Disability and Health Law
Abstract and Keywords
This chapter examines the impact of disability law on certain areas of health law and the implications for people with disabilities. It first considers a number of issues in the provider-patient relationship with respect to disability rights, including informed consent and decision-making both at the beginning of life and at the end of life. In particular, it discusses questions concerning prenatal testing and reproductive liberty, as well as the so-called “Baby Doe” regulations. It then explores the impact of the Patient Protection and Affordable Care Act on access to healthcare, along with statutory definitions of disability. Statutes employing functional definitions of disability are compared with statutes employing condition-based definitions of disability. The chapter concludes by focusing on Medicare and the obligations of providers and programs under the Americans with Disabilities Act.
Keywords: disability law, health law, people with disabilities, provider-patient relationship, informed consent, Patient Protection and Affordable Care Act, healthcare, disability, Medicare, Americans with Disabilities Act
Health law in the United States developed largely independently from disability law and theory. Yet today the two intersect in both complementary and conflicting ways. Core to understanding these intersections are contrasting conceptualizations of disability and disability law.
On the so-called “medical model” of disability, differences associated with disability are seen as mental or physical impairments that it is the task of healthcare to address. Concomitantly, disability law is understood as addressing the needs of people with disabilities for support in executing the activities of daily life; on this view, disability law is largely welfarist and paternalistic in character. To the extent that U.S. health law has been concerned with needs of people with disabilities for care, it would appear aligned primarily with welfarist perspectives.
Pursuant to the contrasting “social model” of disability, arrangements in the built and social worlds are critical to how well people with disabilities are able to function, and disability law is a form of civil rights law according people with disabilities meaningful access to social life on the terms others enjoy. What Martha Minow called “dilemmas of difference”1—how equality requires different treatment in some cases of relevant differences between groups of people—are at play here as well: If differences legitimate different treatment, differences in support can be seen as a civil right rather than as a special privilege for someone in need.
Health law, as traditionally taught in American law schools, was a combination of the constitutional law, tort, contract, and regulatory issues affecting healthcare providers and the institutions in which they work. Disability law was primarily welfare or disability rights law, affecting healthcare at best tangentially. Disability advocates, moreover, resisted the medicalization of disability and the incorporation of approaches from healthcare into disability rights as perpetuating welfarist paradigms. More recently, commentators have advocated (p. 376) moving disability rights perspectives into health law, pressing the incorporation of social justice concerns, especially for access to care.2
Disability law itself has two major strains. The welfarist strain involves provision of benefits such as health insurance, social security, and related programs. This strain of disability law originated in civil war pensions for disabled veterans and continues today in such public programs as workers’ compensation, disability insurance, Medicaid, Medicare for qualifying persons who are permanently disabled, and Social Security Disability Insurance (SSDI). A more recent strain in disability-related law is civil rights protection for people with disabilities, including prohibitions on employment discrimination, discrimination in public services such as Medicaid, and discrimination in public accommodations such as physicians’ offices or hospitals. Each of these strains of disability law impacts a wide range of issues in health law.
Take medical malpractice as just one example. In his famous article on the disabled in the law of tort, Jacobus tenBroek argued that tort law should entitle people with disabilities to full participation in the life of the community and not submit them to double standards.3 On this view, standards of care that would countenance different treatment of people because of their disabilities, or damages remedies that would discount harms on account of disabilities, are discriminatory and a matter for civil rights to address.
The field of health law is protean, and we have perforce been selective. We emphasize areas of health law where disability law has had important impacts, areas of health law with serious implications for people with disabilities, and areas of health law undergoing rapid change. The impact of the Patient Protection and Affordable Care Act (ACA) on access to care is an especially significant development in the intersection between these fields.
I Disability and Classic Issues in the Provider-Patient Relationship
In the second half of the twentieth century, while bioethics was developing as an independent field, health law confronted an important range of cases about patients’ rights and the provider-patient relationship. Many of these cases have become classics of bioethics as well as health law. This section considers some of these enduring issues in the provider-patient relationship as they interconnect with disability rights: informed consent, decision-making at the beginning of life, and decision-making at the end of life.
Much of this litigation arose during the time of concern for civil rights generally but before the full extension of this law to disability discrimination.4 In Cleburne, the central (p. 377) constitutional law case for disability decided in 1985, persons with intellectual disabilities were characterized as being exceptionally dependent and needing benevolent public support. This construction led to the conclusions that disability does not delineate a suspect classification and that laws treating persons with disabilities differently do not warrant strict scrutiny.5 Cleburne involved the application of local zoning regulations to bar locating a group home for people with intellectual disabilities. In refusing to characterize disability as a suspect class, the U.S. Supreme Court opined that state legislatures had generally acted benignly toward people with disabilities and that these efforts were to be applauded: “Such legislation thus singling out the retarded for special treatment reflects the real and undeniable differences between the retarded and others. That a civilized and decent society expects and approves such legislation indicates that governmental consideration of those differences in the vast majority of situations is not only legitimate but also desirable.”6
These contentions by the Court were met with a stinging dissent from Justice Marshall, who observed that “the mentally retarded have been subject to a ‘lengthy and tragic history’”7 and that “[f]or the retarded, just as for Negroes and women, much has changed in recent years, but much remains the same; out-dated statutes are still on the books, and irrational fears or ignorance, traceable to the prolonged social and cultural isolation of the retarded, continue to stymie recognition of the dignity and individuality of retarded people.”8 To be sure, the Court struck down the zoning ordinance in question as not even passing a rational basis test. But the welfarist views asserted by the Court about the exceptional needs of people with disabilities continue to this day and were apparent in much of the development of health law as it applied to providers and their patients.
a. Disability, Informed Consent, and Healthcare Decision-making
Informed consent to healthcare treatment is a core value in bioethics and a long-standing legal requirement.9 Treatment without consent is a battery, even if the patient receives benefit (the damages are nominal in such cases). Consent processes that do not meet the standard of care can be challenged as negligent. In some jurisdictions, this means that disclosures should be what the average reasonable provider discloses, and in others, this means what the average reasonable person would want to know. Average reasonable provider standards may incorporate judgments that are discriminatory but not recognized as such because of their prevalence in the profession. Average reasonable person standards have come under fire in other areas of law, such as sexual harassment, where they are charged with perpetuating perspectives of dominance. For example, standards of reasonableness about whether sexual advances are welcome may differ from male and female perspectives.10 The extent (p. 378) to which ideas of reasonableness in tort law reflect different perspectives11 might lead disability advocates to question whether the reasonable patient standard affords a standard of relevance to them.
Informed consent has been of uncertain value for people with disabilities, moreover, especially for people with intellectual disabilities. Decision-making capacity is a standard precondition for individuals to consent to their own healthcare, yet if people are too readily perceived to lack capacity, unwarranted paternalism may result. Guardianship, especially in its plenary form, extinguishes the legal power of individuals to enforce their own decisions and replaces them as decision-makers. Characterizing people with disabilities as a “vulnerable” population, however well meaning, may both reflect and foster such protectionist attitudes.12 The legal case of Mary Northern, anthologized in many bioethics texts, illustrates. Ms. Northern was a seventy-two-year-old woman with gangrene in both feet. When she refused amputation, the Tennessee Department of Human Services went to court to compel treatment. Despite her lucidity otherwise, the Tennessee Court of Appeals found her incompetent based on her physician’s testimony that she was “functioning on a psychotic level” with respect to her feet.13
Historical approaches to decision-making capacity treated it as an “either/or” determination, largely aimed at protecting people who could not protect themselves. More recent approaches emphasizing the rights of people with disabilities rather than their special needs prefer either limited guardianship or supported decision-making. In the United States, constitutional liberty protections support limited guardianship determinations, although this is frequently not realized in practice.14 The U.N. Convention on the Rights of Persons with Disabilities (CRPD)15 advances supported decision-making with persons with disabilities. The goal is to foster the individual’s ability to exercise legal capacity to the greatest possible extent, rather than to resort to judgments substituting choice by a proxy for choice by or with the person with disabilities.16 Some jurisdictions in Canada give legal recognition to supported decision–making, and this idea is beginning to garner support in the United States as well.17
Informed consent has also played an important role in the legal standards applied to participation of human subjects in research. Reflecting the World Medical Association (p. 379) Declaration of Helsinki18 and the Belmont Report,19 U.S. federal regulations for the protection of human subjects in research require protection of the autonomy of research subjects through informed consent.20 For persons not considered capable of informed consent, the regulations require special protection; the regulations do not single out disability in this way, although many institutions reviewing research do require such protections for people with cognitive impairments and people with mental disabilities. If these policies present unjustifiable barriers to people entering research studies or discourage valuable research about conditions affecting people with such impairments, however, people in these categories may lose benefits from research that could be valuable to them.21
b. Disability and the Beginning of Life: Prenatal Testing and Reproductive Liberty
Trisomy 21 (Down syndrome) and neural tube malformations are the conditions for which prenatal testing is most widely performed. Abortion is frequently the option chosen by parents when test results are positive. Yet the practice of letting newborns with these conditions die—also at one point accepted in the medical profession—met with outcry following a critical report in 1973 in the New England Journal of Medicine.22 Adrienne Asch—although a supporter of reproductive liberty and the right to abortion generally—powerfully argued that selective abortion for disability likewise treats disability unjustly.23 Opponents of selective abortion for disability are also concerned that parents choosing abortion may have been unduly influenced by biased and disparaging reports—framed as neutral and informative by health professionals—about the difficulties of parenting children with disabilities and about the children’s capabilities, prognoses, or quality of life. This approach is a critique of disability discrimination in reproductive liberty rather than a commitment to the right-to-life position found in much of the opposition to abortion.
