Fifteen years ago, on June 22, 1999, the Supreme Court issued its landmark “Olmstead v. L.C.” decision fundamentally changing the lives of Lois Curtis and Elaine Wilson, who had both been languishing in an institution for years after their initial treatment ended. Lois and Elaine filed suit under the Americans with Disabilities Act (ADA) for release from the Georgia facility.
The court ruled in their favor and, in doing so, affirmed the constitutional right to self-determination for Lois and Elaine, but also paved the way for other Americans with disabilities to live outside of institutions, opening avenues and opportunities to enhance our communities and our lives.
Even as we celebrate the 15th anniversary of the Olmstead decision, NCD recognizes that there is more work to do. As courts continue to apply and interpret what Olmstead means and how best to implement practices and policies that reflect its core principles of self-determination and inclusion, NCD offers the following guidance to facilitate and foster ways that people with disabilities can work, play and contribute to all aspects of American life alongside our non-disabled peers.
Specifically, NCD amplifies our call for the gradual phased elimination of sheltered workshops, which segregate disabled workers and pay less than minimum wages (sometimes shockingly just pennies per week in earned wages). Progress is being made in this regard. Under a proposed rule published June 17 in the Federal Register, the U.S. Department of Labor would raise minimum wage for federal contract workers — including those with disabilities — to $10.10 per hour effectively ending the use of waivers that allow workers with disabilities to be paid less than minimum wage.
Since the year of Community Living in 2009, the Department of Justice (DOJ) has aggressively sought to enforce Olmstead’s integration mandate through The Community Living Initiative, bringing actions or signing on to existing cases in more than two dozen states. These cases, settlements and consent decrees, in addition to cases brought by private attorneys, have not only reaffirmed Olmstead that segregation in an institution violated the integration mandate, but also expanded that principle.
For example, under a recent agreement as a result of U.S. v. Rhode Island, people with intellectual and developmental disabilities can no longer be consigned to segregated, sheltered workshops unnecessarily without being provided with meaningful opportunities for integrated employment. The settlement also requires the state of Rhode Island to provide individuals with transition services for youth, supported employment, and an array of employment services intended to result in integrated employment outcomes for these individuals.
This notable expansion of the Olmstead integration mandate illustrates a shift in application that extends beyond institutionalization toward the meaningful allocation of community resources that foster self-determination and independence. Cases involving waiting lists for community services, access to durable medical supplies and equipment, personal care attendant services, individualized therapies and other supports have pushed states to make sure the services that are needed to live in the community are both funded and available.
With this trend in mind, NCD has sought to foster and facilitate the expansion of community living opportunities through the development of our Deinstitutionalization Toolkit combining information and guidance to build capacity to serve more people with intellectual and/or developmental disabilities as the call to move more people move out of institutional settings and into the community gains both support and momentum.
In September 2013, the Long-Term Care Commission issued A Comprehensive Approach to Long-Term Services and Supports (LTSS). The report stressed that as the nation moves to a comprehensive system for LTSS, and supplements it as necessary, improvements are needed to ensure real world success.
NCD echoes the Commission’s recommendations. Among them:
- A public social insurance program that is easily understood and navigated must be established at the core of an effective LTSS financing system. A social insurance core would not eliminate the roles of private insurance or of family financing or caregiving, but rather – if applied efficiently – world make existing programs more manageable.
- Direct-care workers must be paid a living wage, be well trained, and have opportunities for career advancement.
- Public programs providing services to LTSS beneficiaries must appropriately engage with family members and caregivers and their needs must also be addressed.
Additionally, improvements are needed in existing programs. Among the improvements suggested by individual Commissioners, NCD agrees that:
- The current Medicare program must be adapted to reduce counterproductive, outdated and unreasonable barriers to outpatient therapies, home health and skilled nursing facility care.
- Existing financial incentives to states for quality home- and community-based services must be extended and streamlined to make it easier to rebalance Medicaid LTSS. In addition, Medicaid’s benefits must be improved for people who rely on Medicaid’s services.
- Tax-preferred savings accounts must be provided for people and their families who are not currently receiving LTSS through Medicaid. Also, the Medicaid buy-in program for workers with modest earnings must be expanded, and a new pilot program for workers with significant disabilities who have higher earnings should be initiated.
There is no doubt that the Supreme Court’s Olmstead decision has improved overall community integration for Americans with disabilities. The Administration’s commitment to deinstitutionalization, as well as efforts to provide supports and services in the most integrated community setting, along with a demonstrated effort to improve options and opportunities for competitive integrated employment illustrate just how far we’ve come in fifteen years.
As we turn our attention toward the next 15 years of Olmstead implementation, better integration and application of community supports and services must become a priority if we are to continue and build on the foundation that has been created. NCD remains ready to support Congress and the Administration in the achievement of these common goals in recognition of our common values of self-determination, liberty and independence.