination."52The Department of Health and Human Services isrequired to investigate complaints "promptly." 53Despite the life-threatening urgency of the allegationsin the complaint, 96 days passed before theduration, and scope as that provided to others, 42 U.S.C.A.§ 1396a(a)(10)(B) (West Supp. 1988); and that care and services beprovided in a manner consistent with the best interests of therecipient, 42 U.S.C.A. § 1396a(a)(19) (West Supp. 1988); ofregulations governing experimentation on human subjects, forbiddingsuch experimentation without informed consent, 45 C.F.R.§§46.116, 46.406 & 46.408 (1987); and of the Federal criminalcode, 18 U.S.C.A. §§241 & 242 (1969). Letter to William FrenchSmith, Attorney General, U.S. Department of Justice, andMargaret Heckler, Secretary, U.S. Department of Health andHuman Services 5, 6 (Feb. 24, 1984) (on file at U.S. Commissionon Civil Rights).52The letter invoked United States v. Frazer, 297 F. Supp. 319(M.D. Ala. 1968) as precedent for such a suit. Letter to WilliamFrench Smith, Attorney General, U.S. Department of Justice,and Margaret Heckler, Secretary, U.S. Department of Health andHuman Services 6 (Feb. 24, 1984) (on file at U.S. Commission onCivil Rights).5345 C.F.R. §§84.61 & 80.7(c) (1987).136

Office for Civil Rights (OCR) took measurableaction on the complaint. On May 30,1984, a meetingwas convened in Washington, D.C., attended byBetty Lou Dotson, OCR director; Surgeon GeneralC. Everett Koop; Kent Smith, executive director ofthe Spina Bifida Association of America; and twoprivate physicians who had been critical of thepractices reported at Oklahoma Children's Hospital,Dr. David McClone of Chicago Children's Hospitaland Dr. John Freeman of Johns Hopkins Hospital inBaltimore. Dr. Freeman later wrote that to "defus[e]the adversarial approach" and "prevent the necessityfor and the problems inherent in litigation," it wasthe "consensus of the meeting. . .to use a moreindirect approach to the University of Oklahomathrough Dr. Koop and the Spina Bifida Associationto see what current practices are being utilized bythe University of Oklahoma in their determinationsof who should be treated." 54 Physicians at thehospital refused to give the Surgeon General assurancesthat the practices had ceased. 55Disturbed by the reports of this meeting andwanting to make clear that the presence of arepresentative of one of the complainant groups atthe meeting could not be interpreted as adequatejustification for a failure to undertake a formalinvestigation and appropriate legal action, 56 MartinGerry on June 4, 1984, wrote identical letters to theAttorney General and the Secretary of Health andHuman Services "to advise. . .formally that I representeach of the organizations and individuals listedon the signature page of the February 24, 1984, letterin connection with matters raised in the Complaint."The letter emphasized that the February letter"represents a true and complete complaint" withregard to which 45 C.F.R. §80.7 required "that theDepartment of Health and Human Services initiate aprompt investigation 'whenever a compliance review,report, complaint, or any other informationindicates a possible failure to comply' with the law,"and to ask the Department to "designate] a liaison.. .for us to contact in order to avoid any futureconfusion." 57On July 2, 1984, Betty Lou Dotson, Director ofthe Office for Civil Rights in the Department ofHealth and Human Services, responded to the June4 letter to Secretary Heckler. She stated:When this matter came to our attention in February, weinitiated efforts to develop a comprehensive and legallyviable investigative plan. These efforts included a May 30,1984, meeting with the Surgeon General, two nationallyrecognized medical experts on spina bifida, the ExecutiveDirector of the Spina Bifida Association of America (acosigner of your earlier letter on this subject), and others.That meeting produced a consensus on the initial steps tobe taken to most effectively deal with this serious matter.Also during the course of these preliminary efforts, wereceived information, seemingly reliable but not independentlyverified, that the treatment procedures followedduring the 1977-82 time period are no longer in effect atthe University of Oklahoma Health Sciences Center. 58The letter also stated that after the March 12,1984, filing of a suit to enjoin the section 504 "BabyDoe" regulations, HHS, in order to avert a preliminaryinjunction, had agreed "to delay, until resolutionof the litigation, direct investigation of complaintsnot involving live infants at risk." It pointedout that on June 11 the district court had issued aninjunction barring HHS from investigating treatmentdecisions concerning newborn infants undersection 504.The letter recognized that the complainants "alsoasked that this issue be reviewed from the context ofHHS regulations regarding the Medicaid programand human experimentation." It justified not havingconsidered these issues because "HHS has concentratedits efforts to assure appropriate treatment forhandicapped infants on enforcement of section 504,the approach we believed to have the strongest legalbasis." In light of the court order precluding use ofthis basis, Ms. Dotson wrote, "I have forwardedyour complaint to the appropriate HHS offices forreview pursuant to these other authorities. . . .You54Letter from John Freeman to Betty Lou Dotson, Director,Office for Civil Rights, U.S. Department of Health and HumanServices, and C. Everett Koop, Surgeon General of the UnitedStates (May 30, 1984) (on file at U.S. Commission on CivilRights).55Gerry, The Civil Rights of Handicapped Infants: An Oklahoma"Experiment," 1 Issues in L. & Med. 15, 56 (1985), citingtelephone interview with C. Everett Koop, Surgeon General ofthe United States (Nov. 16, 1984).58Interview with Martin Gerry (Sept. 13, 1988).57Letter from Martin Gerry to William French Smith, AttorneyGeneral, U.S. Department of Justice (June 4, 1984) (emphasis inoriginal); letter from Martin Gerry to Margaret Heckler, Secretary,U.S. Department of Health and Human Services (June 4,1984) (emphasis in original) (on file at U.S. Commission on CivilRights).58Letter from Betty Lou Dotson, Director, Office for CivilRights, U.S. Department of Health and Human Services, toMartin Gerry (July 2, 1984) (date of June 29, 1984, also appearson letter) (on file at U.S. Commission on Civil Rights).137

can be sure all appropriate actions within our legalauthority will be taken." 59On July 3, 1984, William Bradford Reynolds,Assistant Attorney General of the Civil RightsDivision of the Justice Department, responded toMr. Gerry's June 4 letter to Attorney GeneralSmith. The Justice Department letter stated that"(u)nder federal regulations, this Department's rolein enforcing section 504 does not ordinarily commenceuntil the Department of Health and HumanServices or other authorized agency has referred amatter of violation of section 504 to us for appropriateaction." Presumably referring to the May 30meeting, Reynolds said: "In response to my recentinquiry on the status of such an investigation, theDepartment of Health and Human Services advisedthat it was in the process of convening a group ofexperts to develop an investigative plan and that theactivities of the Center were in the interim beingappropriately monitored." However, he wrote, inlight of the district court injunction, "recent judicialaction prevents further HHS action in this area atthis time."You also suggest that we consider criminal prosecutionsunder 18 U.S.C. [§§]241 and 242. Those statutes create noindependent rights, but depend on proof of violation ofexisting federal rights. As of now, the court decisions onthe treatment of handicapped infants under Section 504negate any federal right in that area. Even if we prevail inour position that Section 504 protects newborn infantsagainst discrimination based on handicap, we believe thataddressing the issue under Section 504 would be moresatisfactory than criminal proceedings. 60On July 13, 1984, Martin Gerry again wroteSecretary Heckler on behalf of the complainants,charging that "at least twelve additional disabledinfants [had] been unlawfully denied treatment bythe same facilities" in the preceding 3 months. Hechallenged the conclusion that action by the Departmentunder section 504 was precluded, maintainingthat the New York court's injunction need not beinterpreted to preclude investigation of a complaints » Id. As of September 1988, HHS had not informed thecomplainants of any investigations conducted, action taken, ordeterminations made with regard to the Oklahoma complaintunder these other authorities. Interview with Martin Gerry (Sept.13, 1988).60Letter from William Bradford Reynolds, Assistant AttorneyGeneral, Civil Rights Division, U.S. Department of Justice, toMartin Gerry (July 3, 1984) (on file at U.S. Commission on CivilRights).61Letter from Martin Gerry to Margaret Heckler, Secretary,U.S. Department of Health and Human Services (July 13, 1984)(on file at U.S. Commission on Civil Rights).138related to Oklahoma. 61 Secretary Heckler replied onOctober 11, 1984, reaffirming the conclusion of theHHS and Justice Departments that the New Yorkcourt's injunction had nationwide effect and precludedfurther HHS action. 62In October 1985, the American Civil LibertiesUnion and the National Center for the MedicallyDependent and Disabled (a Legal Services Corporation-fundednational support center) filed suit againsta number of physicians at Oklahoma Children'sHospital. The suit was filed on behalf of SharonJohnson (Carlton Johnson's mother), Carlton Johnsonhimself, the parents of another child withdisabilities who had died after allegedly being deniedlifesaving treatment at Oklahoma Children's Hospital,the Spina Bifida Association of America, and theAssociation for Persons with Severe Handicaps. 63On February 12, 1987, several Members ofCongress wrote HHS Secretary Otis Bowen tosolicit involvement of the Department in the case,which would include an HHS request for JusticeDepartment intervention. 64 Central to the letter wasan argument based on the Supreme Court's decisionin Bowen v. American Hospital Association. 6 * Bowenhad narrowed the injunction that, as entered by thelower courts, had forbidden HHS to investigate anycases involving denial of treatment to newbornchildren under the aegis of section 504. Bowenprohibited only investigation of such cases wherethere had been parental consent to the treatmentwithholding. In the Johnson case, the plaintiffsalleged that decisions to deny treatment were madeby hospital personnel without legally valid parentalconsent. However, HHS never agreed to be involvedor to request the intervention of the JusticeDepartment.The pattern is clear. The disability rights organizationsand Members of Congress ultimately faredno better with regard to Oklahoma Children'sHospital than did the Public Health Committee ofthe Connecticut State Legislature with regard to62Letter from Margaret Heckler, Secretary, U.S. Department ofHealth and Human Services, to Martin Gerry (Oct. 11, 1984) (onfile at U.S. Commission on Civil Rights).63Johnson v. Sullivan, No. CIV-85-2434A (W.D. Okla. filedOct. 3, 1985).64Letter from U.S. Reps. Beau Boulter, Thomas Bliley, BobDornan, Chris Smith, Jack Kemp, Harold Volkmer, and HenryHyde to Otis Bowen, Secretary, U.S. Department of Health andHuman Services (Feb. 12, 1987).65476 U.S. 610 (1986). For further discussion of this case, seechap. 6 and text accompanying notes 108-135.

Yale-New Haven Hospital. No legal action wastaken to stop the well-documented denials of treatment.In both instances, official complaints were documentedby credible and detailed information stronglysuggesting violations of section 504. In bothinstances, the complaints detailed an ongoing patternor practice that suggested that lives continued to beat risk. In both instances, prompt action would haveallowed investigations and compliance action to betaken before there was any judicial bar. 66 It took theJustice Department more than 3 months to refer theConnecticut complaint to OCR; it took OCR morethan 3 months to refer it to its regional office forinvestigation; and despite a pledge to complete theinvestigation in approximately 3 months, it took 15months—by which time it was too late. It took OCRmore than 3 months to take any significant action onthe Oklahoma complaint—and when it did, theaction was to substitute informal inquiries for thelegally required investigation. In short, confrontedwith substantial evidence of significant and ongoingdenial of lifesaving treatment to children withdisabilities, evidence that suggested an ongoingthreat to lives in both States, the responsible Federalagency failed to act with the vigor and dispatchincumbent on it in light of the circumstances, itslegal responsibilities, and its publicly stated position.The Child Abuse Amendments of 1984The second major Federal role in enforcing therights of children with disabilities to be free frommedical discrimination came with the effective dateof the Child Abuse Amendments of 1984. Beginningon October 9, 1985, and continuing through the88Courts are often influenced by the circumstances of precedentsettingcases. Both the Bowen Supreme Court decision and theSecond Circuit decision in University Hospital were issued by aclosely divided court. Given the compelling and sympatheticnature of the facts, if litigation had been initiated in either theConnecticut or the Oklahoma cases, it is at least possible that thedecisions ultimately rendered concerning the applicability of 504rendered by the courts might have been different.87See chap. 10.6842 U.S.C.A. §5103 note (West Supp. 1988). In commentssubmitted on a draft of this report, reprinted in app. E, the HHSInspector General stated that it was "incorrect" to characterizethe two studies as made in response to the requirement of theChild Abuse Amendments. Letter from Richard Kusserow,Inspector General, to William J. Howard, General Counsel, U.S.Commission on Civil Rights 1 (Oct. 12, 1988). However, on June8, 1988, HHS Secretary Otis Bowen submitted them to Congresswith a document entitled "Report to the Congress: Implementationof the Child Abuse Amendments of 1984 Relating to thepresent, the National Center for Child Abuse andNeglect in the Office of Human DevelopmentServices at HHS has had the responsibility forenforcing the requirements these grants impose uponthe States.This report has already detailed the failure of anumber of State Child Protective Services agencystandards and procedures to meet the prerequisitesfor Federal funding embodied in the Child AbuseAmendments and their implementing regulations.Nevertheless, these States have all been certified byHHS for receipt of Federal funds under the ChildAbuse Prevention and Treatment Act, withoutbeing advised that they are out of compliance orbeing given any deadline to bring their standardsand procedures into compliance. 67 The Commissionconsiders this a significant failing on the part ofHHS.In 1987 the Office of Analysis and Inspections ofthe HHS Office of Inspector General did two studiesin response to the requirement of the Child AbuseAmendments that "[n]ot later than October 1, 1987,the Secretary shall submit to the appropriate Committeesof the Congress a detailed report on theimplementation and the effects of the provisions ofthis part and the amendments made by it." 68 Onestudy focused on State Child Protection Services'implementation of the Child Abuse Amendments, 69while the other dealt with hospital review committees.70 Certain portions of those reports evince adisturbing failure on the part of the InspectorGeneral personnel involved in writing them eitherfully to understand the requirements of the ChildAbuse Amendments or to make the appropriateProtection and Care of Disabled Infants With Life-ThreateningConditions" (on file at U.S. Commission on Civil Rights). Thatdocument described its purpose as "to provide to the Congress, asrequired by Section 126 of Public Law 98-457 (the Child AbuseAmendments of 1984), a detailed report on the implementationand the effects of the provisions of this legislation for disabledinfants with life-threatening conditions." Id. at i. It stated: "[T]heDepartment. . .requested an inspection by the Office of InspectorGeneral (OIG) to (a) determine state compliance with these newrequirements, and (b) review hospitals' use of the Model Guidelinesfor Infant Care Review Committees. This study, conductedin FY 1987, found that the States and the hospitals are complyingwith the legislation." Id. at ii.69Office of Inspector General, Department of Health andHuman Services, Survey of State Baby Doe Programs (1987)[hereinafter State Agencies OIG Report].70Office of Inspector General, Department of Health andHuman Services, Infant Care Review Committees Under theBaby Doe Program (1987) [hereinafter Committees OIG Report].139

inquiries to determine whether they are beingcarried out.In the report on infant care review committees,for example, the Office of the Inspector Generalnoted that of the "between 20 and 36 potential BabyDoe cases since the Federal regulations went intoeffect in October 1985" considered by the 10committees whose activities were monitored, only 3were reported to state CPS agencies. 71 The Officeof Inspector General did not review the facts inthese unreported cases to determine whether or notthey met the standards established in the ChildAbuse Amendments. It is hard to see how, withoutdoing this, the Department could accomplish its taskof ascertaining whether the committees are fulfillingwhat HHS has described as "the role of the ICRC[infant care review committee] to review thecase. . .and recommend that the hospital seek CPSagency involvement when necessary to assure protectionfor the infant and compliance with applicablelegal standards." 72It is equally disturbing that, apparently as a typicalexemplar of such committees generally, the OIGreport provides a detailed description of the "interlockingInfant Bioethical Review Committees. . .infour affiliated hospitals which make up the AlbertEinstein College of Medicine and the MontefioreMedical Center in Bronx, New York," including anaccount of the "set of principles which serve as thebasis for making decisions involving critically illinfants," without pointing out that those principlesdiffer from the treatment standards required by theChild Abuse Amendments. 73The OIG report does make clear that, as discussedin some detail above, most of the committeessurveyed review only cases in which there isdisagreement among health care personnel or betweenthem and family members, and do not reportto CPS agencies if the disagreement can be resolved—regardless,for all the OIG report shows, ofwhether the agreed resolution abides by or violatesthe treatment principles embodied in the ChildAbuse Amendments. 74 In light of these significantindications of lack of compliance, 75 it is disconcertingthat the official reaction of the then ActingAssistant Secretary for Human Development Serviceswas that, "Overall, we are encouraged by thefindings, observations, and data contained in thesereports. . . .The findings and data reported do notraise serious questions or issues for our attention." 7671Id. at 9. See chap. 11, text accompanying notes 73-77, for adiscussion of the provisions of the Child Abuse Prevention andTreatment Act that require all "suspected" cases of withholdingof medically indicated treatment be reported, not merely those inwhich a hospital committee finally decides that such has in factoccurred or is about to occur. The Inspector General's reportfails to comment on this apparently widespread noncompliance,and HHS has neglected to take any action to inform States thattoleration of such illegal failure to report does not meet theirresponsibilities under the relevant law.72Child Abuse and Neglect Prevention and Treatment Program,50 Fed. Reg. 14878, 14880-81 (1985).78Committees OIG Report, supra,note 70, at 11-12. TheCommittees OIG Report describes the principles as recognizingthat "[withholding or withdrawing treatment may be consideredwhen it is deemed futile and would merely prolong the dyingprocess or when the medical treatment imposes a burden whichlacks compensating benefits for the Infant. If such a decision ismade, the infant and the family are cared for in a supportive anddignified manner." Id at 11. Cf. 45 C.F.R. §1340.15(b)(2) (1987).In his letter commenting upon a draft of this report, the InspectorGeneral described this passage as "misleading" because "[t]hepurpose of this portion of the report was simply to serve as areference to other hospitals considering the establishment ofsimilar committees." Letter from Richard Kusserow, InspectorGeneral, to William J. Howard, General Counsel, U.S. Commissionon Civil Rights 2 (Oct. 12, 1988). But that is precisely whatthe Commission criticizes: a government agency suggesting that acommittee employing principles out of compliance with the law isa fit reference for other hospitals that might establish suchcommittees.74See chap. 11.75Facts indicating other instances of incomplete compliance areincluded in the report on State agencies. 45 C.F.R. § 1340.15(c)(3)(1986) requires:The programs and/or procedures must specify that thechild protective services system will promptly contact eachhealth care facility to obtain the name, title, and telephonenumber of the individual(s) designated by such facility forthe purpose of the coordination, consultation, and notificationactivities. . ., and will at least annually recontact eachhealth care facility to obtain any changes in the designations.The Agencies OIG report discloses that as of March 1987, fiveStates admitted that more than one-third of their hospitals withneonatal intensive care units or obstetrical units had not designatedsuch liaisons, 13 States admitted that some number of suchhospitals (less than one-third) had not done so, and 3 Statesadmitted that they did not know how many had done so. Stateagencies OIG Report at 4, supra, note 69. Furthermore, only 28States stated that they updated their lists of liaisons annually, asrequired; 5 stated they update "periodically or as needed," whilethe others apparently failed to reply. (The Agencies OIG Reportleaves unclear whether some of the 28 States did not receiveFederal funds, and thus were not required to comply with theChild Abuse Amendments.) Id.78Memorandum from Phillip N. Hawkes, Acting AssistantSecretary for Human Development Service, HHS, to Richard P.Kusserow, Inspector General, HHS (Sept. 11, 1987) reprinted inCommittees OIG Report, supra, note 70 at app. E at 1-2. TheActing Assistant Secretary did not express concern that 22percent of the State agencies "responded that, because of themedical and ethical issues involved, CPS responsibility for BabyDoe cases is not appropriate. We will consider what appropriateaction HDS [Office of Human Development Services] might take140

However, after reviewing a draft of relevantportions of this report, Assistant Secretary SydneyOlson commented:We are extremely concerned about your findings whichindicate that a number of State Child Protective Service(CPS) agencies may fail to meet the requirements forfederal funding as provided for in 45 C.F.R. 1340.15, andyour statement that the Department of Health and HumanServices has incorrectly certified them as eligible. Theissues you raise are indeed serious. 77The letter stated that "[b]ecause of the informationcompiled in the [Civil Rights Commission draft]report," the HHS Office of Human DevelopmentServices will convene a staff work group "to reviewour current policies and instructions to determine ifthere are ways in which we can improve theadministration of the Federal program and the use ofFederal funds to accomplish its purposes" and "willreview the eligibility of each State cited in yourreport, paying special attention to those areas ofconcern that you have identified." 78to further clarify and reinforce CPS agency responsibilities." Id.at app. E at 2.77Letter from Sydney Olson, Assistant Secretary, Office ofHuman Development Services, to William J. Howard, GeneralConclusionThe Commission is dismayed at the extremelypoor performance of the Department of Health andHuman Services in fulfilling its responsibilities toprotect children with disabilities from medical discrimination,first under section 504 of the RehabilitationAct in the time period before its use wasenjoined, and currently under the Child AbuseAmendments of 1984. That performance requiressubstantial improvement. Although the Commissionis encouraged by steps the Office of Human DevelopmentServices now states it will take in responseto this report, it is too soon to determine whetherthey will result in the very significant increase inscrutiny of the performance of recipient State childprotective services agencies that is essential if theDepartment is effectively to fulfill its responsibilitiesunder the law.Counsel, U.S. Commission on Civil Rights 1 (Oct. 31, 1988)(reprinted in app. E of this report).78Id. at 2.141