The right to choose abortion remains a constitutionally protected liberty right, despite the many restrictions imposed on it by state legislatures.24 Nonetheless, some states have not repealed statutes prohibiting abortion that are enjoined from enforcement. These statutes may contain exceptions for the life of the mother or for fetal anomalies that are inconsistent with prolonged life but may not permit abortion on the basis of other disabilities.25
(p. 380) States also vary in their willingness to countenance lawsuits claiming that negligent failure to offer or negligent performance of prenatal testing is a wrong to either parents or child. In wrongful birth actions, a form of tort litigation, parents seek compensation for being damaged by physician or hospital negligence that resulted in giving birth to a disabled child. As damages, these parents claim the extra costs of raising a child with a disability over the costs of raising a nondisabled child. They may also claim their emotional distress at the child’s condition. Plaintiffs are most likely to be successful in these cases if they allege malpractice in correctly informing prospective parents of the results of prenatal tests or in failing to recommend genetic testing.26 Much less likely to be successful are cases in which the child sues for wrongful life, claiming that it was a wrong to her to have been born. Courts are reluctant to conclude that wrongful life plaintiffs would have been better off never having been brought into existence. In 1982 the California Supreme Court permitted a child to sue but limited the remedy to objective economic costs of the disability and also precluded damages for such subjective outcomes as general suffering or reduced quality of life due to disability.27 Several states have statutes barring parents’ claims that a child would not have been born alive but would have been aborted; these states thus will not permit parents to sue for negligent prenatal testing if they allege that but for the negligence they would have chosen abortion.28
c. Disability and the Beginning of Life: The “Baby Doe” Regulations
In the early 1980s, the federal government responded to public opinion prompted by cases in which infants were denied life-saving surgery due to their disabilities.29 The Reagan administration’s strategy to protect newborn infants against denial of medical treatment in hospitals on the basis of disability initially relied on regulatory action by the Department of Health and Human Services (HHS) under the Rehabilitation Act. The Secretary of HHS invoked Section 504 of the Rehabilitation Act, requiring nondiscriminatory access to federally funded programs and services, to prohibit recipients of federal funds from withholding nourishment or medically indicated treatment from a handicapped child solely because of the handicap.
The medical establishment fought adding such protection to extant statutory prohibitions of disability discrimination by successfully filing suit against HHS’s effort to create applicable regulations under Section 504. The HHS regulations prohibited federally funded hospitals from withholding nourishment or other medically beneficial treatment from newborns solely on the basis of their disabilities.30 The Court concluded that this regulation was arbitrary and capricious because hospitals had no power to impose medical treatment in the absence of parental consent and because HHS had no evidence hospitals ever withheld (p. 381) treatment from infants when parents consented.31 In so reasoning, the Court did not consider the possibility that the parents’ decisions had been influenced by discriminatory portrayals of their infants’ prospects by those involved in their treatment. Thus reasoning that there had been no violations of the Rehabilitation Act, the Court also rejected the federal government’s claim that it had the power to examine medical records to determine whether the Rehabilitation Act had been violated.32
Nor, the Court declared, did Congress intend Section 504 to confer any categorical entitlement to particular medical services or to influence states’ priorities in allocating medical resources.33
Congress proved ready to embed protective language directly into a statute that left no vagueness about legislative intent to provide for categorical intervention into the medical treatment of children with disabilities. Subsequently, in 1988 Congress amended the Child Abuse Prevention and Treatment Act (CAPTA) to require that, to be eligible for federal funding under this legislation, states must establish procedures to address reported medical neglect, “including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions.”34 Thus, the infants are protected from abuse, not from discrimination. These so-called “Baby Doe” rules define medical neglect as failure to respond to the infant’s life-threatening conditions by providing treatment, which, in reasonable medical judgment most likely will be effective in remedying such conditions, unless the infant is irreversibly comatose, or treatment would be futile in achieving the infant’s survival and thus would only prolong dying, or the treatment would be virtually futile and also would be inhumane.
Although the CAPTA language appears inflexible, in practice parents are invited to make decisions about continued treatment based on the child’s best interest judged against quality-of-life standards. Physicians are expected to advise parents of the options, expected benefits, risks, and limits of any proposed care; how the potential for human relationship is affected by the infant’s condition; and relevant information and answers to their questions.35 And families are supposed to apply these considerations to decide whether treatment, or withdrawal of treatment, is in the person’s best interest.
Very little enforcement activity has attended this version of the Baby Doe regulation. To date, only one court decision36 has invoked the regulation as legal precedent.37 Suing unsuccessfully under a theory of failure of informed consent, a family alleged that they should (p. 382) have been given data regarding their pre-term neonate’s risks of being disabled and that they therefore lacked fully informed opportunity to refuse consent for life-saving measures immediately after his birth. Further, no state has lost federal funds for violating CAPTA. Explanations include widespread professional support for applying the best interests standard to decision-making involving newborns and children, the possibility that there are few if any inappropriate nontreatment decisions, and continuing reluctance to intervene in parental decisions.38 There is also one case rejecting a family’s battery and negligence claims against a hospital, based on their refusal of consent for resuscitation prior to the child’s being born and their contention that the hospital’s life support interventions caused the child’s disabilities.39 In this case, the Texas Supreme Court stated that neither parents nor physicians could properly evaluate the child’s condition before she was born, and consequently a pre-birth decision by the parents could not prevail over a physician’s evaluation in an emergent situation post-birth. The Texas court also concluded that state law rather than federal funding authorities have jurisdiction over which situations require parental consent.
d. Disability and Decision-making at the End of Life
Decision-making with respect to life-sustaining treatment is an area of significant intersection and tension between health law and disability. Some disability advocates, such as Not Dead Yet, charge that themes in healthcare and bioethics such as quality-of-life judgments, cost-effectiveness measures, the need to control healthcare costs, and even autonomy, evidence outright discrimination against people with disabilities. Alicia Ouellette argues that bioethics has ignored these concerns to its peril.40 Other disability rights proponents argue that it is similarly discriminatory to prevent people with disabilities from exercising the full range of choices with respect to end-of-life decision-making.41 These issues are highly politicized, and, not surprisingly, health law has been caught in the middle.
That a patient is a person with a disability complicates end-of-life legal issues in two primary ways. One has to do with presumptions about the impact of disability on capacity for decision-making. The other has to do with presumptions about the impact of disability on quality of life. While these effects of disability are independent of each other, they often become entangled or at least entwined.
Being disabled can influence how a person dies. Individuals with cognitive disabilities –whether congenitally or from trauma, dementia, psychiatric, or other illnesses or injuries—may be judged deficient both in understanding and executive function and thereby be considered insufficiently autonomous to exercise the right to refuse aggressive end-of-life treatment by themselves. People with severe to profound cognitive disabilities beginning very early in life typically are judged incapable of formulating conceptions of their good and exercising executive judgment to pursue their goals. In such cases, guardians or other personal representatives are authorized to substitute their judgment as to the disabled person’s (p. 383) best interests or to construct conceptions of their good from what is known about the individual or about humans generally.
