Twenty-seven years after Olmstead, the right to live and receive services in the community remains worth defending. As Medicaid faces unprecedented cuts, Dania Douglas reflects on the decision’s legacy, the progress it made possible, and the threats facing community integration today.
I still remember clearly the day I met Lois Curis. To be honest, that may be partly because I behaved a little bit like a starstruck fan, but to me, meeting Lois was a little bit like meeting a rockstar. Lois was a household name in the disability rights movement, and as a second year law student with a disability, I deeply admired her courage and advocacy. In 1995, Lois was a resident at the Georgia Regional Hospital, a living situation that made her deeply unhappy. Lois and another resident, Elaine Wilson, were connected to Atlanta Legal Aid and filed suit to be released from the hospital. The case made its way to the Supreme Court in 1999, where, in a landmark decision, the Court concluded that unnecessary segregation of people with disabilities is a form of discrimination under the Americans with Disabilities Act.
When I met Lois in 2009, ten years after the decision, she was living in her own home with supportive services. She was a talented artist who displayed her work in art galleries around the country. She was friendly, funny, and continued her advocacy for people with disabilities by speaking about the importance of her case.
The Medicaid-funded supportive services that helped Lois live in her own home, pursue her art, and participate in her community is the same type of Medicaid-funded services that millions of people rely on today. Medicaid is the primary payer of long-term services and supports for older adults and people with disabilities. Because private health insurance and Medicare do not cover most forms of long-term care, and because these services can be quite expensive, many people who need these services rely on Medicaid.
Medicaid requires states to pay for long term care in nursing facilities but makes the same type of services received in your home optional for states. Historically, older adults and people with disabilities have often been segregated, receiving services in institutional settings. However, rebalancing efforts by states over several decades now mean that the majority of people who rely on Medicaid for long-term care receive care in their own home, in their own communities.
The types of care that Medicaid can pay for in your home can vary based on individual need. They can include things like personal care assistance, peer supports, habilitative services, and community mental health supports. These services are also often referred to under the umbrella term “Medicaid home and community based services” (HCBS).
HCBS improves outcomes for people with disabilities and saves states money. For example, in 2023, the average spending for a person receiving long-term care at home was $17,298 per person, while the average cost for care in an institution was $51,835. Studies also show that adopting HCBS programs saves states money over time. People who receive care at home, in their communities, also report improved quality of life, including better health outcomes, and improved satisfaction with their lives. Speaking from a personal perspective, I have many friends who benefit from Medicaid HCBS. Many of these friends are leaders in their community, they are advocates, artists, writers, and teachers. More importantly, they are valued companions and family members, whose presence enriches their communities.
Despite the clear value associated with HCBS, significant challenges remain. Even before the recent federal Medicaid cuts, many states struggled to meet the demand for HCBS. At least 41 states maintain waiting lists for HCBS services and people often sit on waiting lists for years at a time. In 2025 nearly 600,000 people were on waiting lists for services. There are significant workforce shortages. Direct care workers who provide care to people in their homes face heavy workloads and low wages, and these positions have high turnover rates. Additionally, one very successful program known as Money Follows the Person, that helps people with disabilities transition out of institutions and back to their own homes, is set to expire in 2027. Despite strong evidence of the program’s success, Congress has yet to grant it permanent funding, hampering states ability to fully utilize the program.
And the pressure on the home care system is only going to increase. Last summer Congress passed the One Big Beautiful Bill Act, cutting nearly 1 trillion dollars in Medicaid funding. With such drastic cuts to federal funding, states are likely to slash spending on services like HCBS. The current administration has also adopted a fraud narrative that is being used to unfairly attack services received at home and in the community and the workers that provide them, in an attempt to justify cuts to these programs. Taken together, these cuts threaten to undermine an already fragile system, putting older adults and people with disabilities at risk of institutionalization. For many people, losing HCBS does not mean losing a convenience. It means losing the ability to remain in their own home, maintain relationships, participate in their community, and exercise basic control over their daily lives.
As we reflect on the 27th Anniversary of the Olmstead decision, it is important to recognize the courage and leadership of people like Elaine Wilson and Lois Curtis. It is also worth acknowledging how far states have come in developing Medicaid HCBS services to help support older adults and people with disabilities living in the community. We are grateful that many policymakers are working tirelessly to improve access to HCBS, floating multiple solutions, including legislation to make HCBS a mandatory Medicaid service, proposals to strengthen the direct care workforce, and administrative rules to improve the quality and accessibility of HCBS. Many states have adopted policies to pay family caregivers which can help ease the pressure on the direct care workforce.
However, it is also a time to clearly acknowledge the significant cuts facing our Medicaid systems, and the narratives that are being used to undermine the value of community integration for older adults and people with disabilities. It reminds those of us who are advocates that we must be ready to adopt the courage shown by people like Lois and Elaine and prepare to protect the systems they fought so hard to establish.
The promise of Olmstead was never simply about leaving an institution. It was about ensuring people with disabilities have the freedom to live, work, create, and belong in their communities. Twenty-seven years later, that promise remains worth defending.
