A Right to Personal Assistance Services: "Most Integrated Setting Appropriate" Requirements and the Independent Living Model of Long-term Care

American Journal of Law and Medicine

Volumn 27, Issue 1, 2001, Pages 17-43

  Batavia, Andrew I ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; ARTICLE; CONSUMER ADVOCACY; DAILY LIFE ACTIVITY; DISABLED PERSON; HOME CARE; HOME FOR THE AGED; HUMAN; LEGAL ASPECT; LONG TERM CARE; MEDICAID; NONBIOLOGICAL MODEL; ORGANIZATION AND MANAGEMENT; UNITED STATES;

ACTIVITIES OF DAILY LIVING; AGED; CONSUMER ADVOCACY; DISABLED PERSONS; HOMEMAKER SERVICES; HOUSING FOR THE ELDERLY; HUMANS; LONG-TERM CARE; MEDICAID; MODELS, ORGANIZATIONAL; UNITED STATES;

EID: 0035223243     PISSN: 00988588     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (211)

1. See Joshua M. Wiener & David G. Stevenson, State Policy On Long-Term Care For The Elderly; States approach their long-term care policies differently, but all agree that curbing spending is the top priority, HEALTH AFF., May-June, 1998, at 81, 81 (discussing three broad strategies being used by states to contain their long-term care spending: offsetting state spending with increased private and federal contributions, making the delivery system more efficient, and using traditional cost-control mechanisms, including controlling the nursing home bed supply and cutting Medicaid reimbursement rates).
2. See H. STEPHEN KAYE ET AL., U.S. DEP'T OF EDUCATION, NAT'L INST. ON DISABILITY & REHABILITATION RESEARCH, TRENDS IN DISABILITY RATES IN THE UNITED STATES, 1970-1994 (1996).
3. See id.
4. See Andrew I. Batavia et al., Toward a National Personal Assistance Program: The Independent Living Model of Long-Term Care for Persons with Disabilities, 16 J. HEALTH POL., POL'Y & L. 525, 547 (1991).
5. See Peter S. Arno et al., The Economic Value Of Informal Caregiving, HEALTH AFF., Mar.-Apr. 1999, at 184, 185 (discussing the current market value of the care provided by unpaid family members and friends to ill and disabled adults).
6. See NATIONAL ALLIANCE FOR CAREGIVING AND AMERICAN ASSOCIATION OF RETIRED PERSONS, FAMILY CAREGIVING IN THE U.S.: FINDINGS FROM A NATIONAL SURVEY (1997) (visited Feb. 28, 2001) 〈http://www.caregiving.org/content/repsprods.asp〉.
7. See generally Margaret Nosek, Personal Assistance Services: A Review of Literature and Analysis of Policy Implications, 2 J. DISABILITY POL'Y STUDIES 1 (1991).
8. See Batavia et al., supra note 4, at 528 ("The services provided are viewed as health care services rather than social services. Care is provided by trained health care aides in accordance with a plan by a physician and supervised by a nurse.").
9. See Robyn I. Stone, Long-term Care for the Elderly with Disabilities: Current Policy, Emerging Trends, and Implications for the Twenty-First Century, MILBANK MEM. FUND, 2000, at 1, 16.
10. See Kenneth Hubbard, The Medicaid Cost Crisis: Are There Solutions to the Financial Problems Facing Middle-Class Americans Who Require Long-Term Health Care?, 43 CLEV. ST. L. REV. 627.
11. For purposes of this paper, the term "disability" refers to a limitation in function or activity resulting from a physical or mental impairment. A "chronic condition" refers to the presence of a specific diagnosed impairment that has long-term consequences for the individual. Chronic conditions may or may not result in a functional or activity limitation. The long-term care population consists of people with disabilities that reduce their functional capacity to take care of themselves independently.
12. See Batavia et al., supra note 4, at 528 ("The early 1970s marked the beginning of the 'independent living movement,' initiated largely by working age disabled persons who sought to remove the social and environmental barriers to living independently in their communities").
13. See id. at 529 (likening the receipt of services from these non-professional assistants to buying services instead of being a patient).
14. See id. at 521 (noting that the independent living model has even been attacked because of a perceived lack of accountability among assistants and of quality). There are numerous possible ways in which to implement the independent living model. The sub-model that arguably provides the greatest amount of control to the consumer involves giving the consumer a specified amount of money every month to purchase personal assistance services according to their needs. This model is being demonstrated and evaluated currently under the Cash and Counseling Demonstration funded in part by the Robert Wood Johnson Foundation.
15. See Phillip W. Beatty et al., Personal Assistance for People with Physical Disabilities, 79 ARCH. PHYS. MED. REHAB. 674, 676 (1998); Pamela Doty et al., Consumer-Directed Models of Personal Care: Lessons from Medicaid, 74 MILBANK Q. 377, 395 (1996) (finding individuals in client- directed care are overall very satisfied with their aide); Jane Mattson-Prince, A rational approach to long-term care: comparing the independent living model with agency-based care for persons with high spinal cord injuries, SPINAL CORD 326, 330 (1997) (finding that persons not using agencies realized a lower cost of care, better health status, and greater life satisfaction than those who were using agencies); Margaret A. Nosek, Personal Assistance: Its Effect on the Long-term Health of a Rehabilitation Hospital Population, 14 ARCH. PHYS. MED. REHAB. 127, 128 (1993) (finding a relationship between the adequacy of personal assistance received by an individual with a severe physical disability and the ability of that individual to maintain good health).
