als with the particular disability in question ortheir view <strong>of</strong> the burden that caring for such achild will place on them or their family; and4. cases where agencies charged with the protection<strong>of</strong> children or persons with disabilities havereason to believe that a disability, rather than theneed for and usefulness <strong>of</strong> 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 <strong>of</strong> this chapter, therefore, examines thenature and extent <strong>of</strong> the equal protection andprocedural due process constitutional rights at stakein the types <strong>of</strong> denial <strong>of</strong> treatment cases raisedabove. Part two examines the interests and rights <strong>of</strong>parents as potential substantive limitations on therecognition and protection <strong>of</strong> such rights, and partthree discusses the ability and willingness <strong>of</strong> courtsto protect the rights <strong>of</strong> newborns denied treatmenton the basis <strong>of</strong> disability. The chapter concludeswith a discussion <strong>of</strong> whether or not there is a needfor Federal legislative, administrative, or judicialintervention on behalf <strong>of</strong> newborn children who aredenied treatment on the basis <strong>of</strong> disability.The Constitutional Rights <strong>of</strong> NewbornChildren with DisabilitiesThe constitutional right <strong>of</strong> newborn children todue process and equal protection <strong>of</strong> the law is notopen to question. Section 1 <strong>of</strong> the 14th amendmentprovides in relevant part that:All persons born or naturalized in the United States andsubject to the jurisdiction there<strong>of</strong>, are citizens <strong>of</strong> theUnited States and <strong>of</strong> the State wherein they reside. NoState shall make or enforce any law which shall abridgethe privileges or immunities <strong>of</strong> citizens <strong>of</strong> the UnitedStates; nor shall any State deprive any person <strong>of</strong> life,liberty, or property, without due process <strong>of</strong> law; nor denyto any person within its jurisdiction the equal protection <strong>of</strong>the laws. 4As persons who are also citizens, persons withdisabilities, including newborn children, 5 are entitledto the same legal protection <strong>of</strong> their lives,physical integrity, and procedural due process rightsas infants, children, and adults without disabilities. 6Equal Protection <strong>of</strong> the <strong>Law</strong>sThe legal standards governing discrimination onthe basis <strong>of</strong> 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 <strong>of</strong> hishandicap" 8 and that children with disabilities mustbe <strong>of</strong>fered 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 concept<strong>of</strong> equal justice under law is served by the Fifth Amendment'sguarantee <strong>of</strong> due process, as well as by the Equal ProtectionClause <strong>of</strong> the Fourteenth Amendment." Hampton v. Mow SunWong, 426 U.S. 88, 100 (1976). Accord, United States Dep't <strong>of</strong>Agriculture 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 <strong>of</strong>Rights 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 <strong>of</strong>children are also protected, though, in some cases, to a lesserdegree than for adults. See, e.g., Hazelwood <strong>School</strong> Dist. v.Kuhlmeier, 108 S.Ct. 562 (1988); Tinker v. Des Moines <strong>School</strong>Dist., 393 U.S. 503 (1969); West Virginia Bd. <strong>of</strong> Educ. v.Barnette, 319 U.S. 624 (1943).6City <strong>of</strong> 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 <strong>of</strong>funded programs); Alexander v. Choate, 469 U.S. 287 (1985)(application <strong>of</strong> "disparate impact" theory as a matter <strong>of</strong> law orregulation); Smith v. Robinson, 468 U.S. 992 (1984) (relationship<strong>of</strong> the Education <strong>of</strong> the Handicapped Act, 20 U.S.C.A.§§ 1400-1485, (1982) [hereinafter cited as E.HA.] to section 504 <strong>of</strong>the Rehabilitation Act <strong>of</strong> 1973, 29 U.S.C.A. §794 (1982) and the14th amendment); Bd. <strong>of</strong> Educ. v. Rowley, 458 U.S. 176 (1982)(extent <strong>of</strong> rights under E.H.A.); Southeastern Community Collegev. Davis, 442 U.S. 397 (1979) (limits on reach <strong>of</strong> section 504).See also, Americans with Disabilities Act <strong>of</strong> 1988, S. 2345, 100thCong., 2d Sess.8Section 504 <strong>of</strong> the Rehabilitation Act <strong>of</strong> 1973, 29 U.S.C.A.