D
The Americans with Disabilities Act in a Health Care Context

Sara Rosenbaum*

INTRODUCTION

This paper examines the Americans with Disabilities Act (ADA)1 in the context of health care. Encompassed in this analysis are issues related to health care access, coverage, and financing. The interaction of the ADA with employment laws governing the health care workforce is considered separately (see Appendix E). This analysis also assumes the presence of legal disputes involving “qualified” persons with “disabilities,” as the term is used under the ADA, since the question of who is “qualified” would consume an entire legal analysis in its own right.2

Any legal analysis involving health care can be daunting, because it entails an examination of the notoriously complicated interaction between law and the health care system. When the focus is on the relationship between civil rights and health care financing, the juncture can be particularly rocky because of the inherent contradictions between health care financing laws on the one hand and the law of civil rights on the other. At their core, the web of laws that together comprise the law of health care financing rests heavily on the law of insurance, which in turn emphasizes the legality

*

Harold and Jane Hirsh Professor of Health Law and Policy and Chair, Department of Health Policy, The George Washington University School of Public Health and Health Services.

1

42 U.S.C. §12101 et seq.

2

For an overview of legal developments in this area in the 16 years since the ADA’s enactment, see National Council on Disability, Righting the ADA (Washington, D.C.: NCD, 2004). Available at http://www.ncd.gov/newsroom/publications/2004/publications.htm (accessed July 22, 2006).



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The Future of Disability in America D The Americans with Disabilities Act in a Health Care Context Sara Rosenbaum* INTRODUCTION This paper examines the Americans with Disabilities Act (ADA)1 in the context of health care. Encompassed in this analysis are issues related to health care access, coverage, and financing. The interaction of the ADA with employment laws governing the health care workforce is considered separately (see Appendix E). This analysis also assumes the presence of legal disputes involving “qualified” persons with “disabilities,” as the term is used under the ADA, since the question of who is “qualified” would consume an entire legal analysis in its own right.2 Any legal analysis involving health care can be daunting, because it entails an examination of the notoriously complicated interaction between law and the health care system. When the focus is on the relationship between civil rights and health care financing, the juncture can be particularly rocky because of the inherent contradictions between health care financing laws on the one hand and the law of civil rights on the other. At their core, the web of laws that together comprise the law of health care financing rests heavily on the law of insurance, which in turn emphasizes the legality * Harold and Jane Hirsh Professor of Health Law and Policy and Chair, Department of Health Policy, The George Washington University School of Public Health and Health Services. 1 42 U.S.C. §12101 et seq. 2 For an overview of legal developments in this area in the 16 years since the ADA’s enactment, see National Council on Disability, Righting the ADA (Washington, D.C.: NCD, 2004). Available at http://www.ncd.gov/newsroom/publications/2004/publications.htm (accessed July 22, 2006).

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The Future of Disability in America of exclusion and risk avoidance. In contrast, civil rights laws enacted to protect persons with disabilities are fundamentally intended to advance the societal embrace of individuals whose health status can carry the potential for a greater consumption of resources. Legal disputes involving the allocation of resources within particular covered populations inevitably operate as a flashpoint for this deep, underlying policy tension. The fundamental purpose of the ADA is to achieve the integration of persons with disabilities into all facets of society, including health care.3 At the same time, the complex and intricate web of federal and state laws that govern public and private health care and health care financing are embedded in the principles of markets4 and federalism; these principles in turn vest health system players—physicians, hospitals, public programs, employers, and health insurers—with substantial discretion regarding health care undertakings and health care finance. Reconciling the ADA’s aspirational goals and specific legal provisions with the U.S. health care system’s market orientation5 is a daunting task, particularly when the regulatory focus is on whom health care professionals must serve or what health insurance programs must cover and pay for. The analysis that follows underscores the complexity of this topic. Part II describes the ADA’s basic provisions. Part III considers the ADA in the context of health care access, while Part IV explores the ADA and the law of health care financing. The paper concludes with a discussion of options for ensuring access to the civil rights protections conferred under law. The principal conclusions drawn from this review can be summarized as follows: First, when the claim by a qualified individual with a disability is understood to be one that involves discrimination in the provision of health care—that is, failing to offer health services in an accessible manner—courts are likely to view the dispute as one that falls within the ADA’s remedial scope. That is, assuming that a plaintiff can show conduct considered discriminatory under the ADA and that a defendant cannot prove an affirmative defense—that is, cannot bring its conduct within a legally permissible exception to the rule of nondiscriminatory conduct—the ADA provides a 3 42 U.S.C. §12101, defining the term “public accommodation” to include health care services. 4 For an exhaustive discussion to date of the use of law to advance health care markets, see U.S. Department of Justice and Federal Trade Commission, Improving Health Care: A Dose of Competition. Available at http://www.ftc.gov/reports/healthcare/040723healthcarerpt.pdf (accessed November 23, 2006). 5 A Dose of Competition, supra. For a legal comparison of national health policies here and abroad, see Timothy Stoltzfus Jost, Disentitlement (New York: Oxford University Press, 2003).

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The Future of Disability in America remedy. In situations involving accessible care, therefore, the major social challenge is how to create remedies that foster accessibility without placing an undue burden on the program. Second, when the claim is one that involves discrimination in the design of health insurance coverage so as to inherently limit the flow of resources to persons whose disabilities create greater health needs, plaintiffs inevitably lose, since any changes would inevitably require an expansion or restructuring of coverage design itself, a remedy that courts view as beyond the remedial limits of the ADA. For example, courts will not order insurers to add coverage for wheelchairs or expand or redesign formulary limits. Third, plaintiffs can prevail, however, if they can show that the discrimination occurs not as part of plan design but as a result of discriminatory choices in how the plan is administered and can also show that the remedy they seek does not involve a “fundamental alteration,” that is, a change in the design of the plan itself. For example, courts may be willing to classify as discriminatory an insurer’s refusal to pay for covered physical therapy for a child with cerebral palsy if it turns out that the denial is based on claims reviewer’s unfounded opinion that children with cerebral palsy cannot improve.6 Fourth, where health care financing cases are concerned, it can be difficult to predict when an ADA claim will be viewed by courts involving remediable discriminatory administration or nonremediable discriminatory design. The same facts may give rise to different judicial approaches to resolving this tension between coverage design and coverage administration, especially when the focus is on whether a claim should be paid. In these cases, it can be unclear as to whether a service is covered but withheld from particular individuals or whether the insurer’s position is that the claim is for an uncovered service. AN OVERVIEW OF THE ADA Termed a “quiet revolution”7 and “a celebration of the uniquely American notion that all of our citizens can contribute to society if we provide 6 See, e.g., Bedrick v. Travelers Insurance Co. (93 F. 3d 149 (4th Cir, 1996)), in which such a dispute was won on the grounds of arbitrary and unfair administration of an Employee Retirement Income Security Act health benefit plan. This type of fact pattern might also give rise to a remediable ADA claim. 7 Statement of Senator Tom Harkin honoring the 15th anniversary of the ADA, Cong. Rec. S. 8804 (July 25, 2005). Available at http://thomas.loc.gov/cgi-bin/query/D?r109:4:./temp/~r1092WcqGT (accessed November 23, 2006).