16. See Phillip W. Beatty et al., Personal Assistance for People with Physical Disabilities, 79 ARCH. PHYS. MED. REHAB. 674, 676 (1998); Pamela Doty et al., Consumer-Directed Models of Personal Care: Lessons from Medicaid, 74 MILBANK Q. 377, 395 (1996) (finding individuals in client-directed care are overall very satisfied with their aide); Jane Mattson-Prince, A rational approach to long-term care: comparing the independent living model with agency-based care for persons with high spinal cord injuries, SPINAL CORD 326, 330 (1997) (finding that persons not using agencies realized a lower cost of care, better health status, and greater life satisfaction than those who were using agencies); Margaret A. Nosek, Personal Assistance: Its Effect on the Long-term Health of a Rehabilitation Hospital Population, 14 ARCH. PHYS. MED. REHAB. 127, 128 (1993) (finding a relationship between the adequacy of personal assistance received by an individual with a severe physical disability and the ability of that individual to maintain good health).
17. See Phillip W. Beatty et al., Personal Assistance for People with Physical Disabilities, 79 ARCH. PHYS. MED. REHAB. 674, 676 (1998); Pamela Doty et al., Consumer-Directed Models of Personal Care: Lessons from Medicaid, 74 MILBANK Q. 377, 395 (1996) (finding individuals in client- directed care are overall very satisfied with their aide); Jane Mattson-Prince, A rational approach to long-term care: comparing the independent living model with agency-based care for persons with high spinal cord injuries, SPINAL CORD 326, 330 (1997) (finding that persons not using agencies realized a lower cost of care, better health status, and greater life satisfaction than those who were using agencies); Margaret A. Nosek, Personal Assistance: Its Effect on the Long-term Health of a Rehabilitation Hospital Population, 14 ARCH. PHYS. MED. REHAB. 127, 128 (1993) (finding a relationship between the adequacy of personal assistance received by an individual with a severe physical disability and the ability of that individual to maintain good health).
18. See Phillip W. Beatty et al., Personal Assistance for People with Physical Disabilities, 79 ARCH. PHYS. MED. REHAB. 674, 676 (1998); Pamela Doty et al., Consumer-Directed Models of Personal Care: Lessons from Medicaid, 74 MILBANK Q. 377, 395 (1996) (finding individuals in client- directed care are overall very satisfied with their aide); Jane Mattson-Prince, A rational approach to long-term care: comparing the independent living model with agency-based care for persons with high spinal cord injuries, SPINAL CORD 326, 330 (1997) (finding that persons not using agencies realized a lower cost of care, better health status, and greater life satisfaction than those who were using agencies); Margaret A. Nosek, Personal Assistance: Its Effect on the Long-term Health of a Rehabilitation Hospital Population, 14 ARCH. PHYS. MED. REHAB. 127, 128 (1993) (finding a relationship between the adequacy of personal assistance received by an individual with a severe physical disability and the ability of that individual to maintain good health).
19. See Batavia et al., supra note 4, at 531 (noting that policy makers have generally overlooked the independent living model because until recently long-term care policy has focused almost exclusively on the elderly population, which tends to emphasize independence less than the younger population).
20. See 42 U S.C.S. § 6009 (1994). The "bill of rights" provision of Developmentally Disabled Assistance and Bill of Rights Act states in relevant part: "Congress makes the following findings respecting the rights of persons with developmental disabilities: (1) Individuals with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities. (2) The treatment, services, and habilitation for an individual with developmental disabilities should be designed to maximize the developmental potential of the individual and should be provided in the setting that is least restrictive of the individual's personal liberty. (3) The Federal Government and the States both have an obligation to assure that public funds are not provided to any [institution] . . . that (A) does not provide treatment, services, and habilitation which is appropriate to the needs of such individuals; or (B) does not meet [certain specified] minimum standards."
21. See 29 U.S.C. § 701 (1994).
22. See 42 U.S.C. § 12132 (1995) (prohibiting discrimination against individuals with disabilities). See generally Joanne Karger, Don't Tread on the ADA: Olmstead v. L.C. ex rel. Zimring and the Future of Community Integration for Individuals with Mental Disabilities, 40 B.C. L. REV. 1221 (1999) (giving background information on the ADA, DDABRA, and the Rehabilitation Act).
23. See 119 S. Ct. 2176, 2185 (1999) (finding that unjustified institutionalization of persons with mental disabilities violated Title II of the Americans with Disabilities Act).
24. See Social Security Act, 42 U.S.C. § 1396n(c) (2000) (establishing the optional Medicaid Home and Community-Based Care waiver program).
25. See Stone, supra note 9, 61t 7.
26. See generally Batavia et al., supra note 4 (surveying three models of long term care and determining that access to such care under the independent living model is limited).
