Bowen v. American Hosp. Ass'nAnnotate this Case
476 U.S. 610 (1986)
U.S. Supreme Court
Bowen v. American Hosp. Ass'n, 476 U.S. 610 (1986)
Bowen v. American Hosp. Association
Argued January 15, 1986
Decided June 9, 1986
476 U.S. 610
CERTIORARI TO THE UNITED STATES COURT OF APPEALS FOR
THE SECOND CIRCUIT
Section 504 of the Rehabilitation Act of 1973 provides that
"[n]o otherwise qualified handicapped individual . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."
In 1984, the Secretary of Health and Human Services (Secretary) promulgated regulations requiring: (1) health care providers receiving federal funds to post notices that, because of § 504's prohibition against discrimination on the basis of handicap, health care should not be withheld from infants on the basis of their mental or physical impairments; (2) state child protective services agencies to establish procedures to prevent unlawful medical neglect of handicapped infants, and when considered necessary, in the judgment of the responsible official of the Department of Health and Human Services, to protect a handicapped infant's life or health; (3) immediate access to patient records; and (4) expedited compliance actions. In consolidated actions in Federal District Court, respondents sought to declare the regulations invalid and to enjoin their enforcement. The court granted the requested relief on the authority of United States v. University Hospital, 729 F.2d 144 (CA2), and the Court of Appeals affirmed on the basis of that earlier decision.
Held: The judgment is affirmed.
794 F.2d 676, affirmed.
JUSTICE STEVENS, joined by JUSTICE MARSHALL, JUSTICE BLACKMUN, and JUSTICE POWELL, concluded that the regulations in question are not authorized by § 504. Pp. 476 U. S. 624-647.
(a) A hospital's withholding of treatment from a handicapped infant when no parental consent has been given cannot violate § 504, for, without the parents' consent, the infant is neither "otherwise qualified" for treatment nor has he been denied care "solely by reason of his handicap." There is nothing in the administrative record documenting the Secretary's belief that there exists "discriminatory withholding of medical care" in violation of § 504 which would justify federal regulation. None
of the examples cited by the Secretary as justification for the regulation suggests that the hospitals receiving federal funds, as opposed to parents, withheld medical care on the basis of handicap. Pp. 476 U. S. 630-636.
(b) The complaint-handling process the Secretary would impose on unwilling state agencies is totally foreign to the authority to prevent discrimination conferred on him by § 504. While the Secretary can require state agencies to document their own compliance with § 504, nothing in § 504 authorizes him to commandeer state agencies to enforce compliance by other recipients of federal funds (in this instance, hospitals). Pp. 476 U. S. 637-642.
(c) The Secretary's basis for federal intervention is perceived discrimination against handicapped infants in violation of § 504, and yet the Secretary has pointed to no evidence that such discrimination occurs. The administrative record does not contain the reasoning and evidence necessary to sustain federal intervention into a historically state-administered decisional process that appears -- for lack of any contrary evidence -- to be functioning in full compliance with § 504. Nothing in § 504 authorizes the Secretary to dispense with the law's focus on discrimination, and instead to employ federal resources to save the lives of handicapped newborns without regard to whether they are victims of discrimination by recipients of federal funds or not. Section 504 does not authorize the Secretary to give unsolicited advice either to parents, to hospitals, or to state officials who are faced with difficult treatment decisions concerning handicapped children. The administrative record demonstrates that the Secretary has asserted the authority to conduct on-site investigations, to inspect hospital records, and to participate in the decisional process in emergency cases in which there was no colorable basis for believing that a violation of § 504 had occurred or was about to occur. These investigative actions are not authorized by § 504, and the regulations that purport to authorize a continuation of them are invalid. Pp. 476 U. S. 642-647.
STEVENS, J., announced the judgment of the Court, and delivered an opinion in which MARSHALL, BLACKMUN, and POWELL, JJ., joined. BURGER, C.J., concurred in the judgment. WHITE, J., filed a dissenting opinion, in which BRENNAN, J., joined and in Parts I, II, IV, and V of which O'CONNOR, J., joined, post, p. 476 U. S. 648. O'CONNOR, J., filed a dissenting opinion, post, p. 476 U. S. 665. REHNQUIST, J., took no part in the consideration or decision of the case.
JUSTICE STEVENS announced the judgment of the Court and delivered an opinion, in which JUSTICE MARSHALL, JUSTICE BLACKMUN, and JUSTICE POWELL join.
This case presents the question whether certain regulations governing the provision of health care to handicapped infants are authorized by § 504 of the Rehabilitation Act of 1973. That section provides, in part:
"No otherwise qualified handicapped individual . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."
87 Stat. 394, 29 U.S.C. § 794. [Footnote 1]
The American Medical Association, the American Hospital Association, and several other respondents [Footnote 2] challenge the validity of Final Rules promulgated on January 12, 1984, by the Secretary of the Department of Health and Human Services. [Footnote 3] These Rules establish "Procedures relating to health care for handicapped infants," and in particular require the posting of informational notices, authorize expedited access to records and expedited compliance actions, and command state child protective services agencies to "prevent instances of unlawful medical neglect of handicapped infants." 45 CFR § 84.55 (1985).