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The Future of Disability in America them with the tools and opportunities they need,”8 the ADA established a “clear and comprehensive national mandate for the elimination of discrimination against people with disabilities.”9 The Act provides broad protections in the areas of employment, public services, public accommodations, and services operated by private entities and in the areas of transportation and telecommunications. The ADA is a complex legislative structure and a cobbling together of a series of separate legislative measures reported by various congressional committees with jurisdiction over the range of subject areas addressed by the Act. The end result is a civil rights statute of broad applicability, particularly compared with laws that prohibit discrimination on the basis of race and national origin, which are discussed further below. Persons protected under the ADA are “qualified individuals with a disability.”10 A disability under the terms of the Act is a physical or mental impairment that substantially limits one or more major life activities or a record of having such an impairment or being perceived by others as having such an impairment.11 Qualified persons with disabilities are persons who can perform the essential functions of employment12 with or without accommodation or who meet the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by a public entity.13 Several titles of the ADA are directly relevant to this analysis. (Only Title IV, which relates to telecommunications, is not directly related to health care.) Title I prohibits discrimination in employment. It defines employment to include “employee compensation … and other terms, conditions, and privileges of employment.”14 As such, terms would include employer-sponsored health insurance. Four separate federal agencies—the Equal Opportunity Employment Commission, the U.S. Department of Transportation, the Federal Communications Commission, and the U.S. Department of Justice—enforce the legislation’s employment provisions.15 Title II prohibits the denial of benefits or exclusionary conduct under programs and services operated by public entities. In so doing, Title II 8 Statement of Senator John Kyl honoring the 15th anniversary of the ADA, Cong. Rec. S. 8771 (July 25, 2006). Available at http://thomas.loc.gov/cgi-bin/query/F?r109:8:./temp/~r1092WcqGT:e29790 (accessed November 23, 2006). 9 Id. 10 42 U.S.C. §12102(2). 11 Id. 12 42 U.S.C. §12111-12117. 13 42 U.S.C. §12131(2). 14 42 U.S.C. §12112(a). 15 U.S. Department of Labor, Disability Resources: the ADA. Available at http://www.dol.gov/dol/topic/disability/ada.htm (accessed November 23, 2006).

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The Future of Disability in America incorporates and extends the reach of earlier law, Section 504 of the Rehabilitation Act of 1973,16 by encompassing public entities generally, including not only executive agencies but the legislative and judicial branches of state and local governments17 and their instrumentalities,18 regardless of the direct presence of federal funds.19 Title II sets not only a nondiscrimination standard but also an “equality of opportunity” requirement in publicly operated settings.20 This equal opportunity obligation can require a more rigorous modification of services than might otherwise be the case; for example, it may require public clinic mental health counselors to be able to communicate in American Sign Language (ASL) rather than the lower standard of requiring mental health counselors without such language skills to be accompanied by translators.21 As with Title I, an array of federal agencies22 has the power to investigate and enforce the law, including the U.S. Department of Justice and the U.S. Department of Health and Human Services, in the case of both publicly operated and federally supported health care services.23 Although the sweep of ADA Title II reaches all public entities, as with other aspects of the ADA, there is limited specific interpretive guidance on the applicable rules for public entities that may or may not receive federal funds. Title III, which is, in some respects, the most far-reaching ADA title in a health care context, prohibits discrimination by wholly private enterprises that are considered places of public accommodation.24 In a dramatic departure from earlier civil rights laws prohibiting discrimination on the basis of race or national origin, Title III classifies private health care services as 16 29 U.S.C. §794(a). 17 U.S. Department of Justice, Non-Discrimination on the Basis of Disability in State and Local Governments. Available at http://www.usdoj.gov/crt/ada/reg2.html (accessed November 23, 2006). 18 42 U.S.C. §12131(1). 19 Tugg v. Towey 861 F. Supp. 1201, 1205 (S.D. Fl., 1994); Tennessee v. Lane 504 U.S. 514 (2004) §794(a). 20 28 C.F.R. §35.130(b)(1)(i-iii). 21 Id. 22 See U.S. Department of Justice, ADA Investigative Agencies. Available at http://www.usdoj.gov/crt/ada/investag.htm (accessed November 23, 2006). 23 U.S. Department of Health and Human Services, Office of Civil Rights, Your Rights Under the Americans with Disabilities Act. Available at http://www.hhs.gov/ocr/ada.html (accessed November 23, 2006). In its final rules implementing Title II, the U.S. Department of Justice notes under “Compliance Procedures” that Congress expected that activity-relevant federal agencies (in the case of health services, the U.S. Department of Health and Human Services) would interpret and enforce standards in the case of public health facilities. Available at http://www.usdoj.gov/crt/ada/reg2.html (accessed November 23, 2006). 24 42 U.S.C. §12182.