27. See NAT'L COUNCIL ON THE HANDICAPPED, TOWARD INDEPENDENCE 50-52 (1986) (recommending that Congress develop national standards and funding for the delivery of personal assistance services); Gerben DeJong, Independent Living: From Social Movement to Analytic Paradigm, 60 ARCH. PHYS. MED. REHAB. 435, 439 (1979) (noting that consumer education should allow persons with disabilities to determine what services should be offered in the marketplace). The independent living movement is sometimes also referred to as the "disability rights movement." There is some debate over whether these are actually two separate social movements, with independent living focusing on removal of environmental barriers and disability rights focusing on legal rights generally, or two names for the same movement. If they are two separate movements, there is certainly substantial overlap at this point in time. For purposes of this article, the two terms will be treated synonymously as the disability rights/independent living movement.
28. See NAT'L COUNCIL ON THE HANDICAPPED, TOWARD INDEPENDENCE 50-52 (1986) (recommending that Congress develop national standards and funding for the delivery of personal assistance services); Gerben DeJong, Independent Living: From Social Movement to Analytic Paradigm, 60 ARCH. PHYS. MED. REHAB. 435, 439 (1979) (noting that consumer education should allow persons with disabilities to determine what services should be offered in the marketplace). The independent living movement is sometimes also referred to as the "disability rights movement." There is some debate over whether these are actually two separate social movements, with independent living focusing on removal of environmental barriers and disability rights focusing on legal rights generally, or two names for the same movement. If they are two separate movements, there is certainly substantial overlap at this point in time. For purposes of this article, the two terms will be treated synonymously as the disability rights/independent living movement.
29. See Batavia et al., supra note 4, at 526-27 (noting that most people traditionally received personal assistance from family or medical personnel in the home).
30. See Arno et al., supra note 5, at 184 (exploring the market value of care provided to disabled adults by unpaid family members and friends).
31. See Nosek, supra note 15, at 130.
32. See generally Jae Kennedy, Policy and Program Issues in Providing Personal Assistance Services, J. REHAB., July-Sept. 1993, at 17 (describing the nature and context of Personal Assistance Services ("PAS") programs).
33. See Batavia et al., supra note 4, at 528.
34. See id.
35. See id. (discussing the medical model assumption that the assistance recipient is too "sick" or "incompetent" to maintain control over his or her life, and the dissatisfaction of many working-age persons with disabilities with this assumption); Nosek, supra note 15, at 130.
36. See Lori Simon-Rusinowitz et al., Determining Consumer Preferences for a Cash Option: Arkansas Survey Results, 19 HEALTH CARE FIN. REV. 73, 74 (1997).
37. See generally Gerben DeJong & T. Wenker, Attendant Care as a Prototype of Independent Living Service, 2 CARING 26 (1983).
38. See Beatty, supra note 15, at 677; A.E. Benjamin et al., Comparing consumer-directed and agency models for providing supportive services at home 35 HSR: HEALTH SERVS. RES. 351, 361-62 (2000).
39. See Beatty, supra note 15, at 677; A.E. Benjamin et al., Comparing consumer-directed and agency models for providing supportive services at home 35 HSR: HEALTH SERVS. RES. 351, 361-62 (2000).
40. See Nosek, supra note 15, at 129; Lois M. Verbrugge et al., The great efficacy of personal and equipment assistance in reducing disability, 87 AM. J. PUB. HEALTH 384, 391 (1997).
41. See Andrew I. Batavia, Health Care, Personal Assistance, and Assistive Technology: Are In-Kind Benefits Key to Independence or Dependence for People with Disabilities? in DISABILITY, WORK AND CASH BENEFITS (Jerry L. Mashaw et al., eds., 1996).
42. See JAE KENNEDY & SIMI LITVAK, CASE STUDIES OF SIX STATE PERSONAL ASSISTANCE SERVICES FUNDED BY THE MEDICAID PERSONAL CARE OPTION (World Institute on Disability, 1991).
43. See Doty, supra note 15 (discussing Medicaid-financed personal care services benefit, and its implications for consumer-directed models of personal services).
44. See generally Alison Evans Cuellar & Joshua M. Weiner, Can Social Insurance for Long-Term Care Work? The Experience of Germany, HEALTH AFF., May-June 2000, at 8; Sharon M. Keigher, Austria's New Attendance Allowance: A Consumer-Choice Model of Care for the Frail and Disabled, 27 INT'L J. HEALTH SERV. 753 (1997) (describing Austria's recently enacted social welfare provision as a prototype for a consumer-directed care model).
45. See generally Alison Evans Cuellar & Joshua M. Weiner, Can Social Insurance for Long- Term Care Work? The Experience of Germany, HEALTH AFF., May-June 2000, at 8; Sharon M. Keigher, Austria's New Attendance Allowance: A Consumer-Choice Model of Care for the Frail and Disabled, 27 INT'L J. HEALTH SERV. 753 (1997) (describing Austria's recently enacted social welfare provision as a prototype for a consumer-directed care model).
