taking place when a report <strong>of</strong> suspected denial <strong>of</strong>treatment 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 <strong>of</strong> hospital-administeredinfant care review committees (ICRC)does not relieve a State CPS agency <strong>of</strong> its responsibilityto investigate suspected cases <strong>of</strong> withholding<strong>of</strong> medically indicated treatment or to employ itslegal authority to prevent such withholding:[T]he existence and activities <strong>of</strong> the ICRC do not amendthe responsibilities under State law <strong>of</strong> medical pr<strong>of</strong>essionalsand the hospital to report to the child protectiveservices agency suspected instances <strong>of</strong> medical neglect(including the withholding <strong>of</strong> 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 <strong>of</strong> the child, theDepartment [<strong>of</strong> Health and Human Services] believes theyhave separate and distinct functions. The primary function<strong>of</strong> the ICRC in this context is to <strong>of</strong>fer counsel to theattending physician(s), the hospital and the family toassure that the parents have the benefit <strong>of</strong> prudent,knowledgeable and pr<strong>of</strong>essional evaluations, recommendationsand services, consistent with appropriate medicalstandards, to assist them in making sound decisionsregarding the welfare <strong>of</strong> their child. The function <strong>of</strong> thechild protective services agency is to determine thosecircumstances in which the power <strong>of</strong> the State must beinvoked to protect the infant, and then to take appropriateaction to do so. 5Section 5103(2) <strong>of</strong> the Child Abuse Preventionand Treatment Act <strong>of</strong> 1978 provides: "In order for aState to qualify for assistance under this subsection,4Ala. Dep't <strong>of</strong> Pensions and Sec., I Family and Children's Servs.Manual, Pt. VII-53 (Rev. May 1988); Alaska Division <strong>of</strong> Familyand Youth Services, Child Protective Services Policy Manual tits.300. §5.045(c)(l) & (d)(l) (January 1987); Ariz. Dep't <strong>of</strong> EconomicSec. Policy 5-55-8.E.1 (May 1988); Del. Dep't <strong>of</strong> Servs. forChildren, Youth and Their Families, Policy on Medical Neglect<strong>of</strong> Handicapped Infants at 2 (August 1986); Fla. Dep't <strong>of</strong> Healthand Rehabilitative Servs., Health and Rehabilitative ServicesPamphlet 175-1, §3.4.17 (July 1988); Ga. Dep't <strong>of</strong> HumanResources, Guidelines for Medical Neglect <strong>of</strong> Disabled Infants,Introduction, 1J3 (undated); Haw. Dep't <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> Social AndHealth Servs., Div. <strong>of</strong> Children and Family Servs. Manual ch.26.33 F.(5)(b) (March 1987); Memorandum from Rozella Archer,such State shall. . .provide for the reporting <strong>of</strong>known and suspected instances <strong>of</strong> 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 <strong>of</strong> cases <strong>of</strong> suspected medical neglect(including instances <strong>of</strong> the withholding <strong>of</strong> medicallyindicated treatment from disabled infants with lifethreateningconditions);. . ." 7 Subsection1340.14(d) requires that "the State must provide forthe prompt initiation <strong>of</strong> an appropriate investigationby a child protective agency or other properlyconstituted authority to substantiate the accuracy <strong>of</strong>all reports <strong>of</strong> known or suspected child abuse orneglect." 8Shortly after the adoption <strong>of</strong> the Child AbuseAmendments, Pr<strong>of</strong>essors Nancy Rhoden and JohnArras openly challenged hospital infant bioethicscommittees to "educate" local CPS agency personnelso that they "come to appreciate all <strong>of</strong> 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 <strong>of</strong> such "education" is to encouragehospital committees "occasionally [to] condone nontreatmentin circumstances not contemplated" bythe Child Abuse Amendments <strong>of</strong> 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 <strong>of</strong>Human 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 <strong>of</strong>1984 and their implementing regulations would be <strong>of</strong> purely"symbolic" importance because in practice "the impact <strong>of</strong> 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 <strong>of</strong> cases that gounreported." 10 A Florida administrator stated, "Isuspect that these cases are occurring in the State <strong>of</strong>Florida, but that the hospitals are handling thesituations appropriately—which is the best <strong>of</strong> allworlds, really." 11 An administrator for the District<strong>of</strong> Columbia declared that "all <strong>of</strong> 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 <strong>of</strong>the medical pr<strong>of</strong>ession who have strongly objectedto the Child Abuse Amendments. In Nebraska, theState CPS agency simply turned over principalresponsibility for evaluating reports <strong>of</strong> such denial tothe State chapter <strong>of</strong> the American Academy <strong>of</strong>Pediatrics. 