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The Future of Disability in America a public accommodation and without regard to whether service providers are considered recipients of federal financing.25 The fifth and final title covers a number of topics, the most relevant of which for this analysis appears in a section labeled “Construction.”26 This provision, which has come to be known as the “insurance safe harbor,” provides as follows: (c) Insurance Subchapters I through III of this chapter and title IV of this Act shall not be construed to prohibit or restrict— an insurer, hospital or medical service company, health maintenance organization, or any agent, or entity that administers benefit plans, or similar organizations from underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law; or a person or organization covered by this chapter from establishing, sponsoring, observing or administering the terms of a bona fide benefit plan that are based on underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law; or a person or organization covered by this chapter from establishing, sponsoring, observing or administering the terms of a bona fide benefit plan that is not subject to State laws that regulate insurance. Paragraphs (1), (2), and (3) shall not be used as a subterfuge to evade the purposes of … this chapter. The ADA is remedial; that is, the law requires entities covered by the Act to make “reasonable modifications” in activities, programs, and services in the case of qualified individuals with disabilities. Covered entities under both Titles II and III are given certain affirmative defenses, the most prominent of which is a claim that a requested change in fact constitutes a “fundamental alteration”27 rather than a reasonable modification; the concept of fundamental alteration is understood as a change that affects the basic character of the activity, good, or service.28 Additional affirmative defenses allowed under the law are that the plaintiff poses a “direct threat”29 or that the requested change represents an “undue burden.” In a few areas, the law is anticipatory only, in recognition of the need for some level of 25 42 U.S.C. §12181(7). For a general discussion of the unique nature of this provision in relation to earlier laws, see Joel Teitelbaum and Sara Rosenbaum, “Medical care as a public accommodation: moving the discussion to race,” 29 Am. J. Law Med. 381 (2003). 26 42 U.S.C. §12201. 27 See PGA Tour v. Martin, 532 U.S. 661 (2001) (Title III) and Olmstead v. L.C. 527 U.S. 581 (1999). 28 PGA v. Martin 532 U.S. 682–683. 29 Bragdon v. Abbott 526 U.S. 1131 (1999).

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The Future of Disability in America restraint in the implementation of standards. For example, different and more stringent rules on accessibility apply to new construction compared with rules that apply to the removal of barriers in existing facilities.30 Individuals may enforce the ADA privately through litigation to redress a violation of rights guaranteed under law. With respect to government enforcement of the various titles of the ADA, responsibility cuts across various agencies. The U.S. Department of Justice acts as the principle source of regulatory standards31 and formal enforcement actions, with interpretive guidance and investigatory powers vested in other federal agencies responsible for the program within their spheres of expertise. Thus, for example, the U.S. Department of Health and Human Services has the authority to interpret the health care-specific meaning of Title II’s broad regulatory standards32 and to investigate complaints.33 The U.S. Department of Justice retains enforcement authority over health care entities, which under ADA Title III are places of public accommodation; the regulations specify no formal role for other federal agencies.34 Investigation by federal agencies can result in the filing of enforcement complaints by the U.S. Department of Justice on behalf of affected individuals and the federal government itself. These complaints can result in settlements or proceed to full trial. Agency settlements, when they are finally reached, are publicly available and may have important implications for similar covered entities.35 Judicial decisions involving private or government enforcement efforts tend to be viewed as carrying greater weight, since under the United States Constitution it is the judicial branch of government that has the ultimate authority to determine what the law means.36 It is not infrequent to find that courts give only limited weight to the rulings of federal agencies.37 30 28 C.F.R. §§35.150–151 (public facilities); 28 C.F.R. §36.401–402 (public accommodations). 31 All ADA regulations can be viewed at http://www.usdoj.gov/crt/ada/adahom1.htm (accessed November 23, 2006). 32 See U.S. Department of Health and Human Services, Office of Civil Rights, Civil Rights on the Basis of Disability. Available at http://www.hhs.gov/ocr/discrimdisab.html#rights (accessed November 23, 2006). 33 U.S. Department of Health and Human Services, Office of Civil Rights, How to File a Discrimination Complaint with the Office for Civil Rights. Available at http://www.hhs.gov/ocr/discrimhowtofile.html (accessed November 23, 2006). 34 28 C.F.R. §36.501. 35 U.S. Department of Justice, Enforcing the ADA: A Status Report from the Justice Department. Available at http://www.usdoj.gov/crt/ada/statrpt.htm (accessed November 23, 2006). 36 Marbury v, Madison, 1 Cranch 137 (1803). 37 Doe v. Mutual of Omaha Ins. Co., 179 F. 3d 557 (7th Cir., 1999); rehearing and suggestion for rehearing en banc denied (Aug 03, 1999); cert. den. Doe v. Mutual of Omaha Ins. Co., 528 U.S. 1106 (2000) (limited or no weight was given to the Equal Employment Opportunity Commission interpretation of insurance “safe harbor” in an ADA enforcement case involving allegations of discrimination by a health insurer).

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The Future of Disability in America THE ADA AND ACCESS TO HEALTH CARE Physical Access to Health Care Services The essential starting point for understanding the significance of the ADA in a health care context is the common law, the basic set of judicially fashioned legal principles that form the foundation of the American legal system.38 As part of common law, health care professionals and institutions were considered to have no legal duty of care. As private enterprises, they were not considered places of public accommodation in the nature of inns and common carriers; as a result, and regardless of the threat posed, they had no legal obligation either to undertake care39 or to refrain from discriminatory practices in the selection of their customers.40 During the latter half of the 20th century, the “no-duty” principle was legislatively abrogated (i.e., set aside or modified) in certain respects, most notably in state laws related to hospital emergency care and, ultimately, in the case of federal law governing the conduct of hospitals, specifically, the Hospital Survey and Construction Act of 1946 (the Hill Burton Act) and the Emergency Treatment and Labor Act.41 Earlier, Title VI the Civil Rights Act of 1964 had established a nondiscrimination principle in the case of health care services furnished by private providers receiving federal funds, with a non-statutory exception in the case of private physicians receiving payments under Medicare Part B only.42 At the same time, Title II of the 1964 Act, which prohibited discrimination by public accommodations, used a definition of public accommodation that did not reach health care 38 Oliver Wendell Holmes, Jr., The Common Law, 1881. Available online at http://www.law.harvard.edu/library/collections/special/online-collections/common_law/Contents.php (accessed January 4, 2007). 39 Many people confuse the concept of a “Good Samaritan” with the no-duty principle. A Good Samaritan is one who undertakes care and who then is held to a lesser duty of care in consideration of his or her good act. The undertaking itself is totally voluntary, however. 40 Rand Rosenblatt, Sylvia Law, and Sara Rosenbaum, Law and the American Health Care System (New York: Foundation Press, 1997; 2001-2002 Supplement), Ch. 1, The impact of U.S. law on medicine as a profession; Sara Rosenbaum, “The impact of United States law on medicine as a profession,” JAMA 289:1546–1556 (2003). 41 Rand Rosenblatt, Sylvia Law, and Sara Rosenbaum, Law and the American Health Care System (New York: Foundation Press, 1997), Ch. 1, The impact of U.S. law on medicine as a profession. 42 For a history of how Medicare-participating physicians gained a (nonstatutory) exception from Title VI, see David Barton Smith, Health Care Divided (Ann Arbor: University of Michigan Press, 1999). Current legal interpretation of physicians’ Part B exemption limits the exemption to physicians participating in “traditional” Medicare, that is, Medicare Part B direct fee-for-service payments only. See, e.g., U.S. Department of Health and Human Services, Office of Civil Rights, Guidance to Federal Financial Assistance Recipients Regarding Title VI Prohibition Against National Origin Discrimination Affecting Limited English Proficient Persons. Available at http://www.hhs.gov/ocr/lep/revisedlep.html (accessed November 23, 2006).