46. See Batavia et al., supra note 4, at 524; Andrew I. Batavia, Prospects for a National Personal Assistance Services Program: Enhancing Choice for People With Disabilities, AM. REHAB., Winter 1998, at 2, 4 (noting that the author and his colleagues as well as President Clinton in the Health Security Act of 1993 have supported and proposed the establishment of a national personal assistance services program or policy under the independent living model). See generally SIMI LITVAK ET AL., ATTENDING TO AMERICA: PERSONAL ASSISTANCE FOR INDEPENDENT LIVING (1987) (discussing personal assistance for independent living).
47. See Batavia et al., supra note 4, at 524; Andrew I. Batavia, Prospects for a National Personal Assistance Services Program: Enhancing Choice for People With Disabilities, AM. REHAB., Winter 1998, at 2, 4 (noting that the author and his colleagues as well as President Clinton in the Health Security Act of 1993 have supported and proposed the establishment of a national personal assistance services program or policy under the independent living model). See generally SIMI LITVAK ET AL., ATTENDING TO AMERICA: PERSONAL ASSISTANCE FOR INDEPENDENT LIVING (1987) (discussing personal assistance for independent living).
48. See Batavia et al., supra note 4, at 524; Andrew I. Batavia, Prospects for a National Personal Assistance Services Program: Enhancing Choice for People With Disabilities, AM. REHAB., Winter 1998, at 2, 4 (noting that the author and his colleagues as well as President Clinton in the Health Security Act of 1993 have supported and proposed the establishment of a national personal assistance services program or policy under the independent living model). See generally SIMI LITVAK ET AL., ATTENDING TO AMERICA: PERSONAL ASSISTANCE FOR INDEPENDENT LIVING (1987) (discussing personal assistance for independent living).
49. See, e.g., David R. Hoffman, The Role of the Federal Government in Ensuring Quality of Care in Long-Term Care Facilities, 6 ANNALS. HEALTH L. 147 (1997); George S. Ingalls et al., Elder Abuse Originating in the Institutional Setting, 74 N.D. L. REV. 313 (1998); Seymour Moskowitz, Saving Granny From the Wolf: Elder Abuse Law and Neglect- The Legal Framework, 31 CONN. L. REV. 77 (1998); Heath R. Oberloh, A Call to Legislative Action: Protecting Our Elders From Abuse, 45 S.D. L. REV. 655 (1999).
50. See, e.g., David R. Hoffman, The Role of the Federal Government in Ensuring Quality of Care in Long-Term Care Facilities, 6 ANNALS. HEALTH L. 147 (1997); George S. Ingalls et al., Elder Abuse Originating in the Institutional Setting, 74 N.D. L. REV. 313 (1998); Seymour Moskowitz, Saving Granny From the Wolf: Elder Abuse Law and Neglect- The Legal Framework, 31 CONN. L. REV. 77 (1998); Heath R. Oberloh, A Call to Legislative Action: Protecting Our Elders From Abuse, 45 S.D. L. REV. 655 (1999).
51. See, e.g., David R. Hoffman, The Role of the Federal Government in Ensuring Quality of Care in Long-Term Care Facilities, 6 ANNALS. HEALTH L. 147 (1997); George S. Ingalls et al., Elder Abuse Originating in the Institutional Setting, 74 N.D. L. REV. 313 (1998); Seymour Moskowitz, Saving Granny From the Wolf: Elder Abuse Law and Neglect- The Legal Framework, 31 CONN. L. REV. 77 (1998); Heath R. Oberloh, A Call to Legislative Action: Protecting Our Elders From Abuse, 45 S.D. L. REV. 655 (1999).
52. See, e.g., David R. Hoffman, The Role of the Federal Government in Ensuring Quality of Care in Long-Term Care Facilities, 6 ANNALS. HEALTH L. 147 (1997); George S. Ingalls et al., Elder Abuse Originating in the Institutional Setting, 74 N.D. L. REV. 313 (1998); Seymour Moskowitz, Saving Granny From the Wolf: Elder Abuse Law and Neglect- The Legal Framework, 31 CONN. L. REV. 77 (1998); Heath R. Oberloh, A Call to Legislative Action: Protecting Our Elders From Abuse, 45 S.D. L. REV. 655 (1999).
53. For those individuals who are legally incompetent or otherwise unable to assert autonomy independently, a different version of the independent living model would allow some of these individuals to receive services under this model with the assistance of a surrogate who would exercise control on behalf of the consumer. See Batavia et al., supra note 4, at 529.
54. See Arno et al., supra note 5, at 184-87 (analyzing both the national prevalence of informal caregiving and the market value of informal caregiving currently provided).
55. 4' See Stone, supra note 9, at 17.
56. The Social Security Act of 1965 appropriated funds to the states to "furnish (1) medical assistance on behalf of families with dependent children and of aged, blind, or disabled individuals, whose income and resources are insufficient to meet the costs of necessary medical services." 42 U.S.C. § 1396(1) (1995).