In cases of incapacitating traumatic neurological injury or neurological illness that onset later in life, a person’s former conceptualization of the good may be cited as decisive, as stated by the person in an advance directive or as reconstructed by a surrogate or guardian ad litem, under a theory of precedent autonomy. That is, the person’s decisions when capacitated are taken as decisive or at least a strong indication of the relevant judgments about the ongoing individual’s good. That precedent autonomy should prevail becomes problematic, however, where the now-disabled individual retains ability to express preferences clearly, but these differ from the choices the person formerly would have made.42
An important goal of the CRPD is to implement a human rights approach with inclusive social frameworks within which people with disabilities can—with any necessary reasonable and effective supports—work out how to live lives that are good for them.43 As discussed above, supported decision-making is a method for giving enhanced legal authority for collaboratively made decisions such as those an individual with moderate dementia might make interactively with family members’ assistance. It is voluntary, can be revoked at any time, and does not remove legal capacity. More formal models for supported decision-making, including for decisions about the end of life, have been developed in a number of jurisdictions outside of the United States.44
Disabilities that are not cognitive also have been advanced as reasons to deny the usual freedom to make decisions for one’s self about one’s end of life.45 One contention is that disabilities and illnesses warp reasoning about dying, despite the disabled individual’s well-balanced thinking in other respects. Another is that reasonable assessments of their own situations notwithstanding, individuals with disabilities have special obligations to act courageously that restrict how they may approach their own lives’ ends. Both versions suppose that disabled people’s troubled relationships with nondisabled society may too readily induce them to give up on living.
In 1983, Elizabeth Bouvia—a young woman with extensive dysfunction from cerebral palsy, dependent on others to execute essential activities of daily living, and suffering severe pain from arthritis as well—became a client of the American Civil Liberties Union (ACLU) for a lawsuit against the hospital where she resided to free her from being tube-fed, an intervention for which she had refused consent. After a loss at trial, in which the court decided that the state had an interest in saving her from suicide, the appellate court reversed, ruling that Bouvia, as a competent patient, had a fundamental right to refuse any treatment even at the cost of her life.
(p. 384) The appellate court noted that, despite the appearance that Bouvia had an overriding interest in living for the two decades projected as feasible with artificial feeding, the prospect of suffering a painful and isolated life suggested that in her case the seeming interest in staying alive was illusory.46 Bouvia’s life was characterized in the following terms: “She herself is imprisoned and must lie physically helpless subject to the ignominy, embarrassment, humiliation, and dehumanizing aspects created by her helplessness.”47
Disability activists characterized both Bouvia’s, and the court’s, motivations very differently.48 Bouvia’s self-reports about her own situation seemed suspiciously stereotypical to them. They believed Bouvia was being misrepresented as desiring to die by starvation. They diagnosed her instead as having internalized the rejection and repression that society rains on disabled people. Bouvia thus was accused of having internalized nondisabled society’s biased view of the quality of life disabled people can attain. The court was accused of echoing nondisabled society’s biased presumptions that she could not live independently, could not have a marriage or a career, could not cope with the multiple hardships of disabled life, and therefore that she—as a person who had to live with such an absence of high-quality life—was worthless.49
Bouvia’s critics also contended that Bouvia’s dependence on nondisabled society for services and to mitigate her loneliness exposed her to being exploited by nondisabled people for their own purposes. They viewed her as voicing ideas inspired by ACLU attorneys who had made her a tool to show that disability made life expendable under a pretext of defending liberty. Finally, they feared her legal pursuit to be free of life-saving medical intervention could negatively impact others like herself, especially those who depended on medical support to survive. To discredit Bouvia’s decision that dying was in her interest, disability activists derogated her capacity for self-governance, thereby echoing the prevailing societal picture of disabled individuals who retain executive functioning as nevertheless being coercible because their sense of self is pervaded by anger and shame.50 Tensions between respect for autonomy, judgments about what autonomy is possible in constrained circumstances, and the apparently well-meaning but not always well-directed desire to protect the lives of people with disabilities are striking in these cases.
In 1997, in denying that a state law prohibiting assisted suicide violates constitutional liberty guarantees, the U.S. Supreme Court reiterated this fear, similarly characterizing disabled people as vulnerable. The Court stated,
the State has an interest in protecting vulnerable groups including the poor, the elderly, and disabled persons from abuse, neglect, and mistakes… . We have recognized … the real risk of subtle coercion and undue influence in end of life situations… . The risk of harm is greatest for the many individuals in our society whose autonomy and wellbeing are already compromised by poverty, lack of access to good medical care, advanced age, or membership in a stigmatized (p. 385) social group … The State’s interest here goes beyond protecting the vulnerable from coercion; it extends to protecting disabled and terminally ill people from prejudice, negative and inaccurate stereotypes, and “societal indifference.” … The State may fear that permitting assisted suicide will start it down the path to voluntary and perhaps even involuntary euthanasia … [I]t turns out that what is couched as a limited right to “physician-assisted suicide” is likely, in effect, a much broader license, which could prove extremely difficult to police and contain. Washington’s ban on assisting suicide prevents such erosion.51
The high-profile national debate that swirled around the case of Teresa Marie (Terri) Schiavo52 illustrates how issues of capacity and quality-of-life judgments may become so intertwined in end-of-life situations that the impact of disability and the concerns of people with disabilities are obscured. Schiavo suffered brain damage due to anoxia after collapsing at her home, and after ten weeks in a coma her diagnosis was changed to persistent vegetative state (PVS). After eight years her husband and legal guardian Michael Schiavo petitioned the Sixth Circuit Court of Florida to remove her feeding tube. Her parents, the Schindlers, opposed the action. Over the next seven years, the case spawned fourteen appeals, state and federal legislation, and action by then Florida Governor Jeb Bush and then President George W. Bush. Eventually, Florida courts decided that Schiavo met the state criteria for withdrawal of life support, the feeding tube was removed, and she died of dehydration.
Throughout, the Schindlers argued that their daughter did not meet the criteria for a diagnosis of PVS because she was at least minimally responsive to some stimuli and was capable of swallowing if fed by mouth. Physician testimony introduced by the contesting sides conflicted in regard to these points, but the Florida courts concluded that the evidence supported the determination of PVS. Contending that this judgment subjected Schiavo to disability discrimination, manifested by underestimations of her potential for improved functioning and of her quality of life, some commentators called for applying for protection under the Americans with Disabilities Act (ADA).
Schiavo thus became a national symbol of the vulnerability disability can bring. Yet the ADA neither presses nor prohibits specific scientific or medical treatment decisions; it is a prohibition of discrimination, not a right-to-life statute. Two of the authors of this chapter have argued elsewhere that it is important not to interpret disability perspectives about the Schiavo situation to support permitting bad science to influence decision-making with respect to people with severe intellectual disabilities.53
Schiavo is a case in which the usual approaches to address the impact of disability on capacity for decision-making provided a legal resolution but became entangled with ongoing disagreement about the impact of disability on quality of life. In amicus briefs in the Schiavo case,54 disability organizations contended without success that prevailing prejudice regarding the poor quality and burdensomeness on others of severely disabled people’s lives may taint third-party decisions about withdrawing or withholding life support from them. (p. 386) This view about the dangers of underestimating disabled people’s quality of life was advanced by the National Council on Disability in a 1997 position paper and remains influential in the disability community today.55
II Health Law and the Statutory Framework of U.S. Disability Law
Understanding statutory definitions of disability is critical to understanding the relationship between disability law and health law. United States disability law statutes define disability in different ways and in so doing align with different purposes for disability law. Some statutory approaches to disability employ what can best be characterized as a functional approach to defining disability. These characterize disability in terms of extraordinary limitations on a person’s activities that result from combinations of biological anomalies with restrictive social attitudes and structures. Other statutes are primarily impairment-based—that is, they specify a list of conditions that qualify individuals as disabled. These approaches reflect tensions between universalist and “minority group” approaches to disability rights, as described below.56 They also reflect differences between the medical model of disability on which disability is identified with a diagnosable condition of the individual and the social model of disability on which adverse social arrangements or disparately truncated opportunity are at least partially responsible for the individual’s functional limitations.