Although the Final Rules comprise six parts, only the four mandatory components are challenged here. [Footnote 4] Subsection (b)
is entitled "Posting of informational notice," and requires every "recipient health care provider that provides health care services to infants in programs or activities receiving
Federal financial assistance" -- a group to which we refer generically as "hospitals" -- to post an informational notice in one of two approved forms. 45 CFR § 84.55(b) (1985). Both forms include a statement that § 504 prohibits discrimination on the basis of handicap, and indicate that, because of this prohibition
"nourishment and medically beneficial treatment (as determined with respect for reasonable medical judgments) should not be withheld from handicapped infants solely on the basis of their present or anticipated mental or physical impairments."
45 CFR §§ 84.55(b)(3), (4) (1985). The notice's statement of the legal requirement does not distinguish between medical care for which parental consent has been obtained and that for which it has not. The notice must identify the telephone number of the appropriate child protective services agency and, in addition, a toll-free number for the Department that is available 24 hours a day. Ibid. Finally, the notice must state that the "identity of callers will be kept confidential," and that federal law prohibits retaliation "against any person who provides information about possible violations." Ibid.
Subsection (c), which contains the second mandatory requirement, sets forth "Responsibilities of recipient state child protective services agencies." Subsection (c) does not mention § 504 (or any other federal statute), and does not even use the word "discriminate." It requires every designated agency to establish and maintain procedures to ensure that
"the agency utilizes its full authority pursuant to state law to prevent instances of unlawful medical neglect of handicapped infants." 45 CFR § 84.55(c)(1). Mandated procedures must include (1)
"[a] requirement that health care providers report on a timely basis . . . known or suspected instances of unlawful medical neglect of handicapped infants,"
§ 84.55(c)(1)(i); (2) a method by which the state agency can receive timely reports of such cases, § 84.55(c)(1)(ii); (3) "immediate" review of those reports, including "on-site investigation," where appropriate, § 84.55(c)(1)(iii); (4) protection of "medically neglected handicapped infants" including, where appropriate, legal action to secure "timely court order[s] to compel the provision of necessary nourishment and medical treatment," § 84.55(c)(1)(iv); and (5) "[t]imely notification" to HHS of every report of "suspected unlawful medical neglect" of handicapped infants. The preamble to the Final Rules makes clear that this subsection applies
"where a refusal to provide medically beneficial treatment is a result, not of decisions by a health care provider, but of decisions by parents."
49 Fed.Reg. 1627 (1984).
The two remaining mandatory regulations authorize "[e]xpedited access to records" and "[e]xpedited action to effect compliance." 45 CFR §§ 84.55(d), (e) (1985). Subsection (d) provides broadly for immediate access to patient records on a 24-hour basis, with or without parental consent,
"when, in the judgment of the responsible Department official, immediate access is necessary to protect the life or health of a handicapped individual."
§ 84.55(d). Subsection (e) likewise dispenses with otherwise applicable requirements of notice to the hospital
"when, in the judgment of the responsible Department official, immediate action to effect compliance is necessary to protect the life or health of a handicapped individual."
§ 84.55(e). The expedited compliance provision is intended to allow "the government [to] see[k] a temporary restraining order to sustain the life of a handicapped infant in
imminent danger of death." 49 Fed.Reg. 1628 (1984). Like the provision affording expedited access to records, it applies without regard to whether parental consent to treatment has been withheld or whether the matter has already been referred to a state child protective services agency.
The Final Rules represent the Secretary's ultimate response to an April 9, 1982, incident in which the parents of a Bloomington, Indiana, infant with Down's syndrome and other handicaps refused consent to surgery to remove an esophageal obstruction that prevented oral feeding. On April 10, the hospital initiated judicial proceedings to override the parents' decision, but an Indiana trial court, after holding a hearing the same evening, denied the requested relief. On April 12 the court asked the local Child Protection Committee to review its decision. After conducting its own hearing, the Committee found no reason to disagree with the court's ruling. [Footnote 5] The infant died six days after its birth.
Citing "heightened public concern" in the aftermath of the Bloomington Baby Doe incident, on May 18, 1982, the director of the Department's Office of Civil Rights, in response to a directive from the President, "remind[ed]" health care providers receiving federal financial assistance that newborn infants
with handicaps such as Down's syndrome were protected by § 504. 47 Fed.Reg. 26027 (1982). [Footnote 6]
This notice was followed, on March 7, 1983, by an "Interim Final Rule" contemplating a "vigorous federal role." 48 Fed.Reg. 9630. The Interim Rule required health care providers receiving federal financial assistance to post
"in a conspicuous place in each delivery ward, each maternity ward, each pediatric ward, and each nursery, including each intensive care nursery,"
a notice advising of the applicability of § 504 and the availability of a telephone "hotline" to report suspected violations of the law to HHS. Id. at 9631. Like the Final Rules, the Interim Rule also provided for expedited compliance actions and expedited access to records and facilities when, "in the judgment of the responsible Department official," immediate action or access was "necessary to protect the life or health of a handicapped individual." Id. at 9632. The Interim Rule took effect on March 22.