57. See BARRY R. FURROW ET AL., HEALTH LAW 839 (3d ed.); see also THE KAISER COMMISSION, The Kaiser Commission on Medicaid and the Uninsured, available at http://www.kff.org/docs/state/factsheets/statesheet_t17.html (last visited Mar. 13, 2001) (providing 1995 data on the percent of each state's budget spent on Medicaid).
58. See BARRY R. FURROW ET AL., HEALTH LAW 839 (3d ed.); see also THE KAISER COMMISSION, The Kaiser Commission on Medicaid and the Uninsured, available at http://www.kff.org/docs/state/factsheets/statesheet_t17.html (last visited Mar. 13, 2001) (providing 1995 data on the percent of each state's budget spent on Medicaid).
59. See Judith Feder et al., Long-Term Care In The United States: An Overview, HEALTH AFF., May-June 2000, at 40, 41 (arguing that problems with the current long-term care system leave "elderly persons at risk of financial catastrophe and inadequate care").
60. See FURROW ET AL., supra note 45, at 870 (noting that "[a] striking feature of the benefit packages provided by Medicaid is its emphasis on institutional care").
61. See id.
62. See Stone, supra note 9, at 17.
63. See Robert L. Kane et al., Variation in State Spending for Long-Term Care: Factors Associated with More Balanced Systems, 23 J. HEALTH POL. POL'Y & L. 363, 370 (1998).
64. See 42 U.S.C. §§ 1396a(a)(10)(A), 1396d(a)(24) (1993 & Supp. 2000).
65. See Stone, supra note 9, at 16.
66. See id.
67. See id. at 16, 21.
68. See generally LISA MARIE B. ALECXIH ET AL., ESTIMATED SAVINGS FROM THE USE OF HOME AND COMMUNITY-BASED ALTERNATIVES TO NURSING FACILITY CARE IN THREE STATES (American Assoc. Retired Persons, Pub. Policy Inst. 1996) (concluding that in three states where funding for home and community-based care was available, people receiving Medicaid entered nursing homes less frequently and the rate of people using Medicaid funded nursing facility care decreased); G.A. SMITH & R.M. GETTINGS, THE MEDICAID HOME AND COMMUNITY BASED WAIVER PROGRAM (National Association of State Directors of Developmental Disabilities Services, 1996);
69. See generally LISA MARIE B. ALECXIH ET AL., ESTIMATED SAVINGS FROM THE USE OF HOME AND COMMUNITY-BASED ALTERNATIVES TO NURSING FACILITY CARE IN THREE STATES (American Assoc. Retired Persons, Pub. Policy Inst. 1996) (concluding that in three states where funding for home and community-based care was available, people receiving Medicaid entered nursing homes less frequently and the rate of people using Medicaid funded nursing facility care decreased); G.A. SMITH & R.M. GETTINGS, THE MEDICAID HOME AND COMMUNITY BASED WAIVER PROGRAM (National Association of State Directors of Developmental Disabilities Services, 1996);
70. U.S. GENERAL ACCT. OFF., MEDICAID AND LONG-TERM CARE: SUCCESSFUL EFFORTS TO EXPAND HOME SERVICES WHILE LIMITING COSTS (1994) (finding states that provided waivers for home and community-based care were able to serve more people using less money).
71. See id.
72. See id.
73. See id.
74. See generally SMITH & GETTINGS, supra note 58 (comparing the waiver program to the traditional Medicaid program).
75. See Stone, supra note 9, at 17.
76. See Doty et al., supra note 15, at 377-79 (finding consumer empowerment in quality control may be more effective than the current regulatory method).
77. See id. at 379-80.
78. See id. at 379.
79. See Stone, supra note 9, at 16.
80. See id.
81. See id.
82. See id.
83. To the extent that states, such as Pennsylvania and New Jersey, use their own funds or receive Social Service Block Grants, Title II of the ADA is applicable. However, these sources of financing for long-term care are minuscule compared with Medicaid. See 55 PA. CODE § 1101.31 (1995) (defining scope of benefits for which state medical assistance recipients are eligible); N.J. ADMIN. CODE tit. 10, § 49-1.2 (2000) (explaining the financial organization of the New Jersey Medicaid program).
84. 42 U.S.C. § 6009 (1994) (amending 42 U.S.C. § 6010 (1978)) (emphasis added).
85. See 451 U.S. 1 (1981).
86. See id. at 25.
87. See id. at 2.
88. See U.S. CONST. art. I, § 8, cl. 1 (encompassing the spending power in language stating "Congress shall have the Power to . . . provide for the . . . general Welfare of the United States").
89. The Fourteenth Amendment provides that "[the] Congress shall have power to enforce, by appropriate legislation, the provisions of this article." U.S. CONST. amend. XIV, § 5.
90. Pennhurst, 451 U.S. at 22.
91. See 29 U.S.C. § 701 (1994).
92. 29 U.S.C. § 794.
93. 117 CONG. REC. 45,974 (1971 ) (statement of Hon. Charles A. Vanik).
94. 29 U.S.C. § 794.
95. See Brief for United States at 27, Halderman v. Pennhurst State Sch. & Hosp., 673 F.2d 647 (3d Cir. 1981) (Nos. 78-1490, 78-1564, 78-1602).
