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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
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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
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 62 and 63: ©TABLE 4.1Pediatricians' Responses
Page 64 and 65: • The differences in average cost
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
Page 112 and 113: tions at all regarding the subject
Page 114 and 115: 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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