§794 (1988) provides, in relevant part:No otherwise qualified individual with handicaps. . .shall,solely by reason <strong>of</strong> his handicap, be excluded from theparticipation in, be denied the benefits <strong>of</strong>, 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" <strong>of</strong>promoting employment to subject the recipient to the requirements<strong>of</strong> section 504). The definition <strong>of</strong> 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 <strong>of</strong> such person's major life activities, (ii) has a record <strong>of</strong> 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 <strong>of</strong> theappropriate equal protection standard for "disability"cases is Congress' prohibition against discriminationagainst those with disabilities in federallyfunded programs, including its expression <strong>of</strong> particularconcern about medical care discriminationagainst infants with disabilities. 12In a series <strong>of</strong> cases elaborating on various Federallaws governing the rights <strong>of</strong> persons with disabilities,13 the United States Supreme Court has heldthat the intent <strong>of</strong> these laws is tw<strong>of</strong>old: 14 to protectthose with disabilities from the discriminatory acts<strong>of</strong> 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 <strong>of</strong> disability is a violation<strong>of</strong> the equal protection clause <strong>of</strong> the 14th amendmentwhen the government is unable to demonstratethat its rationale for the challenged discriminatoryactivity is grounded in an unprejudiced evaluation <strong>of</strong>the 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 <strong>of</strong> disability must be tied to a funding source or somematter <strong>of</strong> 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 <strong>of</strong> protection, Congress retains the abilityto mandate a minimum level <strong>of</strong> 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 <strong>of</strong> 1984, 42 U.S.C.A. §§5101-5103(Supp. 1988). For a full discussion <strong>of</strong> the law, see chap. 7.13See cases cited supra note 7.14That the congressional concern was for both the social welfareand the civil rights <strong>of</strong> persons with disabilities is criticallyimportant to an understanding <strong>of</strong> 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 <strong>of</strong> Individual Abilities (1983).There is an inherent relationship between civil rights law andsocial welfare policy, yet they address separate problems. Personsin need <strong>of</strong> material or economic assistance <strong>of</strong>ten need the legalprotection afforded by the civil rights laws. Pro<strong>of</strong> <strong>of</strong> 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 <strong>of</strong> intentional discriminationagainst the persons with disabilities, but refusing to holdeither that the regulations promulgated under the statute areCleburne v. Cleburne Living CenterIn City <strong>of</strong> 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 <strong>of</strong>the constitutional standards that govern legislationhaving an adverse impact on the mentally retardedwith a review <strong>of</strong> 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 <strong>of</strong> 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 <strong>of</strong> "disparate impact" analysis); Consolidated Rail Corp.v. Darrone, 465 U.S. 624 (1984) (coverage <strong>of</strong> 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 <strong>of</strong> the persons withdisabilities, might be considered "benign" in that they are notintentional or "invidious":To be sure, well-catalogued instances <strong>of</strong> invidious discriminationagainst the handicapped do exist. See, e.g., United StatesCommission on Civil Rights, Accommodating the Spectrum<strong>of</strong> Individual Abilities, Ch. 2 (1983); Wegner, The AntidiscriminationModel Reconsidered: Ensuring Equal OpportunityWithout Respect to Handicap Under Section 504 <strong>of</strong> theRehabilitation Act <strong>of</strong> 1973, 69 Cornell L. Rev. 401, 403 n.2(1984).469 U.S. at 295, n. 12. Intentional neglect <strong>of</strong> the needs <strong>of</strong> personswith disabilities—such as denying food and water (nutrition andhydration) or necessary medical care because the disability isalleged to cause a diminished quality <strong>of</strong> 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 <strong>of</strong>the 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 <strong>of</strong> these standards, see supra note 7.95
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MedicalDiscriminationAgainstChildre
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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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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