On April 6, 1983, respondents American Hospital Association et al. filed a complaint in the Federal District Court for the Southern District of New York seeking a declaration that the Interim Final Rule was invalid and an injunction against its enforcement. Little more than a week later, on April 14, in a similar challenge brought by the American Academy of Pediatrics and other medical institutions, the Federal District Court for the District of Columbia declared the Interim Final Rule "arbitrary and capricious, and promulgated in violation of the Administrative Procedure Act." American Academy of Pediatrics v. Heckler, 561 F.Supp. 395, 404 (1983). The District Judge in that case "conclude[d] that haste and inexperience ha[d] resulted in agency action based on inadequate consideration" of several relevant concerns
and, in the alternative, found that the Secretary had improperly failed to solicit public comment before issuing the Rule. Id. at 399-401.
On July 5, 1983, the Department issued new "Proposed Rules" on which it invited comment. Like the Interim Final Rule, the Proposed Rules required hospitals to post informational notices in conspicuous places and authorized expedited access to records to be followed, if necessary, by expedited compliance action. 48 Fed.Reg. 30851. In a departure from the Interim Final Rule, however, the Proposed Rules required federally assisted state child protective services agencies to utilize their "full authority pursuant to State law to prevent instances of medical neglect of handicapped infants." Ibid. Mandated procedures mirrored those contained in the Final Rules described above. Ibid. The preamble and appendix to the Proposed Rules did not acknowledge that hospitals and physicians lack authority to perform treatment to which parents have not given their consent. [Footnote 7]
After the period for notice and comment had passed, HHS, on December 30, 1983, promulgated the Final Rules and announced that they would take effect on February 13, 1984. On March 12 of that year, respondents American Hospital Association et al. amended their complaint, and respondents American Medical Association et al. filed suit, to declare the new regulations invalid and to enjoin their enforcement. The actions were consolidated in the Federal District Court for the Southern District of New York, which awarded the requested relief on the authority of the decision of the United States Court of Appeals for the Second Circuit in United States v. University Hospital, 729 F.2d 144 (1984). American Hospital Assn. v. Heckler, 585 F.Supp. 541 (1984); App. to Pet. for Cert. 50a. On appeal, the parties agreed that the reasoning of the Court of Appeals in University Hospital, if valid, required a judgment against the Government in this case. [Footnote 8] In accordance with its earlier decision, the Court of Appeals summarily affirmed the District Court. 694 F.2d 676 (1984). Since the judgment here thus rests entirely on the reasoning of University Hospital, it is appropriate to examine that case now.
On October 11, 1983, after the Department's Interim Final Rule had been declared invalid but before it had promulgated the Final Rules challenged here, a child with multiple congenital defects known as "Baby Jane Doe" was born in Long
Island, New York, and was promptly transferred to University Hospital for corrective surgery. After consulting with physicians and other advisers, the parents decided to forgo corrective surgery that was likely to prolong the child's life, but would not improve many of her handicapping conditions.
On October 16, 1983, an unrelated attorney named Washburn filed suit in the New York Supreme Court, seeking the appointment of a guardian ad litem for the infant who would direct the hospital to perform the corrective surgery. The trial court granted that relief on October 20, but was reversed the following day by the Appellate Division which found that the "concededly concerned and loving parents" had "chosen one course of appropriate medical treatment over another," and made an informed decision that was "in the best interest of the infant." Weber v. Stony Brook Hospital, 95 App. Div.2d 587, 589, 467 N.Y.S.2d 685, 687 (per curiam). On October 28, the New York Court of Appeals affirmed, but on the ground that the trial court should not have entertained a petition to initiate child neglect proceedings by a stranger who had not requested the aid of the responsible state agency. Weber v. Stony Brook Hospital, 60 N.Y.2d 208, 211-213, 456 N.E.2d 1186, 1187-1188 (per curiam).
While the state proceedings were in progress, on October 19, HHS received a complaint from a "private citizen" that Baby Jane Doe was being discriminatorily denied medically indicated treatment. HHS promptly referred this complaint to the New York State Child Protective Service. (The agency investigated the charge of medical neglect, and soon thereafter concluded that there was no cause for state intervention.) In the meantime, before the State Child Protective Service could act, HHS, on October 22, 1983, made repeated requests of the hospital to make its records available for inspection in order to determine whether the hospital was in compliance with § 504. The hospital refused the requests
and advised HHS that the parents had not consented to a release of the records.
Subsequently, on November 2, 1983, the Government filed suit in Federal District Court invoking its general authority to enforce § 504 and 45 CFR § 84.61 (1985), a regulation broadly authorizing access to information necessary to ascertain compliance. The District Court allowed the parents to intervene as defendants, expedited the proceeding, and ruled against the Government. It reasoned that the Government had no right of access to information, because the record clearly established that the hospital had not violated the statute. United States v. University Hospital, State Univ. of N.Y. at Stony Brook, 575 F.Supp. 607, 614 (EDNY). Since the uncontradicted evidence established that the hospital "ha[d] at all times been willing to perform the surgical procedures in question, if only the parents . . . would consent," the hospital
"failed to perform the surgical procedures in question, not because Baby Jane Doe [wa]s handicapped, but because her parents ha[d] refused to consent."
