Last June 22 marked the 25th anniversary of Olmstead v. L. C., when the Supreme Court ruled that it was illegal under the Americans with Disabilities Act to keep people in disability-care institutions when they were better served elsewhere. The ruling stated, “[I]nstitutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life. … confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
(Note: “Community” in the above quote comprises all non-institutional forms of residential care: certified group homes, supported independent-living arrangements, and residences shared with family caretakers. For most references in this article, we have opted for the alternative term “home care.”)
Being able to “handle and benefit from community settings” means that a person is:
- Ready and willing to live outside an institution;
- Approved by one or more treatment professionals for non-institutional care; and
- Able to function effectively with reasonable accommodations.
Background
Olmstead v. L. C. began when Lois Curtis (the “L. C.” of the case) and Elaine Wilson sued Georgia’s Department of Human Resources (commissioned by Tommy Olmstead). Curtis and Wilson both had mental illness as well as intellectual/developmental disabilities; both had voluntarily entered the state’s Georgia Regional Hospital for psychiatric treatment; and both had been cleared for release, only to be put on a long waiting list for state-funded “community placement.” Several years passed, and both remained on the waiting list—and in the psychiatric hospital.
Finally, they decided enough was enough and took their case to court. On June 22, 1999, the Supreme Court officially ruled in their favor, finding that the State of Georgia had violated ADA rights, and that all state governments must provide funding for community-based as well as institutional care.
Implications
Financially, that turned out to be in the state governments’ interest: both anecdotal and research evidence indicate that home care is more cost-effective than institutional care. Three likely reasons:
- Home care transfers some everyday-living costs to family caretakers, or to the patients themselves.
- Home care means more freedom and personalized attention, which means less stress and depression—and fewer health conditions that feed on stress and depression.
- Non-institutional patients have more opportunities for volunteer work, employment, and other means of contributing back to their communities.
(Plug: In Texas, one example of state-funded, home-based disability care is consumer directed services (CDS). Under this arrangement, patients receiving Medicaid Waivers and similar financial aid can hire their own care providers, rather than trusting that job to an institution or separate hiring agency. CDS users—or their parents/guardians—can even hire friends and relatives as paid caretakers.)
Challenges
Despite the advantages of state-funded home care, it doesn’t always get the publicity and support it deserves. There are several reasons:
- Reluctance to change “the way it’s done.” Even some doctors still assume, without evidence, that home care is too expensive and/or difficult for any family to manage. (Helpful hint: if you encounter a doctor who focuses exclusively on worst-case scenarios, run, don’t walk, to another doctor for a second opinion. Preferably a doctor experienced with situations like your family’s.)
- Lack of public education. Many patients are still unaware of their Olmstead rights and related options.
- Shortage of reliable home-care providers, partly because most providers earn higher salaries if they opt to work in residential hospitals. (In Texas, though, a CDS-hired worker can at least earn more than someone paid by an agency—and it’s easier to find CDS caretakers who work for love as well as money.)
Whether or not you or a family member need home care, you can help advocate for it:
- Spread the word that state-funded home care is a right protected by law—and that patients can file Olmstead-violation complaints with the U.S. Department of Justice.
- Speak out against the stigma that disregards the benefits of home care—and the valuable contributions made by home healthcare workers and disabled citizens.
- Encourage disabled relatives and acquaintances to develop their skills, and to contribute back to their communities.
(For a 3-minute overview of Olmstead and its practical applications, see The Olmstead Decision Explained from Disability Rights Washington. For a 2-hour program featuring personal input from government workers and disability-service consumers, see “Celebrating the 25th Anniversary of Olmstead v. L. C.,” originally presented June 20, 2024 by the Departments of Justice and Health and Human Services.)