Chapter 13The Protection and Advocacy System: AResource for EnforcementIn 1975 Congress established structures calledProtection and Advocacy Systems (P&A), originallyattuned specifically to the need to ensure vigorousadvocacy of the rights of persons with developmentaldisabilities. 1 The Developmentally DisabledAssistance and Bill of Rights Act required that eachState or similar jurisdiction receiving Federal fundingfor persons with developmental disabilities establishan independent system with "authority to pursuelegal, administrative, and other appropriate remediesto insure the protection of the rights of [persons withdevelopmental disabilities]." 2In 1984, in substantially expanding funding for theP&A systems, Congress recognized both their importanceand their impressive track record. TheSenate Committee on Labor and Human ResourcesReport noted:The Committee views State Protection and AdvocacySystems (P&A's) to be of critical importance in anexpanding effort by the Congress to assure disabledpersons. . .protection of their rights under law. . . .[T]heP&A's provide an invaluable local and thus availableresource to developmentally disabled people which isindependent, yet knowledgeable of service providers. TheThe law currently defines "developmental disability" to mean:a severe, chronic disability of a person which—(A) is attributable to a mental or physical impairment orcombination of mental and physical impairments;(B) is manifested before the person attains age twentytwo;(C) is likely to continue indefinitely;(D) results in substantial functional limitations in three ormore of the following areas of major life activity: (i) selfcare,(ii) receptive and expressive language, (iii) learning,(iv) mobility, (v) self-direction, (vi) capacity for independentliving, and (vii) economic self-sufficiency; and(E) reflects the person's need for a combination andsequence of special, interdisciplinary, or generic care,treatment, or other services which are of lifelong orCommittee notes favorably the testimony provided by Dr.Jean Elder, Commissioner of the Administration onDevelopmental Disabilities that "[i]n FY 1982, 41 StateP&A systems served more tha[n] 41,000 persons." 3In 1986, "[b]ecause of the past accomplishments ofthe Developmentally Disabled Protection and AdvocacySystem [DD P&A]," Congress chose "tobuild on the experience of the existing DD P&ASystem in investigating and resolving situationsinvolving abuse and neglect" 4 of persons withmental illness by adding responsibility for advocacyfor this population to the P&As. 5 In fiscal year 1987,the P&A systems were appropriated $15.5 millionfor advocacy on behalf of persons with developmentaldisabilities and $10.5 million for advocacy onbehalf of persons with mental illness. 6 With thesefunds, the P&As provided advocacy for 70,501persons with developmental disabilities (of whom2,823 were represented in the context of medicaland/or mental health services) and for 9,758 personswith mental illness (of whom 1,254 were representedin the context of alleged neglect in the provision ofmedical/mental health treatment). 7 These figures doextended duration and are individually planned and coordinated.42 U.S.C.A. §6001(5) (West Supp. 1988).2Pub. L. No. 94-103, sec. 203, §113, 89 Stat. 486, 504 (1975)(current version at 42 U.S.C.A. §6042 (West Supp. 1988)).sS. Rep. No. 493, 98th Cong., 2d Sess. 28, reprinted in 1984 U.S.Code Cong. & Admin. News 4334, 4361.• S. Rep. No. 109, 99th Cong., 1st Sess. 3, 8, reprinted in 1986U.S. Code Cong. & Admin. News 1361, 1363, 1368.5Protection and Advocacy for Mentally 111 Individuals Act of1986, Pub. L. No. 99-319, 100 Stat. 478 (codified at 42 U.S.C.A.§§ 10801 to 10851 (West Supp. 1988)).6National Association of Protection and Advocacy Systems,1987 Annual Statistical Report 2, 3 (1988).7Id. at 5, 7, 13, 15.142

not include the more than 160,000 individualsrepresented in class action suits in which the numberis known, or those represented in class action suits inwhich the number is not known. 8P&A staff consist of attorneys, social workers and otheradvocates who are capable of providing a full range ofadvocacy services including the ability to pursue legal,administrative and other appropriate remedies to protectthe rights of clients. . . .P&A activities include: (1) investigating, negotiating ormediating solutions to problems expressed by persons withdevelopmental disabilities, persons with mental illness orclients of DVRs [departments of vocational rehabilitation],their families or agency representatives; (2) providingtechnical assistance to attorneys, governmental agenciesand service providers; (3) providing legal counsel andlitigation services to persons in this population and groupswho are unable to attain adequate or appropriate legalservices in their communities; and (4) training advocates,consumers, volunteers, professionals, and other parties. 9The United States Commission on Civil Rightsthinks that the P&A system affords an experiencedand appropriate resource to remedy discriminatorydenial of medical treatment, food, and fluids topeople with disabilities. It is clear that P&Ascurrently have a general jurisdiction that encompassessuch instances. 10 Indeed, P&As have handledsome such cases in the past. In 1983 the Idahoagency, Coalition of Advocates for the Disabled,was involved in the highly publicized "Baby Ashley"case, defending the right of a child born withhydranencephaly to receive treatment." In 1986 theMinnesota agency, the Minnesota Mental HealthLaw Project, represented hospital residents withtreatment-related concerns. 12 In 1987 the Mississippiagency, Mississippi P&A System for DD, Inc., wasinvolved in a case concerning refusal by a medicaremedicaidrecipient State hospital to provide lifepreservingdialysis treatment to an individual duallydiagnosed with developmental disabilities and mentalillness. 13 But the P&A system has not been calledupon for the bulk of enforcement in this area. Indealing with denial of treatment to children withdisabilities in 1984, for example, Congress reliedupon the State child protective services (CPS)agencies.8Id. at 5, 13.9National Association of Protection and Advocacy Systems,1987 Annual Statistical Report 3 (1988)."» See 42 U.S.C.A. § 6042(aX2)(A)&(B) (West Supp. 1988).11Telephone interview with Jim Baugh, Managing Attorney,Coalition of Advocates for the Disabled (Dec. 1, 1988).- For reasons detailed below, the Commissionbelieves that the P&A system should be brought intoactive involvement in efforts to prevent illegaldenial of treatment to children with disabilities. Insummary, the Commission envisions the followingnew approach:• Prompt reports of suspected or actual cases ofwithholding of medically indicated treatmentwould still be required to go to CPS agencies, andCPS agencies would retain the authority andresponsibility to investigate them. However, theState P&A agency would be notified by the CPSagency as soon as the CPS agency received anysuch report. The P&A would have access to therecords obtained and information developed bythe CPS agency. As a representative of theinterests of the child, the P&A agency would haveindependent authority, similar to that now held bythe CPS agency, to obtain medical records and toobtain a court order for an independent medicalexamination. Further, the P&A agency wouldhave independent standing to initiate a courtproceeding to authorize medical treatment for thechild, in addition to possessing standing to appearon behalf of the child in any court proceeding toauthorize medical treatment initiated by the CPSagency.• To catch cases that are not being reported tothe CPS agency, any hospital that uses a committeeto review a prospective instance of withholdingof treatment from a person with a disabilitywould be required to notify the State P&A agencyof meetings held to discuss the case. The P&Awould then be afforded the opportunity to examinethe medical records and discuss the situationwith physicians, relatives, and the committee. Ifthe P&A deemed it necessary, it could obtain acourt order for an independent medical examination.If the P&A concluded that medically indicatedtreatment would be withheld illegally, it wouldhave the standing to institute a court proceedingto require that it be provided.• To provide a deterrent to physicians who notonly might fail to report a case of withholding tothe State CPS agency but also might not submit itto a hospital committee, the P&A would haveIaNational Association of Protection and Advocacy Systems,1986 Annual Statistical Report, App. Ill at 4 (1988).13National Association of Protection and Advocacy Systems,1987 Annual Statistical Report 18 (1988).143

authority to conduct retrospective reviews of themedical records of those with disabilities who diein the State. If instances of illegal withholding ofmedical treatment were detected, the P&A couldseek appropriate action by licensing boards orFederal funding sources; in extreme circumstances,it could institute suits for injunctive ormonetary relief or refer cases for investigation byprosecuting attorneys.The Commission sees several advantages to involvingthe P&A systems more directly in theenforcement of the Child Abuse Amendments of1984.First, and perhaps most important, the P&Asystem has far more specialized experience in safeguardingthe rights of persons with disabilities thandoes the CPS system. Although the CPS systemdeals with the abuse and neglect of all children, mostof whom are not disabled, the P&A system since itsinception has concentrated on protecting the rightsof persons with disabilities. As chapter 10 documents,there is a disturbing tendency among CPSworkers to evince many of the negative attitudes andpessimistic views concerning people with disabilitiesthat are prevalent in the society as a whole. Becauseof their greater experience with persons with disabilities,and the knowledge and sensitivity they havethereby acquired, it is only natural that P&Aworkers are on the average more likely than CPSworkers to be vigorous, effective, and reliableadvocates for the treatment rights of those withdisabilities.Second, the P&A system is less likely to beaffected by conflicts of interest than the CPS system.CPS agencies are integral parts of the State bureaucracy,compromising their willingness or ability totake action against other State agencies, such asState hospitals, that may be alleged to be involved intreatment denial. 14 By contrast, the P&A system isstatutorily independent of State agencies. The Governorof each State has the authority to designate theP&A agency for each State. 15 However, the 1984Developmental Disabilities Amendments sought toensure the independence of the system by requiring"assurances. . .that the agency implementing the14See chap. 10.15National Association of Protection and Advocacy Systems,1987 Annual Statistical Report 1 (1988).16Developmental Disabilities Act of 1984, Pub. L. No. 98-527,sec. 2, § 142(a)(5), 98 Stat. 2662, 2680 (codified at 42 U.S.C.A.§6042(a)(5) (West Supp. 1988)).system will not be redesignated unless there is goodcause for the redesignation and unless notice hasbeen given of the intention to make such redesignationto persons with developmental disabilities ortheir representatives." 16 The Senate Labor andHuman Resources Committee Report emphasized:The Committee is. . .concerned that any change inP&A designation within any jurisdiction be only for goodcause. Such good cause does not, in the Committee's view,mean aggressiveness—specifically litigation against anyagency of state or local government—in the pursuit of thedesignee's mandate to protect persons with developmentaldisabilities. . . .The Committee urges the Administrationon Developmental Disabilities [the HHS unit in charge ofsupervising the developmental disabilities aspect of theP&As] to promulgate regulations and to carefully evaluateany redesignation request to assure that there is both goodcause for any redesignation request and that notice of suchrequest has been provided to clients and client groupswithin the jurisdictions of the appointing authority prior tothe request being submitted to the Administration onDevelopmental Disabilities. 17Third, since CPS agencies rely heavily on themedical profession as the major source of reports of"traditional" child abuse and neglect with whichthey are primarily concerned, they are often reluctantto jeopardize that working relationship byappearing in an adversarial relationship in thecontext of alleged medical neglect. 18 Unlike theCPS agencies, the P&A agencies have no specialrelationship with the medical profession that wouldimpair their ability to be vigorous advocates.Fourth, P&A agencies are accountable to thepopulations they serve. They must provide anannual opportunity to the public to comment ontheir priorities and must have a grievance procedure"to assure that persons with developmental disabilitieshave full access to services of the system." 19This provision for oversight, not present in mostCPS agencies, is an important check on the dangerof relaxing the vigilance and vigor essential toeffective advocacy. The Developmental DisabilitiesAssistance and Bill of Rights Act Amendments of1987, 20 in the words of the Senate Labor andHuman Resources Committee Report, added:17S. Rep. No. 493, 98th Cong., 2d Sess. 29, reprinted in 1984 U.S.Code Cong. & Admin. News 4334, 4362.18See chap. 10.1942 U.S.C.A. §6042(a)(2)(C)&(D) (West Supp. 1988).20Pub. L. No. 100-146, 101 Stat. 840 (codified at 42 U.S.C.A.§§6000-6083 (West Supp. 1988)).144

several provisions designed to enhance the accountabilityof the protection and advocacy systems by: ensuringparticular attention be paid to the needs of Indians andmembers of racial and ethnic minorities who are developmentallydisabled; requiring the establishment of grievanceprocedures; and by providing the public with an opportunityto make public comment on the priorities establishedby the System. 21— In the view of the Commission, therefore, it isdesirable to make better use of the P&A systems toenforce the Child Abuse Amendments of 1984 andsection 504, as well as other constitutional, statutory,and regulatory provisions protecting the medicaltreatment rights of persons with disabilities. To doso, certain tools are essential.First, when a State CPS agency receives a reportalleging the withholding of medically indicatedtreatment from someone with a disability, the StateP&A should immediately be notified. At present,there is no provision for notification of the P&A. Toenable it to make an independent assessment and, ifdeemed necessary, to take independent action toprotect the medical treatment rights of the child, theP&A should have access to any information receivedor developed by the CPS agency. For thesame reason, it should be given the authority toinvestigate the allegation, to designate medical professionalsto review the medical records, and if needbe, to secure a court order permitting these medicalprofessionals to conduct a medical examination. Itshould have the authority to represent the interestsof the child in any court proceeding, as well asindependent standing to bring a court action toenforce the child's rights.Second, access to medical records is essential notonly when a CPS agency has received a report ofdenial of treatment, but also when the P&A independentlyreceives a report. Medical records are the keysource in evaluating the validity of allegations ofillegal denial of treatment. As the American BarAssociation's Model Procedures note:Records, if properly maintained, are the most objectivedata available. Interviews by themselves may be misleading,if persons alter, omit, or embellish facts. Also, recordsmay reveal contrary views expressed by nurses, doctorsand others. The medical records should provide documentaryevidence of the course of the patient's medicalevaluation, treatment, and change in condition, and ofcommunication between the responsible physician and anyother health professional contributing to the patient's care.The infant's medical record should specifically contain: (1)identification information; (2) evidence of appropriateinformed consent or indication of why it is absent andwhat is being done to obtain the necessary consent; (3)patient's medical history; (4) report of patient's physicalexamination; (S) diagnostic and therapeutic orders; (6)observations of patient condition, including progress notesand nursing notes; (7) report of all procedures, tests, andtheir results; and (8) conclusions, including the provisionaldiagnosis, associated diagnoses, clinical resume, and necropsyreports. 22In 1984 Congress amended the law to ensure P&Aagencies access to the records of institutionalizedpersons with developmental disabilities when complaintsfrom or on their behalf had been received bythe P&A and they had no legal guardian other than ablanket public guardian. 23 The 1986 legislationprovided for access to the records of persons withmental illness under a more detailed but essentiallysimilar standard, 24 and a correlative provision wasinserted into the developmental disabilities law in1987. 25 In circumstances in which denial of treatmentto children (and often older people) withdisabilities is in contemplation, however, the parentsor other guardians have, typically, nominally consentedto the treatment denial. It is essential, therefore,that in such cases the P&As have authority toobtain access to the records, with appropriateassurances of confidentiality, without requiring theconsent of the guardian.Third, to circumvent the documented failure ofmany hospitals to report suspected instances ofwithholding of medically indicated treatment thatcome before their infant care review committees, 26new mechanisms are needed. Any health care21S. Rep. No. 113, 100th Cong., 1st Sess. 24, reprinted in 1987U.S. Code Cong. & Admin. News 781, 803.22Nicholson, Horowitz & Parry, Model Procedures for ChildProtective Service Agencies Responding to Reports of WithholdingMedically Indicated Treatment From Disabled Infants With Life-Threatening Conditions, 10 Mental & Physical Disability L. Rep.220, 239 (1986) (footnotes omitted).28Developmental Disabilities Act of 1984, Pub. L. No. 98-527,sec. 2, § 142(aX2)(D), 98 Stat. 2662, 2679 (codified as amended at42 U.S.C.A. §6042(aX2XG) (West Supp. 1988)). See also S. Rep.No. 493, 98th Cong., 2d Sess. 30, reprinted in 1984 U.S. CodeCong. & Admin. News 4334, 4363.24Protection and Advocacy for Mentally 111 Individuals Act of1986, Pub. L. No. 99-319, sec. 105(aX4) 100 Stat. 478, 480(codified at 42 U.S.C.A. § 10805(aX4) (West Supp. 1988)).25Developmental Disabilities Assistance and Bill of Rights ActAmendments of 1987, §301(a)(3), Pub. L. No. 100-146, 101 Stat.840, 852 (codified at 42 U.S.C.A. §6042(aX2)(G) (West Supp.1988)).26See chaps. 10 and 11.145

facility that uses such a committee (or any otherstanding or ad hoc committee) 27 to review anyprospective instance of withholding of treatmentfrom a person with a disability should be required tonotify the State P&A of any committee meeting toconsider such a case. The P&A should be affordedthe opportunity to examine the medical records anddiscuss the situation with physicians, relatives, andthe committee.Fears that such a notification requirement wouldlead to frequent adversarial confrontations andvexatious litigation are not warranted by the trackrecord of the P&As. P&As have developed atradition of resolving potential violations of therights of persons with disabilities or mental illnesswithout litigation. "These Protection and AdvocacySystems (P&As) served approximately 85,000 peoplein 1986, and have been successful in negotiating 97percent of their cases without resort to litigation." 28Vigorous rights advocacy does not invariably requireadversary courtroom proceedings, and it maywell be that the rapid involvement of the P&Aadvocates on a local level while decisionmaking isstill in process and positions have not hardened willavert the need for confrontation in many instances.Unlike most CPS agency workers, most P&Aworkers should be familiar with local and specializedparent support groups, sources of financial andinkind support and counseling, which can be sharedwith the parents, health care personnel, and internalhospital committee. (P&As are responsible for significantinformation and referral for persons withdevelopmental disabilities. 29 ) This may well lead toagreement on the part of all to follow a course oftreatment in full compliance with the law. In thiscontext, the language of the 1984 Senate Committeereport is particularly appropriate: "The Committeecommends the emphasis by P&A's on mediationand/or administrative remedies while at the same27A 1985-1986 survey of hospitals with 1,500 or more birthsannually or a neonatal intensive care unit found that even whenno official committee is designated:In many hospitals an informal group structure is used. In6.7 percent of hospitals, this includes physicians, specialists,and parents; in 5.7 percent, it includes a group of professionalsin the hospital; [and] in another 2.5 percent of the cases itincludes a group of physicians. . . .R. Greenstein, S. Hudd & G. Fleming, National CollaborativeSurvey of Infant Care Review Committees in United StatesHospitals 6 (1987). See also University of Connecticut MedicalSchool/American Academy of Pediatrics, Project Summary!,]Infant Care Review Committees in United States Hospitals: ANational Survey 2 (1987).time recognizes that there will undoubtedly befuture instances where litigation is the necessaryalternative to protect disabled persons' rights." 30Fourth, to provide both a mechanism for evaluatingcompliance and a deterrent to violations, eachState P&A should have retrospective access to themedical records of all children with disabilities whodie. Presumably, in most States only a randomselection would be routinely reviewed most years.However, authority should exist to review confidentiallyas many as the P&A deems necessary.To ensure protection of the rights of institutionalizedpersons with developmental disabilities,Congress has already required that P&As automaticallybe provided annual survey reports on everyintermediate care facility for people with mentalretardation in their States. 31 The Commissionconsiders this proposal to be a reasonable extensionof that precedent. Requiring notification to the P&Awhenever an infant care review committee convenesto consider a "live" case, standing alone, willprobably ameliorate the widespread failure to reportby health care facilities, but it is unlikely to cure it.Since the establishment of such committees is voluntarywith each hospital, it will have no effect onthose facilities without them. Beyond this, the effectof the notification requirement, if there were noretrospective access, might be to drive undergroundcontemplated withholding of treatment, as physiciansseeking to avoid outside review might simplycease to use the formal hospital committees. Aknowledge that all deaths of children with disabilitieswill at least potentially be subject to retrospectivereview will significantly reduce that incentive.Fifth and finally, the Commission agrees withwhat the Senate Committee wrote in a slightlydifferent context: "Providing the resources necessaryto match the mandate of the P&A systems isessential if the job is to be done." 32 Appropriate28S. Rep. No. 113, 100th Cong., 1st Sess. 10, reprinted in 1987U.S. Code Cong. & Admin. News 781, 790. See also S. Rep. No.493, 98th Cong., 2d Sess. 28, reprinted in 1984 U.S. Code Cong. &Admin. News 4334, 4361 (98 percent of FY 1982 cases resolvedwithout litigation).2942 U.S.C.A. §6042(a)(2)(A)(ii) (West Supp. 1988).30S. Rep. No. 493, 98th Cong., 2d Sess. 28, reprinted in 1984 U.S.Code Cong. & Admin. News 4334, 4361. See also S. Rep. No. 113,100th Cong., 1st Sess. 10, reprinted in 1987 U.S. Code Cong. &Admin. News 781, 790.3142 U.S.C.A. §6042(a)(4) (West Supp. 1988).32S. Rep. No. 493, 98th Cong., 2d Sess. 29, reprinted in 1984 U.S.Code Cong. & Admin. News 4334, 4362.146

additional funding for the P&As will be needed to With these powers and resources, the P&A systemimplement these new responsibilities. It should be would be in a position to bring about what theadequate both for State-by-State implementation and Commission believes would be a significant imforsupportive training and technical assistance, provement in enforcement of the medical treatmentincluding resources for the rapid evaluation of rights of persons, especially children, with disabilimedicalconditions.ties.147

Chapter 14Findings and RecommendationsThe United States Commission on Civil Rightshas undertaken to produce this report under itsstatutory mandate to "submit reports to theCongress and the President at such times as theCommission, the Congress or the President shalldeem desirable." 1Nearly 7 years ago, the Nation's attention wascaptured by news accounts of the starvation ofInfant Doe in Bloomington, Indiana. Details of thatcase as well as of many other cases of wrongfuldenials of medical treatment for children born withdisabilities are contained in this report. The reporthas examined and found serious deficiencies in theimplementation of the Child Abuse Amendments of1984 and makes recommendations to remedy thesedeficiencies. Furthermore, this report provides evidencethat was unavailable in the administrativerecord and that would have been useful to theSupreme Court in its consideration and subsequentinvalidation of the Infant Doe regulations at issue inBowen v. American Hospital Association.In the course of its hearings on the subject matterof this report, the Commission received testimonyfrom a wide variety of individuals, including medicalspecialists, persons with disabilities, ethicists,hospital administrators, Federal officials, parents,academicians, and representatives of disabilitygroups. These hearings have been published separately.2 Of the many statements the Commissionreceived, however, an excerpt from the testimony ofRobert Williams, deputy director of the Pratt MonitoringProgram of the D.C. Association for Retard-142 U.S.C.A. § 1975c(c) (West Supp. 1988).2Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights (1985) (vol. I) & (1986) (vol. II).ed Citizens, who himself has a physical disability,perhaps best sums up the essence of this report:[T]he way to secure commitments [to improve the waypeople with disabilities are treated and the services theyreceive] is not. . .[to] suggest that care be withheld fromnewborn infants with severe disabilities until adequatefunding is provided to help them obtain their maximumdevelopmental potential. What benefit can result from thisstrategy? At best it can be seen as an extreme example ofcircular reasoning. At worst it can lead to the most viciousof circles. Appropriate support services necessary to assistthe families of newborns with severe disabilities to loveand care for their child in their own home will not beavailable as long as we devalue the life of a child so muchthat it becomes acceptable to withhold the most ordinarycare. 3Based on its hearings, research, and this report,the Commission adopts the following findings andrecommendations:General Findings1. Surveys of health care personnel, the resultsof investigative reporting, the testimony of peoplewith disabilities and their relatives, and the repeatedlydeclared views of physicians set forth in theirprofessional journals all combine to persuade theCommission of the likelihood of widespread andcontinuing denials of lifesaving treatment to childrenwith disabilities.2. The Commission is convinced that the evidencesupports a finding that discriminatory denialof medical treatment, food, and fluids is and has beena significant civil rights problem for infants withdisabilities. It is also persuaded that the available3Protection of Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 272 (1986) (vol. II).148

evidence strongly suggests that the situation has notdramatically changed since the implementation ofthe Child Abuse Amendments of 1984 on October 1,1985.3. The grounds typically advanced to supportdenial of lifesaving medical treatment or food andfluids are based on erroneous judgments concerningthe quality of life of a person with a disability or onsocial judgments that such a person's continuedexistence will impose an "unacceptable" burden onhis or her family or on the Nation as a whole. Thesejudgments are often grounded in misinformation,inaccurate stereotypes, and negative attitudes aboutpeople with disabilities.4. Many people, including members of the medicalprofession, hold negative attitudes about life withdisability that affect not only children but also adultswith disabilities. Moreover, direct testimony wasprovided at the Commission hearings that theseattitudes exist and that discrimination in the provisionof lifesaving and other medical treatment occurswith respect to adults with disabilities as well as incases involving infants and children. Further factfindingis needed to determine the extent of discriminatorydenial of medically indicated treatment incases involving adults with disabilities.5. There is evidence that in many instances inwhich lifesaving treatment is denied to children withdisabilities, their parents are only nominally makingthe decision to withhold the treatment. In practicethe doctors are often the prime movers in denyingthe treatment.6. The question of whether children with disabilitiesshould be denied lifesaving treatment hasfrequently been couched in popular debate asthough the issue were the wisdom of governmentintrusion into matters of parental discretion. In fact,however, for decades the universally accepted lawhas been that when parents make treatment decisionsthat will undebatably lead to the death of theirnondisabled children, the state will intervene toensure the children's survival by mandating provisionof lifesaving medical care. It is only when thechildren have disabilities that the claim of parentalautonomy is given serious sympathetic consideration.Thus, the decisions upholding putative parentaldecisions to deny lifesaving treatment to theirchildren with disabilities are rooted less in a respectfor parental authority than in a bias against disability.7. There are substantial economic costs associatedwith some forms of disability. Many costs,however, are less a function of the disability or theseverity of the disability than of a policy that tendsto segregate and isolate, at enormous public cost,those persons considered most severely disabledwithout even considering the alternative of providingsocial and economic support for the family. Theassumptions influencing denial of treatment haveoften been: (1) that the level of severity of disabilityis the major determinant of lifetime costs; (2)consequently, that the more severely disabled a childmay appear to be at birth the less likely it is that thechild will be able to contribute as an adult to his orher own economic sufficiency; and (3) therefore, themore expensive it will be to meet that person's basicneeds. Although these assumptions rest on majorfallacies, reliance on them has resulted in a selffulfillingprophecy: a diagnosis of severe disability atbirth leads to placements in residential and nonworkenvironments that significantly limit that person'scapability and entail far more expense than necessary.The ultimate irony occurs when the expensethat is the consequence of the original unfoundedand stereotypical assumption becomes a basis forending the lives of persons with severe, or what arethought to be severe, disabilities shortly after theyare born.8. The record developed during the Commission'stwo hearings and continuing investigationdemonstrates that there is a grave danger to theconstitutional rights of newborn children in cases inwhich food, water, and necessary medical care aredenied on the basis of disability and predictionsconcerning future quality of life. The principle ofequal protection of the law is offended whendisability is the basis of a nontreatment decision.Procedural protections for the interests of both childand parents are often absent completely or arewoefully inadequate to the task of sifting the facts.General Recommendations1. The Commission concludes that the Congressand the President should address the very realproblems faced by people with disabilities and theirfamilies. The President should take the lead infostering the development of a climate of socialacceptance of persons with disabilities and theirfamilies by speaking publicly on the issue. ThePresident should instruct the White House Councilon Domestic Policy to review the adequacy, as well149

