Kenzaburo Oe, Nobel laureate and father of a disabled son, once said that “one does not truly know a culture until one knows how its disabled people interpret it, live it, critique it, and comment upon it.” U.S. Supreme Court decisions from the 20th century provide a critical window into American culture and the titanic shift that occurred in how disabled people experience it, particularly given the stark contrast between Supreme Court decisions in 1927 and 1999.

Buck v. Bell, 1927Olmstead v. L.C., 1999
In 1927, in Buck v. Bell, the Supreme Court upheld the constitutionality of mandatory sterilization of disabled people “for the protection and health of the state[emphasis added]…It is better for all the world if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit [emphasis added] from continuing their kind.”The majority opinion in Olmstead v. L.C. issued on June 22, 1999, called into question the “unfit to live” ruling of Buck v. Bell. “Unnecessary segregation of persons with mental disabilities perpetuates unwarranted assumptions that such persons are unfit [emphasis added] for or unworthy of participating in community life,” Justice Ruth Bader Ginsburg wrote for the majority. “Unjustified institutionalization of persons with mental disabilities…is discrimination,” the Court wrote in Olmstead, and “the ADA [Americans with Disabilities Act] requires States to provide community based treatment for persons with mental disabilities.”

What can explain such a powerful cultural and legal shift? The Olmstead decision came about through decades of tireless advocacy by disabled people. It effectively freed millions of disabled people from unnecessary segregation just because they need help getting out of bed, bathing, grooming, dressing, cooking, eating, etc. — a type of health care also known as long-term services and supports (LTSS). At the 25th anniversary of the June 22, 1999 Olmstead v. L.C. decision, we explore the impetus behind this landmark ruling, its widespread impact, and opportunities for further cultural and legal change.

The Olmstead Decision: The Impetus

At the center of Buck v. Bell and Olmstead v. L.C. are women with developmental and mental disabilities. Carrie Buck was an 18-year-old white, developmentally disabled woman who was raped, placed in the Virginia State Colony for Epileptics and Feebleminded where her mother had previously resided, and forcibly sterilized after the birth of her daughter. Lois Curtis (L.C. in Olmstead v. L.C.) was a 32-year-old Black, developmentally disabled woman with a mental health disability who spent 20 years in Georgia jails and mental institutions from age 11 to 31. Elaine Wilson was a 48-year-old white, developmentally disabled woman with a mental health disability who had 36 stays in mental institutions and periods of homelessness throughout her life until the case.

In 1995, Lois sued Tommy Olmstead, the Commissioner of the Georgia Department of Human Resources for forcing her to live in a psychiatric unit at the Georgia Regional Hospital with Elaine joining her in the lawsuit one year later. Lois and Elaine both wanted to live in the community with their families, and doctors said they could do so, but they were confined to the hospital as a condition of receiving LTSS instead of providing those services at home or in a community setting. The State of Georgia argued that Lois and Elaine’s request for community-based care was unreasonable given “inadequate funding” and the inability of the state’s mental health budget to support the cost of care for Lois and Elaine in the community.

On June 22, 1999, the Supreme Court rejected the State’s “inadequate funding” defense and held that “Title II of the ADA requires States to provide community-based treatment for persons with mental disabilities, when the State’s treatment professionals have determined that such placement is appropriate, when the affected persons do not oppose such treatment, and when the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities.”

Olmstead Decision: The Impact

Over the past 25 years, the Olmstead decision has impacted millions of people. Today, 1 in 4 people in the United States have some type of disability and approximately 5.8 million of them use Medicaid-funded LTSS. In 1999 when the Supreme Court issued the Olmstead decision, 27 percent of total Medicaid LTSS spending was on home and community-based services (HCBS) and 73 percent was on institutional LTSS. After the Olmstead decision, HCBS spending increased dramatically — by 2020, 63 percent of total Medicaid LTSS spending was on HCBS and 38 percent was on institutional LTSS. Today, there are many more state programs that support community living, including more than 250 HCBS waiver programs offered through Medicaid in all 50 states. Finally, an estimated four out of five people living in an institution in 1987 were living in a community-based setting by 2019.

The Olmstead decision impacted, and continues to impact, more than just budgets, spending, and even people with LTSS-related disabilities living in the community though. This includes:

  • For family and friends of individuals with LTSS-related disabilities, the Olmstead decision means they can live and be with the people they love.
  • For non-disabled people, it means they can learn from a diversity of perspectives and experiences from neighbors, coworkers, and friends with disabilities.
  • For state Medicaid programs and federal entities, it means they have the opportunity to provide meaningful choices to the people they serve and ensure equitable services that do not segregate people based on disability.

