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©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
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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
Page 11: 12. The Performance of the Federal
Page 14 and 15: • The role of economic considerat
Page 16 and 17: disabilities at the time that the c
Page 19 and 20: generated by health care personnel
Page 21: ing how they would obtain medical r
Page 24 and 25: The Commission sees several advanta
Page 26 and 27: acquiescence in the death or elimin
Page 28 and 29: Services of the Department of Healt
Page 30 and 31: Chapter 1Fundamental Rights: An Int
Page 32 and 33: Carlton Johnson was evaluated by a
Page 34 and 35: "that Mr. and Mrs. Doe, after havin
Page 36 and 37: American Coalition of Citizens with
Page 38 and 39: Chapter 2The Physician-Parent Relat
Page 40 and 41: In all but a few cases, the parents
Page 42 and 43: the family, and the family went alo
Page 44 and 45: Chapter 3The Role of Quality of Lif
Page 47: transition from education to employ
Page 50 and 51: tion programs can become productive
Page 52 and 53: unsuccessful efforts of a private a
Page 54 and 55: [S]ince I have been at Children's M
Page 56 and 57: Another survey by Siperstein, Wolra
Page 58 and 59: of life with a child who is disable
Page 60 and 61: Chapter 4The Role of Economic Consi
Page 64 and 65: • The differences in average cost
Page 66 and 67: FIGURE 4.1Comparative Costs of Inst
Page 68 and 69: Chapter 5State LawWhat is the law g
Page 70 and 71: Like all authority. . .parental aut
Page 72 and 73: This decision, however, was promptl
Page 74 and 75: No otherwise qualified handicapped
Page 76 and 77: Bloomington's Infant Doe in April 1
Page 78 and 79: ONONTABLE 6.1Physician's assessment
Page 80 and 81: Essentially, HHS interpreted the su
Page 82 and 83: Final 504 RuleHHS received nearly 1
Page 84 and 85: lifesaving operations to close her
Page 86 and 87: any further implementation of the F
Page 88 and 89: handicapped infants might violate S
Page 90 and 91: the provision does cover discrimina
Page 92 and 93: of the infants. The review mechanis
Page 94 and 95: Under the law, the Department of He
Page 96 and 97: that "the phrase 'or holds the reas
Page 98 and 99: allows an infant to be denied nutri
Page 100 and 101: avoid the explicit standards set fo
Page 102 and 103: (as opposed to the far) future, the
Page 104 and 105: It was recognized, therefore, that
Page 106 and 107: als with the particular disability
Page 108 and 109: cared for. They are thus different,
Page 110 and 111: medical advice. Given the magnitude
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tions at all regarding the subject
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strates that there is a grave dange
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Disincentives to Whistle BlowingDen
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Using a cumulative scaling procedur
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Of that 300 we targeted, approximat
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Conclusionphysicians set forth in t
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taking place when a report of suspe
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where the parents say "the child fe
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Nevertheless, the organization oppo
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Chapter 11The Role and Performance
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a member of the American Academy of
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possibilities that "will be most li
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clearly indicate that the committee
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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
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