as the coordination and development of, supportiveservices intended to assist such families. The Presidentshould order a review of the mechanismsdesigned for vigorous enforcement of the statutoryrights of those with disabilities to accessible andintegrated transportation, housing, education, healthcare, and employment. In addition, the appropriatecommittees of the Congress should schedule hearingsto address these questions.2. In considering legislation designed to preventdiscrimination against persons with disabilities,Congress should take care to make clear thatdiscrimination in the course of rendering medicaltreatment is precluded.3. There is a need for factfinding activities bythe Congress, the State legislatures, and Federal,State, and local agencies charged with the enforcementof civil rights laws and medical standards, todetermine the extent to which adults with disabilitiesare subjected to discrimination in the provision ofmedical care and treatment, and to evaluate whatremedies exist or are needed to prevent futurediscrimination of this kind from talcing place. Inparticular, the new Secretary of Health and HumanServices should direct the Department to undertakesuch a study.Specific Findings Regarding Support forFamilies with Disabilities1. The period surrounding birth is a time ofconsiderable stress and emotion, and for nondisabledparents the birth of a child with a disability typicallycomes as a great shock. While beset by traumaticfeelings of depression, grief, anger, and guilt, manysuch parents today have inadequate accurate informationwith which to make considered evaluationsconcerning the nature of life with a disability or theconsequences for a family that includes a child witha disability.2. One of the principal motivations for denial oflifesaving treatment to children with disabilities isthe view that their continued existence will createtoo great a burden for their families. There isevidence that this concern has led to concurrence oracquiescence in the death or elimination of thesechildren.Specific Recommendations RegardingSupport for Families with Disabilities1. Congress should amend the Medicaid Act orother appropriate legislation to require that recipientsof Federal financial assistance for medicalservices provide specific information on support andresources to parents of newborn children withdisabilities. This should include information onadoption and, when necessary, information on othersupported family placement with resources necessaryto care for the child.2. Congress should amend the Medicaid Act orother appropriate legislation to lower the adjustedgross income ceiling that a family must spend ondisability-related medical expenses before the familymember with a disability becomes medicaid eligible.Specific Findings Regarding Section 504of the Rehabilitation Act of 19731. The hearings and research conducted by theCommission, and the findings based on them, especiallyGeneral Finding 5, supply a factual recordthat was absent in 1986 when the United StatesSupreme Court decided Bowen v. American HospitalAssociation, striking down regulations intended toassist enforcement of section 504 in the context ofdiscriminatory denial of treatment to children withdisabilities.2. A central problem with the Bowen pluralityopinion is that it suggests that section 504 puts noconstraints on a recipient of Federal financial assistanceresponsible for the discriminatory denial oftreatment to a person with a disability, if the denial isauthorized by a nonrecipient such as a parent who,as a surrogate decisionmaker for a child with adisability, normally has the legal authority to provideor withhold consent for the child's medicaltreatment.3. The Commission's findings suggest that parentswho authorize denial of treatment to theirchildren with disabilities are frequently substantiallyinfluenced in that decision by the views of theirchildrens' physicians and other health care personnelwho frequently display inadequate awareness of thepotential of these children.4. In cases in which decisions nominally madeby parents to deny treatment to children withdisabilities are in fact generated by health carepersonnel, health care providers who do not providelifesaving medical treatment to children with disabilitiesthat would be provided were it not for thedisabilities should be held to violate section 504despite parental acquiescence in the treatment denial.150

5. The logic of the Bowen plurality opinionapplies equally to authorizations for denial of treatmentby other nonrecipient surrogate decisionmakers,such as a guardian for a person with a disabilitywho is not competent to make health care decisions.6. The position taken by the plurality thus putsat risk not only children, but also older people withdisabilities. In the view of the Commission, arecipient of Federal financial assistance should notbe able to escape the requirements of section 504simply by persuading or encouraging a nonrecipientto authorize what, but for the nonrecipient's involvement,would be prohibited discrimination. Arecipient's substantial involvement in a nonrecipent'sdiscriminatory practices should be held to violatesection 504.7. The Commission's reading of the legislativehistory and plain meaning of section 504 of theRehabilitation Act of 1973 persuade it that theprovision does cover discriminatory denial of medicaltreatment to people with disabilities.8. The Commission concludes that passage ofthe Civil Rights Restoration Act establishes that ahospital's practice of reporting to State agenciesinstances in which parents withhold consent forprovision of lifesaving treatment to their children iscovered by section 504. The act defines section 504'scoverage to include "all of the operations of. . .anentire corporation, partnership, or other privateorganization. . .which is principally engaged in thebusiness of providing. . .health care. ..." If ahospital engages in reporting cases of medicalneglect to the State child protective services agency,that practice of reporting is among the operations ofa corporation that principally provides health care.Therefore, if any part of the hospital receivesmedicaid or medicare, discrimination in reportingbased on handicap (such as a practice of reportinginstances in which religiously motivated parentsrefuse consent for lifesaving treatment for nondisabledchildren to the authorities, but failing to reportinstances in which parents refuse consent for lifesavingtreatment for children with disabilities) violatessection 504.9. During the period in which enforcement ofsection 504 in this context was not yet enjoined, theperformance of the Office for Civil Rights of theDepartment of Health and Human Services inimplementing it was poor. Confronted with substantialevidence of significant and ongoing denial oflifesaving treatment to children with disabilities,evidence that suggested an ongoing threat to lives intwo States, the responsible Federal agency failed toact with the vigor and dispatch incumbent on it inlight of the circumstances, its legal responsibilities,and its publicly stated position.Specific Recommendations RegardingSection 504 of the Rehabilitation Act of19731. In light of the record developed by thisCommission, and in light of the advantages ofsection 504 for addressing denials of treatment, theCommission recommends that the Executive branchgive careful consideration to resuming investigationof allegations that children with disabilities arediscriminatorily denied medical treatment based onhandicap and initiate enforcement of section 504 incases in which the allegations are found to bejustified.2. Congress should amend the Child AbusePrevention and Treatment Act or other appropriatelegislation to make clear that withholding of medicallyindicated treatment, as defined in the ChildAbuse Amendments of 1984, constitutes denial ofthe benefits of health care services for purposes ofTitle VI and section 504.Specific Findings Regarding the ChildAbuse Amendments of 19841. The Child Abuse Amendments of 1984, theproduct of considerable debate and negotiation, setout a detailed and, for the most part, unambiguousbut nuanced standard of care which States thatreceive Federal funds for their child abuse andneglect programs must enforce among health carefacilities. If adequately enforced, the law wouldprovide strong protection for many children withdisabilities against denial of lifesaving treatment.2. Parents engaged in life and death decisions fortheir children are heavily dependent on the goodfaith of, and accurate information provided by, thoseadvising them. Because advisors may be ignorant orprejudiced about persons with disabilities, there is aneed for the establishment of a broadly basedadvisory process that includes members of the localprotection and advocacy system (P&As) and otherswith expertise in disability and rehabilitation. Establishmentof a structured care review process orcommittee will ensure that the decision made is incompliance with the standards set forth in the ChildAbuse Amendments, provided that any participant151

in the advisory process who is concerned with thewell-being of the child has standing to invoke theremedies that are otherwise available under Statelaw and the Child Abuse Amendments for dealingwith child neglect.3. Many State child protective services agenciesrely heavily upon members of the medical professionfor information and assistance concerning cases ofparental child abuse. This close working relationshiphas also led to heavy reliance by many State childprotective services agencies on the very medicalcare facilities and personnel whose actions, advice,or neglect are at issue in cases of suspected medicalcare discrimination. Taken together, such closeworking relationships among State child protectiveservices agencies and members of the medicalprofession has resulted in the substantial failure ofmany such agencies to enforce effectively the ChildAbuse Amendments of 1984.4. It is questionable whether most hospital-basedethics or infant care review committees are constructedin a manner that makes them likely toconduct searching scrutiny of proposed denials oftreatment. They represent an approach that reliesessentially upon the internal self-regulation of thehealth care community. Few committees includerepresentatives of disability rights groups; the majorityconvene only to deal with disagreements, ratherthan attempting to scrutinize most denial of treatmentdecisions to see whether they comply with thelaw. Instead of strictly applying the Child AbuseAmendment standards, many appear in practice touse more ambiguous criteria that include considerationof the projected "quality of life" of the childwith a disability. Taking note of the great propensityby many in the medical profession to disagree withthe treatment standards in the Child Abuse Amendmentsand of the available evidence concerning thefunctioning to date of hospital-based ethics or infantcare review committees, the Commission is persuadedthat they cannot be relied upon alone to ensurethat children with disabilities are accorded thelifesaving treatment that is their right by law.5. The Commission is dismayed at the poorperformance of the Office of Human DevelopmentServices of the Department of Health and HumanServices in fulfilling its responsibility to ensure thatState child protective services agencies receivingfunds under the Child Abuse Prevention and TreatmentAct comply with the Child Abuse Amendmentsof 1984 so as to protect children withdisabilities from illegal discrimination in the provisionof medical care. That performance requiressubstantial improvement. Although the Commissionis encouraged by steps the Office of Human DevelopmentServices now states it will take in responseto this report, it is too soon to determine whetherthey will result in the very significant increase inscrutiny of the performance of recipient Stateagencies that is essential if the Department iseffectively to fulfill its responsibilities under the law.Specific Recommendations Regarding theChild Abuse Amendments of 19841. Because funds available under the ChildAbuse Prevention and Treatment Act are apparentlynot sufficient to induce all jurisdictions to complywith the Child Abuse Amendments in order toqualify for them, compliance with the Child AbuseAmendments should be made an additional requirementfor State eligibility for participation in medicaid,so that the protections they afford will be madeavailable to all children with disabilities in theUnited States.2. Congress should amend the Child AbusePrevention and Treatment Act or other appropriatelegislation to establish a mechanism to improvereporting of cases of suspected withholding ofmedically indicated treatment by requiring that anyhospital that uses a committee to review a prospectiveinstance of withholding of treatment from aperson with a disability is required to notify theState protection and advocacy (P&A) agency ofmeetings held to discuss the case. The P&A agencyshould then be afforded the opportunity to examinethe medical records and discuss the situation withphysicians, relatives, and the committee. It shouldhave authority to obtain a court order for anindependent medical examination, and if it concludesthat medically indicated treatment would otherwisebe withheld illegally, it should have the standing toinstitute a court proceeding to require that it beprovided.3. Hospitals without a specialized advisory processfor dealing with the special needs of parents forinformation on disability and rehabilitation should berequired to establish a process in accordance withthe provisions of the Child Abuse Amendments andthe recommendation made above.4. Representatives of the local protection andadvocacy system should be included in the advisory152

process, both as advocates for the child's interestsand as a resource for the information of the parents.5. Congress should amend section 504 and theChild Abuse Amendments to require the establishmentof such a care review process or committeewithin treatment facilities across the country.6. Should any participant in a care reviewadvisory process not be satisfied that the outcome ofthe process is in compliance with the standards setforth in the Child Abuse Amendments, that personshould have standing to invoke such remedies,judicial or otherwise, that are available under Statelaw for dealing with child neglect.7. When a State child protective services agency(CPS) receives a report of suspected withholding ofmedically indicated treatment under the ChildAbuse Amendments, it should be required promptlyto notify the State P&A agency and to provide itaccess to the records obtained and informationdeveloped by the CPS agency. As a representativeof the interests of the child, the P&A agency shouldhave independent authority, similar to that now heldby the CPS agency, to obtain medical records, toobtain a court order for an independent medicalexamination, to appear on behalf of the child in anycourt proceeding to authorize medical treatmentinitiated by the CPS agency. The P&A agencyshould also have independent standing to initiate acourt proceeding to authorize medical treatment forthe child.8. To create a deterrent to physicians who notonly might fail to report a case of withholding to theState CPS agency but also might not submit it to ahospital committee, the P&A agency should begiven authority to conduct retrospective reviews ofthe medical records of those with disabilities whodie in the State. If instances of illegal withholding ofmedical treatment are detected, the P&A agencyshould be able to seek appropriate action by licensingboards or Federal funding sources and, inextreme cases, to institute suits for injunctive ormonetary relief or refer cases for investigation byprosecuting attorneys.9. Congress should afford P&A agencies appropriatefinancial and backup assistance to enable themto fulfill these roles capably.10. The Office of Human Development Servicesin the Department of Health and Human Servicesshould take corrective measures to ensure morerigorous scrutiny of State plans submitted for fundingunder the Child Abuse Prevention and TreatmentAct to remedy the current widespread failureof State child protective services agencies to complywith the requirements of the Child Abuse Amendmentsof 1984.153

A Dissenting View on the Report MedicalDiscrimination Against Children withDisabilitiesBy William B. Allen, ChairmanWhen the final draft of this report was presented(and approved) by the Commission in January of thisyear, it did not contain any information whatever asto the rate of incidence of medical neglect ofhandicapped newborns. Nor did it include even rawnumbers of the total births and deaths of severelyafflicted infants in the United States. When Iinquired, therefore, as to the dimensions of theproblem, no one who had assumed responsibility forthe preparation of the report could respond to me. Ifound this extraordinary, to say the least, and utterlyunacceptable, to be candid. For that reason, amongothers, I voted not to approve the report. 11That is to say, I abstained. I did not vote against the report, butneither did I vote to approve. Indeed, I spoke expressly incriticism of it. Mr. Destro finds this expression troublesome,despite the fact that the sentence, "I voted not to approve. . ." isexactly the grammatical equivalent of the sentence, "I did notvote to approve. . ." The point, of course, is that in the face oftremendous pressure, I do not palliate the significance of my voteby hiding behind technicalities. Rather, I candidly own that Ivoted not to approve, and would do so again on the recordestablished here.At his footnote 9 Mr. Destro worries not only about the grammarin my dissent but about my actual conduct in voting. To satisfyhis curiosity in this regard, I now append to this dissent the fulltext I issued at the time I voted to abstain, entering an elisioncovering the material reproduced in the dissent (appendix 1).Suffice it to say that Mr. Destro's litmus, the Commission's"approach to the issue of medical care discrimination," falls wideof the mark of my observations. The question is not, or should notbe a question of approach. It should be a question of actualcontribution toward safeguarding vulnerable lives and rights. Iindicated at the Commission debate, and now reaffirm, my beliefthat the Commission's "approach," far from protecting handicappednewborns, can only eventuate in making it more difficultto protect them.The shortest path to the defense of handicapped newborns wouldbe, not to carve out ever new exceptions to legal standardscrafted over centuries, but rather to assure immediately the fullrange of protections to which persons are otherwise entitled. Thatwould mean not new laws but confirmed enforcement of lawsSince the Commission's final vote on the report,an appendix A has been added, reducing statisticsfrom the Center for Disease Control from 1983 andpartially responding to my inquiry. Nevertheless,those statistics do not accomplish all that I sought.In the first place, they provide no indication of whathas occurred within the medical profession since theperiod of great concern about "Baby Doe" cases andsince the enactment of the Child Abuse Amendmentsof 1984. 2 That is, they say nothing about thedimensions of the problem during the very yearswhen this report was being prepared at a cost of halfa million dollars! Secondly, no comparative analysisagainst homicide and entailing every ordinary gradation anddistinction admitted in such cases. That is the import of myrepeated—but still ignored—insistence, that handicapped newbornshave the same rights all other persons enjoy—none moreand none less.2At page 208 Mr. Destro falsely characterizes my concern toknow the facts as an attempt to get hard numbers on whocommitted what crimes. What I asked for, and I repeat, wassimply a number indicating the incidence of handicapped newbornsand a number of the deaths within that class. Mr. Destrofinds it "incomprehensible' that anyone should seek such information.I am comforted, however, that staff was able to provide justthat (though without comment) in the report's appendix A, and Iam still more confirmed in my credulity by the fact that theInspector General's 1987 reports from the Department of Healthand Human Services make a fine effort in that direction.What I find "incomprehensible" is that our staff and thesubcommittee read and commented on the HHS reports, butnowhere attempted to come to terms with these numbers. Thatthe reader may not suffer from the omission, I add those briefreports as appendices to this statement (2 and 3). Let the readersjudge what the so-called "hard" evidence suggests, and I will besurprised if they come to any conclusion other than that the effortexpended to "justify" a defective report could well haveproduced a better one if well directed—directed, that is, towardsthe report's own announced purpose: "to determine the natureand extent of the practice of withholding medical treatment ornourishment from handicapped infants." (Report, 1.1)154

is provided of the various figures, and particularlythose touching upon the three conditions mostfrequently adduced in this report. According to the1983, and thus prereform figures, there were 3,093live births with Down syndrome, of whom 84 diedof the condition. There were 1,747 spina bifidabirths, of whom 95 succumbed. And there were3,238 cases of all of the listed atresias, of whom 261passed. The question remains: Are these numbersextraordinary? Of these deaths, what proportionmight have been unnecessary?In short, I remain convinced that this reportreflects all too prominently a certain kind of researchincontinence. The failure to make as strong ademonstration as possible reflects only one side ofthat methodological flaw. On the other side has beenthe steadfast refusal to vent the report among criticsin advance. When (as an ex officio member) Iproposed last fall that the draft be sent out tointerested parties for confidential comment, thedrafting subcommittee refused. That meant that wehad no means to measure the sufficiency of thereport's representation of the "other side." Theinterest of producing the strongest possible counterargumentis to enhance the credibility of the finaldocument. As a matter of practice, Commissionreports should always be expected to contain themost sympathetic representation possible of thestrongest counterarguments to the positions taken.Even when such an approach will not guarantee thatwe persuade others, it will guarantee that we willearn their respect. 3Apart from these methodological considerations, Ihave previously written of substantive concerns thattroubled me. The editing of the "final draft" hasonly partially relieved those substantive concerns. Iremain persuaded, however, that the interests ofhandicapped newborns have been sacrificed to a3Mr. Destro misreads my statement and compounds his error bythen declaring his understanding that I "subsume the questionentirely into the realm of medical ethics." (Destro, p. 208, n.3) Mystatement so clearly rejects this contention, in advance as it were,that I will not belabor the point. I will pause only long enough tosay that, by giving space to voices that were not heard inpreparing this report, I do not endorse their views of course. Iadd here, as an appendix, the letter I received from the AmericanAcademy of Pediatrics, stating their views (appendix 4). Further,since I have specifically disagreed with Dr. Engelhardt's interpretationof the Hippocratic Oath, there really can be no honestoccasion for anyone to misconstrue this. Perhaps now is also agood place to remind the unwary that the argument ad Hitlerumgenerally betrays a want of defensible principle.4At page 211 Mr. Destro appropriates my observation, that thisreport does not substantiate its claims of widespread abuse, to apolitical mission. I do not require in this space torepeat those arguments. 4 I believe at this momentthat the most urgent contribution I require to makeis to make clear the argument to which those whowould defend handicapped newborns must respond.To that end, these remarks will be followed immediatelyby the commentary of Dr. Tristram Engelhardt,perhaps the foremost medical ethicist in theUnited States. Dr. Engelhardt prepared his evaluationof the report at my request and on extremelyshort notice, since I was not free to send it to himbefore it became public property.Relative to Dr. Engelhardt's testimony about theincidence of undertreatment of handicapped newborns,it is regrettable that we are unable to make ajudgment based on this report. With respect to hismore substantive arguments, some I find reassuring,while disagreeing with others. In particular, I am notso sanguine as he about the power of the HippocraticOath to guide physicians through these trials.Because I discussed that central point in my previouslypublished comments, I will produce thatdiscussion here, to conclude my remarks, and thenpermit Dr. Engelhardt immediately to respond.Life and Health the Ends of MedicineThe reason Hippocrates came to my mind duringour preliminary discussion of discrimination againsthandicapped newborns was that much of what Iread, and much of what was presented before us,seemed to present the question as one about thresholdsfor humanity, as if protoplasm quickened intohumanity on some measurable scale to which our artor science could point us. Hippocrates had takenrather a different view, one which founded knowledgeand applicability of the arts on "knowledge ofthe nature of man in general." [Regimen, I, ii] Thatis, he made knowledge of the arts (of the end of thepurported denial that medical professionals discuss euthanasia andother sanguinary approaches to human life. This sleight-of-hand istotally unjustifiable. Happily, however, it rather serves to blastthan confirm his case. For, on the premise that people are surelydoing what they say they would be willing to do, Mr. Destroconcludes widespread abuse for which he adduces not one shredof direct evidence. Since most of the discussions he relies upon areacademic in character, it would not be difficult to set right thissophomoric use of those discussions. Let it suffice, though , tonote that it is akin to believing that cannibalism has been morallyjustified simply because philosophy and law professors use thelifeboat example! Even if every such classroom and journal in thecountry used the example in speech (and that is close to accurate!),we would still need evidence beyond the incident at Donner Passto declare the practice pervasive.155

arts) to depend upon knowledge of humanity, whiletoday we seem to do the reverse—no matter whatside of the "Baby Doe" debate we fall on.This is curious, indeed. Those who defend forhandicapped newborns a right to treatment, no lessthan they who deny it, seem to believe that medicalart should not be informed by any notion of moral orhuman ends. For the former, this leads to a powerfulemphasis on legal and administrative procedures toprevent the medical arts deciding questions notappropriate to them; while for the latter, it leads toemphasizing medicine as a neutral art that may serveany purpose medical consumers desire for themselves.The idea that medicine is a neutral art wascertainly foreign to Hippocrates, for whom the artwas informed by the idea of human health, and itwas no less foreign to the generations of physicianswho subscribed to Hippocratic standards.What we must note today is that physicians nolonger subscribe to Hippocratic standards, andcertainly not to the Hippocratic Oath. That oath,among other things, contained the following pledge:I will neither give a deadly drug to anybody if asked for it,nor will I make a suggestion to this effect. Similarly, I will5At pp. 211-12 Mr. Destro profoundly, and sadly, misconstruesthe slight mention of abortion made in my original statement.(Can anyone fail to see the relevance of the Oedipus tale?)Following the improvident lead of Ms. Berry, Mr. Destrostruggles vainly to separate the questions, never noticing that heattempts to cleave the physician's soul. For the burden of myobservation was nothing more than to remark the reason forHippocrates' coupling of the pledges not to render abortions andnot to assist suicides. They are not two choices, but one; and theyare not dilemmas at all, from Hippocrates' perspective. It is, infact, the assumption that moral choice implies dilemmas that ismost profoundly the cause of our unwonted tolerance of moralweakness. Dilemmas exist where grounds of judgment areunclear. If, in our reasonings, we cannot state clear grounds ofjudgment, as I have tried to do, we will make matters worse, asthis report and Mr. Destro's comments do.In that light, we might do worse than to recall Thomas Jefferson'sadmonition. Describing the moral sense that makes man man,even when some persons seem to lack that very sense, Jeffersonturned to example: ". . .there is no rule without exceptions; but isfalse reasoning which converts exceptions into the general rule.Some men are born without the organs of sight, or of hearing, orwithout hands. Yet it would be wrong to say that man is bornwithout these faculties, and sight, hearing, and hands may withtruth enter into the general definition of man." (Letter to ThomasLaw, June 13, 1814, Writings, p. 1337, Library of America)6This report is not about medical neglect, nor its corollary incivil law, medical malpractice. The law offers guarantees to allcitizens alike in this regard, whether handicapped or not. "Mere"medical neglect is not a civil rights problem, whereas systematicand discriminatory medical neglect would be. It may seemstrange to say, but it is nevertheless true that civil rights guaranteethe fair distribution not only of advantages, but also of burdens.156not give to a woman an abortive remedy. 5 In purity andholiness I will guard my life and my art. [Kass translation]If every American physician adhered to this pledge,there would be no Baby Doe problem. In fact,however, American medicine has replaced the Hippocraticoath with its own "Principles of MedicalEthics," which dropped altogether the opposition tosuicide and abortion. This is the history that, morethan anything else, creates our contemporary difficulties—thedeliberate, conscious adoption of suicideand abortion as medical remedies.In the United States, however, we depend notmerely on the self-restraint of physicians. Theorganic law of our society proffers a guarantee ofthe right to life to persons, a guarantee that parallelsthe Hippocratic pledge. When, therefore, our physiciansceased to believe in the Hippocratic commitment,they nevertheless were subject to the constitutionalcommitment. What we are trying to do now is tomeasure whether and how the protections of lawcan make up for the loss of steady moral commitment.6In this respect our report does us a disservice. Bypresenting the plight of the handicapped newborn asthe logical development of unbroken historicalHence, so long as medical neglect may fairly affect any citizen,without regard to handicap, race, gender, or other prohibitedgrounds, it could not pose a civil rights problem. Thus the task ofthis report has been to prove not only that the handicappednewborn is burdened, but unfairly so. That the report fails toestablish even the threshold phenomenon in the post-1984environment is a signal condemnation of the effort devoted to itand the taxpayer funds expended on it.The report opened with a sensible awareness of this difficulty,affirming that the "equal protection clause. . .creates a nondiscriminationstandard" while the "constitutional procedural (sic) dueprocess rights also considered. . .presuppose an existing substantivebenefit which they ensure may not be denied by processesthat fail to meet standards of fundamental fairness." (Report, 1.3n)But it lost its way in the attempted application, trying todistinguish the medical decision from the fairness decision. "Ifkidney dialysis, for example, is withheld from someone because itis medically contraindicated, such a judgment is outside the scopeof the Commission's purview." Good, as far as it goes!, butcompare that confident statement with the following: "A judgmentnot to perform certain surgery because is person is black isnot a bona fide medical judgment." The fact is, however, thatone's being black routinely enters into medical judgments, andparticularly in the case of kidney dialysis! We know that medicinedecides against kidney dialysis in black people, based on areported judgment of lower tolerance likelihood. The case of thehandicapped is not less intricately wound up with medicaljudgments. These are debatable judgments, but not isolablejudgments. The civil rights response to the kidney dialysis isshaping up to be a program of organ donor quotas—that is, adecision that the medical decision is simply wrong! (Report, 1.4and n.5)