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The Future of Disability in America services. Most hospitals did, however, receive some form of federal funds (e.g., payments for serving Medicare beneficiaries) and were thereby prohibited from discriminating on the basis of race or national origin. The ADA fundamentally expanded on this abrogation of the common law by explicitly classifying health care services as a public accommodation. No legislative history accompanies this significant expansion of the concept of “place of public accommodation.” Indeed, discussions by the author with persons involved in the drafting of Title III suggests that, perhaps in a sign of the times, by 1990 it simply did not occur to anyone (including the American Medical Association, which supported the law) that health care (which figured prominently in the minds of disability advocates as an example of discrimination and was so identified in the Preamble to the statute)43 was anything other than a place of public accommodation. Although it is most frequently cited as the case that established asymptomatic human immunodeficiency virus (HIV) infection as a disability, the U.S. Supreme Court’s decision in Bragdon v. Abbott44 is equally powerful for its holding that confirmed that private health care providers are places of public accommodation for the purposes of ADA enforcement. They are thus are prohibited from engaging in conduct considered discriminatory.45 Title III of the Act classifies a broad array of conduct as discriminatory: subjecting individuals, either directly or “through contractual arrangements” to a “denial of the opportunity to participate in or benefit from” the goods and services of public accommodations; affording individuals an opportunity to participate that is “not equal” to that afforded other individuals; or to provide qualified individuals with goods, services, or accommodations “different or separate from” that afforded other individuals unless separate or different services are necessary to provide individuals with goods, services, or accommodations as effective as that provided to others.46 Importantly, Title III requires only that discriminatory conduct be shown in effect, not as a matter of intent, prohibiting administrative methods that “have the effect of discriminating on the basis of disability” or that perpetuate discrimination.47 Beyond its general prohibitions, Title III sets forth a detailed list of prohibited activities (many of which transfer easily to health care settings), as well as a series of affirmative defenses that place the burden of proof squarely on a health care facility. For example, it is con- 43 42 U.S.C. §12101(a)(3). 44 524 U.S. 624 (1999). 45 Rand Rosenblatt, Sylvia Law, and Sara Rosenbaum, Law and the American Health Care System (New York: Foundation Press, 1997), Ch. 1, The impact of U.S. law on medicine as a profession. 46 42 U.S.C. §12182. 47 Id.

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The Future of Disability in America sidered discriminatory to impose eligibility criteria that would screen out individuals with disabilities (e.g., refusing to provide mental health services to persons who are infected with HIV or who are deaf) unless a facility can show that the criteria are necessary for the provision of the services being offered.48 Likewise, it would be discriminatory to fail to make “reasonable modifications in policies, practices and procedures” when such modifications are “necessary to afford” services to individuals with disabilities (e.g., offering patient education materials in braille) unless a health care provider can demonstrate that making such modifications would “fundamentally alter” the nature of the service.49 It also would be discriminatory for a health care facility to fail to treat an individual “in the most integrated setting appropriate to the needs of the individual.”50 It would also be a violation of the Act to “take such steps as may be necessary to ensure” that qualified individuals with disabilities are not “excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services,” unless the facility can demonstrate that such steps would “fundamentally alter” the nature of the service or would “result in an undue burden.”51 Title III also provides, however, that “nothing … shall require an entity to permit an individual to participate” in offered services where the individual “poses a direct threat to the health or safety of others.”52 The term “direct threat” means “a significant risk to the health or safety of others that cannot be eliminated by a modification of policies, practices, or procedures or by the provision of auxiliary aids or services.”53 Interpretive guidance issued by the U.S. Architectural and Transportation Compliance Board (the “Access Board”) sets forth guidelines for the construction and alteration of all facilities and buildings falling within Titles II and III of the ADA, thereby covering both public and private health care facilities.54 The guidelines specifically discuss the accessibility of medical care facilities, defined as facilities “in which people receive physical or medical treatment or care and where persons may need assistance in responding to an emergency and where the period of stay may exceed 24 hours”.55 Whether the office of a private health care professional constitutes a 48 42 U.S.C. §12182(b)(1)(A)(i). 49 42 U.S.C. 12182(b)(A)(ii). 50 42 U.S.C. §12182(b)(2)(B). 51 42 U.S.C. 12182(b)(A)(iii). 52 42 U.S.C. 12182(b)(3). 53 42 U.S.C. §12182. 54 Access Board, ADA Accessibility Guidelines for Buildings and Facilities. Available at http://www.access-board.gov/adaag/html/adaag.htm (accessed November 23, 2006). 55 Id.

