From Almshouses to Nursing Homes and Community Care: Lessons from Medicaid's History
| Jurisdiction | United States,Federal |
| Publication year | 2010 |
| Citation | Vol. 26 No. 3 |
Georgia State University Law Review
t •jc ■ Article 13
Issue 3 Spring 2010
3-21-2012
From Almshouses to Nursing Homes and Community Care: Lessons from Medicaid's History
Sidney D. Watson
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Recommended Citation
Watson, Sidney D. (2009) "From Almshouses to Nursing Homes and Community Care: Lessons from Medicaid's History," Georgia State University Law Review: Vol. 26: Iss. 3, Article 13. Available at: http://digitalarchive.gsu.edu/gsulr/vol26/iss3/13
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FROM ALMSHOUSES TO NURSING HOMES AND COMMUNITY CARE: LESSONS FROM MEDICAID'S HISTORY
Sidney D. Watson*
Introduction
Home and community-based services are support and long-term care services that offer an alternative to institutional care for those who need assistance with life's daily activities. For Lois Curtis of Atlanta, one of the plaintiffs in the Olmstead v. L.C.1 who spent most of her life in mental institutions, it means a live-in companion who helps her with the day-to-day activities of living in her own home, like managing finances, cooking meals, and keeping track of medications.2 For Larry McAfee, another Georgian who was quadriplegic, community-based services involved round-the-clock personal care, wheelchair accessible bathrooms and kitchens, a specialized computer, and a specially adapted van.3
Home and community-based services allow children, adults and the elderly to be in the community rather than cut off from the community as typically happens in nursing homes and other institutions. After moving into her own home, Lois Curtis reconnected with her family, made new friends and became a successful folk artist with well received gallery showings in Atlanta and other cities.4 Larry McAfee—who once asked the Georgia courts to allow him to end his life when he was forced to live in hospitals
* Professor of Law, Saint Louis University Center for Health Law Studies. My thanks to Yolonda Campbell, Saint Louis University, JD/MPH Class of 2011, for extraordinary research assistance. A special note of thanks to Lynn Hartke, Saint Louis University School of Law Research Librarian, for help locating the legislative history of the Social Security Act and Medicaid.
1. Olmstead v. L.C, 527 U.S. 581 (1999).
2. Id.
3. Joseph P. Shapiro, No Pity: people with Disabilities Forging a New Civil Rights movement 288 (1994). Mr. McAfee died in 1995. See Obituaries, Larry McAfee, 39: Sought Right to Die, N.Y. Times, Oct. 5, 1995, available at http://www.nytimes.com/1995/10/05/obituaries/larry-mcafee-39-sought-right-to-die.html?pagewanted= 1.
4. See Olmstead, 527 U.S. 581 (1999).
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and nursing homes—worked from home using his specialized computer, visited friends and family in his van, and described himself as living a "good" life that gave him "hope."5
Medicaid is the primary payer for community-based care and support.6 While most home care is provided unpaid by friends and families, some people need more or different support than friends and families can provide while others do not have family or friends upon whom to rely.7 Typical private insurance does not cover long-term
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care—either in the community or in an institution. Medicare only provides limited post-acute long-term care through its home health and skilled nursing home benefit.9 For many people, like Lois Curtis and Larry McAfee, Medicaid is the only source of funding for community-based services.
But Medicaid has a well-known institutional bias that steers people with long-term care needs into nursing homes.10 State Medicaid programs must cover nursing home care while most home and community-based services are optional.11 Qualifying for Medicaid home and community-based services can often be, at best, a battle
5. Shapiro, supra note 3, at 288.
6. Filling in the Long-Term Care Gaps: Testimony of Diane Rowland, Sc.D., Executive Vice President, Henry J. Kaiser Family Foundation, Hearing on "Role of Private Insurance in Long-Term Care" Before the S. Spec. Comm. on Aging, 111th Cong. (2009), available at http://aging.senate.gov/events/hr210dr.pdf [hereinafter Rowland Testimony]; Kaiser Comm'n on Medicaid Facts, Kaiser Family Found., medicaid and Long-Term Care Services and Supports (2009), available at http://www.kff.org/medicaid/upload/2186_06.pdf [hereinafter KFF Fact Sheet]. Medicaid accounts for 40% of all long-term care expenditures compared with 23% for Medicare and 95% for private insurance.