antecedents—the legacy of bigotry in America!—instead of as a corruption of previous accomplishments,it depreciates not only the value of theHippocratic standard but also the organic principlesof our nation.The history is also false in terms, to the extent thatit denies generally humane social instincts towardthe "feeble-minded" in the era prior to the emergenceof 20th century nihilism and eugenics. Indeed,the 18th and 19th century prison reform movement(which gave us penitentiaries, houses of repentance)aimed as much to distinguish the criminal from the"feeble-minded" and the insane as to provide rehabilitation.The fact that these primitive reforms fellshort of modern necessities—and may by our lightseven seem blighted—can by no means diminish thesignificance of that liberal impulse which gave birthto them.The report rightly condemns the eugenicist movementand Margaret Sanger. I do not need conversionon that score. It is nevertheless unsound to seek toderive the eugenicist movement from mere historicalconditions or the cultural milieu. The significance ofthis observation becomes manifest when we reflectthat at the heart of the report, we find an assumptionof deriving rights from needs (cf., ch. 8, n. 63).Rights are neither defined nor illustrated by needs,not for the handicapped nor any other category ofAmericans. The reason black people ought to enjoyequal rights of citizenship is not that most of themare poor. It is rather that they are human beings towhom the rights and arts of self-government pertainno less than to any other humans.We have abiding confidence that a regime ofequal rights is the surest relief for unmerited disadvantage.We reject the contention, however, that torelieve disadvantages is to guarantee equality ofrights. Insofar as this report takes the oppositeposition on this crucial question, we should notapprove it. The correct application of this principleto the handicapped is to assure that they suffer nofurther burdens (above all civil burdens) than arealready intrinsic to their circumstances. (I mightpoint out that there is also a moral corollary,namely, that occasion be left for other folk to beconsiderate.)157

Attachments to Statement of William B. Allen, ChairmanComments on the Recommendations Regarding Section504 of the Rehabilitation Act of 1973 and the ChildAbuse Amendments of 1984By H. Tristram Engelhardt, Jr., Ph.D., M.D.*At times the most well-meaning and intelligent ofmen and women, from the best of motives, come tosee an issue in a distorted light. Frequently this is theresult of circumstances that have skewed the processof data acquisition and interpretation. Unfortunately,this appears to be the case with regard to the reportand recommendations concerning section 504 of theRehabilitation Act of 1973 and the Child AbuseAmendments of 1984. The report appears to havebeen written under assumptions that are false andmisguiding. The report does not appreciate that amajor shift in attitude has taken place, which makesfurther Infant Doe cases such as that in Bloomington,Indiana, highly unlikely, but which has madechild abuse through overtreatment more likely.Because of a failure to appreciate the range ofharms to which seriously ill newborns may beexposed (especially the risk of useless and painfulovertreatment), the report erroneously suggests thatthe task is one of encouraging further overtreatmentrather than making some judicious changes in theChild Abuse Amendments of 1984, so that they willnot constitute a threat to the best interests of asignificant class of very seriously ill newborns.Nor does the report appreciate the kind ofcooperation among parents, physicians, and childprotective services agencies that will be necessary ifour society is to adapt to an environment of rapidlychanging high-technology medicine. In what followsI respectfully submit some substantive criticismsof the draft report and recommendations withrespect to section 504 of the Rehabilitation Act of1973 and the Child Abuse Amendments of 1984. Thecentral thrust of my comments is that there is no* Professor of Medicine and Community Medicine, Center forEthics, Medicine, and Public Issues, Baylor College of Medicine;evidence of significant undertreating of severely illhandicapped neonates since 1985. If anything, thereis evidence of overtreatment. Moreover, were thereevidence of the failure to provide indicated treatment,the proposed approach would not be thepreferred solution to the problem. If the recommendationsof the report are aggressively followed, theinterests of seriously ill newborns will be imperiled.The Bias Toward Overtreatment: Overtreatment Isa Form of AbuseTo begin with, I find matters as described in thereport not to accord with my experience as aphysician and a bioethicist, or with my conversationswith neonatologists and with parents of childrenwith severe disabilities. In particular, the biassince 1983 or at least 1985 has been to overtreat, notundertreat, severely ill handicapped neonates. In myexperience, families often wish to discontinue treatment,despite the recommendations of the physiciansto the contrary. Moreover, physicians, especiallyneonatologists, as well as a preponderance of laypersons, often have an exaggerated view of what canbe contributed by intensive medical interventions.Physicians whose careers are dedicated to thesaving of human life, and who often must spendmany grueling hours in attempting to save a child,tend to regard parents who wish to stop treatment asquitters, as individuals disloyal to the therapeuticenterprise. One sees this phenomenon in other areasof medicine such as cancer treatment, where patientsare frequently aggressively overtreated, subjected totherapies that involve significant pain and suffering,but little if any real promise of extension of life. Thedifficulties in this regard have in particular beenProfessor of Philosophy, Rice University, Adjunct ResearchFellow, Institute of Religion, Houston, Texas.158

illustrated by the resistance to hospice care, wherefutile treatment is avoided in order to give moreappropriate comfort care. The reason that it is oftenvery difficult for health care givers to move fromfutile curative care to humane supportive care is inpart due to their becoming so involved in a desperatehope to cure that it is difficult to recognize thelimitations of medicine.The Distortion in Perspective Due to theTherapeutic and Technological ImperativesTechnology has a force and momentum of itsown, often described as the technological imperative.People tend to apply a technology in medicineif it is available, even if there is no evidence that theapplication will benefit those who are treated. Thetechnological imperative involves an augmentationof what can be termed the therapeutic imperative:the view that it is always best to treat aggressively.It is worth recalling that physicians aggressivelybled patients for over 2,000 years, even though thistreatment conveyed no benefit, expect perhaps forthose suffering from acute congestive failure. It isvery difficult for individuals to do nothing for apatient, even when doing something harms thepatient more than it helps. It is because of thisseduction born of the inclination to intervene thatthe Hippocratic maxim, "First do no harm \primumnon nocere\" was articulated. This maxim wasextraordinarily important, then as now, becausephysicians (and now hospitals) are not only inclinedto treat aggressively because of vain hopes born ofthe therapeutic, now the technological imperative,but because they take money from and derive esteemfrom their roles as heroic therapists. Since we oftenunrealistically expect so much from medical treatment,it is difficult to appreciate how easily we asindividuals and societies are seduced by the technologicalimperative. However, it is important torecognize that overtreatment, the use of treatmentthat causes more harm than benefit, is a form of childabuse.The Misguided Tendency to Regard Criticism ofthe Child Abuse Amendments of 1984 as HostilityTowards the HandicappedIn reviewing the draft recommendations regardingthe Child Abuse Amendments of 1984, alongwith the attached appendices and supporting information,I am struck by the underrepresentation ofthe critics of the Baby Doe regulations and thesubsequent Child Abuse Amendments of 1984 andhow their arguments are treated. The consideredjudgments of the President's Commission are byimplication styled rhetoric (see chapter 6). Beyondthat, there does not appear to be any testimony froman official representative of the American MedicalAssociation or the American Academy of Pediatrics;at least their views of matters since 1985 are notgiven in the report. Moreover, there is a remarkableunderacknowledgement of the criticisms in theliterature about the Baby Doe regulations and thesubsequent regulations published pursuant to theChild Abuse Amendments of 1984. Finally, substantivecriticisms have been construed as hostile opposition.It may seem somewhat out of place to suggest thatcriticisms of the Child Abuse Amendments of 1984should be entertained at this juncture. However, it isimportant to recognize how ill-stated some of thoserequirements are. According to the current requirements,one is explicitly mandated, under certaincircumstances, to provide treatment that rationaland prudent decisionmakers would agree is inhumane,that is, conveys more harm than benefit. Thecurrent law would allow the nonprovision of treatmentonly if "(A) the infant is chronically andirreversibly comatose; (B) the provision of suchtreatment would (i) merely prolong dying, (ii) not beeffective in ameliorating or correcting all of theinfant's life-threatening conditions, or (iii) otherwisebe futile in terms of the survival of the infant; or (C)the provision of such treatment would be virtuallyfutile in terms of the survival of the infant and thetreatment itself under such circumstances would beinhumane." 1 Rubric (C) would require inhumanetreatment. That is, in cases where the treatment isnot also virtually futile, it would require treatmentthat from the perspective of a reasonable andprudent observer would cause more harm thanbenefit to the person being treated.Such an approach to treatment has generally beenheld to be unethical and immoral. The AmericanAcademy of Pediatrics, for example, has requiredthe provision of treatment only when it is clearlybeneficial. "When medical care is clearly beneficial,it should always be provided. When appropriatemedical care is not available, arrangements shouldbe made to transfer the infant to an appropriatePub. L. No. 98-457, 121, 98 Stat. 1749 (1984).159

medical facility. Considerations such as anticipatedor actual limited potential of an individual andpresent or future lack of available communityresources are irrelevant and must not determine thedecisions concerning medical care. The individual'smedical condition should be sole focus of thedecision. These are very strict standards." 2 Moreover,the American Medical Association quite properlyhas emphasized the legitimate role of parents indeciding on the scope of treatment when thatdecision reflects a reasonable judgment regardingthe best interests of the child.In desperate situations involving newborns, theadvice and judgment of the physician should bereadily available, but the decision whether to exertmaximal efforts to sustain life should be the choice ofthe parents. The parents should be told the options,expected benefits, risks, and limits of any proposedcare; how the potential for human relationships isaffected by the infant's condition; and relevantinformation and answers to their questions. Thepresumption is that the love which parents usuallyhave for their children will be dominant in thedecisions which they make in determining what is inthe best interest of their children. It is to be expectedthe parents will act unselfishly, particularly wherelife itself is at stake. Unless there is convincingevidence to the contrary, parental authority shouldbe respected. 3Finally, it is important to note that a majorelement of Western moral reflections regarding theobligation to provide treatment has drawn a distinctionbetween ordinary and extraordinary care,which hs not been equivalent to usual versus unusualcare, but rather which has been equivalent to thattreatment constituting an undue or disproportionateburden, versus that involving only a proportionateburden given likely outcomes, and that is thereforeobligatory. There are many articulations of thismoral viewpoint, but a recent one of classical forcewas provided by Pope Pius XII in 1957: "normallyone is held to use only ordinary means—accordingto the circumstances of persons, places, times, andculture—that is to say, means that do not involveany grave burden [aucune charge extraordinaire] for2American Academy of Pediatrics, "Principles of Treatment ofDisabled Infants," Pediatrics 73 (Apr. 4, 1984), 559.3Current Opinions of the Judicial Council of the American MedicalAssociation—1984 (Chicago: American Medical Association,1984), p. 11.4Pope Pius XII, Allocution "Le Dr. Bruno Haid," Nov. 24,1957, Acta Apostolicae Sedis 49 (1957), 1031. English translationoneself or another. A more strict obligation wouldbe too burdensome \trop lourde] for most men andwould render the attainment of the higher, moreimportant good too difficult." 4It is crucial that one recognize that such distinctionsbetween ordinary and extraordinary treatmentwere never meant to focus simply on economicconsiderations. In contemporary medicine, physiciansare usually reluctant to treat severely illneonates when the therapeutic intervention is likelyto effect more harm than benefit. The focus is on thebest interests of the patient. There is primarily anintention to avoid painful interventions that havelittle prospect of saving life. The testimony in adistorting fashion suggests that the decision not totreat depends primarily on a prejudicial and biasedappreciation of the future quality of life of theneonate. Instead, the inclination not to treat isusually based on the judgment that the treatmentwill itself cause more suffering than benefit.Because of the failure to appreciate the contemporaryguiding ethos of neonatal medicine (i.e., thatthere is an inclination to overtreat and the usualinterest in not treating is based on a concern not toharm the neonate), there is also a failure in the reportand its recommendations to take seriously negativeappraisals of the Child Abuse Amendments of 1984.For example, in chapter 9, the article by Kopelman,Irons, and Kopelman is described as disclosing"widespread hostility to the standards of treatmentadopted by the Child Abuse Amendments of 1984."The data are more accurately described as givingsubstantive empirical basis for criticizing thoseamendments. To use the word "hostility" is tosuggest an emotional disposition to disregard theamendment. However, the Kopelman et al. articlegives good grounds for agreeing with the Office ofthe Inspector General, which in 1985 concluded thatthe current regulations are sufficient and that "moststates feel that existing child abuse and neglectprocedures would have been adequate to respond tobaby doe reports." 5 Indeed, in light of thisstatement it is important to put the Kopelman et al.report, published in the New England Journal ofMedicine, in proper perspective. On the basis of afrom Pius XII, "Address to an International Congress of Anesthesiologists,"Nov. 24, 1957, The Pope Speaks 4 (Spring 1958),395-96.5Office of Inspector General, Office of Analysis and Inspections.Survey of state Baby Doe programs, September 1987. (Pub.no. OA1-03-87-0018.)160

questionnaire sent to the 1,007 members of thePerinatal Pediatric Section of the American Academyof Pediatrics, of which 494 members (49 percent)responded, 56 percent agreed that "infants with anextremely poor prognosis for survival were beingovertreated." 6 This is not a statement supporting aquality of life judgment. But it is an opinion made byexpert physicians in the field that more harm thangood is being done in the treatment of a certain classof severely ill neonates.There is indeed an inclination in the report toconstrue medical decisions as merely technical decisionsregarding the likelihood of success or failure ofa particular treatment. In medicine traditionally, andtoday in areas outside of the treatment of handicappedneonates, this has not been the understandingof appropriate medical decisionmaking. Appropriatemedical decisionmaking has traditionally and still isgenerally held to include consideration of whethertreatment will provide more benefit than harm.Indeed, physicians are morally obliged to refuse toprovide treatment that produces substantially moreharm than benefit. Insofar as the recommendationsof the Civil Rights Commission undermine thisethos, one can only conclude that the recommendationsas currently written will make matters farworse, not better, for the citizens, including thehandicapped citizens, of the United States.Is There Sufficient Protection Already?Whatever may have been the state of affairs priorto the Baby Doe regulations and the Child AbuseAmendments of 1984, those changes in law andpublic policy combined with the ever-increasinglevel of exposure to malpractice litigation stronglybias physicians in favor of treating a severely illneonate, even in cases where physicians believe sucha treatment will be inhumane, will in fact involvemore harm than benefit to the neonate who istreated, in addition, the issue of whistle blowing isradically different in areas of child abuse than inother areas of American society. Anonymous informationcan be provided to State child protectiveservices agencies for investigation, so that thewhistle blower is not placed at any risk. There is noanalogy between the risk to whistle blowers currentlymaking reports regarding child abuse and otherareas of whistle blowing, where there is little6Kopelman, Irons & Kopelman, Neonatologists Judge the"Baby Doe" Regulations, 318 New Eng. J. Med.683 (1988).possibility of anonymity nor an agency obligatedand equipped to investigate anonymous reports.The interaction between parents and physiciansmust be appreciated within this perspective. Thereare already substantive requirements to providesufficient information to parents so that they canmake an informed choice with regard to the treatmentof their severely ill neonates. These requirementsare already supported by substantial malpracticeawards. In addition, the threat of being chargedwith child abuse has keenly focused the attention ofphysicians on the rights of severely ill children. Tofind that improper persuasion of parents by physiciansoccurs in this context Is to judge that it is badsocial policy for parents to rely on the best availableexpert medical care when needing to make decisionsabout the treatment of their children, bearing inmind the presence of subsequent sanctions againstphysicians, should they acquiesce in child abuse orprovide improper treatment.It may very well be the case that, in many areas,the best of physicians are not fully informed regardinglikely prognoses. This will be a difficulty thatmedicine will face generally as technological progressaccelerates, requiring accelerated and intensifiedcontinuing medical education. But this general problemis unlikely to be solved simply by heighteninggovernment-bureaucratic enforced interventions. Amuch more plausible alternative approach to thisproblem, which is not restricted to any one area ofmedicine, is to find ways of cooperating with andassisting specialty societies in the continuing educationof their members. In short, IF physicians arestill undertreating patients, it is unlikely that themeasures suggested by the Civil Rights Commissionwill be a salutary remedy for this difficulty. Only byworking with such organizations, trusting them andencouraging their trust, will the nuanced self-regulationbe ensured, which is needed in such rapidlychanging technological areas.But this contention about undertreatment involvesa very large IF. As the Kopelman and other articlessuggest, the current climate supports overtreatment,that is, causing more harm to patients than good. 7For example, Dr. Stuart F. Spicker (professor in theDepartment of Community Medicine and HealthCare, School of Medicine, University of ConnecticutHealth Center), who, under a grant from the7John C. Moskop and Rita L. Saldanha, "The Baby Doe Rule:Still a Threat," Hastings Center Report 16 (April 1986), 8-14.161

Fund for the Improvement of Postsecondary Education,Department of Education, is engaged in aneducational project to improve the functioning ofhospital ethics committees throughout the UnitedStates, states that from his experience, "there is noindication from numerous cases discussed in theproject by members of U.S. hospital ethics committeesthat there is any significant abuse of the rights ofchildren as alleged by statements recorded in theU.S. Civil Rights Commission Report. There is nosubstantive abuse or endangerment of children thatwould justify the proposed additional interventionsin established medical practice." 8Handicapped Neonates Should Not Be ObligatorySubjects of Medical ExperimentationIf the therapeutic and technological imperativesare not contained, it will appear to be obligatory forphysicians to apply experimental treatment to children,even if the treatment is considered inhumane,unless the results of that treatment are known to bevirtually futile. The result is that at the edge ofdeveloping new medical technologies, physicianswill find themselves obliged to subject handicappednewborns to treatment which would ordinarily notbe permitted because of its adverse harm-benefitratio, but which an overly zealous interpretation ofthe Child Abuse Amendments of 1984 would require.That is, the rapidly developing frontiers ofmedical technology will continually create opportunitiesto subject handicapped newborns to heroicmedical and surgical interventions, where it will notbe able to be shown that those interventions arevirtually futile, but where a reasonable medicaljudgment will be that harms will outweigh benefits.The Family as the Key to the Decentralization ofthe Authority of Experts in a TechnologicalSocietyUnquestionably, parents are highly influenced bythe physicians they consult about treatment of theirchildren. Nor will there ever be perfect physiciansor perfect transfer of information to parents incircumstances where life and death decisions mustbe made. On the other hand, bureaucratically enshrinedregulations and guidelines are unlikely to fareas well. Indeed, they are much less able to providethe nuanced, situation-dependent guidance necessaryin areas of rapid technological advance. There is, as8Personal communication, Jan. 8, 1989.9Hans-Martin Sass, "Moral Dilemmas in Perinatal Medicineand the Quest for Large Scale Embryo Research: A Discussion of162a result, a strong argument in favor of relying on thegood will of families and physicians to make reasonablejudgments, especially given the substantivesocietal restraints already in place.One might observe that one of the major lessonsto learn from Nazi Germany is that the governmentshould not be given primary authority regardinglife-and-death choices. Hitler's Germany, it shouldbe recalled, both forbade abortions and enjoinedeuthanasia. The lesson of history suggests that thecosts in the long run from relying on families aremuch less than relying on governments. This mayexplain why in the Federal Republic of Germany,where the lessons from the history of Nazi atrocitiesconsciously guide contemporary public policy inorder to avoid a repetition of those atrocities, therehas been explicit effort to avoid rules such as thoseincorporated in the Baby Doe regulations. At aconference held in Germany, June 27-29, 1986, theGerman Society for Medical Law recommendedthat the physician be excused from providing treatmentfor handicapped newborns whenever:(1) life cannot be maintained for any length oftime, but instead one will only be postponing acertain death, e.g., in the case of severe dysrhaphia-syndromeor inoperable heart defects;(2) in spite of treatment it is determined that thenewborn will never have the possibility of communicatingwith his environment, e.g., severemicrocephaly, very severe brain damage;(3) the newborn's vital functions can be maintainedfor any length of time only by means ofintensive medical intervention, e.g., breathingdifficulties without possibility of restoring health,loss of kidney function without possibility ofrestoring health. 9These decisions should be made as far as possiblewith the family. The above recommendations weremade not in order to avoid the continued life ofhandicapped infants, but rather to avoid therapeuticinterventions that would cause more harm thanbenefit.The decentralization of important decisions hasbeen the genius of Anglo-American countries. Onebelittles the opinion of the plurality of the SupremeCourt in Bowen v. American Hospital Association ifone overlooks the implied criticism by the Court ofgovernment intrusions in family decisionmaking.Recent Guidelines in the Federal Republic of Germany," Journalof Medicine and Philosophy 12 (1987), 287.