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The Future of Disability in America place of public accommodation governed by the ADA’s nondiscrimination and “most integrated setting” provisions was tested in Bragdon v. Abbott,56 which involved the refusal of a dentist to fill a cavity of a person with asymptomatic HIV in his office. In essence, the defendant was charged with administering his dental practice in a discriminatory fashion, and his intent to discriminate was irrelevant. Bragdon’s defense was that the patient posed a direct threat, which in turn eliminated his duty of care. The U.S. Supreme Court’s decision contains a valuable discussion of the conditions under which health care providers can succeed on a “direct threat” defense. During the trial, Bragdon attempted to challenge the evidentiary value of universal precautions guidelines of the Centers for Disease Control and Prevention (CDC), which set forth a series of steps that, if adopted by health professionals, would eliminate any “significant” risk associated with the treatment of persons with HIV. Defendant’s arguments failed; on appeal, the Court of Appeals treated the CDC guidelines as conclusive evidence of insignificant risk, thereby denying Bragdon the right to mount a “direct threat” defense at all. The Court ruled, however, that although the CDC guidelines carried weight, they were not conclusive and could be challenged for their reliability,57 leaving the door open to future “direct threat” defenses by public accommodations, even where government guidelines specify the procedures for eliminating a threat. (When the case was remanded for further proceedings on the direct threat defense, Bragdon was unable to prove the existence of a threat or to overcome the presumption of an insignificant threat created by the CDC guidelines). The ADA defense that a proposed reasonable modification in fact creates an “undue burden” on a defendant is also common in a health care context. The concept of an “undue burden” is a requested modification that poses “significant difficulty or expense.”58 In health care, where the cost of the service is high to begin with and the importance of effective communication is great, the case law suggests some skepticism on the part of courts regarding the claim when the issue is interpreters, although the courts have a greater willingness to consider the defense when removal of architectural barriers in existing construction is the issue. For example, in Majocha v. Turner,59 the refusal of a pediatric practice to furnish an ASL interpreter during a consultative visit was held actionable, after the practice not only refused to secure translation services but went so far as to send plaintiffs a letter advising them that they were refusing 56 524 U.S. 624 (1999). 57 The U.S. Supreme Court remanded the case for further proceedings on the direct threat question, and Bragdon was unable to show evidence to lead the trial court to reject the guidelines. 58 Davis v. Flexman 109 F. Supp 2d 776 (S. D. Oh., 1999). 59 166 F. Supp. 2d 316 (W.D. Pa., 2001).

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The Future of Disability in America sought by the patient is one whose underlying medical facts would cause a reasonable decision maker to classify the surgery as medical in nature rather than cosmetic. On the other hand, if the coverage agreement specifically excludes breast reconstruction following a mastectomy, there is no appealable issue if the event leading to the reconstruction request is a mastectomy. In sum, certain types of medical necessity decisions involve purely legal interpretations related to the content of coverage. Appealable cases are those that rest on factual questions to be resolved by a decision maker. Olmstead and Discriminatory Allocation of Resources Within an Established Plan Design A signature case in the field of discrimination in the administration of insurance is Olmstead v L.C.71 In Olmstead, plaintiffs mounted an ADA Title II claim of discriminatory administration of a public health care financing program. The fact that the public financing scheme involved Medicaid added a critical dimension to the case, since the defendant, the administrator of the public program, could present a theory of the case stating that what plaintiffs sought was more coverage, not fairer administration of existing coverage. The U.S. Supreme Court rejected this view, finding instead that the case involved the discriminatory administration of Georgia’s Medicaid program. Nonetheless, once it turned to the remedial question—how to remedy the discriminatory practice of failing to make the state’s community benefit coverage accessible to plaintiffs—the Court was forced to confront the problem of coverage design. The Olmstead decision is best known for its eloquent central holding that medically unjustifiable institutionalization constitutes discrimination under Title II of the ADA. In this regard the decision serves as a reminder that even public insurance programs are subject to ADA scrutiny. At the same time, the effort on the part of the Olmstead court to parse the remedy so as to avoid the fundamental alteration problems inherent in altering benefit design has led to years of judicial involvement in dozens of similar cases, many of which have had unsatisfactory conclusions from the plaintiffs’ viewpoint. The facts of Olmstead are relatively well known. Two Georgia women, who were both qualified individuals with disabilities, received public funding for long-term institutional care but were unable to get the state Medicaid program to cover long-term personal care and other services provided in the community, even though the women’s own treating physicians deter- 71 527 U.S. 581 (1999). Note that that the Olmstead and Bragdon cases occurred in the same term of the U.S. Supreme Court, a not unusual tendency on the part of the Court to take a related series of cases in order to explore the dimensions of a particular body of law.

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The Future of Disability in America mined that institutional care was not medically justifiable. The state Medicaid plan covered more than 2000 “home and community based services slots” under a special federal law permitting states to extend home coverage to persons at risk for institutional placement, but the legislature had funded only a fraction of the federally approved services. Federal law permits states to cap the number of placements funded under the state plan, and states are also allowed to limit their request to a certain number of “slots.” The trial record showed that Georgia had some 2,100 federally approved slots but funded the state share of the costs at a level sufficient to support only about 700 placements. Beyond its “unjustifiable institutionalization” holding, the U.S. Supreme Court was then forced to confront a more basic fact: a state Medicaid program that, even if it is properly administered, covered less than the full amount of the community services needed (federal Medicaid law permits states to place a fixed, aggregated cap on the home- and community-based services that they will finance, and while Medicaid spending on community services has increased significantly,72 coverage is still less than demand). The Court refused to order the state to spend more than its plan specified to ensure appropriate financing of community services up to the level of need,73 precisely because such a step would have constituted a fundamental alteration of the state’s scheme for financing health care for persons with mental disabilities. Instead, the Court set a “reasonable pace” standard, which in practice has operated as a judicial instruction to slowly reallocate spending priorities within an existing benefit design:74 To maintain a range of facilities and to administer services with an even hand, the State must have more leeway than the courts below understood the fundamental-alteration defense to allow. If, for example, the State were to demonstrate that it had a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved 72 Heidi Reester, Raad Missmar, and Anne Tumlinson, Recent Growth in Medicaid Home and Community Based Services (Washington, DC: Kaiser Commission on Medicaid and the Uninsured). Available at http://www.kff.org/medicaid/upload/Recent-Growth-in-Medicaid-Home-and-Community-Based-Service-Waivers-PDF.pdf (accessed November 23, 2006). 73 The Court of Appeals would have had the state furnish community services to all persons for whom institutional care was unnecessary, so long as the annual per-capita cost of community care was less than the institutional cost. This remedy could have, however, resulted in greater expenditures if persons in need of institutional care moved in to take the place of those living in the community so that the total population of people receiving long-term-care services grew. 74 Critical to the U.S. Supreme Court’s decision was the notion that the entire 2,100 home-and community-based care slots were part of the coverage scheme but were going unused because of discriminatory underfunding of community placements and deliberate overfinancing of institutional care.

