by Scott Bartlett
When I speak about the history of disability rights, I often point out the landmark case Olmstead v. L.C. It is a case that most American’s have never heard of. Even in disability spaces knowledge of the case is a mixed bag of understanding, yet millions of Americans live by its impact daily for the last 26 years.
In Olmstead v L.C., the supreme court ruled that institutions for people with disabilities violated the Americans with Disability Act and was discriminatory because it segregated people with disabilities from their communities. This decision affirmed that people with disabilities have the right to live in their communities with appropriate support.
Olmstead was a life changing decision for millions of Americans. The case was brought forward by Lois Curtis and Elaine Wilson. Each had psychiatric conditions and developmental disabilities and histories of being institutionalized. When their doctors cleared them to transition into community-based care, they remained in a Georgia state hospital for years.
The decision made by the U.S. Supreme Court in favor of Lois Curtis and Elaine Wilson in 1999, stated that institutionalizing people who could live in community settings with proper supports was discriminatory under the Americans with Disabilities Act. The ruling began a shift to deinstitutionalization and community support for people with disabilities.
In the years since Olmstead, we have seen the creation of Home and Community Based Services (HCBS), which made this range of services a civil rights issue because it supports people with disabilities in the most integrated setting. People with disabilities and older adults would now receive care in their own homes and not nursing homes and/or psychiatric hospitals.
The Center for Health Care Strategies reports that in 1999 27% of the funding for Long Term Supports and Services (LTSS) were for HCBS services and 73% of funding was for institutions. By 2020 they report that 63% of LTSS expenditure was HCBS and institutional LTSS had dropped to 38%. In addition, four out of five people residing in institutions were then living in community-based settings by 2019. Thousands of people who were once warehoused in nursing homes and psychiatric institutions are now living in homes supported by HCBS services. However, the full realization of Olmstead remains a work in progress.
Olmstead and centers for independent living share the same principles. That people with disabilities have the right to self-determination and that they have the right to live and have equal access to their communities. We are the “boots on the ground” for the promise of community living. We do this through the five core services. We provide information and referral to disability related services and support. We provide independent living skills with the goal of empowering people to be independent. A cornerstone of what we do is people with disabilities supporting one another through peer support. In advocacy we help people navigate systems and assert their rights while working to change policies and attitudes that affect the disability community. We provide transition services for youth between school and adult life, and we assist individuals with transferring from nursing homes to community settings. We provide healthcare at home that provides the needed support for people to live with their families and where they choose. Through Veteran Directed Care, veterans can receive services in their own home and avoid nursing homes and other institutional care. In these ways we are fulfilling the promise of Olmstead.
There are some remaining issues that are a barrier to full community integration. Today, hundreds of thousands of people remain on waitlists for HCBS services. In Colorado, the only HCBS waiver with an active waitlist is the HCBS Developmental Disability waiver. This waiver provides people with intellectual and developmental disabilities, access to services and support that make living in a community setting possible.
A shortage of affordable and accessible housing can force people into nursing homes and other group settings, not as a matter of choice, but by default. Without access to affordable and accessible housing Olmstead remains unfulfilled even with services that can be put into place through HCBS services.
Nationally there is a shortage of direct care workers, including Colorado. Some states report closure providers are closing due to staffing challenges. The demand for HCBS services is outgrowing the current workforce, especially in mind of an aging population of people who require HCBS services as older adults. In addition, some states report high turnover rates of staff due to the demanding nature of being a caregiver and often low rates of pay. Workforce shortages directly impact the full realization of Olmstead.
Olmstead was not only a legal decision by the Supreme Court, but it is also a statement that disability rights are civil rights. To fully bring community integration we must fully fund HCBS services and eliminate all waitlists. There must be an investment in the direct care workforce. It is imperative that there is accessible and affordable housing utilizing universal design. Of no less great importance is that centers for independent living continue to provide to the disability community education, support and advocacy.
Lois Curtis, a plaintiff in the Olmstead decision, once said that her wish was to live in her own home so she could paint and be free. She was able to do just that and became known for her art as much as being a symbol of disability rights. She even visited the White House and presented President Barack Obama with one of her paintings. Lois died in 2022, but her legacy is that she secured rights for millions of Americans with disabilities, and she inspired future advocates for many years to come.
When we reflect upon Olmstead, we must also reflect on the work being done at The Independence Center. It is central to what we do in creating and maintaining independence for people with disabilities in our communities. Olmstead provided The Independence Center with the legal foundation for what we do.