a. Statutes Employing Functional Definitions of Disability
In the United States, the Rehabilitation Act of 1973 (Rehabilitation Act), the Fair Housing Act (FHA), and the Americans with Disabilities Act (ADA) are the primary statutes of relevance to healthcare laws and policies that employ a functional approach to defining disability. A functional approach to defining disability considers what an individual is—or is not—able to do. To be disabled for one of these statutes, an individual must have a physical or mental impairment that substantially limits a major life activity, have a record of such an impairment, or be regarded as having such an impairment.57 Because the U.S. Supreme Court issued a series of decisions narrowly interpreting and severely constraining this definition of disability, Congress responded with the ADA Amendments Act of 2008 (ADAAA), stipulating that the definition of disability is to be construed in favor of broad coverage.58
(p. 387) Section 504 of the Rehabilitation Act of 1973,59 which prohibits discrimination in any program or activity receiving federal funding, was the initial U.S. statute prohibiting disability discrimination. Any healthcare facilities receiving federal funding, including Medicare or Medicaid reimbursements, construction funds, or research funds, are subject to the Rehabilitation Act. The FHA, amended to include disability in 1988, prohibits discrimination in the sale or rental of housing; it excludes single-family dwellings and dwellings of three or fewer units (four, if owner-occupied). Of relevance to healthcare, the FHA applies to assisted-living facilities and continuing-care retirement communities, among other senior living communities.60
The ADA, the most comprehensive of the American antidiscrimination statutes, prohibits defined forms of disability discrimination in employment, public services, public transit, and public accommodations. Title I of the ADA, the employment discrimination title, applies to all employers engaged in commerce with fifteen or more employees except the U.S. government or Indian tribes; all state and private sector healthcare facilities meeting the minimum size requirement are covered by this Title.61 This Title I requirement includes the failure of healthcare employers to provide reasonable accommodations for their employees such as light-duty assignments, altered work responsibilities, or adjusted work shifts for otherwise qualified individuals—so long as these do not impose an undue hardship.62
Employees of healthcare institutions have brought many claims of employment discrimination under Title I of the ADA. In a well-known case, the University of Maryland Medical Center permanently suspended a neurosurgery resident who had become HIV-positive after a needle stick and he refused the nonsurgical residencies offered to him as alternatives. The court held that the resident was not otherwise qualified for the surgery position if he posed safety risks to others.63 In reaching this conclusion, the court relied on the medical system’s determination that a significant percentage of the procedures Dr. Doe would be expected to perform presented the possibility of exposure to patients despite use of precautions. Although judgments about risk must be based in current best evidence, it remains good law that employees who pose safety risks that cannot reasonably be accommodated are not qualified for positions they seek; their employers may use the “direct threat” defense to the charge of discrimination.
Many employment discrimination cases involve hospital employees seeking accommodations such as lifting restrictions or altered shifts; before 2009, these cases most frequently failed on motions for summary judgment applying the Supreme Court’s straitened standards for disability as well as on claims that the employee could not perform the essential functions of the job and thus was not qualified. Despite the ADAAA, indications are that some courts may still be concluding that plaintiffs are not sufficiently limited in their major life activities (p. 388) to qualify as disabled, and other courts are granting summary judgment in favor of employers on the question of the employee’s abilities to perform essential job functions.64 Moreover, the Supreme Court has held that policies with differential impact on persons with disabilities are not discriminatory treatment under Title I of the ADA, absent some further evidence of actual discriminatory motivation on the part of the employer. Consequently, nurses in successful rehabilitation from substance abuse and with exemplary recent records, but who were not hired because a hospital had a policy of not hiring anyone who had had a prior licensing restriction, lost their suit for employment discrimination under the ADA.65
Title II of the ADA governs public services provided by any state or local government and so includes public hospitals, clinics, public health departments, and the like, as well as public educational institutions.66 Title II prohibits exclusion from services or denial of benefits to any individual meeting essential eligibility requirements with or without reasonable modifications.67 A pre-ADA Supreme Court decision (under the Rehabilitation Act) considering an application to nursing school by a deaf student concluded that she must be able to meet eligibility requirements in spite of her disability and could not do so because her need for lip reading or interpretation might preclude her full participation in clinical settings as when masks are worn.68 Although much criticized as stereotyping the capabilities of students with disabilities,69 Davis continues to be relied on by courts adjudicating ADA claims in concluding that applicants to educational programs in medicine or other health sciences cannot meet essential eligibility requirements.70
Another important early interpretation of the Rehabilitation Act, continuing to set the standard under the ADA, was Alexander v. Choate’s determination that Tennessee had provided “meaningful access” to its Medicaid program for persons with disabilities despite cutting back hospital stays to fourteen days per year.71 The “meaningful access” standard continues to be employed by courts scrutinizing whether plaintiffs with disabilities have received social services in a nondiscriminatory manner. Some courts interpret Alexander to require only that people with disabilities have meaningful access to whatever benefit is provided, even if the benefits are limited in ways that make them useless to the individuals due to their disabilities.72 On this interpretation, all that matters is access. Other courts examine the structure of a benefits program for whether it is difficult for people with disabilities to enjoy due to their disabilities and hence discriminates.73 On this approach, the nature of the benefit provided also matters: Is the benefit formulated in such a way that people with (p. 389) disabilities can enjoy it on terms equivalent to others? Scholars74 characterize this as the access/benefits distinction; if the issue is framed in terms of nondiscrimination with respect to benefits rather than mere access, civil rights protections will reach far more broadly than they otherwise would. As discussed more fully below, it remains to be seen how the meaningful access standard of Alexander v. Choate will be applied by courts to states’ reforms of their Medicaid programs in the wake of the ACA.
A third decision interpreting the ADA Title II of critical relevance to healthcare is Olmstead v. L.C.’s holding75 that services must be provided in the most integrated setting appropriate in order to avoid undue segregation of people with disabilities. In Olmstead, two patients in state hospitals for persons with intellectual or psychiatric disabilities sought community placements as recommended by their treating physicians. The state objected that requiring community placements for all patients like these would be a fundamental alteration in the state’s design of mental health services, imposing excess costs on the state’s system. Although adopting the most integrated setting requirement, the Court also held that in determining whether a community placement requirement would be a fundamental alteration in the state’s program, and thus allow the state a defense to the discrimination claim, the lower court should take into account the range of services provided by the state to others with mental disabilities, the state’s obligation to mete out these services equitably, and the system’s overall costs. State programs that require or as a practical matter expect patients to receive benefits in institutional settings rather than home care continue to be challenged by plaintiffs; recent litigation in Florida by medically fragile children claiming that the state program placed them at risk of institutionalization is an example.76 Litigation following Olmstead has often been successful for plaintiffs, with states either losing or settling cases.
Title III of the ADA applies to public accommodations, defined to include physicians’ professional offices, pharmacies, hospitals, other service centers, social service centers, and health spas.77 Like ADA Title II, ADA Title III can be expected to be a rich source of litigation as the ACA continues to unfold. ADA Title III requires public accommodations to afford persons with disabilities the full and equal enjoyment of goods, services, facilities, privileges, advantages, or accommodations.78 Offices of insurance companies are clearly public accommodations that must be physically accessible, but it is unsettled legally whether the insurance products sold are also subject to the nondiscrimination requirement and what that requirement might entail if they are.
ADA Title III also covers examinations such as the MCAT, professional licensing examinations, and medical board examinations. The statute requires tests to be administered in a place or manner accessible to persons with disabilities,79 and the regulations construe this to require that examination results “accurately reflect the aptitude or achievement level of individuals with disabilities rather than reflecting the individuals’ impaired sensory, manual, or speaking skills.”80 Courts have concluded that examining boards are not required to construct alternative format examinations for persons with cognitive processing disabilities, however.81
(p. 390) b. Statutes Employing Condition-based Definitions of Disability
In contrast to a functional definition of disability, other statutes employ condition-based diagnoses to set coverage eligibility limitations. Often resulting from lobbying or advocacy by groups with interests in the condition in question, this approach limits coverage to the enumerated conditions, thus relying on medicalized diagnoses. The Individuals with Disabilities Education Act (IDEA) requires that all children with disabilities be provided with a free and appropriate public education. This includes medical services if they are related to the children’s receipt of educational services; examples include administration of ventilator support or medication required for a student to be safely in a school setting.82 To qualify for IDEA services, children must be diagnosed with one of a listed set of conditions (including mental retardation, hearing or visual impairments, serious emotional disturbance, other health impairment, or specific learning disabilities) by reason of which they need special education services.83 Children not fitting one of these diagnostic categories will be ineligible for IDEA services.
