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Under the law, the Department of Health andHuman Services was obligated to promulgate regulationsto implement the act and to publish modelguidelines for hospital-based infant care reviewcommittees. 28 These committees are voluntaryunder the 1984 amendments, as are the guidelinessuggested for them. 29 A proposed implementingregulation was published by HHS on December 10,1984. 30 In excess of 116,000 comments, most of themfavorable, were received on the proposed regulation.31On April 15, 1985, the HHS promulgated theFinal Rule. In addition to the regulation itself, HHSpublished an appendix containing "InterpretativeGuidelines." The Interpretative Guidelines were inlarge part derived from part of the proposedregulation. In response to critical comments frommedical organizations, HHS decided to remove theclarifying definitions from the final regulation itself.However, because HHS continued "to believe thatguidance relating to interpretations of keyterms. . .will aid in effective implementation of thestatute (a belief shared by many commenters)," itincorporated its understanding of them into theappendix. 32 HHS wrote:In publishing these interpretative guidelines, the Departmentis not seeking to establish them as binding rules oflaw, nor to prejudge the exercise of reasonable medicaljudgment in responding to specific circumstances. Rather,this guidance is intended to assist in interpreting thestatutory definition so that it may be effectively andrationally applied in specific cases so as to fully effectuatethe statutory purpose of protecting disabled infants. 33Thus, the Interpretative Guidelines give "all partiesthe benefits of very relevant interpretations of thestatute by the agency charged with its implementation."3428ChDd Abuse Amendments of 1984, 42 U.S.C.A. §5103 note(West Supp. 1988).29See chap. 11 for a detailed consideration of the HHS modelguidelines for infant care review committees issued in accordancewith the amendments.30Child Abuse and Neglect Prevention and Treatment Program,49 Fed. Reg. 48160 (1984) (to be codified at 45 C.F.R. pt. 1340)(proposed Dec. 10, 1984) [hereinafter Proposed Rule (CAA)].31Child Abuse and Neglect Prevention and Treatment Program,50 Fed. Reg. 14878, 14879 (1985) (codified at 45 C.F.R. pt. 1340)[hereinafter Final Rule (CAA)].32Id. at 14880.33Id.34Id. at 14882.35Id. at 14878.36Telephone interviews with Mary McKeough, Program Analyst,National Center for Child Abuse and Neglect, Office of82The relevant provisions of the Child AbuseAmendments of 1984 and their implementing regulationbecame effective on October 9, 1985. 35 As ofDecember 1988, four States—California, Indiana,Ohio, and Pennsylvania—did not receive fundsunder the Child Abuse Prevention and TreatmentAct, and the law did not apply to them. 36 Theremaining 46 States, the District of Columbia, andPuerto Rico receive grants under the act, and theprovisions of the amendments apply in these jurisdictions.37A sizable number of children with disabilities,those in the States that do not receive funds underthe act, are not protected by the Child AbuseAmendments. Moreover, the funding the FederalGovernment provides through the underlying act ismeager in comparison to that under other Federalprograms: in fiscal year 1988, each compliant eligiblejurisdiction received an annual base of $35,000 andan additional amount depending on the number ofresidents under the age of 18. Payments ranged froma high of $739,006 (Texas) to a low of $35,980(Commonwealth of the Northern Mariana Islands). 38As a result, the financial incentive for States tocomply is not very great. 39The Standard of CareAs noted by the six principal Senate sponsors,each word in the standard of care enacted by theamendments "was chosen with utmost care." 40Their nuances require careful analysis. 41 Under thelaw, for a State to be eligible for Federal funds, itmust have in place procedures to respond to reportsof medical neglect; the definition given to medicalneglect in the context of denial of treatment tochildren with disabilities is the meticulously negotiatedfederally required standard of care.Human Development Services, Department of Health and HumanServices (Dec. 2 & 5, 1988).37Id.38Id. The former trust territory is funded under a differentformula. Id.39In the words of Commissioner Blandina Cardenas Ramirez:"When I was in HHS, which was HEW at the time, the ChildAbuse Act was one of the ones I was responsible for. . . .[Ijtwasvery difficult to get the States to comply because you had no stickand very little carrot." Transcript, Meeting of the United StatesCommission on Civil Rights 142 (Nov. 18, 1988).40Final Rule (CAA), supra note 31, at 14879.41See generally Mumaw, The Child Abuse Amendments of 1984:The Infant Doe Amendment, 18 Akron L. Rev. 515 (1985); Bopp &Balch, The Child Abuse Amendments of 1984 and their ImplementingRegulations: A Summary, 1 Issues in L. & Med. 91 (1985).