In 1999, the U.S. Supreme Court delivered a landmark decision in Olmstead v. L.C. and E.W., a case that has profoundly influenced disability rights in America. This ruling centered on the interpretation of the Americans with Disabilities Act (ADA) and addressed whether states are required to provide community-based services for persons with mental disabilities. I would argue that it is one of the most consequential disability rights heard before the Supreme Court since the ADA was signed into law. It seems fitting to discuss in the month that is the 30th Anniversary of the passage of the ADA.

Olmstead v. L.C. and E.W. involved two women, Lois Curtis (L.C.) and Elaine Wilson (E.W.), both of whom had diagnoses of mental disabilities and were voluntarily admitted to the psychiatric unit of the State-run Georgia Regional Hospital. Despite medical professionals deeming them ready for community-based treatment, they remained confined in the institution for several years. This situation highlighted a significant issue: the unnecessary segregation of people with disabilities in institutional settings, despite their capability to live in a community setting with appropriate support.

The legal battle began when L.C. and E.W., represented by the Atlanta Legal Aid Society, sued the state of Georgia. They argued that the state's failure to place them in a community setting, despite their preparedness for such placement, violated the Americans with Disabilities Act of 1990 (ADA). The ADA mandates that persons with disabilities receive services in the most integrated setting appropriate to their needs, fostering inclusion and avoiding isolation. Many have referred to this court case as the Brown v. Board of Education case for disabled people, arguing what the Supreme Court decided in Brown, that separate is indeed, not equal.

The Ruling

The Supreme Court, in a 6-3 decision, held that under the ADA, states are required to provide community-based services for persons with disabilities when:

1. Such services are appropriate;

2. The affected persons do not oppose community-based treatment; and

3. Community-based services can be reasonably accommodated, taking into account the state's resources and the needs of others with disabilities.

Justice Ruth Bader Ginsburg, writing for the majority, emphasized that the unjustified segregation of people with disabilities constitutes discrimination and that the ADA acknowledges that isolation in institutional settings perpetuates assumptions that persons with disabilities are unfit or incapable of participating in community life. This decision underscored the right of individuals with disabilities to live within their community and to have access to services that facilitate their participation in society. It also set a precedent for evaluating the adequacy of state and local services provided to the disabled community as a whole, not just applying to people with mental disabilities.

Olmstead’s Impact and Ongoing Challenges

Olmstead v. L.C. and E.W. has spurred significant changes across the United States. States have been motivated to develop more comprehensive community-based treatment options for people with disabilities, moving away from a reliance on institutional care. The ruling also bolstered the civil rights movement for disabled individuals, affirming their right to community integration. The change did not come quickly though. This Supreme Court decision sat idle for almost a decade, until, in 1999, President Obama passed the Olmstead Act. This act was a critical step towards promoting community-based services for individuals with disabilities, ensuring their right to live independently and be fully included in society. President Obama's support of this legislation marked a major victory for the disability community, highlighting the importance of advocating for equality and accessibility for all individuals.

Two key outcomes of the Olmstead Act that helped implement the law were the creation of The Agency on Community Living (ACL) and the development of The Money Follows the Person Program. The ACL was created in 2012 as part of the Health and Human Services Department of the federal government. It has proven to be a vital organization dedicated to supporting individuals with disabilities to live fulfilling and independent lives within their communities. Through various programs and services, the agency aims to promote inclusion, accessibility, and empowerment for people with diverse abilities.

The Money Follows the Person (MFP) Program, established in 2005, aims to shift long-term care funding from institutions to home and community-based services for individuals with disabilities and older adults. This federal initiative assists individuals who are eligible for Medicaid to transition from nursing homes back to their homes or community settings. By prioritizing individual choice and independence, the MFP Program helps enhance the quality of life and autonomy for participants. For many years there was something called a “Medicare/Aide bias” that unfairly incentivized the government to institutionalize disabled people who relied on those benefits. The MFP Program provided a way for disabled people to leverage their benefits away from nursing homes and other care facilities.

Despite the progress, many challenges remain. Funding limitations, varying state policies, and inadequate resources have hindered the full realization of Olmstead's mandate. The average wait time for a person with a disability to secure housing outside of a nursing home or institution varies considerably depending on location, available resources, and individual needs. According to a report by the National Council on Disability, wait times can range from several months to several years, with some individuals experiencing extended delays in finding suitable community housing options. Factors such as the availability of affordable and accessible housing, funding for support services, and policies affecting community integration all play a crucial role in the length of time it takes for individuals with disabilities to transition out of nursing homes or institutions.

Advocacy groups like ADAPT continue to work tirelessly to ensure that the promises of Olmstead are fully realized. They push for policies that expand funding for community services, enhance service quality, and ensure a more uniform application of the Olmstead decision across states. Focusing on the future, the goal is about creating sustainable and effective models of community care that can accommodate the diverse needs of individuals with disabilities. The challenge is, however, not to allow these new “models of community care” to become just another version of segregated living.

I will close by saying that in my work at a disability justice center, I personally met disabled people for whom Olmstead dramatically changed their lives. One woman was forced to live in a nursing home against her will because she lacked the proper wheelchair to navigate independently inside of a single-family home. Once we helped her get a wheelchair and a ramped access into her home, she was able to move back to it. A second example is of a young man who had a spinal cord injury. Thanks to the programs I highlighted above, we were able to divert him into accessible rental housing instead of having to stay in a rehab center. This change greatly improved his mental health and outlook. He started community college that Fall, and was excited about life again, even while adjusting to being disabled.

The bottom line is NO ONE, I repeat, NO ONE, should be warehoused into remaining in an institutional living situation against their will. It is a stark denial of disabled peoples’ civil rights. Additionally, it perpetuates the medical model of disability and unfairly stigmatizes us as incapable of caring for our own lives and needs.