SSDI is another federal program employing a diagnosis-based understanding of disability. To qualify for Social Security disability income, an individual must have received the age-appropriate number of work credits, be unable to work in any job in the relevant labor market, and have a diagnosed disability that has lasted for more than one year or is expected to result in death. Social Security lists conditions that presumptively qualify for the disability designation.84 Other conditions may qualify if claimants can demonstrate that they are of equal severity to conditions on the list. Individuals receiving SSDI also qualify for Medicare. Individuals qualifying for SSDI may also receive Supplemental Security Income (SSI) if their assets and income place them below income and resource thresholds and may be eligible for state Medicaid as well.
Several federal statutes protect types of information about individuals’ health, sometimes limited to the type of information or treatment. The Genetic Information Nondiscrimination Act (GINA) prohibits genetic discrimination by employers and health insurers. GINA defines genetic information to include genetic tests and family history information, but not information about disease that has become manifest in the individual.85 GINA’s nondiscrimination provisions include prohibiting requirements that individuals undergo genetic tests or submit genetic information to be used by employers or insurers. The federal Substance Abuse and Mental Health Services Act (SAMHSA) and accompanying regulations require specific consent for the disclosure of records of treatment by federally funded alcohol or drug abuse programs.86 The Health Insurance Portability and Accountability Act (HIPAA) protects the security and privacy of identifiable health information for all patients, whether (p. 391) or not they are persons with disabilities. Many state statutes also protect the privacy of various types of health information beyond these federal protections.
Workers’ compensation is a state-level insurance program that pays benefits to individuals who have been injured on the job. Typical state programs require employers to carry the insurance, but individual states have a variety of exceptions for smaller employers and employers in certain job sectors such as agriculture. Workers’ compensation benefits cover a percentage of income (up to a ceiling) and, depending on the state, may be subject to time limitations in coverage. Workers’ compensation also covers necessary medical care, although coverage limits vary by state. In addition, many employers provide disability insurance and life insurance programs for their workers; these are subject to the ADA prohibition on employment discrimination but may incorporate reasonable actuarial calculations to determine premiums. These insurance programs may be offered in the private market and, as mentioned above, may receive ADA Title III protections. Only health insurance is subject to the GINA prohibitions on genetic discrimination and to ACA requirements, however.
III Health Law, Disability, and Access to Care
Nondiscrimination statutes, particularly the Rehabilitation Act and the ADA, address discrimination in the provision of healthcare. Many other aspects of health law also impact access to care, especially structures of public and private healthcare financing. Recent passage of the ACA contains the promise of erasing much disability discrimination from healthcare financing, as insurers will no longer be able to charge premiums based on the individual’s health history or exclude preexisting conditions from coverage. How much this promise will be realized remains an evolving conundrum, however, and much remains to ensure meaningful access to healthcare for all people with disabilities in the United States.
a. Access to Healthcare—Providers’ and Programs’ Obligations Under the ADA
As explained above, the ADA Title III establishes that healthcare providers must not discriminate against people with disabilities by refusing to treat them or by limiting the treatment they provide in a way they would not limit treatment to the nondisabled. In Bragdon v. Abbott,87 the Supreme Court held that it was disability discrimination for a dentist to refuse to treat a person with HIV/AIDS. The dentist had invoked the ADA’s “direct threat” defense, claiming that he had a good faith belief that treating patients with HIV would risk transmission of infection. In response, the Court said that the defense would only be available based on objective evidence of risks such as that available from the Centers for Disease Control. Some providers still may be unjustifiably refusing to treat people with disabilities (p. 392) such as HIV/AIDS, however.88 Bragdon v. Abbott also held that Abbott’s HIV was a disability because it substantially limited her fundamental life activity of reproduction. Although the impact of HIV may be far less on reproduction today because of the availability of retroviral medications, HIV likely still qualifies as a disability under the ADAAA because if an HIV positive patient is assessed in her uncorrected state, her immune system function is substantially limited.
Full and equal enjoyment also means that healthcare facilities must be accessible to people with disabilities. Critics have documented limited accessibility in many healthcare facilities, however.89 Examination tables or scales that cannot be easily used by people with mobility impairments, mammography machines that require standing, or improperly sized equipment are illustrations. Another example is that elders who due to disability use powered mobility devices may find themselves denied access to assisted-living facilities despite qualifying for them. These inadequacies violate the ADA and the Fair Housing Act.90
Communication is another important aspect of accessibility. Patients or their personal representatives who due to deafness communicate with sign language rather than speech need effective ways to exchange information with medical professionals. A poignant example is a California case in which a deaf woman was not provided any interpreter services and was unable to communicate about difficult care decisions for her husband who had suffered massive cardiac arrest.91 The ADA and implementing regulations require that healthcare providers ensure effective communication with patients or patients’ companions with sensory impairments. This may require a variety of auxiliary aids. Providers must consult with patients about what types of auxiliary aids are needed, but under the regulations the ultimate responsibility for the decision rests with providers, subject to the requirement that the communication be effective.92 In addition, under the implementing regulations, providers may not require patients to provide their own auxiliary aids.
Medicare is the federal health insurance program for qualifying persons over the age of sixty-five, qualifying persons with long-term disabilities rendering them incapable of working, or people with end-stage renal disease. Medicare eligibility tracks Social Security eligibility: People over age sixty-five must have forty credits (work quarters) of paying into the Social Security system, and people under age sixty-five must have achieved the number of credits specified for their age (unless they have been unable to work since childhood or come within certain other limited exceptions). Thus Medicare covers many but by no means all adults with long-term disabilities in the United States.
(p. 393) Medicare primarily covers hospital, outpatient, and pharmaceutical expenses, but with limits of significant importance to people with disabilities. Except for a maximum of one hundred days post-hospitalization (with a $140/day copayment after the first twenty days), Medicare does not pay for any nursing home care, even when skilled care is required. Additional nursing home care or long-term care in the United States must be paid for out of private funds, long-term care insurance policies, or Medicaid for those who have spent down to meet income and asset eligibility ceilings. Mental healthcare is also quite limited under Medicare: Inpatient mental health benefits are limited to 190 days lifetime, and the outpatient benefit requires a 40% copayment.
c. The Implications of the ACA
The ACA aims to improve access to healthcare and overall health status, while at the same time reducing healthcare costs and improving healthcare quality. For persons with expensive healthcare needs, the ACA presents the clear advantage of prohibiting insurers from underwriting decisions based on individual risk profiles or preexisting conditions. While some of these goals might seem uncontroversially beneficial for people with disabilities and indeed for the population as a whole, tensions among the goals as well as between strategies for implementing them remain problematic. This section highlights specific areas of concern: the continuing role of employer-provided insurance, the definition of minimum essential benefits, the use of premium differentials to encourage supposed health-promoting behaviors, the emphasis on wellness programs, and the reliance on Medicaid to expand coverage.
i. Employer Coverage and Minimum Essential Benefits
Cornerstones of the ACA are the requirements for employers to provide or maintain coverage, for individuals to meet the coverage mandate, and for coverage providing minimum essential benefits to be available through exchanges in a manner that does not discriminate against individuals with expensive healthcare needs.93
ACA requirements leave large employer plans for the most part unchanged.94 These plans may not include forms of coverage that matter to employees (or their dependents) with certain kinds of disabilities. Examples are home healthcare, out-of-network care with desired specialists, or coverage for prostheses or other novel assistive devices. Employer plans also may contract separately with pharmacy benefit managers to reduce drug costs to the plan; these arrangements may involve high copayments or a limited formulary of available drugs, posing problems for people with disabilities such as multiple sclerosis who require particularly expensive pharmaceuticals.