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The Future of Disability in America at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated, the reasonable-modifications standard would be met.75 Within the context of the ADA, the U.S. Supreme Court arguably did what it could to avoid breaching the limits imposed by the fundamental alteration defense. At the same time, the ambiguous balancing framework set out in its decision has triggered years of challenges by plaintiffs attempting to push states harder to rebalance their spending. Cases have involved both classes of plaintiffs and individual plaintiffs, and the decisions have created a jumble of winners and losers. In some of the cases, plaintiffs have prevailed because they have convinced the courts that the issue is a state’s failure to make an adequate effort to fairly allocate its resources within its existing benefit design. In other cases, plaintiffs have lost because the courts perceive the dispute as one involving demands for more—or faster—community coverage, thereby tipping the case into the realm of fundamental alteration.76 A recent decision by the U.S. Court of Appeals in The ARC v. Braddock77 illustrates the difficulties encountered in the Olmstead litigation. The ARC involved a class challenge to Washington State’s investment in community services. The court opened its decision by noting that once again it was navigating “the murky waters between two statutory bodies: the ADA and the Medicaid Act.”78 That action posed the following specific question: whether a state violates the ADA when it limits the number of people that can participate in a Medicaid waiver program providing disabled persons with alternatives to institutionalization.”79 The specifics of the case focused on Washington State’s 10,000-person limit on Medicaid home and community care slots. The U.S. Court of Appeals noted that federal Medicaid law specifically contemplates a cap on slots as a state plan option. The court then proceeded to offer a lengthy and thoughtful explanation that attempted to distinguish between factual situations that raise the issue of unlawful discrimination and those that exhibit compliance with the “reasonable pace” standard. The court noted that Olmstead did not force the U.S. Supreme Court to consider lifting the waiver cap because the state had never allocated funds to the slots that were already part of its state plan. The Court of Appeals also noted that in an 75 527 U.S. 605–606. 76 Olmstead at Five, op. cit. 77 427 F. 3d 615 (9th Cir., 2005). 78 427 F. 3d 617. 79 Id.

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The Future of Disability in America earlier decision, Townsend v. Quasim,80 the issue was the improper administration of benefit design when the state forced medically needy individuals into nursing facilities while extending community services to categorically needy persons and was thereby discriminatory on its face. The present case, however, like an earlier case in the same circuit, Sanchez v. Johnson,81 involved the very size of the waiver program. The plaintiffs, in essence, were asking for more services than the state presently covered; and therefore, the court rejected the claim, concluding that the state’s deinstitutionalization plan was acceptable in light of the facts surrounding its effort to retool its Medicaid program to more heavily emphasize community-based care. In neither Sanchez nor the present case did the mere existence of a cap violate Olmstead; instead, the issue was the size of the state’s program and the pace at which the state was moving to raise the cap on community coverage. The court’s discussion of the facts underscores the tipping point in Olmstead cases when challenges to administration become challenges to design: Plaintiffs acknowledge that the state’s HCBS [home and community-based services] program is capped at 9,977 disabled persons, and the program is operating at capacity. Yet they argue the program is not large enough…. The record reflects that Washington’s commitment to deinstitutionalization is as “genuine, comprehensive and reasonable” as the state’s commitment in Washington’s HCBS program is substantial in size, providing integrated care to nearly 10,000 Medicaid-eligible disabled persons in the state. The waiver program is full, and there is a waiting list that admits new participants when slots open up. Unlike in Townsend, all Medicaid-eligible disabled persons will have an opportunity to participate in the program once space becomes available, based solely on their mental-health needs and position on the waiting list. Further, the size of Washington’s HCBS program increased at the state’s request from 1,227 slots in 1983 … to 9,977 slots beginning in 1998. The annual state budget for community-based disability programs such as HCBS more than doubled from $167 million in fiscal year 1994, to $350 million in fiscal year 2001, despite significant cutbacks or minimal budget growth for many state agencies. During the same period, the budget 80 Townsend, discussed in Olmstead at Five, involved a challenge to the institutionalization of a man whose monthly income rose by literally a few dollars, but enough to place him just above the cutoff for categorically needy Medicaid coverage and into the realm of the medically needy “spend-down” program. Washington State covered community services for categorically needy persons only, and he was forced to give up his 17-year community residential placement and to enter a nursing home. Despite the fact that institutional versus community services were part of the state’s benefit design for Medicaid, the court held that the case involved discriminatory administration of long-term-care assistance and ordered relief. In short, the court flipped a design case into the administration classification. 81 416 F. 3d 103 (9th Cir., 2005) involving a challenge to the size of California’s community care program.

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The Future of Disability in America for institutional programs remained constant, while the institutionalized population declined by 20%. Today, the statewide institutionalized population is less than 1,000…. We do not hold that the forced expansion of a state’s Medicaid waiver program can never be a reasonable modification required by the ADA. What we do hold is that, in this case, Washington has demonstrated it has a “comprehensive, effectively working plan,” and that its commitment to deinstitutionalization is “genuine, comprehensive and reasonable.” 82 The Ninth Circuit Court thus looked at the rate of growth over time in terms of both funds and services and compared that rate of growth to those of other human services during the same time period. While the court left the door open to future reconsideration, it appears that the pace of investment would have to slow considerably before the Court might be persuaded. Another helpful exploration of how the balancing test is approached from an evidentiary perspective can be found in Martin v. Taft,83 a case involving a class action by 12,000 persons who alleged that the state was, effectively, doing nothing to help them move into community settings. Plaintiffs sought an order establishing a 5-year remedial time frame. In ordering a trial on the issue of reasonable pace, the court also set out what each side would have to prove. The initial burden of demonstrating that a reasonable accommodation is available rests with plaintiffs. Once the plaintiff meets the burden of demonstrating this element, along with the other prima facie elements, the burden then shifts to the State to show that the requested accommodation is not reasonable.84 The court went on to note that plaintiffs erred in relying on Olmstead for the proposition that waiting lists moving at a reasonable pace constituted the sole means by which defendants could prove the reasonableness of their efforts and resist a faster pace as a fundamental alteration. The presence or absence of an existing state plan and a waiting list that moves at a reasonable pace does nothing whatsoever to answer whether, in the first instance, a reasonable modification is available…. In addition, as Olmstead requires a far more involved inquiry than cost per individual; it directs the Court to consider all of the demands on the State’s mental health budget, as well as the State’s legitimate interest in maintaining a broad range of services to address the different needs of individuals…. [D]efendants must do far more than make arguments such as that defendants are not motivated by the desire to keep institutions 82 427 F. 3d 618–621. 83 222 F. Supp. 940 (S.D. Ohio, 2005). 84 2222 F. Supp. 2d 986–990.