96. See Pennhurst, 451 U.S. at 11.
97. See Halderman v. Pennhurst State Sch. & Hosp., 673 F.2d 647, 660 (3d Cir. 1981) (finding that the Act does not foreclose all institutionalization).
98. Americans with Disabilities Act (ADA) of 1990, 42 U.S.C. § 12101(b)(1) (1995).
99. See Andrew I. Batavia & Kay Schriner, The ADA as Engine of Social Change: The Strengths and Limitations of a Civil Rights Approach to Meeting the Needs of People with Disabilities, POL'Y STUDIES J. (in press) (on file with author).
100. 42 U.S.C. § 12101(a)(8).
101. 42 U.S.C. § 12101(a)(2). Congress further found that "individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, . . . failure to make modifications to existing facilities and practices, . . . [and] segregation . . . ." 42 U.S.C. § 12101 (a)(5). The legislative history reinforces this concern. The House Report stated that "the ADA is a comprehensive piece of civil rights legislation which promises a new future: a future of inclusion and integration, and the end of exclusion and segregation." H.R. REP. No. 101-485 pt. 3, at 26 (1990).
102. Statement on Signing the American with Disabilities Act of 1990, PUB. PAPERS: GEORGE BUSH 1070, 1071 (July 26, 1990).
103. See 42 U.S.C. § 12101(a)(3) (including institutionalization as an area where individuals with disabilities have faced discrimination).
104. 42 U.S.C. §§ 12101(a)(2), (3), (5).
105. See supra Part IV.
106. See 42 U.S.C. § 12101(a)(5) (discussing types of discrimination encountered by people with disabilities).
107. See 42 U.S.C. §§ 1396(a)(10)(A), 1396(d)(a)(24).
108. 42 U.S.C. § 12102(2).
109. 524 U.S. 624 (1998).
110. See id. at 631.
111. See id.; see also supra Part I.
112. See 42 U.S.C. § 12102(2)(C).
113. 119 S. Ct. 2139 (1999).
114. See id. at 2149-50.
115. See Title I, 42 U.S.C. §§ 12111-12117. Title I of the ADA prohibits discrimination in employment on the basis of disability, including discrimination in "job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment." 42 U.S.C. § 12112. Its effect on access to long-term care services is limited mostly to two general issues. Although there is no general requirement that employers provide personal assistance services for employees, there is a requirement to provide "reasonable accommodations," and a personal assistance obligation may arise under certain specific circumstances. "Providing personal assistants, such as a page turner for an employee with no hands or a travel attendant to act as a sighted guide to assist a blind employee on occasional business trips, may also be a reasonable accommodation." C.F.R. pt. 1630, app. (2001).
116. See Title II, 42 U.S.C. §§ 12131-12165.
117. See Title III, 42 U.S.C. §§ 12181-12189. Title III of the ADA prohibits private entities, including places of public accommodation, from engaging in conduct that constitutes discrimination against people with disabilities. See 42 U.S.C. §§ 12181-12189. Nursing homes and home health agencies are clearly among the types of public accommodations that are covered by Title III. Perhaps the clearest application of Title III to long-term care involves discrimination with respect to providing physical access. For example, nursing homes that are not wheelchair accessible are clearly vulnerable to an ADA challenge. Moreover, such organizations that have policies that do not accommodate the needs of people with certain disabilities, such as the communication needs of people who are deaf, may be in violation of Title III. Although this section of the ADA clearly establishes certain rights and obligations that affect long-term care, it does not require providers to alter the fundamental nature of their operations or the model of care under which they operate.
118. See Title V, 42 U.S.C. § 12201. Despite its broad scope, the ADA has only a limited impact on the ability of health plans to discriminate against people with disabilities because it has a specific "safe harbor" provision ensuring that many traditional insurance practices for underwriting, classifying, and administering risks remain legal (unless they are used specifically as a subterfuge to avoid the anti-discrimination requirements of the ADA). See id. Such insurance practices tend to have an inherently adverse effect on high-cost users of health care, including many people with disabilities. In issuing regulations for implementing the ADA, the U.S. Department of Justice ("DOJ") attempted to resolve the apparent conflict between a statute that strongly prohibits discrimination against people with disabilities generally, and a safe harbor provision in the same statute that allows people with disabilities to be treated adversely in insurance policies. In interpreting the term "subterfuge," the DOJ regulations conclude that, under the ADA, insurers and plans may no longer treat people differently on the basis of disability unless their differential treatment is justified by "sound actuarial principles or reasonably anticipated experience." The Equal Employment Opportunity Commission ("EEOC") has issued consistent guidelines. In the context of long-term care insurance, this may permit insurers to limit coverage for long-term care required as a result of a preexisting disability. However, it does not necessarily justify denial of coverage altogether for such individuals (e.g., additional long-term care necessary for a secondary disability acquired subsequently).
119. See 42 U.S.C. §§ 12131(1)(A), (B).
120. 42 U.S.C. § 12132.
121. See 42 U.S.C. § 12131(2). A "qualified individual with a disability [is] an individual with a disability who, with or without reasonable modifications to rules, policies, or practices, the removal of architectural, communication, or transportation barriers, or the provision of auxiliary aids and services, meets the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by a public entity." See id.
