For Immediate Release: June 22, 2024
Contact: Jess Davidson at jdavidson@aapd.com; 202-546-5528
WASHINGTON, DC – Twenty-five years ago today, the U.S. Supreme Court released its decision in Olmstead v. LC. The Olmstead decision affirmed the rights of individuals with disabilities under the Americans with Disabilities Act (ADA). It held that unjustified segregation of persons with disabilities in institutions constitutes discrimination, emphasizing the right to live and receive services in the community rather than in isolated, segregated settings. This landmark ruling has significantly influenced disability rights and the provision of community-based services across the United States. However, twenty-five years after this decision, Olmstead’s promise still remains unfulfilled. Today we honor the important role Olmstead has played in shaping and advancing disability civil rights, and affirm our commitment to the substantial work that remains to achieve community integration and autonomy for all disabled people.
Lois Curtis and Elaine Wilson were at the heart of the Olmstead decision. In fact, many in the disability community have said we should call this decision the Curtis-Wilson decision, and we agree. Lois and Elaine both had psychiatric, intellectual, developmental disabilities, and had both been placed in Georgia Regional Hospital, a state-run psychiatric institution, when they were children – Lois at age 11 and Elaine at age 15. Eventually, Lois and Elaine wanted to move back into their communities and live , where they received treatment for mental health disabilities. They were forced to spend years remaining in the hospital, waiting for the state to provide options for community living support.
Lois and Elaine reached out to attorney Sue Jamieson at Atlanta Legal Aid to sue the state. Ultimately, their case reached the Supreme Court, and the Court declared that unjustifiable segregation and institutionalization of disabled people is unlawful discrimination under Title II of the Americans with Disabilities Act (ADA). The Olmstead decision declared what disabled people have known and said for decades – every person has the right to self-direct their lives as much as possible, and institutionalization, no matter its form, is contrary to this goal.
Over the past 25 years, we have seen the Olmstead decision applied to nursing homes, segregated education programs, sheltered workshops, youth transition services, day services and more. Most recently we have seen Olmstead codified in the new Section 504 and Section 1557 regulations, and we are heartened by the Department of Justice’s findings in Utah and Missouri. We celebrate the Olmstead decision today because it affirmed that disabled people have the right to work, live, and access services in their community, and recognized the dehumanizing nature of institutionalization.
“Olmstead mattered in 1999 and continues to matter today, because it affirmed that disabled people are valuable members of their communities, and that it is unacceptable and dehumanizing to shutter us away. While celebrating the leadership of Elaine Wilson and Lois Curtis – two disabled, southern women with psychiatric, intellectual and developmental disabilities – that paved the way for disability inclusion, we must also grapple with the sad reality that Olmstead’s promise has yet to be fulfilled, in large part due to decisions made by legislators at the state and federal levels,” said Maria Town, AAPD President and CEO.
Town continued, “From a lack of affordable, accessible funding, to over-criminalization of disabled people, to poverty wages for disabled workers and direct support workers, our systems are biased toward keeping disabled people segregated. In our inaccessible world, it only takes one barrier or lack of accommodation for a disabled person to slip through the cracks and be forced to enter an institution. There are many ways ableist and racist systems lead to unnecessary de facto institutionalization, and Olmstead’s promise will not be fully realized without comprehensive systems transformation.
“For example, although we have seen a decline in the populations of people in psychiatric institutions and hospitals, the number of disabled people in jails and prisons continues to rise. As of 2016, disabled people make up around two-thirds of the state and federal prison population. Institutionalization can even create a pathway to incarceration – prior to incarceration, disabled incarcerated people are more than twice as likely to have previously resided in institutions such as psychiatric hospitals, group homes, or residential treatment facilities, compared to non-disabled incarcerated people.
“If a disabled person – whether an adult or child – needs daily support that could be provided at home, but they are on a waiting list for, or do not qualify for, Home-and Community-Based Services (HCBS), they and their families are often left with no other other option but institutionalization in order to meet an individual’s needs. Failure to adequately fund HCBS and build out community care infrastructure at the state and federal levels means failure to uphold disabled people’s civil rights and a failure to uphold the promise of Olmstead.
“Disabled people may also be segregated in their workplaces, if they are employed in sheltered workshops for subminimum wages, as allowed by 14(c) certificates from the Department of Labor. In these workshops, disabled people often perform the same work as their non-disabled peers for half or less of the pay, and on average are paid $3.33/hour. Despite decades of advancements in disability civil rights, including the Olmstead decision, placement in these workshops is often the default expectation of young people with intellectual and developmental disabilities and is facilitated by schools and transition programs across the country.” Town concluded
Today we invite you to learn more and honor the spirits of Lois Curtis and Elaine Wilson by doing one or more of the following:
- Share on social media how your life was changed by Olmstead’s civil rights, or would be improved by truly fulfilling Olmstead’s promise using #Olmstead25 on social media, and tag AAPD
- Join our End Subminimum Wage campaign and your members of Congress to end sheltered workshops and subminimum wage by passing the Transformation to Competitive Integrated Employment Act (TCIEA)
- Watch this video with footage of Lois and Elaine joyful and thriving after leaving the institution
- Learn about institutional bias in Medicaid from the Autistic Self-Advocacy Network
- Read AAPD’s tribute to Lois Curtis after her passing in 2022, listen to Joe Shapiro’s NPR story when Lois passed (which includes hearing Lois’ voice directly), and learn about Lois’ art in this feature from The Art of Autism
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