By Sandi Rosenbaum, Littman Krooks LLP
Justice Ruth Bader Ginsburg, who died September 18, 2020 and served on the US Supreme Court for 27 years, is best known for her contributions toward dismantling discrimination on the basis of gender, as both an attorney and a jurist. However, it was her June 1999 majority decision in Olmstead v. L.C. a landmark against disability discrimination, for which the disability community will remember her best.
The Court held in Olmstead that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act (ADA). Writing for the majority, Justice Ginsburg interpreted the ADA to require that public entities must provide community-based services rather than institutional care to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated. Two women with intellectual and mental health disabilities, Lois Curtis and Elaine Wilson, initiated the lawsuit again state officials to obtain release from a psychiatric hospital. They were voluntarily hospitalized in a Georgia state hospital but wanted to live in the community and sought release. Although the treating professionals agreed, their release was delayed by over a year. The women believed, and the United States Supreme Court agreed, that they had the fundamental right to community-based living and treatment.
Ginsburg wrote, “The ADA … specifically identifies unjustified ‘segregation’ of persons with disabilities as a ‘for[m] of discrimination.’ … [which] … reflects two evident judgments: 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; and institutional confinement severely diminishes individuals’ everyday life activities” including “family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.”
These words changed the trajectory for people with disabilities as Medicaid, the primary funder of long term services and supports in the US, began to shift its provision of such supports from institutions to Home and Community Based Services (HCBS) Waiver programs. With HCBS supports, people with all kinds of long-term care needs, including those with developmental disabilities, now live and work in the community rather than having their only available options being to live in institutions or to work in subminimum wage jobs at sheltered workshops. Many such individuals, and their families, value their ability to live, work, and maintain relationships with people both with and without disabilities, and appreciate the supports that make such choices possible.
The Unintended Legacy of Olmstead: Community Based Living Mandated for HCBS Support
In recent years, in a continuation of the emphasis on integrated community living brought about by Olmstead, the federal Center for Medicaid Services (CMS) opined in its 2014 Settings Rule that individuals living in freely chosen segregated settings are no longer eligible to receive HCBS supports. A similar view has led to the phase-out of sheltered workshops.
Justice Kennedy, in his concurring opinion, made two observations that are pertinent today, “… there [is no] federal requirement that community-based treatment be imposed on patients who do not desire it,” and went on to state, recalling the broad mental health deinstitutionalization movement begun in the 1960’s, “it would be a tragic event, then, were the [ADA] to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
Some families of individuals with severe developmental disabilities, quoting from Justice Kennedy’s concurring opinion, have advocated that their loved ones enjoy more autonomy in safe, protected campus communities and farmsteads, where all the individuals they encounter have been vetted and the environment is designed for them to safely move about independently. In such settings, where safety risks are limited, individuals can and do take these limited risks to increase their skills and their independence over the long term. Without Medicaid support, the opportunity to reside in such a community and avail oneself of its particular growth opportunities is limited to those who can privately fund the significant costs. Many families argue that current CMS policies discriminate against individuals with disabilities by limiting these choices.
Another concern relates to Justice Kennedy’s second point, that vulnerable individuals would one day be driven out of appropriate care and into settings with too little assistance and supervision. Here in New York State, the agencies that support individuals with disabilities, already reeling from COVID-19 related expenses, continue to have their funding reduced. Supports for individuals with significant behavioral needs can be difficult to administer in the larger community and shortages frequently occur.
The Olmstead decision opened doors for individuals with disabilities and confirmed that segregation is discrimination. The precedent’s legacy, however, has led to the imposition of federal and state laws that now mandate that individuals with disabilities, no matter how severe or specialized their needs, must live in the community to receive HCBS waiver support, regardless of whether their day-to-day experiences offer any measure of engagement with non-disabled individuals beyond staff and family. The law should allow a middle ground. As the decision was predicated upon the will and desires of the plaintiffs, who sought to live in the community, the law should grant some weight to the autonomy and wishes of individuals with disabilities who wish to live, for example, in a farm or campus-like setting. Further advocacy is needed.
The dedicated team of special needs advocates at Littman Krooks, LLP, has a comprehensive understanding of the educational and transitional support requirements pertaining to students with special needs. They use this knowledge to ensure that every student gets the education and support they need and deserve. Littman Krooks has been helping New York families for over 30 years. The knowledgeable attorneys at Littman Krooks can be reached 914-684-2100. Contact us at https://www.littmankrooks.com/.