The Court of Appeals affirmed. In an opinion handed down on February 23, 1984, six weeks after promulgation of the Final Rules, it agreed with the District Court that "an agency is not entitled to information sought in an investigation that overreaches the authority Congress has given.'" 729 F.2d at 150 (quoting Oklahoma Press Publishing Co. v. Walling,327 U. S. 186, 327 U. S. 217 (1946)). It further held that, although Baby Jane Doe was a "handicapped individual," she was not "otherwise qualified" within the meaning of § 504 because, "where medical treatment is at issue, it is typically the handicap itself that gives rise to, or at least contributes to, the need for services;" as a result "the `otherwise qualified' criterion of section 504 cannot be meaningfully applied to a medical treatment decision." 729 F.2d at 156. For the same reason, the Court of Appeals rejected the Government's argument that Baby Jane Doe had been "subjected to discrimination" under § 504:
"Where the handicapping condi
tion is related to the condition(s) to be treated, it will rarely, if ever, be possible to say with certainty that a particular decision was 'discriminatory.'"
Id. at 157. The difficulty of applying § 504 to individual medical treatment decisions confirmed the Court of Appeals in its view that
"[C]ongress never contemplated that Section 504 of the Rehabilitation Act would apply to treatment decisions involving defective newborn infants when the statute was enacted in 1973, when it was amended in 1974, or at any subsequent time."
Id. at 161. It therefore rejected "the far-reaching position advanced by the government in this case," and concluded that, until Congress had spoken, "it would be an unwarranted exercise of judicial power to approve the type of investigation that ha[d] precipitated this lawsuit." Ibid.
Judge Winter dissented. He pointed out that § 504 was patterned after § 601 of the Civil Rights Act of 1964, which prohibits discrimination on the basis of race in federally funded programs, and asserted that a refusal to provide medical treatment because of a person's handicapping condition is as clearly covered by § 504 as a refusal based on a person's race is covered by § 601:
"A judgment not to perform certain surgery because a person is black is not a bona fide medical judgment. So too, a decision not to correct a life-threatening digestive problem because an infant has Down's Syndrome is not a bona fide medical judgment. The issue of parental authority is also quickly disposed of. A denial of medical treatment to an infant because the infant is black is not legitimated by parental consent."
Id. at 162.
The Government did not file a certiorari petition in University Hospital. It did, however, seek review of the judgment in this case. We granted certiorari, 472 U.S. 1016 (1985), and we now affirm.
The Solicitor General is correct that "handicapped individual," as used in § 504, includes an infant who is born with a congenital defect. If such an infant is "otherwise qualified" for benefits under a program or activity receiving federal financial assistance, § 504 protects him from discrimination "solely by reason of his handicap." [Footnote 9] It follows, under our decision in Alexander v. Choate,469 U. S. 287, 469 U. S. 301 (1985), that handicapped infants are entitled to "meaningful access" to medical services provided by hospitals, and that a hospital rule or state policy denying or limiting such access would be subject to challenge under § 504.
However, no such rule or policy is challenged, or indeed has been identified, in this case. Nor does this case, in contrast to the University Hospital litigation, involve a claim that any specific individual treatment decision violates § 504. This suit is not an enforcement action, and, as a consequence, it is not necessary to determine whether § 504 ever applies to individual medical treatment decisions involving handicapped infants. Respondents brought this litigation to challenge the four mandatory components of the Final Rules on their face, [Footnote 10] and the Court of Appeals' judgment which we review merely affirmed the judgment of the District Court which
"declared invalid and enjoined enforcement of [the final] regulations,
purportedly promulgated pursuant to section 504 of the Rehabilitation Act of 1973, 29 U.S.C. § 794 (1982)."
App. to Pet. for Cert. 2a. [Footnote 11] The specific question presented by this
case, then, is whether the four mandatory provisions of the Final Rules are authorized by § 504.
It is an axiom of administrative law that an agency's explanation of the basis for its decision must include "a rational connection between the facts found and the choice made.'" Motor Vehicle Mfrs. Assn. v. State Farm Mut. Automobile Ins. Co.,463 U. S. 29, 463 U. S. 43 (1983) (quoting Burlington Truck Lines, Inc. v. United States,371 U. S. 156, 371 U. S. 168 (1962)). [Footnote 12] Agency deference has not come so far that we will uphold regulations whenever it is possible to "conceive a basis" for administrative action. To the contrary, the "presumption of
regularity afforded an agency in fulfilling its statutory mandate" is not equivalent to "the minimum rationality a statute must bear in order to withstand analysis under the Due Process Clause." Motor Vehicle Mfrs. Assn. v. State Farm Mut. Automobile Ins. Co., 463 U.S. at 463 U. S. 43, n. 9. Thus, the mere fact that there is "some rational basis within the knowledge and experience of the [regulators]," United States v. Carolene Products Co.,304 U. S. 144, 304 U. S. 152 (1938) (footnote omitted), under which they "might have concluded" that the regulation was necessary to discharge their statutorily authorized mission, Williamson v. Lee Optical Co.,348 U. S. 483, 348 U. S. 487 (1955), will not suffice to validate agency decisionmaking. See Industrial Union Dept. v. American Petroleum Inst.,448 U. S. 607, 448 U. S. 639-659 (1980) (opinion of STEVENS, J.); Burlington Truck Lines, Inc. v. United States,371 U. S. 156, 371 U. S. 169 (1962). Our recognition of Congress' need to vest administrative agencies with ample power to assist in the difficult task of governing a vast and complex industrial Nation carries with it the correlative responsibility of the agency to explain the rationale and factual basis for its decision, even though we show respect for the agency's judgment in both.