"Section 504 does not authorize the Secretary togive unsolicited advice either to parents, to hospitals,or to state officials who are faced with difficulttreatment decisions concerning handicapped children."10 Here I think it is reasonable to see theCourt in part reflecting the judgment that "Thehistory and culture of Western civilization reflect astrong tradition of parental concern for the nurtureand upbringing of their children. This primary roleof the parents in the upbringing of their children isnow established beyond debate as an enduringAmerican tradition." 11 To undermine this centralrole of parental choice is to depart substantially fromthe tradition of our law.In this respect, the report seriously misstates thesituation when it alleges in chapter 1 that only whenchildren have severe disabilities is the claim ofparental autonomy given serious consideration. Infact, parents are generally held to be free to chooseany medical treatment endorsed by a recognizedgroup of medical practitioners. This recognizedright at law plays a substantial role when parentschoose among different chemotherapeutic approachesfor their children with cancer, oftenselecting a treatment that offers a reduced chance ofsurvival, but involves less suffering and pain. Suchchoices are made regularly throughout health careand are considered proper, and are proper. Thus,one can see why the plurality in Bowen v. AmericanHospital Association emphasized that "it would almostcertainly be a tort as a matter of state law tooperate on an infant without parental consent." 12The moral basis of this legal consideration wouldlead one to hope that, at the very least, therecommendation regarding section 504 of the RehabilitationAct of 1973 would include a recommendationthat no treatment be provided, other than on anemergency basis, over the protests of parents,without a court order.Reliance as far as is feasible on parents choosingamong acceptable medical options, which take intoaccount the pain and suffering of severely illneonates, will not in all cases provide protection tothose neonates. But over the long run, such a policywill constitute a step away from a paternalistic elitistposture on the part of government and towardsencouraging responsible choices by parents in consultationwith their physicians and within the contextof current legal protections. Still, one mustobserve that one of the reasons it is safer to walk inEast Berlin at night than in West Berline is that thepopulace is more effectively monitored on theeastern side of the border. But that commitment tosecurity has its own substantial societal costs.The important point in all this is that, if we as asociety are not to be enslaved to our medicaltechnologies, we must help empower patients ortheir surrogates, not physicians or bureaucrats, withthe authority to make the crucial decisions. We mustas far as possible tolerate decisionmaking within thecontext of the family. Otherwise, democracies willbe overwhelmed by the technological imperative.Democratic societies will succumb to the seductionof using all possible treatment, even when suchtreatment is inhumane or violates human dignity,that is, even when it is the source of more harm thanbenefit for those treated.A State-by-State Approach to the Implementationof New High-Technology MedicineA Federal system in which the States havedifferent punishments for such serious crimes asmurder and rape should easily tolerate a number ofStates exempting themselves from the Child AbuseAmendments of 1984. We as a society have onlybegun the serious task of developing policy for theapplication of high-technology, high-cost healthcare, which can often offer only limited promise ofsuccess but at the price of significant pain andsuffering for the patients treated. There is unlikely tobe one single morally appropriate way to makemoral decisions regarding when such treatmentshould be applied. This is the case in medicinegenerally and with respect to the treatment of verylow-weight neonates, as well as neonates who areborn seriously ill with serious handicaps. Our Federalsystem can but benefit from the experience ofthose States that wish to forge their own approachesto responsible policymaking in these areas.Quality of Life and Artificial Hydration andNutritionWith regard to issues of quality of life, the reportmixes apples and oranges. For example, in consideringthe role of quality-of-life assessments in chapter 3of the December 2, 1988, draft, the report asks whyso many support and practice the denial of lifesavingmedical food and treatment. To begin with,1011At 647.Wisconsin v. Yoder, 406 U.S. 205, 232 (1971).12At 630.163

eports such as Kopelman et al. demonstrate that theprimary contemporary interest in restricting treatmentinvolves cases of severely ill neonates wherethe course of treatment would be painful andinhumane to the child and the chance of successminimal, but not necessarily clearly "virtually futile."Moreover, the current interest in restrictinghydration and nutrition primarily concerns neonateswho have permanently lost consciousness. In thisregard, it should be noted that the last Federalsubstantive examination of this issue led to theconclusion that "The decisions of patients' familiesshould determine what sort of medical care permanentlyunconscious patients receive. Other thanrequiring appropriate decisionmaking proceduresfor these patients, the law does not and should notrequire any particular therapies to be applied orcontinued, with the exception of basic nursing carethat is needed to ensure dignifiedand respectfultreatment of the patient." 13 It should also be notedthat medical care, at least in the case of adults, hasbeen interpreted to include artificial hydration andnutrition. This considered recommendation conflictswith the holding of the Redwood County Court,Family Division, in "The Matter of the Welfare ofLance Tyler Steinhaus," which was substantivelyguided by the Child Abuse Amendments of 1984.There the county court required the provision ofnutrition and hydration, although the child waspermanently and irreversibly vegetative. However,an infant, or for that matter an adult, in a permanentlyvegetative state has no capacity to experienceanything. Again, these cases are radically differentfrom those that involve comparing different levels ofthe quality of life of individuals who have notpermanently lost consciousness. The members of theCommission might consider what moral intereststhey would have in having their bodies maintainedwith artificial hydration and nutrition, were theypermanently and irreversibly to lose all consciousness,and their next of kin approved thecessation of all treatment, including artificial hydrationand nutrition. Whatever the Commissionersmight consider, it should be clear that quality-of-lifejudgments in such cases are radically different from13 President's Commission for the Study of Ethical Problems inMedicine and Biomedical and Behavioral Research, Deciding toForego Life-Sustaining Treatment (Washington, D.C.: U.S. GovernmentPrinting Office, 1983).14For a popular presentation of the plight of such parents, seeRobert Stinson and Peggy Stinson, "On the Death of a Baby,"those that concern the "quality of life" of a perceiving,profoundly retarded child. In the case of apermanently and irreversibly vegetative individual,there is simply no quality of life whatsoever, so thatthe next of kin might very well properly judge thatthe provision of artificial hydration and nutritionwould be an indignity that violates the moral andconstitutional rights of the afflicted, which may thenbe protected through the choices of the next of kin.This view has increasingly been sustained by recentcourt cases, which have recognized a constitutionalright to have such treatment refused. In this respectthe report's consideration of constitutional issues isonesided at best.Fixing What Isn't Broken Can Harm Rather thanHelpThe proposed recommendations appear directedto a problem that does not exist; they are very likelyto do much more harm than benefit to severely illneonates. Moreover, they do not propose a realisticsolution to the challenge of the continuing educationof medical specialists, whose lack of current informationwould be the basis of a problem, were it toexist. Furthermore, there is a failure to take adequateaccount of the actual overtreatment of extremely illneonates with poor prognosis for survival. To putthe matter in perspective, one would need to talk tothe numerous parents who have been forced toovertreat a severely ill neonate who dies despite along, painful, and protracted therapeutic intervention.14 In addition, one would need more sympatheticallyto review information such as that producedby Kopelman and others regarding the overtreatmentof severely ill neonates. If one does not do this,one will run the risk of again forcing the criticaljudgment of the courts, as from Justice Leonard D.Wexler, who held that "the government has taken anoversimplified view of medical decision-making." 15By proceeding as if massive abuse were occurring,one is likely further to encourage physicians toovertreat severely ill neonates who also have significantphysical and other disabilities. Moreover, theacquisition of data and the review of medicalrecords are not harmless endeavors. They not onlyare costly in terms of health-provider time andAtlantic Monthly (July 1979), 64-65. Numerous discussions withparents have confirmed to me that their experience is far fromunique.15 University Hospital, State of New York at Stony Brook, U.S.Court of Appeals of the Second Circuit, No. 6779, Docket83-6343, Feb. 23, 1984.164

trouble, but can distract from the effective treatmentof patients needing care. On this point, one shouldnote that the original Baby Doe regulations spawnedreviews of patient records that impeded the care ofill patients.In concluding, I encapsulate the foregoing reflectionsin terms of three general maxims:1. Avoid seduction by the therapeutic and technologicalimperatives.Just because a treatment offers some benefit ofpreserving life, it does not follow that it is a humanetreatment. The actual pain and suffering involved ina treatment must be taken into consideration whendeciding what treatment, if any, is indicated forindividuals who have a good chance of dying.2. Encourage responsible choices on the part ofindividuals and avoid the intervention of governmentbureaucracies, wherever possible, in individuallife-and-death choices.Given the complexity of modern medical technology,there is the temptation to generate new regulationsrather than to rely on existing civil andcriminal remedies. If our society gives in to thistemptation, this will lead to a bureaucratization ofmedical technology, not to a responsible and informedcitizenry who can use technology responsibly.This will make responsible choices more difficultand harm patients, not help them. Democraticsocieties should depart from already well-testedcriminal and civil remedies only when there is clearand convincing evidence that current approachesare substantively ineffectual. One must find ways toencourage responsible choices by individual parentswith their physicians regarding the treatment ofseverely ill neonates that minimize the intrusions ofthird parties.3. Recognize that a treatment that has a chance ofsaving life may be appropriately declined, if theharms are likely to outweigh the benefits.A good example is provided in adult health careby cancer of the pancreas, which has at best a 3percent survival rate, subsequent to very aggressivesurgical resection. However, the morbidity associatedwith the surgical attempt to cure is so great thatmany well-informed individuals, including physiciansdeciding for themselves, will reject the smallchance of cure in order not to be subjected to verysignificant suffering in the remaining months of life.There is no reason to believe that courts would notallow parents to make analogous choices withregard to their children. There should be no restrictionin the ability of parents to make such choiceswith regard to their newborn children, even if thosechildren are born with serious physical and mentalhandicaps. There should be no obligation to provideinhumane treatment.165

Appendix 1EXPOSING OUR CHILDREN, EXPOSING OURSELVESComments on the Report"Medical Discrimination Against Children with Disabilities"of the U. S. Commission on Civil RightsbyWilliam B. AllenChairmanTWO PHYSICIANSDoctor That's-Too-Bad, along with his colleague, DoctorSo-Much-The-Better, went to see a sick man.The latter expressed hope while his comrade maintainedthat the bed-ridden patient was headed to hisforebearers.The two being divided in mind for a cure, the sick manpaid Nature's price, After which Doctor That's-Too-Badseemed a prophet.Their profit rose further from the malady. The oneboasted, "He's dead, as I well foresaw." — "Had hebelieved me," said the other, "He would live well still."166My colleagues hate it when I introduce literary, historical, or philosophicalallusions. But Fontaine's little fable captures so evocatively the plight of thehandicapped newborn, I cannot avoid opening with it. Perhaps seeing it writtenout will make it more bearable than merely hearing it read.I comment on the disinclination to indulge my academic penchants becausethis is one case in which it makes a substantive difference in the report we areabout to approve (and there is a majority of this body that has already indicated aresolve to approve it no matter what). Such a substantive effect emerged in ourpreliminary discussion last November. At that time I opened my remarks with thereflection that my reading of Hippocrates suggested a possible explanation of thedifficulties. As the name Hippocrates fell from my lips, and just as swiftly, Idiscerned in the body language of my colleagues a considerable degree offrustration and bemusement - so much so, in fact, that I detoured the comment Iintended to make into innocuous channels and let the matter drop.I now apologize for my faint-heartedness. While I expect the sympathy ofeveryone who knows how difficult it is to speak what no one wishes to hear, Irecognize nonetheless that I had then an obligation to persevere. The fact that thequestion I wished to broach at that time looms still more ominously now reproachesFontaine

my timidity. Accordingly, I will set forth succinctly the concerns that emergefrom Hippocrates, before continuing with my appraisal of this report.LIFE AND HEALTH THE ENDS OF MEDICINE:RIGHTS NEITHER DEFINED NOR ILLUSTRATED BY NEEDS:Rights are neither defined nor illustrated by needs, not for handicapped norany other category of Americans. The reason black people ought to enjoy equalrights of citizenship is not that most of them are poor. It is rather that they arehuman beings to whom the rights and arts of self-government pertain no less thanto any other humans. We have abiding confidence that a regime of equal rights isthe surest relief for unmerited disadavantage. We reject the contention, however,that to relieve disadvantages js to guarantee equality of rights. Insofar as thisreport takes the opposition position on this crucial question, we cannot approve it.The correct application of this principle to the handicapped is to insist that theysuffer no further burdens (above all civil burdens) than are already intrinsic totheir circumstances. [I might point out that there is also a moral corollary, namelythat room be left for considerateness by others.]HANDICAPPED OR DISABLED:Consider this more closely. Even the language we use is revealing. We mustchoose between the words "handicapped" and "disabled." There is an orthodoxy, tobe sure. Nevertheless, where meanings count we remain free to question evenorthodoxies. There is a difference between "handicapped" and "disabled" which isobvious - namely, the one term is relative, the other absolute. A handicappedgolfer is one who golfs, though never so well as another. To consult the termsalone, a disabled golfer is one who can not, or can no longer, golf. Disabled meansto lack an ability, while handicapped means to possess an ability in qualified form.I have preferred handicapped in this general discussion because, in the mattersthat count (above all rights of citizenship), I am persuaded that the handicappedrather are abled than disabled, even if sometimes in qualified form.If this reasoning be correct, then we can see the relevance of maintainingthat rights are neither defined nor illustrated by needs. Insofar as rights relate to167

abilities or functions, they are defined rather by that to which the ability pointsthan by the ability itself. But the ability is nothing other than the nee,d, eitheractualized or in some state of development. The ability to take nutrition points tothe right to life; the need for nutriment is the abiity to take nutrition eitherfunctioning or impeded in its functioning. Only what needs nutriment can havethe ability to derive nutrition from sources of nutriment or to be impeded in thatregard. Thus, only a being endowed with the right to life can have the ability totake nutrition and therefore needs sources of nutriment. We do not say, because abeing needs nutrition, it has the right to life, except inductively. Nor, then, canwe say, because a being needs nutrition, it has a right to sources of nutriment.I will be prosaic: if doorways in buildings were characteristically just sixfeet high in our society, such that I would have to stoop to enter, it would notconstitute the violation of any right I have, even though it were more commodiousif I did not have to stoop. It would represent a need but not a right for me tohave doorways tailored to my height, any more than it did, from the middle to theend of the 18th century, for George Washington, who stooped to pass through mostdoorways.Architects and carpenters cut doors, when constructing buildings, to thegeneral dimensions of the people who order them. Therefore, over time and in theaggregate, architecture and carpentry constructs buildings to what we might call anaverage of humanity. That average is not arrived at by looking at humankindaltogether; it is arrived at by fitting the peculiar needs of the individuals whoexecute the orders. Over time through that process one will arrive at an averagefor all individuals, since most will fall within certain ranges.This notion of the average of humanity, which the architect ends upapproaching indirectly by serving the needs of the individual human, can bedistinguished from the objective of health, that the physician consults. The notionof health is an absolute. It is certainly the case that in any given individual thephysician has to inquire what condition of body and mind will be healthful. Thatinquiry, moreover, is carried out on the basis of a standard of health which is notin fact arbitrary or derived from the individual. The ultimate goal of healthserves as a guide for the physician in elaborating such functioning of body andmind as makes it possible for the individual human being to attain the end ofhealth. That human end has been described or defined for us in the Declarationof Independence and the American tradition largely as the "pursuit of happiness."What we may take than to mean is that the peculiar function of a human being isthe pursuit of happiness, and that healthful functioning for a human being is to beable to carry on that pursuit with all of the abilities at the particular humanbeing's disposal. We say, then, that for the human being health is not any givenphysical or bodily and mental or spiritual functioning. It is rather theharmonizing of physical and mental functions or abilities in the pursuit ofhappiness. Such abilities as any human being has, and insofar as those abilitiescan be properly harmonized in the pursuit of happiness, would denominate thathuman being a healthy human. Such a one would function in the ultimate waythat humans function - namely, in the pursuit of happiness.168On that kind of measure one can see that handicapped or nonhandicappedalike may all enjoy health. They do not require the identical capabilitiesphysically or mentally in order that their capabilites may be harmonized in thepursuit of happiness. Insofar as this report denies that there is such a standard ashealth for human beings, it does not advance the cause of the handicapped. It

ather undermines standards moral and physical for all human beings in general.It places the handicapped at a greater disadvantage by treating the standard ofhealth as if it were arbitrary and merely subjective rather than fixed and absolute.Such a position would surely scandalize Aristotle and Aquinas, were they to see itset forth by students of theirs. And I must confess that it does no honor to thisCommissioner to see it come from the staff of this Commission.THE REPORT:Our report, in its own words, "focusses solely on questions ofdiscrimination." [p. 3] This is the correct posture for the Commission on CivilRights, seeking to carry out its mandate under laws enacted by Congress. But thatnoble profession is belied by the note [#4] which addresses "the legal right ofchildren with disabilities to receive equal treatment." This might represent only aninfelicity of language. It concurs, however, with the language at page 17, whichmaintainsTreatment decisions resulting in the denial of lifesaving medicaltreatment to children with disabilities cannot be viewed in isolation.Together with discrimination in employment, barriers to access totransportation and physical facilities, and a tradition of institutionalization,these decisions can only be understood in the context of longstandingattitudes and practices toward people with disabilities.I believe that this is false; while it is true that discrimination against handicappedpersons has been pervasive, it is not true that it has been systematic. Further,there is present here the common fallacy of subjecting ancient reforms to themodern standard of criticism, finding them wanting, and then concluding that theymust have proceeded from ill motives.This is the very argument -- the right to equal treatment, based on historicaldeprivations - which I said above creates problems in our understanding of civilrights. In this case, it obscures the responsibility of physicians and hospitals. Inthe Carlton Johnson case, for example, we focus on procedures, when erroneousjudgment was at fault. These kinds of decisions are not medical decisions - theydo not take life and health as their end. And just as the one most skilled atconcocting an antidote is also the most successful poisoner, here we see thetechnology and judgment of medical pratictioners warped out of its natural order.I believe our report needs to tell us how this came to be, but it does not.To undertake that mission, however, would have meant forswearing theattack on ideas of "normality." We cite testimony attacking that standard at page18 (ch. 1), and in note 34 our own language, indicating that "society" structures itstasks and activities unfairly, shows the extent of our agreement with it. Butsociety does not structure its tasks and activities. Men and women structure theirtasks and activities, as architects and carpenters build for particular individuals.Society is nothing other than the resulting aggregate. There is of course aspectrum of abilities, and such a spectrum by definition must express a statisticalnorm. When folk say there is no normal they might just as well insist that "realityis whatever we say it is." Those two statements have the same truth value. Thatkind of radical subjectivity is fundamentally nihilistic and ultimately incompatiblewith a stable moral order.169

My principal reason for objecting to the attack on the idea of normality isthat we know that the ab-normal contains genius as well as deficiency, and wenormals are unable to distinguish them. The purpose for attacking the distinctionseems to have been the just desire to remove arguments from those who wouldsupport "elimination of people with some disabilities" [p. 58, ch. 3]. Thehandicapped would derive greater protection, however, from being integrated withnormal people on the score of humanity than from attempts to deny the obvious.Consider: All newborns are thrown on the resources and care of their parent(s).Thus, in the absence of medical/community care, most would survive on thecombination of parental love and their own eventual natural abilities. On thosegrounds, many of the handicapped also would survive. Some, however, would not(just as many of the normal children would not). Then arises the question, whataffects the prospects of those who would not survive, whether handicapped ornormal? To answer that question, we introduce medical science and communitycare. It turns out that art -- medical science ~ can supply much of what is neededto fight off pneumonias and other life-threatening menaces. Thus, the parent onceinformed, the initial love is bolstered by access to arts otherwise not imagined.This process should differ not at all for the handicapped child and the normalchild -- it is the normal process!HOW TO AVOID INVIDIOUS DISCRIMINATION:If the goal of protection for handicapped newborns is to assure them accessto the normal process of nurture and care, and to avoid subjecting them to unfaircivil burdens on the basis on their handicaps, then we have a strong basis forissuing a report that calls for changes in the way we do things. This report hasdone an excellent job of case-building. It is a work of advocacy rather more thana dispassionate analysis. As a work of advocacy, it is not a sufficient basis forevery judgment and recommendation we might care to make. Nevertheless, enoughevidence is apparent here that we are enabled to to tackle certain egregiousoversights in the legal framework through which we seek to protect the rights ofhandicapped newborns.The report lists fourteen recommendations for action. Among thosefourteen one does not find the one which I regard as most urgent and, likely, mostefficacious. Since the Hippocratic Oath no longer exists for us apart from theorganic law of this republic, it is extremely important that we subject medicalpractitioners to the judgment of American law in light of the promises of thoseorganic principles. Congress possesses and has before exercised every powerrequired to make good the pledge of the Fourteenth Amendment. The Section 5powers of Congress inform the Child Abuse Amendments.FIRST RECOMMENDATION:Those powers were not exercised in such a way as to guarantee that wecould assure ourselves that the rights of handicapped newborns were beingprotected. Yet, nothing is more common in our society than the meticulousreporting of births and deaths! It would require little in the way of additionalexpense, and still less in labor, to require that the births and deaths ofhandicapped newborns, with notation as to course of treatment, be systematicallyreported to the Department of Health and Human Services. We have opted instead170

for a cumbersome, jerry-rigged structure of monitoring that consumes resourcesand delivers next to nothing by way of sevice. To my mind, this would be themost valuable recommendation we could make, a universal reporting requirement.This requirement, I must add, is nothing unusual, paralleling what many firms aresubject to in other respects with EEOC or OFCCP or other agencies.RECOMMENDATIONS IN THE REPORT:I concur with recommendations 1 and 2 and 4 through 7, though not alwaysfor the reasons set forth.* I dissent from recommendations 3 and 8, as expressiveof the author's intention to reinterpret the language of "equal protection" into alanguage of "equal or better treatment." I agree with the thrust of recommendation4, but doubt the Commission's jurisdictional basis for making it.Concerning recommendations 9 through twelve, I regard the entire P & Astructure which they seek to strengthen to be misconceived in the important respectthat, as the record here shows, they elaborate a system whereby the rights ofhandicapped newborns are made tenuous and imperilled by the apparentsubstitution of procedural for substantive fairness. The P&A responsibilities underthe Child Abuse Amendments would make greater sense if, independently, someonewere maintaining the applicability of substantive standards. That would be thecase under a universal reporting requirement which facilitated routine monitoring.A system of intervention (the P&A system is relevant only where guarantees togovern intervention are evident) must be understood as a system to protect life, notto judge it. The current system operates primarily to provide a framework formaking life-death judgments, and our procedural recommendations do not changethat. The problem becomes apparent when one notes that the P&As are hip deep inmedical judgments (and criticized for not making them well), although this reportmaintains that we aim to isolate problems of discrimination from medicaljudgments.CONCLUSION:I said above that it causes me distress to receive from the staff of thisCommission a report which treats health as an arbitrary and subjective standard.But I do not entirely blame the staff; I have to assume that what they have done isto react to what they have thought others desired, rather than to think originallyabout how it is the handicapped may come to enjoy the rights of personsguaranteed in the Constitution and the Declaration - the rights persons have to betreated individually in terms of the firm objective of the pursuit of happiness andtherefore of health.** Others not understanding that could perhaps be led to makedemands ostensibly in the interests of the handicapped, though in fact harmful tothem.* These are the recommendations as set forth in the "Introduction." The recommendations are numbereddifferently in the concluding chapter, and there are two more besides!* * This is certainly to be expected when the work of an independent commission such as ours comes to becaptured by advocacy groups, as this has been. The very process which, last September, I described as harmfulin the extreme to this agency's prospects for making a meaningful contribution to our nation's future, seems tohave been the process by which this report was produced. Some say what's good for the goose is sauce for thegander. I think it the very poison. If we have any saving grace in this hour, it is that some of us remainsufficiently alert to sound the alarm. It will not happen again!171