Individuals without employer-provided insurance may purchase coverage through exchanges offered in the various states and operated by federal or state governments. All (p. 394) plans sold through exchanges must cover minimum essential benefits in a list of ten categories set out in the statute.95 (Plans offered in the small group market must also meet this requirement.) By regulation, HHS has tied minimum essential benefits to state benchmark plans, defined in terms of plans currently sold in the state; the default is the largest plan by enrollment in the largest product in the state’s small group market. Benchmark plans vary by state and like current employer plans may or may not include coverage particularly important to people with disabilities. If benchmark plans omit an essential benefit category, states must require that coverage in this category be included. Disability advocates are concerned that these additions may be inadequate or that states may fail to scrutinize benchmark plans for adequacy in categories they do cover. A particularly important essential benefits category for people with disabilities is rehabilitative and habilitative services. In this category, advocates caution that it is important to cover habilitation (learning a skill) as well as rehabilitation (regaining a skill) and to include a wide range of devices and services.96
Coverage for mental healthcare has been a persistent gap in American healthcare. The ACA aims to address the problem of mental health parity by requiring essential mental health and substance use disorder services as part of the essential health benefits package.97 A primary concern about the use of existing plans as benchmarks is that this strategy will replicate existing inequities in coverage for mental healthcare, despite the requirement to include mental health and substance use disorder services in the essential benefits package.98 Commentators are especially worried about plan designs that restrict types of therapy or choice of provider in the mental health arena.99
ii. Encouraging Healthy Behavior: Premium Differentials and Wellness Programs
The ACA permits employer-provided health insurance plans to offer premium discounts or rebates based on behavior and participation in wellness plans.100 These programs must be made available to all similarly situated individuals and may not be based on health status per se, such as whether an individual has diabetes.
The ACA also permits demonstration projects for the incorporation of wellness programs into plans sold through exchanges. State Medicaid programs, particularly in more (p. 395) conservative states, also have experimented with a variety of “personal responsibility for health” programs.101 If any conditions for obtaining a wellness plan benefit under the ACA require an individual to satisfy a standard related to a health status factor—an example would be maintaining specified Ha1C levels for a diabetic—the reward may not exceed 30% of the employee-only coverage costs. Health target–based programs also must provide reasonable alternative standards for individuals when it is unreasonably difficult or inadvisable for them to meet the prescribed standard because of a medical condition. Plans may seek reasonable verification from the individual’s physician of the impact of the health status factor.
While the requirement that these wellness programs be available to all similarly situated individuals may provide some protection for people with health status differences arising from disability, others may find these programs inappropriate interventions at best and coercive impositions at worst. The permissible differential in the employee’s premium share—30%—may be highly significant for many lower-income employees and thus may affect the affordability of coverage. Although participation-based programs are theoretically open to everyone, they may be as a practical matter more difficult to access for some (e.g., persons with disabilities who cannot drive and must use public transit or paratransit), and they may not provide the adaptive equipment people with certain disabilities need. Thus the unlimited rewards attached to them may be unfairly distributed.
Normative assumptions built into the programs about what behaviors are healthy—smoking cessation is a primary example, but so are weight reduction and exercise—may be inapposite or ill-advised for people with disabilities such as forms of mental disability.102 Employees with disabilities may find it very difficult to reach stated targets—for example, weight-loss goals—even if it is medically possible for them to do so. At the very least, efforts to reach these goals impose burdens on some that are not imposed on others who already meet them; as a practical matter, some will experience liberty intrusions that others will not. Moreover, permitting employers to request verification from treating physicians that meeting wellness standards would be unreasonably difficult or medically ill-advised may be seen as violating employees’ privacy and subjecting them to paternalistic medical judgments on the part of their physicians.103 An overarching disability critique of these programs is that, relying on the medical model of disability, they may see bodily differences as an individual “problem,” to be addressed by personal responsibility and the acceptance of medical intervention.
iii. Expanding Medicaid (or Not)
Medicaid is the federal-state partnership designed to provide healthcare coverage to certain low-income persons. Medicaid has been particularly important for people with disabilities, as it covers services such as long-term care that are not available under other insurance programs. In 2010, nearly 10 million of the 66 million Medicaid recipients qualified on the basis (p. 396) of disability. The ACA Medicaid expansion may provide coverage to people with disabilities who are able to earn too much income to qualify for traditional Medicaid. It may also allow people with disabilities to qualify for Medicaid based on their income alone rather than needing also to demonstrate their disability status.104 The U.S. Supreme Court’s decision105 that the ACA could not require states to expand Medicaid has left a patchwork of imperfect coverage for persons who could otherwise have benefited from the expanded coverage.
Like private insurance plans, Medicaid may also limit benefits in ways that disproportionately affect people with disabilities. Limited provider networks, required managed care plans, and restrictions on available pharmaceuticals are all examples. Restrictions on home healthcare benefits and coverage for durable medical equipment may be especially challenging for people with disabilities. Mental health benefits are a particular problem under Medicaid, especially in states that have not chosen to expand their programs under the ACA. Inpatient psychiatric care for individuals under age twenty-one and inpatient mental disease coverage for those over sixty-five are optional Medicaid benefits and may not be included in state plans.106 Although Medicaid is the primary payer for nursing home care in the United States, it does not cover mental healthcare provided in small residential facilities such as halfway houses or adult residential foster care homes.107
Medicaid expansion itself may also have indirect consequences for people with disabilities. Medicaid is one of the largest items in many state budgets, and constraining program costs is understandably a very high priority for state legislatures. One way states have tried to control their Medicaid budgets is to require recipients to receive care from managed care provider agencies. This may impose serious practical limits on clients’ ability to access care by reducing the pool of potential caregivers to those who comply with agencies’ business interests and by making caregivers the agency’s rather than the client’s employees, thus undercutting the guiding premise of the Independent Living Movement.108
(p. 397) Medicaid reimbursement levels are also a persistent challenge to access to care. Providers contend that Medicaid pays far too little for it to be economically viable for them to treat Medicaid patients and many refuse to take patients on Medicaid. The Medicaid statute109 requires Medicaid rates to be “consistent with efficiency, economy, and quality of care and … sufficient to enlist enough providers so that care and services are available under the plan at least to the extent that such care and services are available to the general population in the geographic area …” but states may not be meeting this standard.110 Home healthcare has proven a particularly thorny area for reimbursement issues. Medicaid has a program (§ 1915) under which requirements of the Medicaid statute can be waived for states wishing to try out different program approaches. One very popular waiver program is for home- and community-based services for people who would otherwise be institutionalized. States may apply to HHS for approval for such programs and must demonstrate that they are cost-neutral to Medicaid and that they will “continuously and effectively assur[e] the health and welfare of waiver participants.”111 Waivers may allow for individuals to direct the services they receive, including hiring their own community workers. In a case argued before the Supreme Court in January 2015, Idaho providers of supported-care facilities for persons with intellectual disabilities under the state’s § 1915(c) waiver program sued to enforce § 30(A) reimbursement requirements. Idaho had not raised reimbursement rates since 2006 because the legislature had not appropriated the needed funding, despite its Medicaid agency’s cost-based analysis recommending an increase in the rates.
Healthcare represents nearly 20% of GDP in the United States. Health law is correspondingly protean in its reach. It is thus not at all surprising that health law intersects in myriad ways with disability law and the lives of people with disabilities.
The impact of disability law on health law for achieving meaningful access to care for persons with disabilities remains a work in progress, however. Much of the law concerning the provider-patient relationship developed before civil rights paradigms had become firmly extended to persons with disabilities. The ADA prohibits discrimination in employment, public services, or public accommodations, but evidence of discrimination persists. Despite the ACA, access to healthcare or reimbursement for it remains uneven. There is no incentive for employers who furnish healthcare insurance to be concerned about expanding coverage to support employees or family members with disabilities, and employer-based coverage that has served people with disabilities could be altered to limit or exclude benefits of importance to them. Coverage in the individual or small group markets may mirror these (p. 398) inadequacies. Many people with disabilities do not have employer-provided insurance and remain dependent on Medicare or Medicaid programs with coverage restrictions or reimbursement constraints that make it difficult for them to receive care in the form they need. If meaningful access to healthcare means access on the terms others enjoy, there is much still to be achieved in health law for people with disabilities.
(1) Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (1990).
(2) Lindsay F. Wiley, Health Law as Social Justice, 24 Cornell J. L. & Pub. Pol’y 47 (2014); Jessica L. Roberts, Health Law as Disability Rights Law, 97 Minn. L. Rev. 1963 (2013); Ani B. Satz, Overcoming Fragmentation in Disability and Health Law, 60 Emory L.J. 277 (2010).
(3) Jacobus tenBroek, The Right to Live in the World: the Disabled in the Law of Torts, 54 Calif. L. Rev. 841 (1966).
