handicapped infants might violate Section 504. . .ifthe hospital failed to report medical neglect <strong>of</strong> ahandicapped infant when it would report suchneglect <strong>of</strong> 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 <strong>of</strong> its analysis and the apparentbreadth <strong>of</strong> the plurality's description <strong>of</strong> the Court'sinjunction. Nothing in Justice Stevens' analysissuggests that HHS should be prevented from investigatinginstances in which it is alleged that a recipient<strong>of</strong> Federal financial assistance is failing to reportmedical neglect solely because the victim has adisability, 131 only that HHS had provided insufficientevidence <strong>of</strong> the prevalence <strong>of</strong> discriminatorynonreporting to provide an administrative justificationfor the Final Rule. Yet, Justice Stevens wrote,"the injunction forbids continuation or initiation <strong>of</strong>regulatory and investigative activity directed atinstances in which parents have refused consent totreatment. . . ." 132 Taken literally, that might appearto forbid investigations <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> medical neglect <strong>of</strong> 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 <strong>of</strong> necessary nourishmentand medical treatment," § 84.55(c)(l)(iv)—all without regardto the procedures followed by state agencies in handlingcomplaints filed on behalf <strong>of</strong> nonhandicapped infants. . . .The complaint-handling process the Secretary wouldimpose on unwilling state agencies is totally foreign to the76ent, nonreporting that, <strong>of</strong> 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 <strong>of</strong> Healthand Human Services to act to enforce section 504 ina well-documented instance <strong>of</strong> discriminatory failureto report as a way <strong>of</strong> ultimately obtaining clarificationor adjustment from the Court.Enforcement <strong>of</strong> section 504 is contingent, <strong>of</strong>course, on receipt <strong>of</strong> Federal financial assistance bythe source <strong>of</strong> alleged discrimination. In the pluralityopinion, Justice Stevens wrote: "We do not addressthe question whether reporting, either as a hospitalpractice or as a requirement <strong>of</strong> state law, constitutesa 'program or activity receiving Federal financialassistance' under Section 504." 134 The Commissionconcludes that passage <strong>of</strong> the Civil Rights RestorationAct eliminates this concern, since it defines"program or activity" under section 504 as including"all <strong>of</strong> the operations <strong>of</strong>. . .an entire corporation,partnership, or other private organization. . .whichis principally engaged in the business <strong>of</strong> 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 <strong>of</strong>fered 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 <strong>of</strong> 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 <strong>of</strong> handicapped babies for a specifictreatment where it reports nontreatment <strong>of</strong> 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 <strong>of</strong> medical neglect to the State childprotective services agency, that is part <strong>of</strong> theoperations <strong>of</strong> a corporation that principally provideshealth care; if any part <strong>of</strong> the hospital receivesmedicaid or medicare, discrimination based on handicapin the reporting operation, therefore, violatessection 504.Importance <strong>of</strong> Section 504 EnforcementAlthough there is another basis for Federal enforcement<strong>of</strong> the right to treatment <strong>of</strong> children bornwith disabilities—the Child Abuse Amendments <strong>of</strong>1984, 136 which are described in the next chapterenforcement<strong>of</strong> section 504 would provide certainadvantages not present in the Child Abuse Amendmentsalone. For one, section 504 reaches medicaldiscrimination against people with disabilities <strong>of</strong> 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 <strong>of</strong> ways inwhich the amendments are inferior to section 504 inprotecting against medical discrimination. As JamesBopp, Jr., a member <strong>of</strong> the President's Commissionon Mental Retardation and the director <strong>of</strong> a legalservices program specializing in denial <strong>of</strong> medicaltreatment to people with disabilities, testified:[T]he remedies available in Section 504 are superior. TheChild Abuse Amendments <strong>of</strong> 1984 require, at the pain <strong>of</strong>loss <strong>of</strong> Federal funds, State child protective serviceagencies to act. That is quite in contrast with theapplication <strong>of</strong> Section 504, which provides a substantivelaw standard for the entities that are discriminating againstpersons with disabilities in the delivery <strong>of</strong> medical care,which are hospitals and hospital employees and otherswho are recipients <strong>of</strong> 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 <strong>of</strong> Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 35 (1986) (vol. II) (testimony <strong>of</strong>James W. Ellis, <strong>School</strong> <strong>of</strong> <strong>Law</strong>, <strong>University</strong> <strong>of</strong> New Mexico).Accord, id. at 159 (testimony <strong>of</strong> 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 <strong>of</strong> a class action. . . .TheChild Abuse Amendments only would involve a case-bycaseprotection <strong>of</strong> then-alive infants that are deniedtreatment, whereas under section 504 you can get injunctiverelief to prohibit the hospital from using this form <strong>of</strong>criteria and protect all future infants. 139The Commission heard revealing testimony frompediatric neurologist Dr. Patricia Ellison concerningthe comparative effect <strong>of</strong> the section 504 regulationsand those under the Child Abuse Amendments <strong>of</strong>1984. 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 <strong>of</strong> 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 <strong>of</strong> its funds; it should do the same toprevent medical discrimination against persons withdisabilities.ConclusionThe Commission's reading <strong>of</strong> the legislative historyand plain meaning <strong>of</strong> section 504 persuade it that<strong>of</strong> 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 <strong>of</strong> Handicapped Newborns: Hearing Before the UnitedStates Commission on Civil Rights 162 (1986) (vol. II) (testimony<strong>of</strong> James Bopp, Jr., President, National Legal Center for theMedically Dependent and Disabled).140Id. at 240-41 (testimony <strong>of</strong> Patricia Ellison, M.D.). Dr.Owens concurred. Id. at 241 (testimony <strong>of</strong> Walter Owens, M.D.,Bloomington Obstetrics and Gynecology, Inc.).77