7. Rowland Testimony, supra note 6, at 2 (stating that nearly 80% of those with long-term needs who live in the community have care that is provided by friends and family, and only 8% rely exclusively on paid assistance).
8. Id. However, there is some move to try to create a separate private long-term care insurance industry.
9. Id. at 4.
10. Kaiser Comm'n on Medicaid & the Uninsured, Kaiser Family Found., Advancing Access to Medicaid Home and Community-Based Services: Key issues Based on a Working Group discussion with Medicaid Experts (2009), available at http://www.kff.org/medicaid/ uploao77970.pdf.
11. 42 U.S.C. § 1396d(a)(xiiiXl) (2006); see also Kaiser Comm'n on Medicaid & the Uninsured, Kaiser Family Found., Medicaid Home and Community-Based Service Programs: Data Update, at 1 (2009), available at http://www.kff.og/medicaid/upload/7720-03.pdf [hereinafter KFF Data Update].
2010] LESSONS FROM MEDICAID'S HISTORY 939
and, at worst, a long wait list for services.12 Many, like Larry McAfee, end up with Medicaid but shunted into nursing homes rather
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than home and community-based services.
This article examines the social and legislative history of Medicaid to understand the forces that created and perpetuate Medicaid's nursing home bias. Part I offers a legislative history of social welfare in America showing how the Social Security Act, with its emphasis on cash pensions and public assistance, was intended to move care from institutions—the old almshouses for the poor—into the community, but instead spurred a new private nursing home industry.14 Part II describes the demand for long-term care that led Congress to create cooperative federal/state vendor payment programs to pay for medical and remedial care that both encouraged the growth of nursing homes and lead directly to creation of Medicaid.15
Part III explains why Medicaid—and not Medicare—funds long-term nursing home care. It is no accident that Medicaid is the largest funder of long-term care in America: Congress intended Medicaid to be the legislative vehicle for funding long-term care—both in the community and in nursing homes. Part III also explains why nursing homes are a mandatory Medicaid service and how Medicaid requirements pushed nursing homes into becoming large, impersonal institutions rather than evolving into more home-like settings conducive to "living in community."16 It also explains how Medicaid pushed people with disabilities into new forms of nursing homes by authorizing payment for intermediate care facilities (ICF/MRs) and
12. See Gary a. Smith, Human Services Research Inst., Status Report: Litigation Concerning Home and Community Services for People with Disabilities (2007), available at http://www.hsri.org/docs/litigation052307.pdf (listing litigation on behalf of individuals seeking access to Medicaid funded home and community-based services).
13. Larry McAfee and Lois Curtis only gained access to Medicaid home and community-based services after going to court. Lois Curtis finally obtained community services as a result of the Supreme Court's decision in Olmstead. Larry McAfee received community-based services after publicity over this right to die lawsuit prompted Georgia law makers to fund a Medicaid community-based program. Rebecca McCarthy, McAfee Moving to New Home, Atlanta J.-Const., Aug. 22, 1990, available at 1990 WLNR 2073248.
14. See discussion infra Part I.
15. See discussion infra Part II.
16. See discussion infra Part III.
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intermediate care facilities for the mentally retarded (ICF/MRs).17 In sum, Part III describes how Medicaid's institutional bias developed over time.
Part IV turns to an examination of Medicaid's statutory authority to cover home and community-based long-term care. Medicaid's statutory structure has always authorized states to cover an extraordinary range of both medical and social services to help people live in the community.18 Over the years, Congress has continually expanded the community-based services that states can cover through Medicaid. Medicaid's nursing home bias is not inherent in its statutory structure. Instead, it results from a variety of historical events.
I. From Poor Laws to Social Security: From Almshouses to
Nursing Homes
In colonial and 19th Century America, most care was home care. Medical and nursing care, even surgery, was done at home.19 A home atmosphere was viewed as the ideal place to be cared for, and in an era before the development of germ theory and modern theories of scientific medicine the home was far safer than institutional care.
Institutions were for the "deserving" poor: public almshouses— also called poorhouses—housed those with disabilities, mental illness, contagious diseases, incurable illnesses and alcoholism alongside children and widows.21 Rooted in the Elizabethan Poor Laws, this "indoor relief was the only form of public welfare. Poverty, disability, and illness were viewed as moral failings and almshouses were meant to reform through order and structure.
Almshouses were also intended to protect society from the corrupting influence of the...
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