122. See 42 U.S.C. §§ 12101(a)(2), (3), (5).
123. See supra Part IV.
124. See 42 U.S.C. § 12134(b).
125. See Brief for United States at 45, Halderman v. Pennhurst State Sch. & Hosp., 673 F.2d 647 (3d Cir. 1978) (Nos. 78-1490, 78-1564, 78-1602) ("Institutionalization resulting in separation of mentally retarded persons for no permissible reason . . . [i]s 'discrimination,' and a violation of Section 504 [of the Rehabilitation Act] if it is supported by federal funds."); see also Brief for United States as Amicus Curiae at 7, Helen L. v. DiDario, No. 94-1243, 1995 U.S. App. LEXIS 3896 (3rd Cir. 1994).
126. 28 C.F.R. pt. 35, app. A, subpart A, § 35.102 (2000).
127. See 28 C.F.R. § 41.51(d) (2000) (noting that "[r]ecipients shall administer programs and activities in the most integrated setting appropriate to the needs of qualified handicapped persons").
128. 28 C.F.R. § 35.130(d) (2000).
129. 28 C.F.R. pt. 35, app. A, subpart B, § 35.130 (2000).
130. See id.
131. See Brief for the United States as Amicus Curiae at 8, 15-16, Helen L. v. DiDario, No. 94-1243, 1995 U.S. App. LEXIS 2233 (3rd Cir. 1994) (noting that unnecessary segregation of persons with disabilities constitutes a form of discrimination prohibited by the ADA and the integration regulation).
132. 28 C.F.R. § 35.130(b)(7)(1998).
133. See id.
134. l19 See 28 C.F.R. § 35.130(b)(7). "A public entity shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity." See id.
135. See generally Lucille D. Wood, Costs and the Right to Community-Based Treatment, 16 YALE L. & POL'Y REV. 501 (1998) (discussing how the costs of community-based treatment have entered into the courts' opinions).
136. See id. at 502-08 (discussing the link between costs and community-based treatment).
137. 46 F.3d 325, 333 (3d Cir. 1995).
138. See Charles Q. v. O. Houstoun, No. CIV. A. 1: CV-95-280, 1996 WL 447549, at *5 (M.D. Pa. Apr. 22, 1996).
139. See Williams v. Wasserman, 937 F. Supp. 524, 530-31 (D. Md. 1996).
140. See Williams v. Secretary of the Exec. Off. of Human Services, 609 N.E.2d 447, 452 (Mass. 1993).
141. See Olmstead v. L.C. ex rel. Zimring, 119 S. Ct. 2176, 2818 (1999) (stating that the resources available to a state can be taken into account).
142. See id.
143. See id. at 2190.
144. Id. at 2181 (emphasis added).
145. See id. at 2 183.
146. See id.
147. See id.
148. See id.
149. See id. at 2181; see also Wilder v. Virginia Hosp. Ass'n, 496 U.S. 498, 508 (1990) (finding that section 1983 imposes liability for "'the deprivation of any rights, privileges, or immunities secured by the Constitution and laws' of the United States").
150. See Olmstead, 119 S. Ct. at 2181. The courts did not reach the claims that Georgia health care officials violated the women's rights under the Due Process Clause of the Fourteenth Amendment by failing to afford them minimally adequate care and freedom from undue restraint. See id.
151. Id. at 2184.
152. See Zimring v. Olmstead, 138 F.3d 893, 905 (11thCir. 1998).
153. See id. at 905.
154. '39 See id. at 904.
155. Id. at 902.
156. Id. at 905.
157. Id. at 905.
158. See Olmstead, 119 S. Ct. at 2185.
159. See id. at 2184.
160. Id. at 2184 n.6.
161. See id. at 2186.
162. See id. at 2190.
163. See id. at 2198.
164. See id. at 2186.
165. See id.
166. Id.
167. Id. at 2187.
168. In doing so, the Court relied upon its decision in Bragdon v. Abbott, 524 U.S. 624 (1998) in which it stated that "it is enough to observe that the well-reasoned views of the agencies implementing a statute 'constitute a body of experience and informed judgment to which courts and litigants may properly resort for guidance,'" quoting Skidmore v. Swift & Co., 323 U.S. 134, 140 (1944).
169. In doing so, the Court relied upon its decision in Bragdon v. Abbott, 524 U.S. 624 (1998) in which it stated that "it is enough to observe that the well-reasoned views of the agencies implementing a statute 'constitute a body of experience and informed judgment to which courts and litigants may properly resort for guidance,'" quoting Skidmore v. Swift & Co., 323 U.S. 134, 140 (1944).
170. See Olmstead, 119 S. Ct. at 2185.
171. Id. at 2187.
172. Id.
173. Id. at 2190 (emphasis added).
174. See Zimring v. Olmstead, 138 F.3d 893, 902 (11th Cir. 1998).
175. See Olmstead, 119 S. Ct. at 2185.
176. Olmstead, 138 F.3d at 905.
177. Olmstead, 119 S. Ct. at 2185, 2189.
178. See id. at 2185 (discussing the states' need to maintain a range of facilities to care for and treat diverse mental health disabilities).
