What Does the Administration for Community Living (ACL) Do?
The Administration for Community Living (ACL) was created in 2012 to advance the idea that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities. ACL does this by funding services and supports provided primarily by networks of community-based organizations and by investing in research, education, and innovation.

ACL brings together aging and disability programs from across the federal government to efficiently administer similar programs that promote similar goals. Through its programs, grants, regulations, and policy advocacy, ACL makes community living possible for more disabled people and upholds our civil rights, including those rights defined by the 1999 Olmstead v. L.C. Supreme Court decision.

What Does the Office for Civil Rights Do?
HHS’ Office for Civil Rights (OCR) investigates violations of, and enforces federal civil rights law related to HHS’ work, like civil rights violations made by a healthcare provider or hospital. Federal civil rights protect people from discrimination based on gender, race, disability, nation of origin, and religion.

At HHS, OCR also enforces the Health Insurance Portability and Accountability Act (HIPAA) Privacy, Security, and Breach Notification Rules, and the Patient Safety Act and Rule. HIPAA’s Privacy, Security, and Breach Notification Rules protect your private health information and make sure you know if your private health information was given to any person or organization who doesn’t have your permission to have that information. The Patient Safety Act and Rule created a voluntary reporting system to make complaints if you have a concern about your safety as a patient or the quality of your healthcare.

You do not have to be a lawyer to file a complaint with OCR, which makes it more accessible than lawsuits or other legal processes.

What Does SAMHSA Do?
HHS’ Substance Abuse and Mental Health Services Agency (SAMHSA) promotes mental health, prevents substance misuse, and provides treatments and supports to foster recovery while ensuring access and better health outcomes for all. SAMHSA provides information, resources, and guidance for providers as well as advocates for policies that help make SAMHSA’s vision a reality.

SAMHSA’s mission and vision state that SAMHSA envisions a world where “people with, affected by, or at risk for mental health and substance use conditions receive care, achieve well-being, and thrive.” This is very important because many people with mental health disabilities and/or substance misuse disorders often face stigma in their communities. Stigma makes it harder to receive proper care, and isolates people with these conditions.

This timely letter demonstrates strong, broad support for the critical work of ACL, OCR, and SAMHSA. You can learn more and read the full letter by clicking this link.

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Find Medicaid’s HCBS website with many resources, applications, and information by clicking here.

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ACL is working to support the development of standards and measures directly related to the well-being of older adults, people with disabilities and their families, as well as the availability of and access to services and supports for all individuals. These standards are being developed and implemented through ongoing program performance, program evaluation, and other continual quality improvement strategies.

Learn more about resources and information from ACL at this link.

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Read this page to get an overview of community integration.

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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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Lois Curtis proudly displays portraits that she drew. Photo Credit: Robin Rayne

WASHINGTON, DC – The American Association of People with Disabilities (AAPD) mourns the loss of Lois Curtis, a civil rights icon and a champion for justice. Lois was the lead plaintiff in the 1999 U.S. Supreme Court landmark decision, Olmstead v. L.C., a decision that changed the lives of millions of Americans and spurred major shifts in our health care, behavioral health, employment, and education systems. Lois Curtis was a powerful advocate with intellectual disabilities, and due in part to her advocacy, people with disabilities have enforceable legal rights to the supports they need to live, work, and learn in their communities.

Lois was institutionalized at the Georgia Regional Hospital beginning at age 11. By age 19, she knew she no longer wanted to live in an institution or take unwanted medications that drained her energy and kept her sedated. She began calling the Atlanta Legal Aid Society to seek their assistance to be released. It took years of legal fights by Lois Curtis, Elaine Wilson, and their supporters, but eventually they prevailed when the Supreme Court held in Olmstead that unjustified segregation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA). In a decision penned by Justice Ginsburgh, the Supreme Court ruled that:

“First, institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life…Second, 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.” – Olmstead v. L. C., 527 U.S. 581 (1999)

It took more time to find the right combination of supports for Lois to thrive in the Atlanta community she called home, in part because she was such a trailblazer. The systems of support Lois needed had to be newly created due to the transformational nature of the Olmstead decision.

“ Lois wanted to be free. She wanted to live on her own terms with dignity. In working to achieve that for herself, she made it possible for other disabled people to do the same. Lois Curtis’ impact cannot be overstated, and her advocacy will continue to shape the landscape of disability and civil rights for decades to come, said Maria Town, President and CEO of AAPD.

In addition to being revered as an advocate, Lois was beloved as an artist and a friend. Those closest to her remember that Lois loved music, singing, eating out, meeting people, shoe shopping, going to fairs, and drawing “pretty pictures.” Her friends remarked that she created artwork as she lived–her lines drawn without hesitation, her colors bold and saturated, her images spirited.

Lois wrote in 2010,

Lois Curtis smiles during a “micro-board” meeting. A group of her friends and supporters get together once a month to help Lois plan her life.

“To all the people living in institutions: 

I remember you. Give me a prayer.

Sometimes I feel good about my life.  

When I feel bad about my life I name my country, sing the gospel, and bring my mind back home.

I will sing with you again.

Have a beautiful day.

Love, Lois”

Lois Curtis died in her home in Atlanta, Georgia, on November 3, 2022. She was 55 years old. Lois will be laid to rest at the South-View Cemetery in Atlanta, Georgia, alongside many other significant American civil rights figures.

AAPD sends peace and comfort to Lois’ family, loved ones, and to our community who benefit from her efforts to ensure that disabled people have the right to live integrated within our communities, not segregated inside institutions. This fight is as urgent today as it was 23 years ago. Lois’ legacy and impact will live on in the disability rights movement as we continue to fight for community integration, de-institutionalization, and self-determination for all disabled people. Rest in Power, Lois.

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