I derive this hint from the many communications I have received in recentdays from organizations urging me to approve this report without having read itand indicating thereby that for them the ideas are not what count. They seemunder the spell of the view that there is a kind of politics, a kind of lobbying thatis essential to defend fundamental rights and which transcend the actual contentof those rights. Whether they accept the view of our staff that rights are positiveand developmental (historically developmental, that is) as opposed to beinginalienable and fundamental, I cannot say. They certainly accept the view that wedo not require to think much about them in order to defend them.This Commissioner cannot accept that view. I telephoned the author of thefirst of these letters and inquired whether he had read the report; he respondedthat he had not, but that he was taking the work of someone who has read it,someone here at the Commission, and whom he trusts. Now we all know that it isimportant to be able to trust people when we make certain kinds of practical andmoral judgments. For no human being is capable of reviewing all the facts andcircumstances that come to our attention and demand a moral judgment. But,having said that, one must add that it is therefore essential that the persons whomwe trust indeed deserve our trust, that they possess such capacities mentally andmorally as to make us confident that we are not likely to be led astray. Whoever itbe my correspondent trusts here at the Commission clearly does not rise to such astandard of ability ~ and perhaps not of honesty -- as to have merited that trust.I assume that my correspondents do not trust me. After all, they do notknow me, and what they have heard of me concerning this report is a lie. Butwhat I have to say, I say not to gain their trust but to serve the cause of truth. Ican think of no better way to emphasize to you how that operates than byreturning to a frequent source of ore for my reflections -- Abraham Lincoln.As I said at the outset, this report is going to be approved today. It's goingto be approved without my having had serious opportunity to contribute to itsshape or structure. I am just proud enough to be reluctant to add my name toanything that I have been denied occasion to shape -- not that I lack time, not thatwe lack the opportunity at this Commission, which is here today, will be back nextmonth, and, as everybody knows, will be here through this year, but -- becauseothers have willfully structured the process with the purpose in mind to deny mesuch an opportunity. Having been denied that opportunity, then, I will attach thisstatement to the report -- and I will do it in the spirit of Abraham Lincoln, in thatspirit he expressed in the "Subtreasury Speech of 1839" and with which I now close:It may be true; if it must, let it. Many free countries have lost theirliberty; and ours may lose hers; bit if she shall, be it my proudest plume, notthat I was the last to desert, but that I never deserted her... I cannot denythat all may be swept away. Broken by it, I, too, may be; bow to it I neverwill. The probability that we may fall in the struggle ought not to deter usfrom the support of a cause we believe to be just; it shall not deter me. Ifever I feel the soul within me elevate and expand to those dimensions notwholly unworthy of its Almighty Architect, it is which I contemplate thecause of my country, deserted by all the world beside, and I standing upboldly and alone and hurling defiance at her victorious oppressors. Here,without contemplating consequences, before High Heaven, and in the faceof the world, I swear eternal fidelity to the just casue, as I deem it, of theland of my life, my liberty and my love... Let none faulter, who thinks he172

is right, and we may succeed. But, if after all, we shall fail, be it so. Westill have the proud consolation of saying to our consciences, and to thedeparted shade of our country's freedom, that the cause app'roved of ourjudgment, and adored of our hearts, in disaster, in chains, in torture, indeath, we NEVER faultered in defending.APPENDIXAN EDIPUS COMPLEX TOWARD LIFE(An Essay, as it appeared in THE CRA NEWS, fall 1986)Abortion deprives us of the deepest instincts ofhumanity. This is the conclusion which lies at the bottomof the heated debate which still rages within the UnitedStates and ought to stir the world itself. From the racist,eugenics-oriented movements which introduced the idea ofsystematic abortion early in this century, to the currentrighteous defense of indifferent abortion, the results arethe same: they rest on the premise that we can become dull,insensitive to the claim of humanity which is at stake.The preferred philosophical base of pro-abortionistsresembles the Oedipus prophecy — there are exceptionalcases in which humanity itself recoils from demanding that apregnancy be carried full term. Rape, incest, and deformityusually head the list. This kind of reasoning has a glaringdefault. It will be understood best if one rehearses thecollege philosophy example of the life-raft scenario. Twopersons adrift at sea on a life-raft are starving. Theirchances are minimal at best and absolutely nil ifnourishment is not .found. In that situation, is it just thatone of the two might resort to canniablism (eating theother) in order to have any chance at all of surviving?Generally, everyone answers yes, just as most people areinclined to say, "yes, in the case of incest I can conceiveof abortion as at least a justifiable homicide." Ought weto conclude from this exception, however, that the generalmoral rule must therefore admit the propriety of cannibalismor abortion in any case? Clearly that is not so, and werequire above all today to make clear why it is not so.When a decade ago I asked the "right to life" movementto speak of the "unborn child" instead of the "foetus", themotivating idea was that language plays an important role infocussing our moral antennae and such a tactic was neededto fend off the insensitivity with which we were surrounded.I continue to believe that this is necessary, but we nowrequire more than words, we need to resurrect an entirehumanitarian tradition in order to prevail in this struggle.173

moral distinction. A girl is a human being! No one who hasordered the death of his unborn girl can claim to have anydoubts about her humanity. What he is saying to us is thathe prefers boy humans to girl humans. As occurs so often inhuman affairs, we discover in the practical arts of humanbeings a much surer guide to answering difficult moralquestions than in mountains of abstruse scientificdisputation. While the scientists continue to debate aboutjust when the onset of humanity occurs, the people of SouthKorea demonstrate that they know full well: namely, fromthe moment one can determine the unborn child's gender!One would imagine that this discovery merited headlinesand huzzahs: The long sought answer found! Unborn childdetermined to be human boy or girl! Supreme Court now hasguide to follow! But no. The news is rather different. "S.Korean Parents Tip Birth Ratio." "In the first ten months ofthe year, there were 117 male births for every 100 females."Normally, male births outnumber female births only slightly,and the numbers are evened up later by a higher mortalityrate among males. One of the Korean doctors who sounded thealarm, Dr. Roh Gyung Byung, declared it "a terriblesituation," and rightly so.Nothing demonstrates the necessity of this conclusion sostrongly as the recent report from South Korea, thatselective abortion is there being practiced to indulgesocial prejudice about the preferred gender of offspring.Unborn girls are being aborted to make room for boys inSouth Korea. One needs to pause and think over theimplications of this. The progress of modern science hasmade possible a pre-term identification of gender in theunborn child. What has followed is this systematic abortion— a eugenics. But don't stop there. Note that the veryidea of identifying a child's gender entails a necessaryDo we understand, however, just how terrible it is?This story is in fact confirmation of just how low we havedescended in the scale of humanity. Abortions are not newto mankind. Mankind, however, have not always been soinsensitive to them. The classic story of abortion —exposure of the unwanted infant — was written by Sophoclesand inspired Sigmund Freud with the lynchpin of hispsychological theories, the Edipus complex. Sophocles 1Oedipus was to be exposed just after his birth, but thenurse entrusted with the chore could not look upon the"bundle of joy" with the required callousness. Rather thanleave the child to the tender mercies of wild beasts, sheleft it in the care of a peasant who raised him to a maturehumanity. The tragedy which resulted for Oedipus' familyhas often been misinterpreted as resulting from the nurses•174

tenderness. A more understanding reading would show that itderived rather from the decision to abort — an attempt toavoid a prophecy of tragedy, which misread the prophecy asreferring to events yet to come and not to the character ofthe very persons who attempted the abortion.The children who are exposed today are less fortunate.They never meet with such nurses as Oedipus' even when theymight have a chance of being raised to mature humanity bystrangers. Despite the feeble efforts of government tomandate care for aborted children who, with the assistanceof science, might yet survive, the prevailing moral climateproduces virtually no examples of such heroics. Is it notclear that the child who is exposed by being ripped from thewomb is at a great disadvantage compared to Oedipus? Thosewhose souls would have to resonate with the instincts ofhumanity are already dulled into insensitivity by the veryoperation through which they eliminate the child.The modern world cannot depend on second thoughts topreserve the instincts of humanity. Modern science leavesno room for second thoughts. Lest we are to part foreverfrom the tradition of humane caring, we have no alternativebut to place abortion itself under a severe proscription.The Edipus Complex — a son's rivalry with his father andlove for his mother and its converse, the Electra Complex -.-acquires a perverse meaning in a world in which fathers andmothers make the choices which South Korean parents are nowmaking. The new Oedipus must die, unless we collectively,as a generation, make a commitment to him before he isexposed to the danger. This is the possibility we now await,assuming that he is not already among the lost.William B. AllenProfessor of GovernmentHarvey Mudd CollegeClaremont, California 91711175

Appendix 2SURVEY OFSTATE BABY DOE PROGRAMSRICHARD P. KUSSEROWINSPECTOR GENERAL SEPTEMBER 1987OAI-03-87-00018[Executive Summary and Appendices omitted.]

INTRODUCTIONThe terra baby doe refers to a severely disabled infant with alife-threatening condition who is denied appropriate medicaltreatment. Two highly publicized court cases called nationalattention to baby doe in the early 1980s, and led to Federallegislation to protect the rights of such infants.In the first case, an infant known as Baby Doe was born withDown's syndrome and a surgically correctable blockage of theesophagus* The baby's parents and doctor agreed that surgeryshould not be performed and that food and water should bewithheld from him. The hospital sought a court order topermit surgery, but the court upheld the parents' decision,and the State supreme court refused to disturb the lowercourt's ruling. Baby Doe died before the case could be filedin the U.S. Supreme court.The second case involved an infant known as Baby Jane Doe,who was born with multiple neural tube defects, includingspina bif Ida (an open lesion on the spine), microcephaly (anabnormally small head), and hydrocephaly (an accumulation offluid on the brain). The parents approved medical treatmentto reduce the chance of infectioji, but refused surgery toclose the spinal lesion and drain excess fluid from thebaby's brain. The parents' decision was later upheld by theState courts. It is not known what became of Baby Jane Doe.In March 1983, the Department of Health and Human services(HHS) published an interim final rule stating that section504 of the Rehabilitation Act of 1973 applied to handicappedinfants and establishing a Federal hotline for reports offailure to feed and care for such infants. One month later,the interim final rule was struck down in U.S. DistrictCourt. The Department published revised proposed regulationsin July 1983 and final regulations in January 1984. Thesefinal regulations were struck down in U.S. District Court inJune 1984.The two baby doe cases and the subsequent debate amongmedical, professional, pro-life and disabilities groupsregarding the ethics of treatment/nontreatment decisionsaffecting disabled newborns, including the role andresponsibilities of States and the Federal Government,culminated in passage of the 1984 amendments ta the ChildAbuse Prevention and Treatment Act.The amendments required State CPS units receiving formulagrant funds under the Act to define baby doe situations asmedical neglect, to establish procedures for responding toreports involving such infants, and to have liaisonsdesignated in hospitals where babies are born or treated to- 1 -177

insure the immediate referral of potential baby doe cases toCPS. Final implementing regulations were published in April1985.The amendments also required HHS to publish model guidelinesencouraging hospitals to establish Infant Care ReviewCommittees (ICRCs). Model guidelines were published in April1985. The ICRCs are intended to educate hospital personneland families of severely disabled infants, recommend policiesand guidelines concerning the withholding of treatment, andreview cases involving such Infants.This inspection was initiated at the request of the SurgeonGeneral and the Administration for Children, Youth andFamilies, which administers the Act within HHS. The purposeof the inspection was to determine (1) how States arecarrying out their baby doe responsibilities, and (2) how agroup of hospitals with responsibility for acute infant careare structured and functioning to address potential baby doesituations.The inspection was carried out in two phases. One phaseconsisted of a telephone survey of CPS units in all 50 Statesand the District of Columbia. A second phase involved visitsto 10 large hospitals in 8 major cities around the country.Seven were children's hospitals Identified with assistancefrom the surgeon General.This report, entitled "Survey of State Baby Doe Programs, 11describes the results of our survey of State CPS agencies.companion report, entitled "Infant Care Review Committeesunder the Baby Doe Program," presents the findings of ourhospital visits*A- 2 -178

FINDINGSSTATE BABY DOE PROCEDURES ESTABLISHEDThe Child Abuse Amendments of 1984 (P.L. 98-457) require thatin order to qualify for formula grant funds under the Act,States must define baby doe situations as medical neglect,and establish procedures within the State Child ProtectiveServices (CPS) system for responding to baby doe reports.State procedures were required to be in place by October1985, and to include provisions for:ooodesignating individuals in hospitals to serve as theofficial liaison with CPS for all baby doe matters,prompt notification of CPS by these individuals ofsuspected baby doe cases, andauthority for CPS to pursue legal remedies to prevent theinappropriate withholding of treatment from theseinfants.Under the Act, States way apply for two types of grants:Basic Grants and Disabled Infant.. (Baby Doe) Grants. InFiscal Year 1986, Basic Grants t:o States totalled $9 million,and $2.4 million was distributed nationwide in Baby DoeGrants. In order to qualify for a Baby Doe Grant, a Statemust first qualify for and receive a Basic Grant.«*We surveyed CPS agencies in all 50 States and the District ofColumbia. Forty-one jurisdictions received both Basic andBaby Doe Grants for Fiscal Year 1986. Seven other Statesapplied for and received only Basic Grants, and three States(California, Indiana and Pennsylvania) did not apply foreither Basic or Baby Doe Grants. Appendix A summarizes thetypes of activities undertaken by States with their FiscalYear 1986 Baby Doe Grants.Ten States reported they have passed special State laws oramended existing legislation to address baby doe situations.An eleventh State has developed a baby doe regulation whichis expected to become law during 1987. The remaining Statesindicated that new legislation has not been necessary becausetheir existing child abuse and neglect legislation coversbaby doe situations.forty-eight States^ including the seven which did not applyfor Fiscal Year 1986 Baby Doe Grants^ reported that stat-ababy £oe procedures have been established. Our survey foundthat all State procedures include provisions for promptnotification and CP£ legal intervention and nearly all Havemet the hospital liaison designation requirement in tiRr Set.- 3 -179

Hospital Liaisons Designated in Most HospitalsThe following table depicts states' progress in designatinghospital liaisons for prompt reporting of potential baby doecases to CPS.HOSPITAL LIAISONS DESIGNATED(as of March 1987)RESPONSEAll hospitals with NICUaor OBsSTATESNUMBER PERCENT27*53 %More than two-thirds ofhospitals with NlCUsor OBsLess than two-thirds ofhospitals with NICUs orOBsDon't KnowLiaisons not requiredfNonparticioatino States)13**6**32251264TOTAL 51 100 I* Includes 6 states not receiving Federal baby doe funds*** Includes 1 state not receiving Federal baby doe funds.According to CPS respondents in 40 States, hospital liaisonshave been designated in at least two-thirds of all hospitalswhere babies are born or treated. In six states, fewer thantwo-thirds of such hospitals have designated liaisons/ whilethree States do not know the percentage of hospitals whichhave designated liaisons. Eight States not currentlyreceiving baby doe funds are nevertheless following the Act'srequirement to designate hospital liaisons.Of those States providing information on frequency ofupdating their lists of hospital liaisons, 28 indicated theirlists are updated annually, and 5 others update periodicallyor as needed.- 4 -180

Prompt Notification Systems EstablishedOur survey found that all States have systems in place toinsure that CPS agencies can be notified immediately of anysuspected instances of child abuse or neglect, includingpotential baby doe cases. These systems have been in operationfor many years. Major features of prompt notificationsystems include:ooolegal requirement for all professionals to report anysuspected instance of child abuse or neglect to CPS;procedures for hospital liaisons to follow in reportingpotential baby doe cases; andtoll-free phone numbers.About 80 percent of the States indicated that they haveeither statewide or local 24-hour toll-free phone numbers forreceiving reports. While the remainder do not have toll-freenumbers, they receive and respond to reports through localCPS offices during normal working hours, and have provisionsfor 24-hour phone coverage using a variety of arrangements.These include keeping local CPS-switchboards open 24 hoursand using the 911 emergency number or local police departmentas the first point of access.Legal Intervention Authority Already AvailableAll States reported that CPS agencies have historically had.legal authority, under state laws to intervene whennecessary to protect the well-being of abused or neglectedchildren. Potential baby doe situations, are covered underthis authority. The CPS respondents indicated that if theirInvestigation of a potential baby doe case determined thatMedically indicated treatment was being withheld", They wouldseek temporary custody of the infant and a court order toallow the needed treatment to be provided.- 5 -181

BABY DOE COMPARED WITH REGULAR CPS INVESTIGATIONSWe asked CPS respondents how their baby doe procedures differfrom those used when investigating other reports of childabuse or neglect. Three major differences were citedconsistently: immediate response, use of medical consultantsand State level involvement.1. Immediate ResponseStates report that due to the urgency and potentiallylife-threatening nature of baby doe situations, thesereports are considered emergencies and are investigatedimmediately* In general, States require that theinvestigation begin with an immediate call to thehospital liaison where the infant is located to ascertainthe basic facts in the case. In some States, apreliminary report is required within as little as 2hours.2. Use of Medical ConsultantsAll States report they have access to medical consultantsto make medical determinations in baby doe cases, statesuse a variety of arrangements to insure immediate accessto and availability of qualified medical consultants.Those mentioned most frequently were State levelcontracts with medical schools, children's hospitals orprivate pediatricians; and agreements with medicalprofessionals employed by the state (frequently in statehealth or social services departments).182In a few States, local CPS offices are responsible forobtaining medical consultants. Several States haveestablished multidisciplinary teams to investigate babydoe reports. These teams typically consist of apediatrician or neonatologist, a social worker and a CPSworker, and could also include other medical specialistsand legal expertise.3. State Level InvolvementAbuse or neglect reports are routinely investigated atthe local level. State CPS offices set policies, provideguidance and monitor the performance of local offices,but rarely conduct investigations. Because of thesensitivity of potential baby doe situations, many Stateshave elevated the level at which these cases are handled.Nine States reported that the initial baby doeinvestigation would actually be conducted by State CPSstaff. Several others require that the State office benotified immediately when a baby doe report is received;while the initial investigation would be handled locally,the State office would be kept informed and could step into lead or participate in the case if needed.- 6 -

ESTABLISHMENT OF HOSPITAL INFANT CARE REVIEW COMMITTEESAs required by the baby doe amendments, HHS published modelguidelines to encourage hospitals with acute infant careresponsibilities to establish infant care review committees(ICRCs). ICRCs are intended to educate hospital staff andfamilies about baby doe situations, develop hospital policiesand review potential baby doe cases.We asked CFS units how many hospitals in their States haveestablished ethics committees or ICRCs. State responses areshown below*HOSPITALS WITH INFANT CARE REVIEW COMMITTEESRESPONSEAll hospitals with OBs/NICUsMore than half of hospitals with OBs/NICUsHalf or fewer hospitals with OBs/NICUsAll large hospitals with OBs/NICUsUnknown/No responseSTATESNUMBER PERCENT13 25%2 422 434 810 20Thirteen States (25 percent) reported that all hospitals withOBs or NICUs have ethics committees or ICRCs. The CPSrespondents in 22 other States (43 percent) estimated thatcommittees have been established in half or fewer suchhospitals. Ten States (20 percent) did not provide anyestimate. Additional detail on the number of hospitals withICRCs established is provided at Appendix B.State estimates are generally consistent with the findings ofa national survey recently completed by the American Academyof Pediatrics (AAP). The AAP survey found that as of August1986, about 52 percent of hospitals with over 1,500 birthsannually or an NICU were using committees to address ethicalquestions related to the care of severely disabled infants.An additional 8 percent were considering forming such acommittee. [National Collaborative survey of Infant CareReview Committees, AAP, March 1987].- 7 -183

We also asked state CPS offices what efforts they had made toencourage hospitals to establish ICRCs, Their responses aresummarized in the following chart.STATE EFFORTS TO ENCOURAGE ESTABLISHMENTOF INFANT CARE REVIEW CQMMITTEESRESPONSESome encouragementLittle or no activityLocal responsibilityFunction contracted outNo responseSTATESNUMBER PERCENT231443745%278614Nearly half of the States mentioned activities to encouragehospitals to establish ICRCs. Efforts range from letters tohospital administrators and CPS-sponsored seminars forhospital personnel to development of ICRC models and hostingconferences. About 25 percent of the States have done littleor nothing in this area. In some States, most or allhospitals with HICUs have already established ICRCs or ethicscommittees, and no encouragement from CPS agencies is needed.Other States feel that such a decision rests with thehospital and it would be presumptuous of CPS to assume anyrole in that decision.- 8 -184

SIX BABY DOE CASES CONFIRMED SINCE OCTOBER 1985We asked CPS agencies how many baby doe reports had beenreceived in their States, both before and after October 1985,when the baby doe regulations took effect. As the followingchart shows, the volume of reports received did not increaseafter October 1985.BABY DOE REPORTS RECEIVED BY CPS AGENCIES*Alabama 0 2Alaska 0 XArizona o 1Arkansas 1 0Connecticut l 0Florida 0 1Georgia 4 1Illinois 3 0Indiana 1 0Kansas 0 1Kentucky 1 0Maryland 0 1Minnesota 0 1New Hampshire 1 0New Jersey 2 1New York 0 2North Carolina l 0North Dakota 1 0Oklahoma 0 3Oregon 2 0Pennsylvania 1 0Texas 0 1Virginia 1 0Washington 0 3Wisconsin 1 0Wyoming 1 0TOTALS 22 19* Does not include States which have neverreceived a baby doe report or for which noinformation is available.According to respondents, 22 baby doe reports were receivedin 15 states before October 1985, and 19 reports werereceived in 13 states since 1985. Twenty-four states havenever received a baby doe report, and one state does not keeprecords at the State level.- 9 -185

Limited information was available on 13 of the 22 baby doereports received before October 1985. The. CPS. intervened in5 of the 13 cases and treatment decisions were changed in 4instances. It is believed that two of the affected infantasurvive. In six cases, CPS review determined that thecharges were unfounded, and two reports were not consideredtrue baby doe cases. See Appendix C for additional detail onindividual cases.In 6 of the 19 reports received since October 1985, CPSinvestigation resulted in intervention by the agency toinsure the proper application of the baby doe treatmentguidelines, four of these cases involved Infants born withsevere birth defects, one was a low-birthweight infant, andone Baby was born healthy but suffered severe physical abuse.Treatment decisions were changed in all six cases., and fiveof "the affected infants were living at the time of ourinspection.In nine cases, CPS investigation confirmed that the baby doetreatment guidelines were being applied appropriately and nofurther action was required. Six of the affected infantswere severely disabled at birth, while three were bornnormal. Two of the three suffered child abuse while thethird was injured in a fire.Of the remaining four reports received by CPS agencies, twowere determined not to be true baby doe cases, and noinformation is available for two reports.Additional information on the 19 baby doe reports receivedsince October 1985 is provided at Appendix D.186- 10 -

STATE COMMENTS ON BABY DOE RESPONSIBILITIES ANDFUNDINGIn Fiscal Year 1986, nearly $11.5 million in Federal fundswas distributed to States in the form of Basic Grants andBaby Doe formula grants. Over $2.4 million (21 percent) ofthis total was for Baby Doe Grants.We asked CPS agencies to comment on the appropriateness oftheir baby doe responsibilities and the need for continuedFederal Baby Doe Grants. Some States made more than onecomment, while others chose not to comment at all. The rangeof opinions expressed by respondents are highlighted below*CPS COMMENTSA. CPS ResponsibilityNUMBERSTATESPERCENTIt is appropriate for CPS tohandle baby doe cases at Statelevel. 28 55%Because of medical and ethicalissues involved, CPS responsibilityfor baby doe cases is notappropriate. 11 22B. Federal FundingBaby doe funds are useful, butState would continue to carry outprogram without special funding. 13 25Baby doe funds could be put tobetter use on general childprotective programs, medicalneglect or other prioritiesidentified by States. 12 24State could not operate baby doeprogram without special funds. 11 22Federal set-aside funds wereuseful initially, but are nolonger needed. 8 16Baby doe problem is too small towarrant special Federal funds orattention. 5 10While over half of the respondents stated that CPS is theappropriate state agency to handle baby doe reports, nearly-Ills?

one-quarter felt that baby doe cases involve medical andethical issues which should be dealt with in hospitalsbetween parents and medical professionals.*Opinions on the continued need for special Federal fundingdiffer as well. About one-quarter of the States indicatedthat their baby doe programs would suffer without specialFederal funding. Another quarter felt that States shouldhave the discretion to determine how to spend their availableFederal funds• States could continue to devote theseresources to baby doe programs exclusively, but would alsohave the flexibility to use their grants for medical neglectin general or other priorities.188- 12 -

OBSERVATIONSThe Federal baby doe amendments appear to have beensuccessful in focusing CPS attention on the needs of severelydisabled infants with life-threatening conditions. The CPSunits in 48 states, including 7 which did not apply forFiscal Year 1986 Baby Doe Grants, have established proceduresto respond to reports involving such infants. All proceduresinclude the provisions required in the lav for hospitalliaisons, prompt notification and legal interventionauthority.In addition, CPS units have generally fulfilled theirresponsibilities to have liaisons designated in hospitalswith NicUs or OBs, and to provide information and training tothese individuals on their role in reporting potential babydoe cases to CPS. The CPS units in some states have alsoplayed a role in encouraging affected hospitals to establishICRCs or ethics committees.It is not clear what impact the Federal legislation andincreased State responsibility have had on the incidence orhandling of baby doe reports. There has been no significantincrease in the volume of reports received after October1985, and most states reported that they handled casesessentially the same way even before the Federal law waspassed. Prior to the baby doe legislation, States usedexisting child abuse and neglect procedures to respond toreports of medical neglect, including baby doe reports* Suchcases were treated as emergencies, and medical expertise wassought as needed.In view of the heightened awareness and attention to babydoe, many States feel that the special Federal baby doe setasidefunding is no longer needed* They believe that statesshould have the discretion to use these funds for child abuseand neglect priorities identified at the State level,including baby doe if needed. In contrast, other States feelthat they would be unable to operate their baby doe programswithout the set-aside funding.- 13 -189

Appendix 3INFANT CARE REVIEW COMMITTEESUNDERTHE BABY DOE. PROGRAMRICHARD P. KUSSEROW SEPTEMBER 1987INSPECTOR GENERALOAI-03-87-00042[Executive Summary and Appendices omitted.]190