(4) The initial statute protecting the civil rights of people with disabilities in the United States was the Rehabilitation Act of 1973, which applied to the federal government and federally funded activities. Rehabilitation Act of 1973, Pub. L. No. 93-112, 87 Stat. 355.
(5) City of Cleburne v. Cleburne Living Center, Inc., 473 U.S. 432 (1985).
(6) Id. at 444.
(7) Id. at 461 (Marshall, J., concurring in part and dissenting in part).
(8) Id. at 467 (Marshall, J., concurring in part and dissenting in part).
(9) Schloendorff v. Society of New York Hospital, 105 N.E. 92 (N.Y. 1914), abrogated by Bing v. Thunig, 2 N.Y.2d. 656 (N.Y. 1965).
(10) E.g., Ellison v. Brady, 924 F.2d 872 (9th Cir. 1991).
(11) Gregory C. Keating, Reasonableness and Rationality in Negligence Theory, 48 Stan. L. Rev. 311 (1996).
(12) Michael Ashley Stein et al., Health Care and the UN Disability Rights Convention, 374 The Lancet 1796 (2009).
(13) Department of Human Services v. Northern, 563 S.W.2d 197 (Tenn. Ct. App. 1978); see also Elyn R. Saks, Competency to Refuse Treatment, 69 N.C. L. Rev. 945 (1991).
(14) E.g., Susan G. Haines & John J. Campbell, Defects, Due Process, and Protective Proceedings: Are our Probate Courts Unconstitutional?, 33 Real Prop. Prob. & Tr. J. 215 (1998).
(15) United Nations Convention on the Rights of Persons with Disabilities, Art. 12, http://www.un.org/disabilities/convention/conventionfull.shtml (last visited Mar. 16, 2015); Nandini Devi, Supported Decision-making and Personal Autonomy for Persons with Intellectual Disabilities: Article 12 of the UN Convention on the Rights of Persons with Disabilities, 41 J.L. Med. & Ethics 792 (2013).
(16) Michael Ashley Stein, Janet E. Lord, & Dorothy Weiss Tolchin, Equal Access to Health Care under the UN Disability Rights Convention, in Med. & Soc. Just. 245 (Rosamond Rhodes, Margaret Battin, & Anita Silvers eds., 2012).
(18) World Medical Association, Declaration of Helsinki (1964), available at http://www.wma.net/en/30publications/10policies/b3/.
(19) Office of the Secretary, Dep’t of Health, Education, and Welfare, Belmont Report (1979), available at http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html.
(20) 42 C.F.R. § 46.116 (2014).
(21) Ana Iltis et al., Addressing Risks to Advance Mental Health Research, 70 JAMA Psychiatry 1363 (2013).
(22) Raymond S. Duff & A. G. Campbell, Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890 (1973).
(23) Adrienne Asch, Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy, 89 Am. J. Pub. Health 1649 (1999).
(24) Planned Parenthood v. Casey, 505 U.S. 833 (1992).
(25) Guttmacher Institute, Policies in Brief: An Overview of Abortion Laws (2015), available at http://www.guttmacher.org/statecenter/spibs/spib_OAL.pdf.
(26) E.g., Schirmer v. Mt. Auburn Obstetrics & Gynecologic Associates, Inc., 844 N.E.2d 1160 (Ohio 2006); Quinn v. Blau, 21 Conn. L. Rptr. 126 (Conn. Super. Ct. 1997).
(27) Turpin v. Sortini, 643 P.2d 954 (Cal. 1982).
(28) E.g., Sejpal v. Corson, Mitchell, Tomhave & McKinley, M.D.’s, Inc., 665 A.2d 1198 (Pa. Super. Ct. 1995).
(29) Christopher H. Hoving, The “Baby Doe” Cases, 72 a.b.a.j. 50 (Apr. 1986) .
(30) Bowen v. American Hospital Association, 476 U.S. 610, 614 (1986).
(31) Id. at 630–631. In the (in)famous cases at issue, it was the parents who decided not to treat. United States v. University Hosp., State University of New York at Stony Brook, 729 F.2d 144 (2d Cir. 1984) (Baby Jane Doe); Hoving, supra note 29. The Court did not apply its reasoning solely to disabilities: “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.” Bowen, 476 U.S. at 631.
(34) 42 U.S.C. § 5106a (2014); 45 C.F.R. § 1340.15 (2014).
(35) American Med. Ass’n, Current opinions of the Judicial Council of the American Medical Association 10.016, http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics.page (last visited May 11, 2015).
(36) Montalvo v. Borkovec, 647 N.W.2d 413 (Wis. Ct. App. 2002).
(37) Michael White, The End at the Beginning, 11 Ochsner J. 309 (2011) ; Irene Hurst, Letter to the Editor: Baby Doe Rules, 116 Pediatrics 1600 (2005).
(39) Miller ex rel. Miller v. HCA, Inc., 118 S.W. 3d 758 (Tex. 2003).
(40) Alicia Oeullette, Bioethics and Disability: Toward a Disability-Conscious Bioethics (2011).
(41) Anita Silvers & Leslie Francis, Death, Dying and Disability, in Oxford Handbook of Ethics and the End of Life (Stuart Youngner & Robert Arnold eds., forthcoming 2016).
(42) E.g., Rebecca Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity, 81 Tex. L. Rev. 1823 (2003).
(43) Michael Ashley Stein, Disability Human Rights, 95 Calif. L. Rev. 75 (2007).
(44) Janet E. Lord & Michael Ashley Stein, Contingent Participation and Coercive Care: Feminist and Communitarian Theories of Disability and Legal Capacity, in Coercive Care: Rights, Law and Policy 31 (Bernadette McSherry & Ian Freckelton eds., 2013).
(45) See Katharina Heyer, Rejecting Rights: The Disability Critique of Physician Assisted Suicide, in 54 Studies in Law, Politics, and Society: Special Issue Social Movements/Legal Possibilities 77 (Austin Sarat ed., 2011) (for an analysis of the effects of denying a freedom right on the rhetoric of a civil rights movement).
(46) Bouvia v Superior Court, 225 Cal. Rptr. 297, 299-00 (Cal. Ct. App. 1986).
(47) Associated Press, Woman Won Right to Die But Stays Alive, Deseret News, Dec. 16, 1993, http://www.deseretnews.com/article/326259/WOMAN-WON-RIGHT-TO-DIE-BUT-STAYS-ALIVE.html?pg=all.
(48) Mary Johnson, Right to Life, Fight to Die: The Elizabeth Bouvia Saga, http://www.broadreachtraining.com/advocacy/artbouvia.htm (last visited Mar. 17, 2015).
(50) Paul K. Longmore, Screening Stereotypes: Images of Disabled People in Television and Motion Pictures, in Images of the Disabled, Disabling Images 65 (A. Gartner and T. Joe eds., 1987).
(51) Washington v. Glucksberg, 521 U.S. 702, 731–732 (1997).
(52) Schiavo ex rel. Schindler v. Schiavo, 358 F. Supp. 2d 1161, 1164–1165 (M.D. Fla. 2005), aff’d, 403 F.3d 1289 (11th Cir. 2005).
(53) Leslie Francis & Anita Silvers, (Mis)Framing Schiavo as Discrimination Against Persons with Disabilities, 61 U. Miami L. Rev. 789 (2007).
(54) See, e.g., Brief of Amici Curiae Not Dead Yet et al. in Support of Appellants and Requesting Reversal, Bush v. Schiavo, 885 So.2d 321 (Fla. 2004) (No. SC04-925).
(56) Samuel Bagenstos, Law and the Contradictions of the Disability Rights Movement (2009); Kevin Barry, Toward Universalism: What the ADA Amendments Act of 2008 Can and Can’t Do for Disability Rights, 31 Berkeley J. Emp. & Lab. L. 203 (2010).
(57) Americans with Disabilities Act of 1990, 42 U.S.C. § 12102(1) (2014); Rehabilitation Act of 1973, 29 U.S.C. § 705(9)(B) (2014); Fair Housing Act, 42 U.S.C. § 3602(h) (2014).