Opportunities for Continued Improvements

As we celebrate the 25th anniversary of the Olmstead decision and its positive impacts, there remain critical opportunities for state policymakers to improve community-based services and living opportunities for people with disabilities. Areas for Medicaid stakeholders to keep in mind include:

  • Make HCBS a Mandatory Benefit and Reduce Wait Time. Institutional LTSS is a mandatory Medicaid benefit that states must provide while HCBS remains optional. It is only when a state Medicaid program chooses to provide HCBS and the conditions described in the Olmstead decision are met (i.e., that the individual can and wants to live in the community and the placement can be accommodated), that a state must provide care in the community. Though all states have Medicaid waivers that provide HCBS, most have extensive waiting lists, which limits access to services. The Centers for Medicare & Medicaid Services recently issued a final rule that will require states to report on waiting lists, an important step in understanding how many people are waiting for services. However, HCBS remains an optional benefit throughout the country for everyone on these waiting lists.
  • Pursue Community Rebalancing for People with Mental Health Disabilities. Despite several high-impact Olmstead settlements by the U.S. Department of Justice, people with mental health disabilities remain institutionalized at high levels. In 2019, people with physical disabilities represented more than three-quarters of all transitions from institutional to community settings (38%) through the federal Money Follows the Person demonstration, followed by people with developmental disabilities (12%), people categorized as other (8%), and lastly people with mental health disabilities (4%). National institutional Medicaid mental health expenditures increased 18.5 percent between 2019 and 2020, but less than 0.2 percent of all section 1915(c) waiver program expenditures for HCBS during the same period were for people with significant mental health disabilities.
  • Address Inhumane Treatment for LTSS Population with Developmental and Mental Health Disabilities. An estimated 35 percent of people with developmental disabilities also experience mental health disabilities and HCBS systems struggle to address their behavioral health needs. Some are subjected to inhumane and painful treatment in institutional settings, including the use of electric shock devices. Although the U.S. Food and Drug Administration is proposing to ban these devices, they are still allowed in some state-funded institutions to address “challenging behaviors.” State and federal authorities can help reduce the use of inhumane treatments by withholding payment as necessary, as was done with federal funding to the Judge Rotenberg Center. Furthermore, Medicaid programs can expand HCBS access so people with co-occurring developmental and mental health disabilities can receive humane care in the community, without exception.
  • Improve Integrated Services for People with Disabilities Post IncarcerationNearly 40 percent of people in state prisons have a disability, where lack of LTSS services is exacerbated, and community integration is challenging post-incarceration. Connecting people with LTSS disabilities to pre-release services that facilitate access to Medicaid HCBS supports reintegration into a community setting and the potential for better health-outcomes post-incarceration.
  • Pursue HCBS Affordability and Access. Although Medicaid is the largest payer of LTSS in the country, it does not meet all the long-term care needs of some people. As many as 64 percent of people receiving Medicaid HCBS reported that staff were not available to help with dressing, showering, or bathing, requiring individuals and families to pay out of pocket to close the gap. Covering these out-of-pocket costs can be particularly challenging, given that only 22.5 percent of people with disabilities in the U.S. are employed, and some of those who are employed are making subminimum wages. In addition to hiring and paying people with disabilities a living wage, HCBS needs to be affordable and accessible. As mentioned above, a recent CMS final rule includes addressing some barriers to HCBS accessibility, but does not yet address expanded access to reduce how many people, who likely cannot afford out-of-pocket costs, are waiting for services.

The Next 25 Years

Just as we saw a seismic shift between the 1927 Buck v. Bell and 1999 Olmstead v. L.C. Supreme Court decisions over the last quarter century, hopefully legislative improvements and judicial decisions in another 25 years will reflect similarly substantial progress from where we are today. Until then, we celebrate the Olmstead decision for what it represents and the freedom it affords disabled Americans to live where they want, with whom they want, and to fully participate in American culture.

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Charlie Carr
18 days ago

Great that CMS understands and celebrates the Olmstead decision with the disability community.. There is still a lot of work to do and I think “the least restrictive environment possible” provision of the decision must be taken into consideration with the most recent final rule. To consolidate efficiencies designed to make services easier to access, we run the risk of creating systems that diminish choice, control, and the dignity of risk. All basic principles of the Independent Living movement were created by people with disabilities in the early 70s.

Last edited 18 days ago by Charlie Carr