13On September 30, 1985, Dr. Kenton Shaffer, on behalf<strong>of</strong> the Committee on Maternal and Child Health <strong>of</strong> theNebraska Medical Association and the Fetus and NewbornCommittee <strong>of</strong> the Nebraska Chapter <strong>of</strong> the AmericanAcademy <strong>of</strong> Pediatrics, notified the Nebraska Department<strong>of</strong> Social Services (DSS) that an Ad-Hoc ResourceCommittee had been formed to <strong>of</strong>fer assistance to DSS inevaluating cases <strong>of</strong> suspected medical neglect <strong>of</strong> infantsborn with a handicapping condition. . . .Gina Dunning, state director <strong>of</strong> the DSS, accepted this<strong>of</strong>fer 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 <strong>of</strong> Health and HumanServices (July 25, 1988).12Telephone interview with Carolyn Smith, Chief <strong>of</strong> Intake forProtective Services, District <strong>of</strong> Columbia Department <strong>of</strong> HumanServices (Aug. 9, 1988).13See chap. 6, and text accompanying notes 59-62, 70, for adescription <strong>of</strong> the position taken by the American Academy <strong>of</strong>Pediatrics 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 draft<strong>of</strong> this report, the Nebraska Department <strong>of</strong> Social Services tookissue with the "inaccuracy" <strong>of</strong> these statements, stating: "Whilethis Committee <strong>of</strong> experts MAY provide consultation to theDepartment regarding planning for and intervention steps <strong>of</strong> theinvestigation, by no means has the '. . .state CPS agency simplyturned over principal responsibility for evaluating reports <strong>of</strong> suchdenial to the state chapter <strong>of</strong> the American Academy <strong>of</strong>Pediatrics.'" Letter from Kermit R. McMurry, Director, NebraskaDepartment <strong>of</strong> 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 <strong>of</strong> Human Services,Division <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> the cases, thehospital under investigation for medical neglect ispermitted to name the "independent" medical authoritywho will rule on whether the course <strong>of</strong>treatment or nontreatment is proper.Special Relationship Among CPSAgencies and DoctorsThis widespread and remarkable readiness <strong>of</strong> 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 members<strong>of</strong> the medical pr<strong>of</strong>ession. In dealing withtraditional forms <strong>of</strong> child abuse and neglect, CPSagencies rely primarily on health care pr<strong>of</strong>essionalsfor 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 <strong>of</strong>the Nebraska Medical Association." Id. Furthermore, the Nebraska"Central Office Procedures in Regard to a Report <strong>of</strong>Suspected Medical Neglect <strong>of</strong> an Infant Born with HandicappingConditions" state that upon receiving notification <strong>of</strong> such a reportCPS agency staff "will immediately contact a representative <strong>of</strong>the Ad-Hoc Resource Committee for consultation <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> the Ad-HocResource Committee.15Letter from Bobbie Ferguson, Acting Administrator, ChildProtective Services, to Mr. Tommy Sullivan, Regional Director,Administration <strong>of</strong> Children, Youth and Services 2 (Apr. 10, 1986)(available in files <strong>of</strong> U.S. Commission on Civil Rights).16Id at 1.17Telephone interview with Sandra Haden, Arkansas Department<strong>of</strong> Human Services, by Dr. Leon Bourke (June 10, 1987).18 Id.113
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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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Chapter 2The Physician-Parent Relat
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In all but a few cases, the parents
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the family, and the family went alo
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Chapter 3The Role of Quality of Lif
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transition from education to employ
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tion programs can become productive
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unsuccessful efforts of a private a
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[S]ince I have been at Children's M
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Another survey by Siperstein, Wolra
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of life with a child who is disable
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Chapter 4The Role of Economic Consi
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©TABLE 4.1Pediatricians' Responses
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• The differences in average cost
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FIGURE 4.1Comparative Costs of Inst
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Chapter 5State LawWhat is the law g
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Like all authority. . .parental aut
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This decision, however, was promptl
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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