INTRODUCTIONThe term baby doe refers to a severely disabled infant with alife-threatening condition who is denied appropriate medicaltreatment. Two highly publicized court cases called.nationalattention to baby doe in the early 1980s, and led to Federallegislation to protect the rights of such infants.In the first case, an infant known as Baby Doe vas born withDown's syndrome and a surgically correctable blockage of theesophagus. The baby's parents and doctor agreed that surgeryshould not be performed and that food and water should bewithheld from him* The hospital sought a court order topermit surgery, but the court upheld the parents' decision,and the State supreme court refused to disturb the lowercourt's ruling. Baby Doe died before the case could be filedin the U.S. Supreme Court.The second case involved an infant known as Baby Jane Doe,who was born with multiple neural tube defects, includingspina bifida (an open lesion on the spine), microcephaly (anabnormally small*head), and hydrocephaly (an accumulation offluid on the brain)• The parents approved medical treatmentto reduce the chance of infection, but refused surgery toclose the spinal lesion and drain excess fluid from thebaby's brain. The parents' decision was later upheld by theState courts. It is not known what became of Baby Jane Doe.In March 1983, the Department of Health and Human Services(HHS) published an interim final rule stating that section504 of the Rehabilitation Act of 1973 applied to handicappedinfants and establishing a Federal hotline for reports offailure to feed and care for such infants. One month later,the interim final rule was struck down in U.S. DistrictCourt. The Department published revised propos~e£ regulationsin July 1983 and final regulations in January 1984. Thesefinal regulations were struck down in U.S. District Court inJune 1984.The two baby doe cases and the subsequent debate amongmedical, professional, pro-life and disabilities groupsregarding the ethics of treatment/nontreatment decisionsaffecting disabled newborns, including the role andresponsibilities of States and the Federal Government,culminated in passage of the 1984 amendments to the ChildAbuse Prevention and Treatment Act.The amendments required HHS to publish model guidelinesencouraging hospitals to establish Infant Car,? Reviewcommittees (ICRCs)• Model guidelines were published in April1989. The ICRCs are intended to educate hospital personneland families of severely disabled infants, recommend policies- 1 -191

and guidelines concerning the withholding of treatment, andreview cases involving such fnfants.The HHS model guidelines are advisory only. There is noFederal reguiremen£ fox Jiosfcitals to establish ICRCs or toadhere to any i> g p«""tL of the giiif** 1 *" 0^ Nevertheless, anational survey by the American Academy of Pediatrics (AAP)found that as of August 1986, about 52 percent of hospitalswith over l f 500 births annually or a neonatal intensive careunit (N1CU) were using committees to address ethicalquestions related to the care of severely disabled infants.An additional 8 percent were considering forcing such acommittee. The AAP study also found that the majority ofcommittees already established generally conformed to thestructure, procedures and functions outlined in the HHS modelguidelines (National Collaborative Survey of Infant CareReview Committees, AAP, March 1987}.The 1984 amendments also required State CPS units receivingformula grant .funds, under.the Act to deitrre baby doesituations as medical neglect, to establish procedures forresponding to reports involving such infants, and to haveliaisons designated in hospitals where babies are born ortreated to insure the immediate referral of potential babydoe cases to CPS.This inspection was initiated at the request of the SurgeonGeneral and the Administration for Children, Youth andFamilies, which administers the Act within HHS. The purposeof the inspection was to determine (1) how a group ofhospitals with responsibility for acute infant care arestructured and functioning in addressing potential baby doesituations, and (2) how States are carrying out their babydoe responsibilities*The inspection was carried out in two phases* jOne phaseconsisted of visits to ethics committees in 10"largehospitals in 8 major cities around the country. Seven werechildren's hospitals identified with assistance from theSurgeon General. A second phase involved a telephone surveyof CPS unite in all 50 States and the District of Colujobia,This report, entitled "Infant Care Review committees underthe Baby Doe Program, 11 presents the findings of our hospitalvisits. A companion report, entitled "survey of State BabyDoe Programs," describes the results of our survey of StateCPS agencies.- 2 -192

FINDINGSHOSPITAL ETHICS COMMITTEES ARE ESl^LISHED AND FUNCTIONIftgWe visited 10 hospitals in 8 major cities around the country.Selection was based in part on the fact that they were knownto have comaittees which review problematic cases. Thehospitals visited included seven children's hospitals, onelarge county hospital, one large general hospital and onemedical center affiliated with four other hospitals in thesane metropolitan area* The children's hospitals visitedhave NICUs. The other three hospitals have large maternitywards as well as NICUs.While committees have been established at all 10 hospitals,most are not ICRCs focusing exclusively on baby doe cases.Nine are ethics committees which review the full range ofproblematic cases encountered in the*hospital, including babydoe cases. One of these ethics committees has established anICRC as a subcommittee. The tenth hospital has a separateinfant bioethlcal review committee.In nine hospitals, committees were established andfunctioning prior to publication of the HHS model guidelines.Several have been in place for more than 10 years. Onehospital established its committee after the guidelines werepublished* Historically, this hospital had handled ethicaltreatment Issues on an ad hoc basis.Committee MembershipThe HHS model guidelines recommended that committees beestablished as vultidisciplinary teams with core members andadvisors or supplemental members. The suggested core membersinclude: practicing physician (pediatrician, neonatologistor pediatric surgeon), practicing nurse, social worker,hospital administrator, disability group representative andmember of the facility's medical staff who serves as thechairperson. A member of the clergy, an attorney or judge,and other medical specialties were suggested as advisors orsupplemental members.We found that while committee membership varies, all includepediatricians and/or neonatologists, social workers, nursesand representatives from hospital administration. Legalexpertise is always available, although not necessarily in anofficial membership capacity. Host committees also includemembers of the clergy, ethicists, disability grouprepresentatives and patient representatives or advocates.The baby doe amendments require State CPS units to haveliaisons designated in hospitals where babies are born or- 3 -193

treated to assure the prompt ^reporting of baby doe cases toCPS. The xaodel guidelines suggest that the' hospital liaisonbe a committee member. Four committees reported that thehospital liaison is a member. Three of the remainingcommittees are in States which dft not participate in the BabyDoe program and do not require, the appointment of liO-fcpitaJ.liaisons. Committees at all hospitals visited reported theyare Tamiliar with CPS professional reporting requirements forall instances of child abuse and neglect, including, baby doe.They feel that cases will be reported to CPS promptly whetheror not an officially designated liaison sits on thecommittee.Meeting ScheduleThe HHS model guidelines suggest that committees meetregularly and also as needed to review specific cases.Committees at all hospitals visited meet as needed to reviewproblematic cases prospectively. Eight committees also meeton a regular basis. Five meet monthly, two meet quarterlyand one meets twice a month. Host meetings do not deal withbaby doe issues or individual baby doe cases, but are devotedto policy development, education, or review of problematiccases involving older patients.- 4 -194

COMMITTEE RESPONSIBILITIES VARYThe HHS model guidelines suggest three major functions forhospital ICRCS: (1) to offer counsel and review inindividual cases, (2) to recommend institutional policies andguidelines, and (3) to educate hospital personnel andfamilies. The committees in our cample vary, both ip theextent to which they perform these functions and in theimportance attached to then.1. Reviewing Individual CasesProspective cast review is don* by all committeesvisited, and is considered their most important function.Committee recommendations on individual cases areadvisory only, rather than binding on the involvedparties. Committee ©embers pointed out that differencesof opinion between treating physicians, parents and thecommittee can usually be resolved through an informaldiscussion process, it this is not possible, thehospital refers the case to CPS for investigation andpossible legal action.One committee indicated that it also reviews selectedcases retrospectively, and a second plans to start soon.Several committees mentioned that patient deaths arereviewed retrospectively by other committees as part ofthe hospital's ongoing quality assurance process.2. Recommending Institutional PoliciesAll committees visited recognized that the development ofinstitutional policies, ranging from the types of caseswhich should be considered by the committee to guidelinesfor addressing particular types of cases, as anappropriate function for the ethics committee. Theextent to which such policies have actually beendeveloped varies from hospital to hospital. While mostcommittees have adopted at least rudimentary writtenpolicies, two committees indicated that they are justbeginning to address their policy developmentresponsibilities.Several respondents noted that the ethics of medicaltreatment decisions is constantly being rethought,reviewed and revised. This is due in part to continuingadvances in medical technology. We were £&14 by oneneonatologist, for example, that recent advances now.enable 80 percent of infants weighing as little a* tvsipounds ftJt fclrtii to &UX3E£V& 4 This was not possible priorto the early 1980s. Low birth weight infants are oftenborn with severe medical problems, some of which mayresult in permanent disabilities despite vigorous medicalintervention.- 5 -195

3. Educating Staff and FamiliesThree committees mentioned they hold regular educationalsessions for Interested hospital staff where caseinformation is shared and the ethics of particulartreatment options and decisions are discussed. Thesesessions cover the full range of seriously ill patientstreated at the hospital, and are not United to potentialbaby doe situations.Committees at all 10 hospitals indicated that theirexistence and role as advisor on problematic cases areveil known to hospital staff, particularly those mostlikely to come into contact with disabled infants.Neonatologists, NXCU nurses, hospital social workers, andmembers of the administrative staff know of the ethicscommittees and their case review role* Because of thisgeneral knowledge, educating hospital personnel is notconsidered a major need by ethics committees at thehospitals we visited.Educating families of seriously ill infants is &&en 4sthe responsibility of other hospital staff, usually thepatient representative or Yocial vorfc staJLJ t rather thanthe ethics committee. Typical activities of these staffare to inform families of the existence and functions ofthe ethics committee, assist'families in requestingethics committee review of their infant's medical carewhen appropriate, and provide Information and assistancein obtaining needed support services in the communityfollowing patient discharge.196

BASIC CASE REVIEW CRITERIA ARE COMPARABLE1. Prospective Case ReviewThe HHS model guidelines suggest that emergency ICRCmeetings be called to review cases prospectlvely underthe following conditions: *ooodisagreement between family and physician about theproper course of treatment;disagreement between hospital staff members; andwhen a preliminary decision has been made towithhold or withdraw life-sustaining treatment.All committees indicated they review cases involvingdisagreement between principal parties in the case(treating physician, parents, other hospital staff)#They also review cases where the treating physician isuncertain about the proper course of treatment. In suchinstances, the committees serve as a consultative body toadvise the treating physician on the most appropriatecourse of treatment.Committee practices differ in handling cases where apreliminary decision has been made to withhold orwithdraw life-sustaining treatment, One committeerequires review of any case in which cessation of lifesustaining treatment is proposed*, unless the infant isclearly terminal and continued medical intervention wouldserve no beneficial purpose In these Instances, a smartsubcommittee reviews the case to assure that reasonablemedical guidelines are being followed. In a secondhospital, if the principal physician recommends cessationof treatment, two colleagues must agree before treatmentcan be withheld. Eight committees reported that they doreview cases brought to their attention involving thepossible withholding or withdrawal of life-sustainingtreatment Prospective review of such cases is not,however, mandatory.2. Retrospective Case ReviewThe HHS model guidelines recommend that ICRCs reviewrecords retrospectively in cases involving thewithholding or termination of medical treatment, exceptfor cases which were reviewed prospectively. Findingswhich deviate from hospital policy should be reported toappropriate hospital personnel and hospital policiesrevised, if necessary.- 7 -197

One of the 10 ethics committees visited reviews casesretrospectively on a selective basis. The hospital itselfconducts monthly mortality conferences to review everypatient death from a medical point of view. If the death isbased on withholding or withdrawal of medical treatment, itis referred to the ethics committee for further review.Review results are sometimes used for educational purposeswithin the hospital*A second ethics committee indicated that it plans to beginretrospective case review in the near future. Severalcommittees mentioned that some cases are reviewedretrospectively by other committees as part of ongoingquality assurance activities within their respectivehospitals.• 8 -198

COMMITTEE CASE REVIEW EXPERIENCEAmong them, the hospital committees visited estimate theyhave reviewed between 20 and 36 potential baby doe casessince the Federal regulations went into effect in October1985. post committees do not keep individual case recordsand were unable to provide precise information on the numbersof cases reviewed.Advising physicians and families on the most appropriatecourse of treatment for severely disabled infants with lifethreateningconditions is a responsibility which is takenseriously by hospital ethics committees. Members are mindfulof their responsibilities and strive to apply the baby doelegal requirements while considering the medical, ethical andmoral issues associated with each individual situation.Parental consent is required in order for a hospital toperform surgery or withhold or withdraw treatment.Committees Indicated that parents of some severely disabledinfants initially refuse consent for surgery or lifesustainingtreatment, while others demand that treatment becontinued even when the treating physicians and ethicscommittees agree that continued treatment would be futile andpainful, and would merely prolong the infant's dyingCommittee recommendations are advisory only rather thanbinding on the affected parties. Committee members noted,however, that most situations involving initial differencesof opinion have been resolved in accordance with baby doerequirements, and few cases have been reported to CPS.Eight hospitals have not reported any cases to CPS* Theyindicated that all cases reviewed have been resolvedinformally. If a case could not be resolved within thehospital setting, they indicated that they would seek CPSintervention.Two hospitals have made three reports. In these three cases,parents refused consent for life-saving treatment or surgeryrecommended by the hospital. CPS Intervention led tocontinuation of treatment. Two of the affected infants wereliving at the time or our fieldwork.While hospital committees declined to discuss the details ofindividual cases reviewed, several respondents commentedgenerally on the types of cases most often referred forreview:oThe types of cases most frequently reviewed by committeesinvolve low birthweight (less than 2 pounds), extensiveinternal bleeding associated with premature birth, and- 9 -199

asphyxiation during the birth process. These infantshave little chance for survival even with vigorous, andoften painful, medical intervention.Committees also review cases involving multiple andsevere birth defects, including hydrocephaly (fluid onthe brain), anencephaly (most of the brain missing),microcephaly or macrocephaly (abnormally small or largehead), deformities of the face and extremities, blockedesophagus and little or no large intestine. Suchconditions usually occur in some combination and arefrequently associated with severe or profound mentalretardation. Some conditions cannot be corrected. Whileit is surgically possible to open a blocked esophagus,for example, there it no treatment for anencephaly.Committee members indicated that the long-term prognosisfor infants born with combinations of conditions such asthose described above is uncertain*The two conditions which gave rise to the baby doeamendments, Down's syndrome and spina bifida, aregenerally not problematic for the hospitals visited interms of whether or not to. provide treatment, committeemembers indicated that infants with these two diagnoseshave been routinely treated i* their hospitals for 15-20years.Even in an instance when an infant Is imminently dyingand the decision is made to withdraw or withholdtreatment, the infant continues to receive nutrition andhydratlon and is made as comfortable as possible duringthe dying process.- 10 -200

DESCRIPTION OF AN ETHICS COMMITTEEThis section describes the structure and functions of aseries of interlocking Infant Bioethical Review Comitteesestablished in February 1984 in four affiliated hospitalswhich make up the Albert Einstein College of Medicine andthe Montefiore Medical Center in the Bronx, New York. Thisgroup of hospitals was visited as part of the inspection.Its committees are generally structured and functioning inconformance with the HHS model guidelines, and may serve as auseful reference for hospitals considering the establishmentof similar committees.Since four institutions are involved, a decision was made tohave separate but interlocking committees. A core group orexperts serve on all four committees, and additional membershave been appointed to each hospital's committee. The coregroup includes: a neonatologist who chairs all fourcommittees; three other pediatricians with expertise inneonatology, disabilities and rehabilitative medicine; alawyer working in a medical setting; and two bioethicists.Each institution has appointed nursing, social work,administrative and community representatives for its owncommittee* An attorney in one hospital's general counsel'soffice serves as a nonvoting consultant to each committee.The core group and all .members., from the four hospitals meetmonthly to develop qeneral sidelines and procedures andreview cases retrospectively. Ad hoc consultants may attendmeetings upon invitation of the chairman, but may not vote.Minutes are kept. -Many decisions are reached throuqh.consensus* When,* vote is required, however a two thirdsmajority of members present is required for passage.The committees have agreed to a set of principles which serveas the basis for making decisions involving critically illinfants. These, principles recognize the intrinsic worth ofthe infant which entitle it to all appropriate caredetermined to be in Its best interests^ irrespective of itsdisability or handicap. Caregivers are obligated to providesuch care. The principles recognize that it is sometimesuncertain what medical treatment is in the best interests ofa particular infant. Parents are responsible for makingdecisions for their infant, unless they choose a course ofaction that is clearly against the Infants best Interests.Withholding of withdrawing treatment may be considered whenit is deemed futile and would merely prolong the dyingprocess or when the medical treatment Imposes a burden whichlacks compensating benefits for the infant. If such adecision is made, the infant and the family are cared for ina supportive and dignified manner.The committees review cases involving infants up to 2 yearsof age. Cases are reviewed prospectively as well asretrospectively.- ll -201

Prospective Review -- Each committee convenes on an emergencybasis at the request of the Chairman for prospective casereview. Mandatory review is required when;'oowithdrawal of life-sustaining treatment is being proposedfor a patient who is not imminently dying; andthere is disagreement between or among health careproviders and families concerning withdrawing orwithholding life-sustaining treatment*Parents are informed when their case is being reviewed, butparental consent for review is not required. Caregivers fparents, clergy and other relevant parties are encouraged tomeet with. the committee or attend Portions. of the meetinq>They may not be present during final deliberations andvoting. Members with direct responsibility for the infant'sore do not voteCommittee recommendations are shared with the involvedparties immediately after the meeting. If the parents andtreating physician agree with the committee's recommendation,no further committee action is required. If, after extensivediscussion differences of opinion cannot be resolved thecommittee recommends that the Hospital see* intervention bythe Child Protective Service Agency for action to permitappropriate treatment or "the withdrawal or withholding oflife Support.Full committee review is not required for cases in which nofurther treatment is being considered because the infant isclearly terminal and continued intervention would serve nobeneficial purpose* However, a small subcommittee doesreview such cases to insure that they adhere to reasonablemedical guidelines and that the family has been properlyconsulted. These cases are reviewed retrospectively at thenext monthly meeting.retrospective Review — The full committee reviews deathsresulting from the withholding or withdrawing of medicaltreatment. Retrospective reviews are held for informationand education of the committee, as well as to generateguidelines which will be helpful in reviewing future cases.Note;This description is based on the following references:1. Fleischman, Alan R., M.D., "Bioethical Review Committeesin Perinatology, 11 Clinics in Perinatology. Volume 14, No.2, June 1987.2. Fleischman, Alan R., M.D., "An Infant Bioethical ReviewCommittee in an Urban Medical Center," Hastings CenterReport. June 1986.

ETHICS COMMITTEE COMMENTS_ON. IMPACT OF BABY DOE PROGRAMWe asked hospital ethics committees to comment upon theimpact of the baby doe legislation and the effectiveness ofthe current system. The sample of comments provided below,mostly from physician committee members, illustrate the rangeof opinions expressed* ,oo"The baby doe legislation focused our attention on thisissue. We are now more aware of ethics committees andtheir functions, as well as the requirement to reportsuspected cases to CPS.""While Federal involvement has raised consciousness aboutbaby doe, these problems involve medical and ethicalissues which do not belong in CPS. What is needed isIncreased sharing of information among involved parties,not regulation by CPS. I find it philosophically,emotionally and professionally repugnant to involve CPSin the decisionmaking process. 1 *o "The current system is effective. CPS provides thesupport and legal backing which enable us to provide themost appropriate medical care. The Federal law hasheightened our awareness of baby doe issues* 11oooooo"When in doubt, ethics committees and physicians err inthe direction of providing treatment, even when the• infant's chances of survival are extremely slim.""Fear of malpractice lawsuits has caused many hospitalsand physicians to continue treatment for infants who havevirtually no chance for survival. The treatment is oftenpainful and only prolongs the infant's dying. 11"Severely disabled infants born in community andmaternity hospitals are routinely transferred tochildren's hospitals, even when the infant is clearlydying* The birth hospitals fear being accused of failingto do everything possible to save the infant.""Medical technology say be doing ft disservice by delayinga death that is imminent. Respirators can now keepnonviable babies alive temporarily, only delaying theirinevitable deaths for a month or two.""The real unmet need is for day care facilities and othersupportive services specifically designed for thesebabies who may not receive the special care and attentionthey require once they leave the hospital.""It is morally repugnant to give treatment that ispainful to the child and clearly has no useful purpose."- 13 -203

OBSERVATIONSThe inspection found that while nearly all hospitals visitedhad established ethics committees prior to passage of thebaby doe legislation, most respondents feel that thelegislation and model guidelines have helped to focus theirattention on potential baby doe situations. While the HHSmodel guidelines are advisory rather than mandatory, themajority of hospitals with large maternity wards and/or Nicusdo have ethics committees which review and advise on neonatalcases, including the treatment of severely disabled infants.All 10 of the committees visited during the inspectionreport they are structured and functioning substantially inconformanee with the HHS model guidelines.All committees visited recognize their responsibilities todevelop hospital policies addressing the treatment ofseverely disabled infants and to review individual cases on aprospective basis. While specific case review criteria varysomewhat, all committees are available to meet on anemergency basis to consider and recommend the mostappropriate course of action in treating these infants.Applying the baby doe provisions in the law, committees areusually able to arrive at consensus regarding the mostappropriate course of treatment. ' Most disagreements areresolved informally, but when necessary, hospitals do nothesitate to seek CPS intervention.Disagreement between the involved parties appears to be themajor criterion for committee review; while committees doreview cases brought to their attention which involve thepossible withholding or withdrawal of life-sustainingtreatment, prospective review of such cases is not mandatoryin 8 of the 10 hospitals visited.The hospitals visited do not believe there is a need forincreased publicity or attention to baby doe issues at theFederal level. However, several respondents mentioned acontinuing unmet need for specialized day care, adoptionassistance and related community-based supportive services tomeet the needs of these special infants following hospitaldischarge. The Department may wish to consider alternativemeans to increase the availability of such services at thelocal level.- 14 -204

Appendix 4AmericanAcademy ofPediatricsMay 1, 1989Department of GovernmentLlaltonAmerican Academy ofPediatrics1331 Pennsylvania Avenue, N.WSuite 721 NorthWashington. O.C. 20004-1703202/682-7460800/336-5475FAX 202/662-7471PresidentDonald W. Schiff. M.D.Vice PresidentBlrt Harvey. M.DPeet PresidentRichard M. Narkewtez, M.O.Executive DirectorJames E. Strain, M.D.Executive BoardMaurice E. Keenan, M.D.West Newton, MassachusettsDavid Annurulato, M.D.East Meadow, New YorkAnthony De Spirito. M.D.Interiaken, New JerseyRobert Grayeon, M.D.Surfside. FloridaLeonard P. Rome, M.D.Shaker Heights, OhioKenneth O. Johnson, M.D.Milwaukee, WisconsinBetty A. Lowe. M.D.Little Rock, ArkansasGeorge D. Comercl, M.D.Tucson, ArizonaMartin Gershman, M.D.San Francisco, CaliforniaWilliam B. AllenCommission on Civil Rights1121 Vermont Avenue, N.W.Room 800Washington, D.C. 20425Dear Mr. Allen:The AAP regrets the process and the substance of theCommission report. There was very little opportunityfor groups and/or individuals to explain the currentdecision-making process in intensive care newbornnurseries. The Commission's process did not allow fora thorough hearing of the issues.The report takes an extreme position rather than abalanced view of the complex issues involved in caringfor critically ill newborns. Its.tone throughout isthat of a conclusion in search of arguments ratherthan a reasoned response to the difficult questionsinvolved.The report dwells on events that occured in the decadeprior to the historic compromise which culminated inthe 1984 amendments to the federal Child Abuse Act.It describes case studies and attitudes from anearlier era as if they had some relationship to thepresent. A number of groups using a variety ofmonitoring mechanisms have observed that infants withDown Syndrome, spina bifida and other anomalies arenow receiving appropriate care.The Commission seriously understates the importance ofthe dramatic growth of hospital ethics committees(also called infant care review committees) since1985. This transformation in the way decisions aremade occurred on a voluntary basis with no federal orstate requirements. They were a result of theconviction of the Academy and other groups thatmulti-disciplinary review would facilitate decisionmaking in difficult cases. Those who predicted thathospitals and physicians would not form suchcommittees, or that committees would not becomeinvolved in decisions, or that committees would acceptdecisions without discussion or dissent were wrong.Rather than acknowledge this success, the Commissionsimply ignores it.205