Before examining the Secretary's reasons for issuing the Final Rules, it is essential to understand the preexisting state law framework governing the provision of medical care to handicapped infants. In broad outline, state law vests decisional responsibility in the parents, in the first instance, subject to review in exceptional cases by the State acting as parens patriae. [Footnote 13] Prior to the regulatory activity culminating
in the Final Rules, the Federal Government was not a participant in the process of making treatment decisions for newborn infants. We presume that this general framework was familiar to Congress when it enacted § 504. See Cannon v. University of Chicago,441 U. S. 677, 441 U. S. 696-697 (1979). It therefore provides an appropriate background for evaluating the Secretary's action in this case.
The Secretary has identified two possible categories of violations of § 504 as justifications for federal oversight of handicapped infant care. First, he contends that a hospital's refusal to furnish a handicapped infant with medically beneficial treatment "solely by reason of his handicap" constitutes unlawful discrimination. Second, he maintains that a hospital's failure to report cases of suspected medical neglect to a
state child protective services agency may also violate the statute. We separately consider these two possible bases for the Final Rules. [Footnote 14]
In the immediate aftermath of the Bloomington Baby Doe incident, the Secretary apparently proceeded on the assumption that a hospital's statutory duty to provide treatment to handicapped infants was unaffected by the absence of parental consent. See supra at 476 U. S. 617-619. He has since abandoned that view. Thus, the preamble to the Final Rules correctly states that, when
"a non-treatment decision, no matter how discriminatory, is made by parents, rather than by the hospital, section 504 does not mandate that the hospital unilaterally overrule the parental decision and provide treatment notwithstanding the lack of consent."
49 Fed.Reg. 1631 (1984). A hospital's withholding of treatment when no parental consent has been given cannot violate § 504, for without the consent of the parents or a surrogate decisionmaker, the infant is neither "otherwise qualified" for treatment nor has he been denied care "solely by reason of his handicap." [Footnote 15] Indeed, it would almost certainly be a tort as a matter of state law to operate on an infant without parental consent. This analysis makes clear that the Government's heavy reliance on the analogy to race-based refusals which violate § 601
of the Civil Rights Act is misplaced. If, pursuant to its normal practice, a hospital refused to operate on a black child whose parents had withheld their consent to treatment, the hospital's refusal would not be based on the race of the child even if it were assumed that the parents based their decision entirely on a mistaken assumption that the race of the child made the operation inappropriate.
Now that the Secretary has acknowledged that a hospital has no statutory treatment obligation in the absence of parental consent, it has become clear that the Final Rules are not needed to prevent hospitals from denying treatment to handicapped infants. The Solicitor General concedes that the administrative record contains no evidence that hospitals have ever refused treatment authorized either by the infant's parents or by a court order. Tr. of Oral Arg. 8. Even the Secretary never seriously maintained that posted notices, "hotlines," and emergency on-site investigations were necessary to process complaints against hospitals that might refuse treatment requested by parents. The parental interest in calling such a refusal to the attention of the appropriate authorities adequately vindicates the interest in enforcement of § 504 in such cases, just as that interest obviates the need for a special regulation to deal with refusals to provide treatment on the basis of race which may violate § 601 of the Civil Rights Act.
The Secretary's belated recognition of the effect of parental nonconsent is important, because the supposed need for federal monitoring of hospitals' treatment decisions rests entirely on instances in which parents have refused their consent. Thus, in the Bloomington, Indiana, case that precipitated the Secretary's enforcement efforts in this area, [Footnote 16] as
well as in the University Hospital case that provided the basis for the summary affirmance in the case now before us, [Footnote 17] the hospital's failure to perform the treatment at issue rested on the lack of parental consent. The Secretary's own summaries of these cases establish beyond doubt that the respective hospitals did not withhold medical care on the basis of handicap, and therefore did not violate § 504; as a result, they provide no support for his claim that federal regulation is needed in order to forestall comparable cases in the future.
The Secretary's initial failure to recognize that withholding of consent by parents does not equate with discriminatory denial of treatment by hospitals likewise undermines the Secretary's findings in the preamble to his proposed rulemaking. In that statement, the Secretary cited four sources in support of the claim that "Section 504 [is] not being uniformly followed." 48 Fed.Reg. 30847 (1983). None of the cited examples, however, suggests that recipients of federal financial assistance, as opposed to parents, had withheld medical care on the basis of handicap. [Footnote 18]
Notwithstanding the ostensible recognition in the preamble of the effect of parental nonconsent on a hospital's obligation to provide care, in promulgating the Final Rules, the Secretary persisted in relying on instances in which parents had refused consent to support his claim that, regardless of its "magnitude," there is sufficient evidence of "illegality" to justify "establishing basic mechanisms to allow for effective enforcement of a clearly applicable statute." 49 Fed.Reg. 1645 (1984). We have already discussed one source of this evidence -- "the several specific cases cited in the preamble to the proposed rule." Ibid. Contrary to the Secretary's belief, these cases do not "support the proposition that handicapped infants may be subjected to unlawful discrimination." Ibid. In addition to the evidence relied on in prior notices, the Secretary included a summary of the 49 "Infant Doe
cases" that the Department had processed before December 1, 1983. [Footnote 19] Curiously, however, by the Secretary's own admission none of the 49 cases had "resulted in a finding of discriminatory withholding of medical care." Id. at 1649. In fact, in the entire list of 49 cases there is no finding that a hospital failed or refused to provide treatment to a handicapped infant for which parental consent had been given. [Footnote 20]
Notwithstanding this concession, the Secretary "believes three of these cases demonstrate the utility of the procedural
mechanisms called for in the final rules." Ibid.Accord, ibid. ("[T]hese cases provide additional documentation of the need for governmental involvement and the appropriateness of the procedures established by the final rules"). However, these three cases, which supposedly provide the strongest support for federal intervention, fail to disclose any discrimination against handicapped newborns in violation of § 504. For example, in Robinson, Illinois, the Department conducted an on-site investigation when it learned that the "hospital (at the parents' request) failed to perform necessary surgery." Id. at 1646 (emphasis added). After "[t]he parents refused consent for surgery," "the hospital referred the matter to state authorities, who accepted custody of the infant and arranged for surgery and adoption," all "in compliance with section 504." Ibid. The Secretary concluded that "the involvement of the state child protective services agency," at the behest of the hospital,
"was the most important element in bringing about corrective surgery for the infant. . . . Had there been no governmental involvement in the case, the outcome might have been much less favorable."