179. See id. at 2188 (stating that states may rely on the reasonable assessments of its own specialists in determining whether an individual "meets the essential eligibility requirements" for living in a community-based program).
180. Id. at 2189.
181. No. 99-1240, 2001 U.S. LEXIS 1700 (Feb. 21, 2001).
182. The Eleventh Amendment states that "The Judicial power of the United States shall not be construed to extend to any suit in law or equity, commenced or prosecuted against one of the United States by Citizens of another State, or by Citizens or Subjects of any Foreign State." U.S. CONST. amend. XI. The Court's jurisprudence has extended the Amendment's applicability to suits by citizens against their own States.
183. See Garrett, 2001 U.S. LEXIS 1700, at *13-14.
184. See id. at *32.
185. See id. at *22.
186. See Olmstead, 119 S. Ct. at 2184.
187. See Brief of Morton Horwitz, Martha Field, Martha Minow and Over 100 Other Historians and Scholars, Amici Curiae In Support of Respondents, Trustees of the University of Alabama v. Garrett, no. 99-1240, 2001 U.S. LEXIS 1700 (Feb. 21, 2001).
188. See Garrett, 2001 U.S. LEXIS 1700, at *7-8. Chief Justice Rehnquist's decision begins by stating "We decide here whether employees of the State of Alabama may recover monetary damages by reason of the State's failure to comply with the provisions of Title I of the Americans with Disabilities Act of 1990. . . . We hold that such suits are barred by the Eleventh Amendment. See id.
189. Id. at 2181, 2185, 2190.
190. Id. at 2185.
191. See, e.g., Sanon v. Wing, No. 403296/98, 2000 N.Y. Misc. LEXIS 139, at *14 (N.Y. Sup. Ct. Feb. 25, 2000), citing Olmstead and mandating integration of physically disabled individuals).
192. See 119 S. Ct. at 2185.
193. See id. ("[R]espondents, L.C. and E.W., are mentally retarded women; L.C. has also been diagnosed with schizophrenia, and E.W. with a personality disorder"). 178 See id. at 2176.
194. See id. at 2181 ("Such action is in order when the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities").
195. See supra Part XI.B.
196. 94 F. Supp. 2d 1217 (D.N.M. 2000).
197. See id. at 1222.
198. See id. at 1222, 1239.
199. See id. at 1222.
200. See id. at 1239.
201. See id. at 1240.
202. An individual acting in a non-supervisory role can only be held liable under section 1983 if there is a causal connection between the individual's conduct and the deprivation of a federal right. This requirement can be satisfied by a showing that "the defendant set in motion a series of events that the defendant knew or should reasonably have known would cause others to deprive the plaintiff of her constitutional rights." Conner v. Reinhard, 847 F.2d 384, 397 (7th Cir. 1988) (citations omitted).
203. 94 F. Supp. 2d at 1240.
204. See, e.g., Pennhurst State Sch. & Hosp., 101 S. Ct. 1531. The Court indicated: The case for inferring congressional intent to create, pursuant to Congress' enacting power under § 5 of the Fourteenth Amendment, enforceable rights and obligations is at its weakest where, as here, the rights asserted imposed affirmative obligations on the States to fund certain services, since it may be assumed that Congress will not implicitly attempt to impose massive financial obligations on the States. Unlike legislation enacted under § 5, however, legislation enacted pursuant to the spending power is much in the nature of a contract; in return for federal funds, the States agree to comply with federally imposed conditions. The legitimacy of Congress' power to legislate under the spending power thus rests on whether the State voluntarily and knowingly accepts the terms of the "contract," but if Congress intends to impose a condition on the grant of federal moneys, it must do so unambiguously. Id. at 1538-40.
205. See Stone, supra note 9, at 5.
206. 197 F.3d 611, 615 (2d Cir. 1999).
207. See 18 N.Y.C.R.R. § 505.14(a). Such services are defined as "some or total assistance with personal hygiene, dressing and feeding; nutritional and environmental support functions; and health-related tasks." Id. Under the program, a Medicaid recipient is entitled to receive personal care services if they are medically necessary and "essential to the maintenance of the patient's health and safety in his or her own home." Id.
208. See Rodriguez by Rodriguez, 197 F.3d at 613.
209. Olmstead, 119 S. Ct. at 2176, 2188 n.14 (internal quotation marks omitted).
210. See id. at 2187.
211. Such legislation has been introduced, but has not been enacted at this time. For example, House Bill 2020 ("H.R. 2020"), known as the "Medicaid Community Attendant Services Act of 1997" ("MiCASA") was introduced on June 24, 1997, as an amendment to Title XIX of the Social Security Act. See Medicaid Community Attendant Services Act of 1997, H.R. 2020, 105th Cong. (1997). Subsequently, the "Medicaid Community Attendant Services and Supports Act of 1999" ("MiCASSA") was introduced. See Medicaid Community Attendant Services and Supports Act of 1999, S. 1935, 106th Cong. (1999).