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Services of the Department of Health and HumanServices in fulfilling its responsibility to ensure thatState child protective services agencies receivingfunds under the Child Abuse Prevention and TreatmentAct comply with the Child Abuse Amendmentsof 1984 so as to protect children withdisabilities from illegal discrimination in the provisionof medical care. That performance requiressubstantial improvement. Although the Commissionis encouraged by steps the Office of Human DevelopmentServices now states it will take in responseto this report, it is too soon to determine whetherthey will result in the very significant increase inscrutiny of the performance of recipient Stateagencies that is essential if the Department iseffectively to fulfill its responsibilities under the law.Specific Recommendations Regarding the ChildAbuse Amendments of 19841. Because funds available under the ChildAbuse Prevention and Treatment Act are apparentlynot sufficient to induce all jurisdictions to complywith the Child Abuse Amendments in order toqualify for them, compliance with the Child AbuseAmendments should be made an additional requirementfor State eligibility for participation in medicaid,so that the protections they afford will be madeavailable to all children with disabilities in theUnited States.2. Congress should amend the Child AbusePrevention and Treatment Act or other appropriatelegislation to establish a mechanism to improvereporting of cases of suspected withholding ofmedically indicated treatment by requiring that anyhospital that uses a committee to review a prospectiveinstance of withholding of treatment from aperson with a disability is required to notify theState protection and advocacy (P&A) agency ofmeetings held to discuss the case. The P&A agencyshould then be afforded the opportunity to examinethe medical records and discuss the situation withphysicians, relatives, and the committee. It shouldhave authority to obtain a court order for anindependent medical examination, and if it concludesthat medically indicated treatment would otherwisebe withheld illegally, it should have the standing toinstitute a court proceeding to require that it beprovided.3. Hospitals without a specialized advisory processfor dealing with the special needs of parents forinformation on disability and rehabilitation should berequired to establish a process in accordance withthe provisions of the Child Abuse Amendments andthe recommendation made above.4. Representatives of the local protection andadvocacy system should be included in the advisoryprocess, both as advocates for the child's interestsand as a resource for the information of the parents.5. Congress should amend section 504 and theChild Abuse Amendments to require the establishmentof such a care review process or committeewithin treatment facilities across the country.6. Should any participant in a care reviewadvisory process not be satisfied that the outcome ofthe process is in compliance with the standards setforth in the Child Abuse Amendments, that personshould have standing to invoke such remedies,judicial or otherwise, that are available under Statelaw for dealing with child neglect.7. When a State child protective services agency(CPS) receives a report of suspected withholding ofmedically indicated treatment under the ChildAbuse Amendments, it should be required promptlyto notify the State P&A agency and to provide itaccess to the records obtained and informationdeveloped by the CPS agency. As a representativeof the interests of the child, the P&A agency shouldhave independent authority, similar to that now heldby the CPS agency, to obtain medical records, toobtain a court order for an independent medicalexamination, to appear on behalf of the child in anycourt proceeding to authorize medical treatmentinitiated by the CPS agency. The P&A agencyshould also have independent standing to initiate acourt proceeding to authorize medical treatment forthe child.8. To create a deterrent to physicians who notonly might fail to report a case of withholding to theState CPS agency but also might not submit it to ahospital committee, the P&A agency should begiven authority to conduct retrospective reviews ofthe medical records of those with disabilities whodie in the State. If instances of illegal withholding ofmedical treatment are detected, the P&A agencyshould be able to seek appropriate action by licensingboards or Federal funding sources and, inextreme cases, to institute suits for injunctive ormonetary relief or refer cases for investigation byprosecuting attorneys.9. Congress should afford P&A agencies appropriatefinancial and backup assistance to enable themto fulfill these roles capably.16
10. The Office of Human Development Services ment Act to remedy the current widespread failurein the Department of Health and Human Services of State child protective services agencies to complyshould take corrective measures to ensure more with the requirements of the Child Abuse Amendrigorousscrutiny of State plans submitted for fund- ments of 1984ing under the Child Abuse Prevention and Treat-17
Page 1 and 2: MedicalDiscriminationAgainstChildre
Page 3 and 4: idments • Section 504 • Medical
Page 5: LETTER OF TRANSMITTALThe PresidentT
Page 9 and 10: 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 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 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
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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
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that "the phrase 'or holds the reas
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allows an infant to be denied nutri
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avoid the explicit standards set fo
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(as opposed to the far) future, the
Page 104 and 105:
It was recognized, therefore, that
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als with the particular disability
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cared for. They are thus different,
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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
Page 134 and 135:
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
Page 142 and 143:
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
Page 158 and 159:
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
Page 180 and 181:
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
Page 192 and 193:
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
Page 220 and 221:
Doe 1 admitted on the record of the
Page 222 and 223:
tion is the basis for failure to tr
Page 224:
her (much appreciated) vote for thi
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