May 1, 1989Page 2The Commission advocates an extreme view of the Child AbuseAmendments and related regulations, one that would requiremaintenance of biologic existence in virtually all infantsother than the comatose and the dying. It fails toacknowledge the carefully crafted language which reflected arejection of that view by many groups and individuals whocare for and about infants. It resurrects a position whichwould not take into account an infant's interests, nor allowany person or group or court to make any judgements about thecare of a sick or suffering infant. This view is not onlycontrary to the spirit and language of the law andregulations, but contrary to a clear trend in American lawand opinion which demands that handicapped and critically illinfants, like all patients, be entitled to have decisionsregarding life-sustaining treatment made in their bestinterest.The Commission advocates a renewal of intrusion of federalauthority into complex decision making at the bedside. Thisview is contrary to federal appellate and US Supreme Courtopinion, as well as public opinion. It resurrects anapproach which was implemented in the infamous "Baby Doehotline" and "Baby Doe squads" that failed to achieve itsobjective. It was an approach which failed to identifyserious errors at a time when they were common, and whichfalsely labelled excellent clinical care as neglect, drivinginfants and parents fearfully out of intensive care units toavoid onrushing and intrusive federal authorities.Furthermore, the most recent Inspector General's survey ofBaby Doe programs release just last year showed that theproblem of undertreatment is being appropriately addressed.In commenting on that report, Surgeon General Koop said that,"It is reassuring to learn...that each state has accepted itsresponsibility and fully implemented the 1984 amendments tothe Child Abuse Prevention and Treatment Act." Dr. Koop wenton to say that the report indicates that the "guidelines andprocedures are working appropriately."All evidence points to the fact that the law is working.The Academy continues to support the use of infant carereview committees as an important mechanism to assistphysicians and parent in making these difficult decisions.The Academy also continues to educate and train ourpediatrician members about the use of committees and othermethods of aiding children with disabilities and theirparents.Sincerely,Donald W. Schiff,President206

Statement of Commissioner Robert A.DestroIt should not have been this difficult. The point,after all, is a fairly simple one: that it is both illegaland immoral to deny necessary medical care to anychild, especially one with a disability. That it hastaken the Commission nearly 5 years to complete itsreport and recommendations bears witness to theformidable political and practical hurdles which hadto be overcome. But overcome they were, and as theChairman of the subcommittee responsible for producingand editing the several drafts of the reportand recommendations, I am both pleased and gratefulto the Commission and its staff for the hard work,late nights, and commitment to seeing this projectthrough to completion.* I write separately tosummarize some of the practical and political issuesthe Commission had to overcome in the course of itsdeliberations, and to suggest a wider context inwhich this report and its recommendations should beviewed.Defining the Problem: Discrimination,Medical Ethics and Family PrivacyThe primary conceptual and political problemfaced by the Commission has been to distinguishamong those issues which are correctly within therealm of antidiscrimination and child neglect laws,those which are properly matters of medical judgmentor ethics, and those which are matters ofparental choice. Though the dividing line which* Special thanks go to my friend and colleague CommissionerEsther Gonzales-Arroyo Buckley, for her work as the othermember of the subcommittee, and to my former confidentialassistant, Deborah Lawrence (now of Fort Wayne, Indiana),whose hard work and persistence were largely responsible for thecompletion of the hearing record. It is also appropriate torecognize the contribution to the finished product made by theseparates these spheres is far from clear, it is quitereal; and the need to make careful distinctions iscritical.It goes without saying, for example, that neitherchild abuse and neglect nor discrimination on thebasis of disability are "private" matters. That aparent's decision to neglect a child's medical needs iseither influenced by or acquiesced in by a physicianlikewise does not transmute the issue of neglect intoone of medical judgment, ethics, or confidentiality.The proper (and limited) concern of law is theprevention and punishment of antisocial activity.Medical neglect (that is, the denial of medicallyindicated treatment) of the physically or mentallydisabled is, by definition, antisocial, and the properconcern of the law.The question addressed in this report is simplystated: is it permissible under either State or Federallaw to deny necessary medical care to any person onthe grounds that a disability or other immutablecharacteristic such as race, sex or ethnicity makesthat person an unfit subject for treatment? Phrasedanother way, the question is: whether medicallyindicated (i.e. necessary) treatment for a givencondition becomes any less "necessary" when thepatient has a disability?That this is the issue cannot be doubted. Thephysician who treated Bloomington Indiana's BabyCommission's late Chairman, and the original chair of thesubcommittee, Clarence M. Pendleton, Jr. Though Penny and Ihad many a late-night disagreement over the what we might findin the course of additional hearings, he supported additionalfactfinding. In addition, he also resisted internal and externalpolitical attempts to kill the project outright.207

Doe 1 admitted on the record of the Commission'sJune 1986 hearing that he had told the baby's parentsthat "[they] must realize that if the child has thesurgery, and if the surgery is successful, that thischild will still be a Down's syndrome child with allthat that implies." Since, in his view, "the parentswere pretty well-acquainted and had a good knowledgeof what this implied[, he] said to them [that]'There is the alternative of doing nothing, in whichcase the child will survive a few days and will die.'" 2The baby was not dead, he was not dying, and theindicated surgery was neither futile nor medicallycontraindicated. The "problem" was that the littleboy had Downs' Syndrome. Had he been "normal"(i.e. not disabled) not a court in this country wouldhave stood by as he died of starvation and dehydration.Nonetheless, they did—up to and including theSupreme Courts of Indiana and the United States.Such attitudes and behaviors cannot be toleratedin a civilized society. They are a cancer growing atits very heart. It makes no difference whether thedecision is that of the parents, a physician, an"ethicist," an ethics committee, a judge, or acombination of all of them; for whatever theeuphemism chosen to describe what is going on inthe limited category of cases dealt with in thisreport, the real names of the practices are eugenicdiscrimination and euthanasia.To subsume the question entirely into the realm ofmedical ethics, as the statement of Chairman WilliamB. Allen 3 does, is to unwittingly fall into thetrap suggested by Leo Alexander, an observer at thetrials of the Nazi war criminals at Nuremburg, whowrote in 1949 that:The beginnings [of the Nazi terror] at first were merely asubtle shift in emphasis in the basic attitude of thephysicians. It started with the acceptance of the attitude,basic in the euthanasia movement, that there is such athing as life not worthy to be lived. This attitude in itsearly stages concerned itself merely with the severely andchronically sick. Gradually the sphere of those to beincluded in this category was enlarged to encompass thesocially unproductive, the ideologically unwanted, the1In re Infant Doe, No. GU82O4-OO (Cir. Ct. Monroe County,Ind. Apr. 12, 1982), ajfd sub nom. State of Indiana on Relation ofInfant Doe by Guardian, No. 482 S139 (Ind. S. Ct, May 27, 1982),No. 482 S.140 (Ind. S. Ct. Apr. 26, 1983), cert, denied, 464 U.S.961 (1983).aHearing Before the United States Commission on Civil Rights:Protection of Handicapped Newborns 224-25, 228-29 (1986) (vol.II).sChairman William B. Allen, "A Dissenting View on the ReportMedical Discrimination Against Children with Disabilities."208racially unwanted and finally all non-Germans. But it isimportant to realize that the infinitely small wedged-inlever from which this entire trend of mind received itsimpetus was the attitude toward the nonrehabilitable sick.It is, therefore, this subtle shift in attitude that one mustthoroughly investigate.*Robert Jay Lifton's 1986 book, The Nazi Doctors, 5described the process decried by Alexander as thegradual "medicalization" of eugenic killing andneglect. The record and the literature reviewed inthis report confirm that the same phenomenon is atwork here.This is why many, if not most, of the argumentsraised in opposition to this report are either illinformedor disingenuous. Chairman Allen, forexample, argued during the final debate on thereport that it lacks "numbers [concerning] what isactually transpiring in the country. That is a relativelysimple calculation to effectuate." 6 Given thedifficulty of the legal, medical, and ethical issues, aswell as the potentially great legal and financial risksassociated with reporting behavior which is arguablyillegal under state and federal law, it isincomprehensible that anyone knowledgeable on thesubject could allege that the incidence of discriminatorydenial of treatment "is a relatively simplecalculation to effectuate." The "hard" evidence is allto the contrary.When the government sought to encourage reportingby posting an informational notice in hospitalsfor the benefit of families and medical personnelsimilar to those required by labor and other civilrights laws, the courts enjoined the requirement.Medical personnel have been fired or disciplined forreporting denial of treatment cases to child welfarepersonnel. The Office for Civil Rights of theDepartment of Health and Human Services wasopposed to investigating alleged cases of medicalcare neglect of infants with disabilities. The investigatoryardor of the Civil Rights Division of theDepartment of Justice cooled noticeably after thegovernment lost the Bowen v. American Hospital* Alexander, Medical Science Under Dictatorship, 241 New Eng.J. Med. 39, 41 & n.17 (1949) (quoting J. Bernal, The SocialFunction of Science 44 (6th ed. 1946)).5Lifton, The Nazi Doctors: Medical Killing and the Psychologyof Genocide (1986).' United States Commission on Civil Rights, Transcript ofMeeting of Jan. 9, 1989 at 49 (remarks of Chairman Allen).

Association 7 case, even though the majority relied onalleged defects in the investigatory record to strikethe so-called "Baby Doe" rules.Thus, it is not surprising that the Commission'sSpecific Findings Three, Four and Five Regardingthe Child Abuse Amendments of 1984 raise seriousquestions concerning the legitimacy of internal selfregulationby hospital ethics committees as well asthe effectiveness of past and future oversight by theOffice for Civil Rights of the Department of Healthand Human Services. Discrimination against thedisabled in the medical setting has been so thoroughly"medicalized" by physicians and ethicists, and"privatized" by courts and commentators that theChairman's argument that the number of cases "is arelatively simple calculation to effectuate" cannot betaken seriously.In fact, the only real way to get the "numbers" isretrospectively: after the treatment has been denied.Specific Recommendation Eight Regarding theChild Abuse Amendments of 1984 places the Commissionon record as urging "retrospective reviewsof the medical records of those with disabilities whodie in [a] State" by the local Protection andAdvocacy [P&A] System.In my view, however, the focus on "how many"such cases is simply wrong; for it ignores theobvious. Whenever noted physicians, ethicists, andresearchers publish articles in major academic andprofessional journals reporting discriminatory behavioragainst disabled persons as if there werenothing wrong with it, there are at least two seriousproblems which make the number of cases almostbeside the point.First, the boldness with which the discriminationis reported conveys the attitude that those involvedsee no problem with their behavior. Second, andmore relevant to the Commission's task, the fact thatcourts have, on occasion and in the face of greatpublic scrutiny, authorized admitted medical neglectof persons with disabilities 8 means that discriminato-' 476 U.S. 610 (1986).8See, eg., Destro & Moeller, Necessary Care for the RetardedChild: The Case of Phillip Becker, 4 Human Life Rev. 81 (1980)quoting Transcript of Record, In re Phillip B., A Minor, No.66103 (Super. Ct, Santa Clara County, Cal. Apr. 27, 1978), ajfd,92 Cal. App. 3d 796, 156 Cal. Rptr. 48 (1979), cert denied, 445U.S. 749 (1980).9Though Chairman Allen's statement recounts that he votedagainst the adoption of this report, the record clearly shows thathe abstained, thus acquiescing in the will of the majority. UnitedStates Commission on Civil Rights, Transcript of Meeting of Jan.9, 1989 at 50 (remarks of Chairman Allen noting that he wouldry attitudes about the "quality" of their lives areshared by those whose obligation it is to enforce ourcivil rights laws.Complicating the matter further, some courts andlegal commentators have argued that, due to theirdifficulty and intensely personal nature of denial oftreatment cases, they are (or should be) consideredas matters within the zone of constitutionally protectedfamily privacy. To "privatize" the issue is, ofcourse, to argue that it is not only permissible, butalso outside the legitimate purview of the law. In myview it is equally wrong to take this approach as it isto accept the arguments of those who would"medicalize" the problem. The result is the same:only the method is different. The Commission quiterightly, and without recorded dissent, rejectedboth. 9Placing the Report in ContextThe important facts contained in most reports,including his one, are often the most obvious ones.Though the Commission's report makes it quite clearthat discriminatory denial of necessary treatment tonewborns with disabilities was the subject of thisstudy; those opposed to its conclusions have focusedinstead on overtreatment of patients for whom itmay be either unless or harmful, especially neonates(very premature newborn infants). 10 Characterizedin this manner, the problem becomes technologygone wild, not discrimination. Ethicists and medicalexperts can then safely be cast as the victims of anill-informed, narrow-minded "life-at-any-cost" ethic(termed "vitalism") which does not take into accountthe dignity of the individual forced to live alife in which there is no hope.It is a powerful—and dangerously irrelevant—argument. "Overtreatment" of anyone is, by definition,both "unnecessary" and unethical. Physiciansand ethicists cannot be permitted to hide behind thefamily when the issue is overtreatment, any morethan they should be able to do so when discriminaprobablyabstain); id. at 58 ("That makes 7 votes aye, no votesagainst, and 1 abstention.") (quoting Chairman Allen's count ofthe Commissioners' votes). That Chairman Allen's approach tothe issue of medical care discrimination is contrary to that of theCommission is clear from his written statement: he rejects theCommission's conclusions and minimizes its factual findings. Whyhe simply did not vote "no" remains a mystery.10See comments of H. Tristram Engelhardt, Jr., Ph.D., M.D.,appended to the statement of Chairman Allen. See also, HearingBefore the United States Commission on Civil Rights: Protection ofHandicapped Newborns 79-112, 164-95 (1985) (vol. I).209

tion is the basis for failure to treat. Overtreatmentwas never the focus of this study, notwithstandingthe attempt to make it so. The focus is—and shouldalways remain—on the legitimacy of individual andcollective decision-making. If the decision is alegitimate medical one, it is not for the law tosecond-guess. If it is based on social or eugenicfactors, we have entered the realm of discrimination.And that, of course, is the crux of this debate.Were a physician, judge or ethicist to so much assuggest, orally or in print, that race or sex-baseddenial of medically indicated treatment might bejustifiable for any reason, the public outcry forFederal, State, local (and, in some quarters, Divine)oversight, investigation and intervention would beheard round the world.Yet there is a difference when the object ofdiscrimination has a physical or mental disability.Noted physicians and medical centers have advertisedtheir discriminatory attitudes and practices,and civil libertarians who should know better rushto defend the ability (some would say "the right") toengage in such discrimination. There is somethingseriously wrong—morally and legally—when physiciansand ethicists concoct "quality of life" formulasso that they might confer a scientific patina on whatis essentially medical discrimination (or worse).How many bodies does one need to count as "proofwhen those involved admit to discrimination basedon non-medical factors? This is the greater context11Center for Health Ethics and Policy, Graduate School ofPublic Affairs, University of Colorado at Denver, Withholdingand Withdrawing Life-Sustaining Treatment: A Survey of Opinionsand Experiences of Colorado Physicians (May 1988) at 16[hereafter Colorado Survey]. The center recommended that theGovernor should appoint a commission to evaluate, among otherthings, whether the substantial number of physicians holdingthese views represent "changing community mores" and urgedreevaluation of present Colorado law forbidding active euthanasiato determine whether it is consistent with "the perceptions ofright and wrong" of the people of the State. Id. at 21." "Euthanasia Law Fails to Qualify for Ballot," NEXIS PRNewswire, May 10, 1988 (Hemlock Society news release).13 U.P.I., "Right-to-Die Group Targets Florida in Ballot Drive,"NEXIS, Aug. 1, 1988 (noting Hemlock Society plans to seekassisted suicide initiative in Florida, California, Oregon, andWashington).14In Gilbert v. State, 487 So.2d 1185, 1190-91 (Fla. App., 4thDist, 1986), a Florida court was recently asked (but refused) torule that intent to commit euthanasia was a defense to a charge ofpremeditated murder. The offense: the convicted murderer hadfired two bullets into the brain of his wife, who had themisfortune of being afflicted with osteoporosis and Alzhiemer'sdisease. Roswell Gilbert's case was recently the subject of amade-for-TV movie.15G.T. van der Werf, Huisarts en euthanasie, 43 MedischContact 1389 (1986) and personal communication of P. Admiraal,in which this report should be read. The UnitedStates is at an ethical crossroads. A recent survey of2,218 Colorado physicians concluded that 60 percentof all doctors have attended patients for whomthey believe active euthanasia to be justifiable if itwere legal, and 58.9 percent of these physicians"indicated that they would have personally beenwilling to administer a lethal drug if such measureswere allowed by law." 11 California voters wereasked, and refused by a wide margin, to approve aballot initiative which would legalize "death assistance"(including lethal injections under certaincircumstances), 12 and similar initiatives are plannedfor Florida, California, Oregon, and Washington in1990,13 j o assume that the first candidates for such"assistance" are not going to be the disabled, theincompetent, and the elderly is naive. 14Other countries have already made their choice. Ithas been reported that some doctors in the Netherlandsperform between 5,000 and 10,000 cases ofdirect euthanasia per year, 15 protected by courtdecrees which allow it when a patient makes aninformed request. 16 The March 30, 1989, issue of theNew England Journal of Medicine contains a bothplea for the "wide and open discussion" of physician-assistedsuicide, and a sympathetic, yet cautious,treatment of "the role that euthanasia mayhave in the treatment of the terminally or hopelesslyill patient." 17cited in S. Wanzer, D. Federman, S.J. Adelstein, C. Cassel, E.Cassem, R. Cranford, E. Hook, B. Lo, C. Moertel, P. Safar, A.Stone, & J. van Eys, The Physician's Responsibility TowardHopelessly III Patients, 320 New England J. Med., 844, 848 & n.28.(hereafter, S. Wanzer et al.).18G.E. Pence, Ph.D, Do Not Go Slowly into that Dark Night-Mercy Killing in Holland, 84 Am. J. Med. 139 (1988) (estimatingthat, as of late 1987, between 5,000 and 8,000 patients have beenkilled by physicians in the Netherlands). A summary of thesituation in the Netherlands, France, Denmark, the FederalRepublic of Germany, and Sweden is contained in BritishMedical Association, Euthanasia: Report of the Working Party toReview the British Medical Association's Guidance on Euthanasia,at 49-52. With respect to the Dutch, paragraph 210 of thereport concludes that "[i]t therefore seems that, although certainmembers of Dutch society are against active termination of lifefor cogent reasons, there is a widespread use of active terminationof life, which is motivated by the highest humanitarian ideals butnot all of which is reported." The BMA's position on the topic ofeuthanasia was unequivocal: "The active intervention by anybodyto terminate another person's lie should remain illegal. Neitherdoctors nor any other occupational group should be placed in acategory which lessens their responsibility for their actions." Id.,Conclusion 4, at 67.17S. Wanzer et al., The Physician's Responsibility TowardHopelessly III Patients, 320 New Eng. J. Med., 844, 848-49 (notingthe moral objections of two of the authors J.v.E. and E.H.C.).210

Those who need evidence of the growing attitudethat death itself is a "treatment" for those whoselives are not of sufficient "quality" need only look tothe record of the Commission's hearing, the medicalliterature, and the cases to see that what theChairman of this Commission decries as unsubstantiatedis freely admitted by those involved. Therewould be no point in arguing for a "wide and open"discussion of the topic were it not assumed from theoutset that the acceptance of euthanasia is goodpublic policy.Justice James A. Andersen of the Supreme Courtof Washington has written:As recently as five years ago, or perhaps three, the ideathat fluids and nutriment might be withdrawn, with moraland perhaps legal impunity, from dying patients, was anotion that would have been repudiated, if not condemned,by most health professionals. They would haveregarded such an idea as morally and psychologicallyobjectionable, legally problematic, and medically wrong.The notion would have gone "against the stream" ofmedical standards of care. [However,]. . .this practice isreceiving increased support from both physicians andbioethicists. This new stream of emerging opinion istypically couched in the language of caution and compassion.But the underlying analysis, once laid bare, suggestswhat is truly at stake: That for an increasing number ofpatients, the benefits of continued life are perceived asinsufficient to justify the burden and cost of care; thatdeath is the desired outcome, and critically—that the roleof the physician is to participate in bringing this about. 18Justice Edward D. Robertson, Jr. of the MissouriSupreme Court has made the same point. 19Though the Washington State and Missouri casesdeal with disabled adults, the basic issues are similar(though not identical) to those involving disabledinfants like Baby Doe and Baby Jane Doe. Theindividual has a medical need which will respond totreatment, but is disabled and the prognosis forrehabilitation or cure is at best uncertain and usuallybad. The treatments proposed are not medicallycontraindicated. The affected individuals are notdead or dying. The argument is over whether or notthey might not be "better off' dead.Recognizing the Obvious: The Abortion"Connection"At the outset of both hearings, and in many of thedebates, both internal and external to the Commis-18In re Guardianship of Grant, 109 Wash.2d 545, 747 P.2d 445,459 (1987) (Andersen, J., concurring in part and dissenting inpart).19Cruzan v. Harmon, 760 S.W.2d 408 (Mo., 1988).sion, the so-called "Baby Doe" issue has been linkedto that of abortion. That it should not have been isan entirely different matter, but it is unsurprisingthat it was. Whenever the politics and law of civilrights, personal autonomy and bioethics confrontone another in a field fraught with emotion, humansuffering, and deeply-held and divergent moralviews, connections will inevitably be made by thosetermed "liberals" as well as by those who stylethemselves as "conservatives" or "libertarians."That is what happened here.And therein lies the most interesting, and personallyfrustrating, political aspect of this report. Thewitness list of the June 1985 hearing, assembled byCommission staff, cast the issues as matters ofbioethics, medicine, and personal privacy. Discriminationwas not the subject of the inquiry. Whenqueried, the medical and ethical experts called totestify quite predictably denied that discriminationhas anything to do with denial of treatment. Theissue of discrimination was addressed directly byonly one panel in the first hearing. 20 The focus onmedicine and ethics and the relegation of disabilityor rehabilitation issues to the sidelines spoke volumes.The issue had been "medicalized" and "privatized."It was not until the June 1986 hearing thatdisability and rehabilitation issues were highlighted.Testimony of parents and medical experts wasincluded as well in an attempt to "balance" therecord of both hearings. But then the libertarians onthe Commission's staff took over. Firm believers inderegulation, they sat on the transcript of the 1986hearing, refusing to release it even to this Commissioner,for nearly a full year. Considerable politicalcapital was expended in an attempt to kill the reportas late as August 1987. In short, the internalopposition of key staff members to the publication ofthis report largely accounts for its late release. Forsome, personal liberty was the motivating reason fortheir opposition; for others, it was the "abortionconnection" which complicated an objective reviewof the record. Sadly, neither group ever stopped toconsider whether there might really be discriminationgoing on.Commissioner Mary Frances Berry captured thenature of the dilemma best shortly before she cast20Hearing Before the United States Commission on Civil Rights:Protection of Handicapped Newborns 113-38 (1985) (vol. I) (disabilityperspective).211

her (much appreciated) vote for this report and itsrecommendations.I don't know if my colleague, Mr. Destro, has read [theChairman's written comments on the report 21 ], but if hehas he will note that while he may think this issue hasnothing to do with abortion, the Chairman seems to thinkit does and there are other people who I also think willMthink that it does, however you characterize itShe was (and is) correct. There is a connection.But it is not the political linkage one about whichshe and others have been so concerned. The nexus isphilosophical and moral.There will always be profound moral, philosophical,ethical and legal dilemmas involved in medicaldecisionmaking. Each of these dilemmas, in its ownway, detracts from the personal choice and autonomyof those involved, but there is no escaping them.It is also true that the law cannot prevent childabuse or any other anti-social behavior, such asdiscrimination, which has its roots in human ignorance,intolerance or weakness. The role21United States Commission on Civil Rights, Transcript ofMeeting of Jan. 9, 1989 at 16.of law is state a norm of acceptable behavior. Thosewho make and enforce the law can affect attitudesonly as "teachers" whose pronouncements andbehavior set the social norm. Thus, when the timecomes for action, as it did for the Commission whenit voted on this report, our duty to advise Congressand the President on policy required us to draw linesin as clear a fashion as our limited capacity forhuman understanding would permit.This report rejects discrimination against thepersons with disabilities in the context of medicalcare decision-making. To have ignored the problem,treated it as a matter of medical or parental autonomy,or minimized the seriousness of the attitudeswhich brought these practices about would havebeen to take the risk that the public might believe"that [this Commission thinks] it is alright to killkids—[because] that is one way one could interpret[it]." 23Arlington, VirginiaMay 19892223Id. at 19 (comments of Commissioner Berry).Id. at 20-21 (comments of Commissioner Berry).212