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MedicalDiscriminationAgainstChildre
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idments • Section 504 • Medical
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LETTER OF TRANSMITTALThe PresidentT
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CONTENTSExecutive Summary 11. Funda
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12. The Performance of the Federal
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• The role of economic considerat
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disabilities at the time that the c
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generated by health care personnel
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ing how they would obtain medical r
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The Commission sees several advanta
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acquiescence in the death or elimin
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Services of the Department of Healt
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Chapter 1Fundamental Rights: An Int
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Carlton Johnson was evaluated by a
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"that Mr. and Mrs. Doe, after havin
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American Coalition of Citizens with
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Reviewing the first 30 months of th
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Webster's defines "suspected" as "t
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Chapter 12The Performance of the Fe
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The baby's doctor, E. Laurence Hode
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to achieve a reasonable life". . .w
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an unmarried mother receiving welfa
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can be sure all appropriate actions
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inquiries to determine whether they
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Chapter 13The Protection and Advoca
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authority to conduct retrospective
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facility that uses such a committee
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Chapter 14Findings and Recommendati
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as the coordination and development
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in the advisory process who is conc
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A Dissenting View on the Report Med
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arts) to depend upon knowledge of h
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Attachments to Statement of William
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medical facility. Considerations su
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Fund for the Improvement of Postsec
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eports such as Kopelman et al. demo
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Appendix 1EXPOSING OUR CHILDREN, EX
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abilities or functions, they are de
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My principal reason for objecting t
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I derive this hint from the many co
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moral distinction. A girl is a huma
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Appendix 2SURVEY OFSTATE BABY DOE P
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insure the immediate referral of po
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Hospital Liaisons Designated in Mos
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BABY DOE COMPARED WITH REGULAR CPS
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We also asked state CPS offices wha
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Limited information was available o
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one-quarter felt that baby doe case
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Appendix 3INFANT CARE REVIEW COMMIT
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and guidelines concerning the withh
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treated to assure the prompt ^repor
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3. Educating Staff and FamiliesThre
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One of the 10 ethics committees vis
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asphyxiation during the birth proce
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Prospective Review -- Each committe
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OBSERVATIONSThe inspection found th
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May 1, 1989Page 2The Commission adv
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Doe 1 admitted on the record of the
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tion is the basis for failure to tr
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her (much appreciated) vote for thi