Id. at 1649 (emphasis added). [Footnote 21]
The Secretary's second example illustrates with even greater force the effective and nondiscriminatory functioning of state mechanisms and the consequent lack of support for federal intervention. In Daytona Beach, Florida, the Department's hotline received a complaint of medical neglect of a handicapped infant; immediate contact with the hospital and state agency revealed that "the parents did not consent to surgery" for the infant. Id. at 1648. Notwithstanding this information, which was confirmed by both the hospital and the state agency, and despite the fact that the state agency had "obtained a court order to provide surgery" the day before HHS was notified, the Department conducted an
on-site investigation. Ibid. In the third case, in Colorado Springs, Colorado, the Department intervened so soon after birth that "the decisionmaking process was in progress at the time the OCR [Office of Civil Rights] inquiry began," and "it is impossible to say the surgery would not have been provided without this involvement." Id. at 1649. "However," the Secretary added, "the involvement of OCR and the OCR medical consultant was cooperatively received by the hospital, and apparently constructive." Ibid.
In sum, there is nothing in the administrative record to justify the Secretary's belief that "discriminatory withholding of medical care" in violation of § 504 provides any support for federal regulation: in two of the cases (Robinson, Illinois, and Daytona Beach, Florida), the hospital's refusal was based on the absence of parental consent, but the parents' decision was overridden by state authorities and the operation was performed; in the third case (Colorado Springs, Colorado), it is not clear whether the parents would have given their consent or not, but the corrective surgery was in fact performed. [Footnote 22]
As a backstop to his manifestly incorrect perception that withholding of treatment in accordance with parental instructions necessitates federal regulation, the Secretary contends that a hospital's failure to report parents' refusals to consent to treatment violates § 504, and that past breaches of this kind justify federal oversight.
By itself, § 504 imposes no duty to report instances of medical neglect -- that undertaking derives from state law reporting obligations or a hospital's own voluntary practice. Although a hospital's selective refusal to report medical neglect of handicapped infants might violate § 504, [Footnote 23] the Secretary
has failed to point to any specific evidence that this has occurred. The 49 actual investigations summarized in the preamble to the Final Rules do not reveal any case in which a hospital either failed, or was accused of failing, to make an appropriate report to a state agency. [Footnote 24] Nor can we accept the Solicitor General's invitation to infer discriminatory nonreporting from the studies cited in the Secretary's proposed rulemaking. Even assuming that cases in which parents have withheld consent to treatment for handicapped infants have gone unreported, that fact alone would not prove
that the hospitals involved had discriminated on the basis of handicap, rather than simply failed entirely to discharge their state law reporting obligations, if any, a matter which lies wholly outside the nondiscrimination mandate of § 504.