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The Future of Disability in America full…. [T]hey must demonstrate that making the modifications would fundamentally alter the nature of the existing community-based service program. Failure to carry this burden could result in the entry of judgment in favor of plaintiffs. In other words, the court rejected the notion that movement toward community services was the only plausible defense and invited defendants to show that other state needs (such the medical need to maintain treatment services) prevented further investment in community services. The trial court went so far as to argue that a state could show that it satisfied the Olmstead test even in the absence of any plan or further reasonably paced movement by proving that it already was reasonably accommodating the need for community care, based on the current expenditure of resources. The court then set out the criteria by which it would judge defendants’ “fundamental alteration” defense at trial: 1. The resources available to the State; 2. The State’s responsibility to care for and treat a large and diverse population of persons with mental disabilities, including those who will require services in an institutional setting; [and] 3. Whether the relief plaintiffs seek would be inequitable given the above considerations.85 Other Discriminatory Administration Challenges In a non-Olmstead context, several other Title II discriminatory administration claims have met with success. For example, in Rodde v. Bonta86 the court upheld an injunction against the closure of the Rancho Los Amigos National Rehabilitation Center in Los Angeles County, California, which was part of the county’s hospital system. The basis for the injunction against the closure was the county’s inability to demonstrate that it had equally appropriate and physically accessible services elsewhere in the system for plaintiffs, all of whom were patients with serious and long-term medical conditions. In effect, the county had made no reasonable accommodation for patients with disabilities prior to instituting a closure plan, thus creating a legal result similar to that for the Washington Hospital Center case (which focused on physical and communications accessibility) settlement discussed above. In addition, a 2003 decision by the U.S. Court of Appeals for the Second Circuit found a violation of the ADA in the manner in which New York City was administering its public programs for persons with HIV and AIDS. As in Olmstead case, the court examined the burdens placed upon the plaintiffs in their efforts to secure services used by other populations, 85 2222 F. Supp. 2d 986–990. 86 357 F. 3d 988 (9th Cir., 2004).

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The Future of Disability in America with and without disabilities, dependent on public services. The case centered on patient support services that were designed to assist plaintiffs—all persons experiencing AIDS and HIV-related illnesses and in weakened conditions—navigate the welfare system but that, in fact, were never furnished. As in Olmstead, the services covered under the New York City plan were available on paper only and were never funded or furnished. In this case, the missing services were patient support and enabling services that made health care accessible and effective. Challenges to Coverage Design There are very few cases in which the challenge is directly against coverage design, but the few that do exist underscore that modifying the design of an insurance plan is considered a fundamental alteration. The basic case in the field is Alexander v. Choate,87 a 20-year-old U.S. Supreme Court decision that arose under Section 504 of the Rehabilitation Act of 1973, the predecessor to ADA Title II. Once again, the case involved Medicaid, but this time the challenge was to Tennessee’s 14-day annual limit on inpatient hospital care. The essence of the claim was that the 14-day hospital inpatient coverage limit left persons with disabilities with insufficient coverage in light of their greater health care needs. Plaintiffs offered numerous alternatives, specifically, the adoption of a diagnosis-related group-style, per-case limit that varied by diagnosis or condition, recognized length-of-stay “outlier” cases, and averaged payment across more and less expensive patients. In plaintiffs’ view, such an alternative, which would have allowed variability linked to underlying condition (e.g., lower payments for less complex cases and higher payments for more resource-intensive cases), would have had a less harsh impact on persons with disabilities. In essence, plaintiffs’ theory of the case was that the issue at hand was the means of administering hospital inpatient payments. The appellate court agreed that plaintiffs had made out a prima facie claim and that the burden of proof shifted to states as defendant to offer alternatives or explain why alternatives would be unreasonable. The state appealed. After ruling that discriminatory intent was not necessary to make out a Section 504 claim, Justice Thurgood Marshall, writing for a unanimous U.S. Supreme Court, made clear that in the Court’s view, the claim amounted to a challenge to benefit design, that is, a direct attack on the content of coverage, as well as a request for individually tailored coverage, rather than a case to address discriminatory plan administration. Section 504, the Court held, required only that persons with handicaps (the predecessor term for disabilities) be given meaningful access “to the benefit that 87 469 U.S. 287 (1985).

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The Future of Disability in America the [program] offers.”88 Rejecting arguments that the “benefit offered” in this case was inpatient hospital care and that limits on the benefit therefore were a matter of plan administration, the court characterized the 14-day benefit as an embedded aspect of the plan’s coverage design itself. The question thus became simply whether all persons, regardless of disability, had equal access to the coverage: To the extent respondents further suggest that their greater need for prolonged inpatient care means that, to provide meaningful access to Medicaid services, Tennessee must single out the handicapped for more than 14 days of coverage, the suggestion is simply unsound. At base, such a suggestion must rest on the notion that the benefit provided through state Medicaid programs is the amorphous objective of “adequate health care.” But Medicaid programs do not guarantee that each recipient will receive that level of health care precisely tailored to his or her particular needs. Instead, the benefit provided through Medicaid is a particular package of health care services, such as 14 days of inpatient coverage. That package of services has the general aim of assuring that individuals will receive necessary medical care, but the benefit provided remains the individual services offered—not “adequate health care.”89 In essence, the U.S. Supreme Court rejected the effort to equate coverage with adequacy of care and assumed that the equality of treatment standard was met under Section 504 as long as all persons, regardless of handicap, had equal access to whatever coverage was available. It rejected any notion that Section 504 somehow altered the discretion of state Medicaid programs, acting under federal Medicaid law, over matters of benefit design: Respondents argue that the inclusion of any annual durational limitation on inpatient coverage in a state Medicaid plan violates § 504. The thrust of this challenge is that all annual durational limitations discriminate against the handicapped because (1) the effect of such limitations falls most heavily on the handicapped and because (2) this harm could be avoided by the choice of other Medicaid plans that would meet the State’s budgetary constraints without disproportionately disadvantaging the handicapped. [Section] 504 does not require the changes respondents seek. In enacting the Rehabilitation Act and in subsequent amendments, Congress did focus on several substantive areas—employment, education, and the elimination of physical barriers to access—in which it considered the societal and personal costs of refusals to provide meaningful access to the handicapped to be particularly high. But nothing in the pre- or post-1973 legislative 88 469 U.S. 720. 89 469 U.S. 721.