(58) 42 U.S.C. § 12102(4)(A) (2014). Exceptions to this statutory definition of disability that reflect a complex set of congressional moral judgment should be noted. For all three of these statutes, current illegal use of or addiction to a controlled substance is not a disability; this exclusion does not include adult alcohol addiction, as alcohol use by adults is legal and alcohol is not a controlled substance. Under the ADA and the Rehabilitation Act, being a transvestite, homosexual, or bisexual also is not the basis for a claim to be disabled, nor are certain other conditions such as pyromania, gender identity disorders, or pedophilia. 42 U.S.C. §§ 12208, 12214 (2014).
(59) 29 U.S.C. § 701(a) (2014).
(60) These come under the definition of dwelling, 24 C.F.R. § 100.10 (2014).
(61) 42 U.S.C. § 12111(5) (2014).
(62) 42 U.S.C. § 12112(b) (2014).
(63) Doe v. University of Maryland Medical System Corp., 50 F.3d 1261 (4th Cir. 1995).
(64) Michael Ashley Stein et al., Accommodating Every Body, 81 U. Chi. L. Rev. 689 (2014). Dismissal of a case on summary judgment is a critical blow to plaintiffs, as it precludes any further exploration of the facts in court or incentives on the part of the defendant to settle the case.
(65) Lopreato v. Select Specialty Hospital-Northern Kentucky, LLC, No. 12-217-DLB-JGW, 2014 WL 6804221 (E.D. Ky. Dec. 3, 2014).
(66) 42. U.S.C. §12131(1) (2014).
(67) 42 U.S.C. § 12132 (2014).
(68) Southeastern Community College v. Davis, 442 U.S. 397 (1979).
(69) Michael Schwartz, Technical Standards for Admission to Medical School: Deaf Candidates Don’t Get No Respect, 28 Buff. Pub. Int. L.J. 31 (2009–2010).
(70) E.g., Halpern v. Wake Forest University Health Sciences, 669 F.3d 454 (4th Cir. 2012); Zukle v. Regents of the University of California, 166 F.3d 1041 (9th Cir. 1999).
(71) Alexander v. Choate, 469 U.S. 287 (1985).
(72) E.g., Cohon ex rel. Bass v. New Mexico Dep’t of Health, 646 F.3d 717 (10th Cir. 2011).
(73) E.g., Henrietta D. v. Bloomberg, 331 F.3d 261 (2d Cir. 2003).
(75) Olmstead v. L.C., 527 U.S. 581 (1999).
(76) A.R. ex rel. Root v. Dudek, 31 F. Supp. 3d (S.D. Fla. 2014).
(77) 42 U.S.C. § 12181(7)(F), (K-L) (2014).
(78) 42 U.S.C. § 12182(a) (2014).
(79) 42 U.S.C. §12189 (2014).
(80) 28 C.F.R. § 36.309(b)(i) (2014).
(81) E.g., Rawdin v. American Board of Pediatrics, 582 Fed. Appx. 114 (3d Cir 2014).
(82) Cedar Rapids Community School District v. Garrett F., 526 US 66 (1999).
(83) 20 U.S.C. § 1401(3) (2014).
(84) US Social Security Administration, Disability Evaluation Under Social Security: Listing of Impairments—Adult Listings Part A, available at http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm (last visited Mar. 17, 2015).
(85) Genetic Information Nondiscrimination Act of 2008, Pub. L. 110-223, §201(4), 122 Stat. 881.
(86) 42 C.F.R., Part 2 (2014).
(87) Bragdon v. Abbott, 524 U.S. 624 (1998).
(88) Brad Sears et al., HIV Discrimination in Dental Care: Results of a Testing Study in Los Angeles County, 45 Loy. L.A. L. Rev. 909 (2012).
(89) Elizabeth Pendo, Disability, Equipment Barriers and Women’s Health: Using the ADA to Provide Meaningful Access, 2 St. Louis U. J. Health L. & Pol’y 15 (2008).
(90) Assisted-living facilities are public accommodations under Title III of the ADA, ADA § 12181(7), and dwellings under the FHA, 24 C.F.R. § 100.10 (2014).
(91) Aikens v. St. Helena Hospital, 843 F. Supp. 1329 (N.D. Cal. 1994).
(92) 28 C.F.R. §36.303(c) (2014).
(94) Amy Monahan, The ACA, the Large Group Market, and Content Regulation: What’s a State to Do?, 5 St. Louis U. J. Health L. & Pol’y 83 (2011).
(95) 42 U.S.C. § 18022 (2014).
(96) Consortium for Citizens with Disabilities, Open Letter to the States on Defining Essential Health Benefits Package, https://www.aapmr.org/advocacy/federal-reform/Documents/EHB%20Technical%20Assistance%20For%20Distribution.pdf (last visited Mar. 17, 2015).
(97) Patient Protection and Affordable Care Act, 42 U.S.C. § 18022(b)(1)(E) (2014).
(98) Office of the Assistant Secretary for Planning and Evaluation, U.S. Dep’t of Health, Consistency of Large Employer and Group Health Plan Benefits with Requirements of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (2013), available at http://www.dol.gov/ebsa/pdf/hhswellstonedomenicimhpaealargeemployerandghpbconsistency.pdf; Stacey A. Tovino, A Proposal for Comprehensive and Specific Essential Mental Health and Substance Use Disorder Benefits, 38 Am. J.L. & Med. 471 (2012).
(99) Miriam Ruttenberg, Choice and Continuity of Care as Significant Issues for Equality in Mental Health Care, 10 J. Health & Biomedical L. 201 (2014).
(100) 42 U.S.C. § 300gg-4(j) (2014).
(101) Karen J. Blumenthal, Medicaid Incentive Programs to Encourage Healthy Behavior Show Mixed Results to Date and Should be Studied and Improved, 32 Health Aff. 497 (2013).
(102) Sherry Leonard, Sharon Mexal, & Robert Freedman, Smoking, Genetics and Schizophrenia: Evidence for Self Medication, 3 J. Dual Diagnosis 43 (2007).
(103) Lindsay F. Wiley, Access to Health Care as an Incentive for Healthy Behavior? An Assessment of the Affordable Care Act’s Personal Responsibility for Wellness Reforms, 11 Ind. Health L. Rev. 635 (2014).
(104) MaryBeth Musumeci, The Affordable Care Act’s Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities (Apr. 8, 2014), http://kff.org/health-reform/issue-brief/the-affordable-care-acts-impact-on-medicaid-eligibility-enrollment-and-benefits-for-people-with-disabilities/.
(105) National Federation of Independent Business v. Sebelius, 132 S. Ct. 2566 (2012).
(106) Substance Abuse and Mental Health Services Administration, Medicaid Handbook: Interface with Behavioral Health Services (2013), p. 3–3, available at http://store.samhsa.gov/shin/content//SMA13-4773/SMA13-4773.pdf.
(108) A 2014 HHS report, Office of Inspector General. Dep’t of Health and Human Services, State Standards for Access to Care in Medicaid Managed Care (2014), available at http://oig.hhs.gov/oei/reports/oei-02-11-00320.pdf, raises alarms about whether states have adequate standards for access to Medicaid managed care providers and sufficiently monitor compliance with the standards they do impose. For example, access standards vary from states requiring one primary care provider per 100 enrollees to states requiring one per 2,500 enrollees. Standards for the maximum distance patients might be expected to travel to see primary care providers vary from 5 to 60 miles; these standards also vary widely for rural and urban areas. Many states do not have travel standards that apply to specialists. Standards for wait times to see a primary care provider for routine care vary from 10 to 45 days and some states lack standards for wait times to see specialists. Provider shortages, especially in primary care fields, may also prove challenging as more people receive healthcare coverage. Some studies of patient experience indicate that at least so far most patients with both Medicaid and private coverage are able to obtain needed services, however. Austin Frakt, Shortage of Medicaid Doctors? Not if You Ask Patients, N.Y. Times, Nov. 10, 2014, http://www.nytimes.com/2014/11/11/upshot/shortage-of-medicaid-doctors-not-if-you-ask-patients.html?abt=0002&abg=0.
(109) 42 U.S.C. §1396a(30)(A) (2014).
(110) See, e.g., Armstrong v. Exceptional Child Center, Inc., No. 14-15, 2015 WL 260361 (argued Jan. 15, 2015).
(111) Centers for Medicare and Medicaid Services, Application for a §1915(c) Home and Community-Based Waiver: Instructions, Technical Guide and Review Criteria (2008), p. 8, available at https://www.medicaid.gov/medicaid-chip-program-information/by-topics/waivers/downloads/technical-guidance.pdf.