The particular reporting mechanism chosen by the Secretary -- indeed the entire regulatory framework imposed on state child protective services agencies -- departs from the nondiscrimination mandate of § 504 in a more fundamental way. The mandatory provisions of the Final Rules omit any direct requirement that hospitals make reports when parents refuse consent to recommended procedures. [Footnote 25] Instead, the Final Rules command state agencies to require such reports, regardless of the state agencies' own reporting requirements (or lack thereof). 45 CFR § 84.55(c)(1)(i) (1985). Far from merely preventing state agencies from remaining calculatedly indifferent to handicapped infants while they tend to the needs of the similarly situated nonhandicapped, the Final Rules command state agencies to utilize their "full authority" to "prevent instances of unlawful medical neglect of handicapped infants." § 84.55(c)(1). The Rules effectively make medical neglect of handicapped newborns a state investigative priority, possibly forcing state agencies to shift scarce resources away from other enforcement activities -- perhaps even from programs designed to protect handicapped children outside hospitals. The Rules also order state agencies to "immediate[ly]" review reports from hospitals, § 84.55(c)(1)(iii), to conduct "on-site investigation[s]," ibid., and to take legal action "to compel the provision of necessary nourishment and medical treatment,"
§ 84.55(c)(1)(iv) -- all without any regard to the procedures followed by state agencies in handling complaints filed on behalf of nonhandicapped infants. These operating procedures were imposed over the objection of several state child protective services agencies that the requirement that they turn over reports to HHS "conflicts with the confidentiality requirements of state child abuse and neglect statutes," 49 Fed.Reg. 1627 (1984) -- thereby requiring under the guise of nondiscrimination a service which state law denies to the nonhandicapped. [Footnote 26]
The complaint-handling process the Secretary would impose on unwilling state agencies is totally foreign to the authority to prevent discrimination conferred on him by § 504. "Section 504 seeks to assure evenhanded treatment," Alexander v. Choate, 469 U.S. at 469 U. S. 304; "neither the language, purpose, nor history of § 504 reveals an intent to impose an affirmative action obligation" on recipients of federal financial assistance, Southeastern Community College v. Davis,442 U. S. 397, 442 U. S. 411 (1979). [Footnote 27] The Solicitor General also recognizes that § 504 is concerned with discrimination, and with discrimination alone. In his attempt to distinguish the Secretary's 1976 determination that it "is beyond the authority of section 504" to promulgate regulations
and appropriate psychiatric care or safe and humane living conditions for persons institutionalized because of handicap or concerning payment of fair compensation to patients who perform work,"
41 Fed.Reg. 29548, 29559, the Solicitor General explains:
"This conclusion of course was consistent with the fact that, as relevant here, Section 504 is essentially concerned only with discrimination in the relative treatment of handicapped and nonhandicapped persons, and does not confer any absolute right to receive particular services or benefits under federally assisted programs."
Brief for Petitioner 40, n. 33. See also 48 Fed.Reg. 30846 (1983) ("Section 504 is in essence an equal treatment, nondiscrimination standard"). [Footnote 28]
The Final Rules, however, impose just the sort of absolute obligation on state agencies that the Secretary had previously disavowed. The services state agencies are required to make available to handicapped infants are in no way tied to the level of services provided to similarly situated nonhandicapped infants. Instead, they constitute an "absolute right to receive particular services or benefits" under a federally assisted program. Even if a state agency were scrupulously impartial as between the protection it offered handicapped and nonhandicapped infants, it could still be denied federal funding for failing to carry out the Secretary's mission with sufficient zeal.
It is no answer to state, as does the Secretary, that these regulations are a necessary "metho[d] . . . to give reasonable assurance' of compliance." 49 Fed.Reg. 1627 (1984) (quoting 45 CFR § 80.4(b), which requires state agencies to
report on their compliance with Title VI). For while the Secretary can require state agencies to document their own compliance with § 504, nothing in that provision authorizes him to commandeer state agencies to enforce compliance by other recipients of federal funds (in this instance, hospitals). State child protective services agencies are not field offices of the HHS bureaucracy, and they may not be conscripted against their will as the foot soldiers in a federal crusade. [Footnote 29] As we stated in Alexander v. Choate, 469 U.S. at 469 U. S. 307,
"nothing in the pre- or post-1973 legislative discussion of § 504 suggests that Congress desired to make major inroads on the States' longstanding discretion to choose the proper mix"
of services provided by state agencies.
Section 504 authorizes any head of an Executive Branch agency -- regardless of his agency's mission or expertise -- to promulgate regulations prohibiting discrimination against the handicapped. See S.Rep. No. 93-1297, pp. 39-40 (1974). [Footnote 30] As a result of this rulemaking authority, the Secretary of
"substantial leeway to explore areas in which discrimination against the handicapped pos[es] particularly significant problems and to devise regulations to prohibit such discrimination."
Alexander v. Choate, 469 U.S. at 469 U. S. 304, n. 24.
Even according the greatest respect to the Secretary's action, however, deference cannot fill the lack of an evidentiary foundation on which the Final Rules must rest. The Secretary's basis for federal intervention is perceived discrimination against handicapped infants in violation of § 504, and yet the Secretary has pointed to no evidence that such discrimination occurs. Neither the fact that regulators generally may rely on generic information in a particular field or comparable experience gained in other fields, nor the fact that regulations may be imposed for preventative or prophylactic reasons, can substitute for evidence supporting the Secretary's own chosen rationale. For the principle of agency accountability recited earlier means that "an agency's action must be upheld, if at all, on the basis articulated by the agency itself." Motor Vehicle Mfrs. Assn. v. State Farm Mut. Automobile Ins. Co., 463 U.S. at 463 U. S. 50 (citations omitted). [Footnote 31]
The need for a proper evidentiary basis for agency action is especially acute in this case, because Congress has failed to indicate, either in the statute or in the legislative history, that it envisioned federal superintendence of treatment decisions traditionally entrusted to state governance.
"[W]e must assume that the implications and limitations of our federal system constitute a major premise of all congressional legislation, though not repeatedly recited therein."
of Jackson, J.). [Footnote 32] Congress therefore "will not be deemed to have significantly changed the federal-state balance," United States v. Bass,404 U. S. 336, 404 U. S. 349 (1971) -- or to have authorized its delegates to do so -- "unless otherwise the purpose of the Act would be defeated," FTC v. Bunte Bros., Inc.,312 U. S. 349, 312 U. S. 351 (1941). [Footnote 33] Although the nondiscrimination
mandate of § 504 is cast in language sufficiently broad to suggest that the question is
"not one of authority, but of its appropriate exercise[,] [t]he propriety of the exertion of the authority must be tested by its relation to the purpose of the [statutory] grant and with suitable regard to the principle that, whenever the federal power is exerted within what would otherwise be the domain of state power, the justification of the exercise of the federal power must clearly appear."
