Being able to have at least some choice in where to live, and with whom, is something most nondisabled people likely take for granted. But for people with disabilities, the legal right to do so is still relatively new—and it’s a choice many are still fighting for.
June 22 marks the 20th anniversary of Olmstead v. L.C., the landmark U.S. Supreme Court decision that held that the unnecessary segregation of people with disabilities into institutions violated the Americans with Disabilities Act (ADA).
The case was brought by two women, Lois Curtis and Elaine Wilson, who had intellectual and psychiatric disabilities and were living in a state-run institution in Georgia. Although medical professionals had determined both women were capable of living in the community, Curtis and Wilson were confined to the institution for several years.
In reaching its determination that Title II of the ADA required disabled people to be integrated into their communities to the maximum extent possible, the Supreme Court ruled states must provide community-based services when (1) such services are appropriate; (2) the individual wishes to live in the community; and (3) community-based services can be reasonably provided, taking into account the public entities’ available resources and the needs of other disabled people receiving services.
The Supreme Court explained that its ruling “reflects two evident judgments.” 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.”
In recent years, lawmakers have interpreted Title II of the ADA to go beyond moving people with disabilities from institutions to ensuring that they can work in integrated settings, earning competitive wages. For example, in 2014, the U.S. Department of Justice (DOJ) entered into a groundbreaking settlement agreement with the state of Rhode Island to expand employment opportunities for people with intellectual disabilities. Specifically, the DOJ asserted that segregated sheltered workshops—isolated working environments where disabled people work alongside one another, usually earning far below minimum wage—violated the ADA’s community integration mandate. As a result of this settlement agreement, Rhode Island is required to provide employment supports, such as job coaches and other training opportunities that enable people with intellectual disabilities to work in the community earning a living wage. Similar settlement agreements have been reached in other states.
Despite the improvements following the Olmstead decision, disabled people continue to be unjustifiably institutionalized. A 2013 report by the U.S. Senate Health, Education, Labor, and Pensions (HELP) Committee, “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” found states were still failing to provide necessary services so people with disabilities could live in the community. According to the report, the number of disabled people under the age of 65 living in nursing homes has increased in recent years.
People with psychiatric disabilities also continue to be unnecessarily placed in inappropriate and segregated settings, according to the report. Indeed, research suggests prisons and jails have become “the new asylums,” as people with psychiatric disabilities are increasingly victims of the criminal justice system, which is ill-equipped to support them.
In response to the persistent institutionalization of disabled people, the Senate HELP Committee recommended that Congress amend the ADA to strengthen the law’s integration mandate and require states to provide people with disabilities real choice as to where they live and the services they receive.
Since 2015, disability activists have been urging Congress to pass the Disability Integration Act (DIA). Most recently, the DIA was introduced in the Senate by Sen. Chuck Schumer (D-NY) and in the House by Rep. Jim Sensenbrenner (R-WI). This bicameral, bipartisan legislation seeks to address the fundamental issue: Disabled people who need long-term services and supports are still forced to live in institutions and are losing their civil rights.
Although providing community-based services is the most cost-effective way to support disabled people, institutional bias remains within the Medicaid system. Specifically, while the federal government requires states to pay for institutional care, coverage of most community-based services is considered optional.
With the passage of the DIA, people who are eligible for long-term services and supports would have the right to live in the community and receive these services, rather than live in institutions. In other words, disabled people and seniors would have a legal right to decide how they receive services and supports as well as where they are provided (i.e., in the community or institutional setting). The DIA would also require states to increase affordable and accessible housing for people with disabilities and seniors.
In part because of the steadfast advocacy of ADAPT, a grassroots group of disability rights activists, support in Congress for the DIA has grown, with 227 co-sponsors in the House. Advocates are now pushing for a committee hearing.
Additionally, until June 21, the U.S. Department of Labor is soliciting public comments on Section 14(c) of the Fair Labor Standards Act, which legally allows entities to pay people with disabilities less than minimum wages in segregated settings.
Sen. Bob Casey (D-PA) and Rep. Bobby Scott (D-VA) have also introduced the Transformation to Competitive Employment Act, which would end subminimum wages for disabled people.
At the same time, President Donald Trump continues to be a threat to the livelihood of disabled people. For example, his repeated proposed budget cuts to Medicaid would result in even more people with disabilities being institutionalized, according to the Center for American Progress. Further, while Olmstead enforcement was a priority for the Obama administration, today the DOJ is investigating and litigating 60 percent fewer civil rights cases (including disability rights cases), according to Vice News. Without such enforcement, states will be unmotivated to comply with their legal mandates. The DOJ would also be the agency in charge of enforcing the DIA, should it pass.
In the 20 years since the Supreme Court decided Olmstead, people with disabilities are increasingly enjoying opportunities to live and work in the community. Nonetheless, far too few disabled people have benefited from the promise of full community integration. It is time we recommit to guaranteeing people with disabilities have the right to live where they choose with needed supports.