OLMSTEAD DECISION BRINGS MAJOR SHIFT IN DISABILITY CARE

A landmark U.S. Supreme Court decision in 1999 is helping advance strategies and programs that allow people with disabilities to receive appropriate care at home or in community-based programs instead of in institutions. Thus far, however, advocates in aging have not fully recognized the significant ways in which the court action affects public programs, most notably Medicaid, said Sara Rosenbaum, an expert on health law and policy at George Washington University, Washington, D.C.

Rosenbaum spoke in San Francisco in October 2001 at a Family Caregiver Alliance conference on emerging caregiving issues facing state legislators at a time when states are under pressure to deal with long-term care conundrums, such as balancing the public cost of long-term care with the overwhelming demands on family members caring for elderly kin. She stated that the court's ruling represents "an enormous shift in how society views persons with disabilities."

THE ADA
The Georgia Department of Human Resources, headed by commissioner Thomas "Tommy" Olmstead, was sued by the Atlanta Legal Aid Society in 1995 on behalf of two women with mental disabilities. Identified in the case as L.C. and E.W., they had been held for years in a state institution and were unable to return to their communities even after their conditions stabilized and their doctors concluded that their needs could be met in the community. In Olmstead v. L.C., the U.S. Supreme Court determined in a 6-3 decision that the women should not continue to be institutionalized simply because the state said it had no slots available for them in community programs. Rosenbaum explained that the ruling established unjustifiable institutionalization as a form of discrimination.

The high court held that although Georgia had requested and been approved for a Medicaid waiver allowing it to use federal matching funds for 2,000 home and community-care slots, the state had committed enough of its own resources to pay only for 700 people. In failing to fulfill its own plan, said the court, it has violated the 1990 Americans With Disabilities Act (ADA).

The court, Rosenbaum said, "held that unjustifiable institutionalization of persons with disabilities is a form of discrimination" because it compels them to receive care within institutional walls, while functionally capable people without disabilities receive care in their communities. In addition, she said that ADA protections are not limited to people within institutions; those with disabilities in the community are covered, as well. Also, a person's having a family caregiver while living at home does not eliminate a state's responsibility to provide community services.

APPROPRIATE SETTINGS
She explained that under the high court's ruling, "An individual who is able to benefit in a community placement--or who wants to live in the most integrated setting possible appropriate to his or her needs--cannot be forced as a condition of receiving public benefits from government to live in an institution." She added that the law protects those of any age who meet its functional disability test and who are considered qualified for benefits under a given healthcare program.

People with a disability qualify for ADA protection, Rosenbaum said, if they are coping with "a physical or mental impairment that substantially limits one or more major life activities." She said that these activities include such functions as "caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working."

The Olmstead decision was remarkable not only for its major findings, Rosenbaum stressed, but also because the court "basically said, 'We're going to be watching.'" That is, the court promised to weigh whether states are adequately respecting ADA protections of participants in public programs. At the same time the court recognized that the ADA was not boundless; it could not give a person with a disability a competitive advantage not available to those without a disability.

Rosenbaum elaborated that the Supreme Court seemed to envision a process by which public programs and disability advocates could find their way to mutual accommodation, even if at times lawsuits might be necessary to resolve knotty issues. On the one hand, she said, a state with very modest programs of home or community-based care could be seen, in the language of the ruling, to be "making best efforts" to fund and implement services and could be seen as responding adequately in some cases.
On the other hand, a state with a more ambitious program that remained poorly realized, such as one with a large number of unfilled community-care slots granted under a federal-state Medicaid waiver, would be vulnerable to charges that it was not moving at a reasonable pace.

TWO BASIC REFORMS
Rosenbaum described the Olmstead decision as requiring states to plan and undertake two basic reforms: "the broad and complex task of restructuring existing programs and services in order to promote community integration" and "the establishment of an individualized assessment process to design community placements."

Assessment procedures for patients and long-term care residents can become sticking points, Rosenbaum warned. Important aspects remain to be addressed by adjudications to come in determining whether an individual can reside in a community. Among the key questions: Are only people currently in institutions eligible to seek an assessment of their functional ability to reside in a community setting? How long can individuals be made to wait for assessments, and who can conduct them? In assessing a person, can the state weigh the relative costs of community residence and institutional care?

FINDINGS
The analysis found that complainants are geographically diverse, representing all regions of the United States. The leading source of complaints were individuals (43%), advocacy groups (33%) and family members (16%). Only 5% of complaints involved older adults, she said. One quarter involved adults ages 22­50; 14%, children and infants; and 9%, those ages 51­64. Rosenbaum attributed the relatively sparse use of the Olmstead decision in cases affecting elders to the fact that the lobbying effort to pass the ADA in the late 1980s was predominantly the work of disability advocacy groups. The potential of ADA to serve chronically ill elders was not, at first, widely recognized.

According to the research by Rosenbaum and her colleagues, two out of three complaints involved institutionalized people, of whom more than two-thirds were in nursing or psychiatric facilities. Physical disability was most dominant among adult complainants, and mental illness was the main disability among those under 21. Overall, 18% of those filing claims under Olmstead reported having a combination of disabilities.

Sixty percent of the claimants--by far the largest percentage--requested housing and in-home care service and support. Also needed were transportation, education, vocational training and many other kinds of services.

AGING
Rosenbaum cited one New York case, Sanon v. Wing, that typifies the cases brought under the Olmstead decision to date, with most relating to limitations on hours of service. A 90-year-old woman's home services under a New York program were limited to an arbitrary number of hours with none allowed at night. A court held that the state had to remove the flat limits, since the alternative was to send the woman to a nursing home. "This requirement in itself was a violation of the Americans With Disability Act," Rosenbaum said. This decision, she commented, "shone a bright light on the practice that states use in building tipping points into their homecare system, where if you're below x number of hours a week, you can get [services] in the community, but if you're over x hours, you've violated cost-effectiveness and have to go into a home.

PROGRESS IN MISSOURI
Also during the Family Caregiver Alliance session, Missouri State Representative Lana Ladd Baker said her focus on issues in aging sprang in part from her father's five-and-a-half years in a nursing home because of Alzheimer's disease. Missouri, she said, was prompt to develop a state plan to respond to the Olmstead ruling. One of her initiatives was the Share Care program, which links family care to a state tax credit.

Baker noted, "We have language in our budget that says that the money from Medicaid can help persons who can self-direct and hire and fire their own workers." She added that barriers that prevent people nationwide from getting appropriate care relate to the fact that every state varies in such matters as eligibility, income levels and definitions of disability. "There are some real differences in equity," she stated. In some cases, such as a leaking roof or a malfunctioning furnace, the decision may be made to institutionalize someone for nonmedical reasons.

"We haven't figured out what is an ideal system and what it should look like," Baker said. "A really comprehensive system simply does not exist." The Olmstead decision, however, has given states great incentive to inspect their long-term care programs and to find new directions that will help remove them from a "quagmire of public policy," she continued.

Baker urged advocates in aging to join with those speaking for people with disabilities to move forward, but cautioned that overcoming special interests vested in the status quo will require long-term efforts by dedicated citizens and legislators. The ultimate objective, she said, is for everyone to live--or die--in a place that they can call home.

William E. Oriol lives and writes in Sedona, Ariz.

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