Florida v. United States,282 U. S. 194, 282 U. S. 211-212 (1931). Accord, Chicago, M., St. P. & P. R. Co. v. Illinois,355 U. S. 300, 355 U. S. 306 (1958). That is, "it must appear that there are findings, supported by evidence, of the essential facts . . . which would justify [the Secretary's] conclusion." Florida v. United States, 282 U.S. at 282 U. S. 212. The administrative record does not contain the reasoning and evidence that is necessary to sustain federal intervention into a historically state-administered decisional process that appears -- for lack of any evidence to the contrary -- to be functioning in full compliance with § 504.
The history of these regulations exposes the inappropriateness of the extraordinary deference -- virtually a carte blanche -- requested by the Government. The Secretary's
present reading of § 504 has evolved only after previous patently erroneous interpretations had been found wanting. [Footnote 34] The checkered history of these regulations began in 1982, when the Department notified hospitals that they would violate § 504 if they "allow[ed] an infant" to remain in their care after "the infant's parents or guardian [had withheld consent to] treatment or nourishment discriminatorily." 47 Fed.Reg. 26027. By the time the Proposed Rules were announced one year later, the Secretary had abandoned that construction. But the Department substituted the equally untenable view that "the basic provision of nourishment, fluids, and routine nursing care" was "not an option for medical judgment," and that
"[t]he decision to forego medical treatment of a correctable life-threatening defect because an infant also suffers from a permanent irremediable handicap that is not life-threatening, such as mental retardation, is a violation of Section 504,"
insinuating by omission that lack of parental consent did not alter the hospital's obligation to provide corrective surgery. 48 Fed.Reg. 30852, 30847 (1983). Although the preamble to the Final Rules corrects the prior erroneous signals from the Department that § 504 authorizes it to override parental decisions and to save the lives of handicapped infants, it persists in advocating federal regulation on the basis of treatment denials precipitated by refusals of parental consent and on the ground that its experience with the Baby Doe hotline has demonstrated that "the assumption that handicapped infants will receive medically beneficial treatment is not always justified." 49 Fed.Reg. 1646 (1984).
This response, together with its previous remarks, makes irresistible the inference that the Department regards its
mission as one principally concerned with the quality of medical care for handicapped infants, rather than with the implementation of § 504. We could not quarrel with a decision by the Department to concentrate its finite compliance resources on instances of life-threatening discrimination, rather than instances in which merely elective care has been withheld. Cf. Heckler v. Chaney,470 U. S. 821 (1985). But nothing in the statute authorizes the Secretary to dispense with the law's focus on discrimination, and instead to employ federal resources to save the lives of handicapped newborns without regard to whether they are victims of discrimination by recipients of federal funds or not. Section 504 does not authorize the Secretary to give unsolicited advice either to parents, to hospitals, or to state officials who are faced with difficult treatment decisions concerning handicapped children. We may assume that the "qualified professionals" employed by the Secretary may make valuable contributions in particular cases, but neither that assumption nor the sincere conviction that an immediate "on-site investigation" is "necessary to protect the life or health of a handicapped individual" can enlarge the statutory powers of the Secretary.
The administrative record demonstrates that the Secretary has asserted the authority to conduct on-site investigations, to inspect hospital records, and to participate in the decisional process in emergency cases in which there was no colorable basis for believing that a violation of § 504 had occurred or was about to occur. The District Court and the Court of Appeals correctly held that these investigative actions were not authorized by the statute, and that the regulations which purport to authorize a continuation of them are invalid.
The judgment of the Court of Appeals is affirmed.
It is so ordered.
CHIEF JUSTICE BURGER concurs in the judgment.
JUSTICE REHNQUIST took no part in the consideration or decision of this case.
"Handicapped individual" is defined in § 7(7)(B) of the Act, as amended, as
"any person who (i) has a physical or mental impairment which substantially limits one or more of such person's major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment."
92 Stat. 2985, 29 U.S.C. § 706(7)(B).
Respondents include the Hospital Association of New York State, the American College of Obstetricians and Gynecologists, the Association of American Medical Colleges, the American Academy of Family Physicians, and certain individual physicians.
Margaret Heckler occupied the position of Secretary throughout the rulemaking period. On December 13, 1986, after certiorari had been granted, Dr. Otis Bowen assumed that position. Despite the fact that Dr. Bowen was not responsible for promulgation of the Final Rules, for the sake of continuity, our references assume that he was. For ease of reference, we refer to the Secretary, the Department, and HHS interchangeably.
In subsection (a), the Department "encourages each recipient health care provider that provides health care services to infants" to establish an "Infant Care Review Committee (ICRC)" to assist in the development of treatment standards for handicapped infants and to provide assistance in making individual treatment decisions. 45 CFR § 84.55(a) (1985). In subsection (f), the Department describes its version of a model ICRC.
Subsection (f) also provides that "[t]he activities of the ICRC will be guided by . . . [t]he interpretative guidelines of the Department." 45 CFR § 84.55(f)(1)(ii)(A) (1985). These guidelines, which are "illustrative" and "do not independently establish rules of conduct," pt. 84, Appendix C,