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The Future of Disability in America discussion of § 504 suggests that Congress desired to make major inroads on the States’ longstanding discretion to choose the proper mix of amount, scope, and duration limitations on services covered by state Medicaid.90 Later cases considering the same issues—the legality of restrictive benefit design under civil rights law applicable to persons with disabilities—reached the identical conclusion. As noted, by their very nature, the Olmstead cases raise questions of benefit design, at least from the viewpoint of defendants, and the cases show the tension that arises as courts struggle with the challenge of how to characterize the claims presented and fashion a remedy. Perhaps the most significant example of the rejection of benefit design challenges in an ADA context is Doe v. Mutual of Omaha,91 which eliminated any notion that the ADA could be used to challenge benefit design limits. The case opened with this startling introduction: Mutual of Omaha appeals from a judgment that the AIDS caps in two of its health insurance policies violate the public accommodations provision of the Americans with Disabilities Act. One policy limits lifetime benefits for AIDS or AIDS-related conditions (ARC) to $25,000, the other limits them to $100,000, while for other conditions the limit in both policies is $1 million. Mutual of Omaha has stipulated that it “has not shown and cannot show that its AIDS Caps are or ever have been consistent with sound actuarial principles, actual or reasonably anticipated experience, bona fide risk classification, or state law.” It also concedes that AIDS is a disabling condition within the meaning of the Americans with Disabilities Act.92 With this introduction, Judge Richard Posner, one of the nation’s most influential jurists and a prominent proponent of markets, proceeded to demolish the argument that the ADA somehow altered the market freedoms enjoyed by insurers, much as Justice Marshall had disposed of any notion that Section 504 in some way altered the basic rules of state Medicaid discretion over coverage design (within federal limits). In an opinion notable for the strength of its tone, the Mutual of Omaha case made clear that Title III reaches the physical aspects (such as whether the offices of insurers are physically available), as well as the sale of insurance products to persons with disabilities, but does not reach content. The majority decision went on to dismiss the very presence of an insurance “safe harbor” as evidence of congressional intent to reach the content 90 469 U.S. 723. 91 179 F 3d 557 reh.den. (1999); cert. den. Doe v Mutual of Omaha Ins. Co. 528 U.S. 1106 (2000). 92 137 F. 3d 558.

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The Future of Disability in America of coverage, despite the fact that the safe harbor on its face sets the standard for distinguishing between lawfully structured product design and design that is not lawful: The plaintiffs argue … that the insurance exemption has no function if section 302(a) does not regulate the content of insurance policies, and so we should infer that the section does regulate that content. But … the industry may have obtained the rule of construction in section 501(c) just to backstop its argument that [Title III] regulates only access and not content…. Or it may have worried about being sued … for refusing to sell an insurance policy to a disabled person…. For Mutual of Omaha to take the position that people with AIDS are so unhealthy that it won’t sell them health insurance would be a prima facie violation of [Title III]. But the insurance company just might be able to steer into the safe harbor provided by section 501(c), provided it didn’t run afoul of the “subterfuge” limitation, as it would do if, for example, it had adopted the AIDS caps to deter people who know they are HIV positive from buying the policies at all.93 SUMMARY This review suggests that the ADA has made a significant contribution in the realm of physical access to care among persons with disabilities, removing many of the grounds on which a private health care provider or health care system might refuse to accept persons with disabilities into care. The ADA has also had a notable impact on the extent to which public and private health insurers can be held accountable for discriminatory administration. However, once a dispute is understood as being centered on the question of coverage design and content—meaning the amount of benefits, the range of benefits, and the definitions used to allocate benefits—the ADA ceases to offer a remedy, since any modification of coverage design itself arguably becomes a fundamental alteration. One aspect of this analysis bears further reflection, namely, the notable absence of health care-specific guidelines for use in services and coverage. Such guidelines, even if they are not actively enforced by federal investigators, can serve an immensely useful process in guiding health care service providers and insurers on questions of corporate compliance, a major focus of all health care entities in the modern world. Neither the U.S. Department of Justice nor the U.S. Department of Health and Human Services appears to have used its considerable authority to develop comprehensive guidance tailored to the health care industry that might delineate the stan- 93 137 F. 3d 560.

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The Future of Disability in America dards of compliance expected under public programs and public health care accommodations. The need for such guidance ranges from a clear explanation regarding the meaning of the broad federal rules within health care facilities to an explanation of the types of health benefit administration practices that could be considered discriminatory. While the Access Board sets standards for the modification and construction of facilities, these standards do not speak to internal equipment and operations that play an equal role in access, nor is there language guidance for health services providers in an ADA context that is comparable to the guidance that applies to persons with limited English proficiency. Robust ADA guidance regarding public and private insurance and employee health plan administration is also lacking. At what point do certain practices become discriminatory methods of administration? When would medical necessity decision making, for example, lose its “design” characteristics and become the arbitrary denial of coverage to persons with disabilities? When might the refusal to pay a claim cease being a limitation on coverage and be transformed into the discriminatory withholding of covered benefits because of the patient’s disability? The cases—as well as the complexity of health care itself—suggest a need for carefully developed guidelines that help health care corporations understand the meaning of the ADA in both health care and coverage decision making and payment. ACKNOWLEDGMENT The author thanks Nancy Lopez for research assistance.