Impact Feature Issue on the ADA and People with Intellectual Developmental, and Other Disabilities

It is easy to forget that, when the Americans with Disabilities Act (ADA) became law in 1990, its profound implications for State intellectual and developmental disability (IDD) service systems were not immediately recognized. In most quarters, the ADA was regarded as an important anti-discrimination law whose most significant provisions dealt with accessibility of public spaces and accommodations in the workplace. Although the Department of Justice (DOJ) had, as part of implementing the ADA, issued an “integration regulation” requiring public entities to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities,” it was not until almost 10 years after the law’s passage that the full scope of the law’s integration mandate began to be generally understood. That shift came about when the Supreme Court ruled in Olmstead v. L.C. that “unjustified isolation” of a person with a disability is a form of discrimination under Title II of the ADA. Today, that integration mandate is front and center in the consciousness of State directors of IDD services, and informs key decisions about the direction of the systems they oversee. While it was the Olmstead decision that first made the ADA’s integration mandate explicit to States, the Olmsteadenforcement actions of the DOJ have defined the contours of States’ Olmstead obligations.

Even before the Olmstead decision, many States were on a deinstitutionalization trajectory, as demonstrated by the following data (Prouty & Lakin, 2001):

• In 1977, 83.7% of the estimated population of persons with IDD receiving residential services lived in residences of 16 or more people. But by 2000, the year federal Olmstead implementation began, an estimated 77.2% lived in community settings of 15 or fewer people, and 63.1% lived in settings with six or fewer people.
• Between 1980 and 2000, large State IDD facilities’ average daily populations decreased by 63.7%. In 41 states, a majority of persons with IDD received residential services in settings of six or fewer residents as of 2000.
• Between 1993 and 2000 the estimated number of people with IDD living in their own homes nationally increased by 115.8%.
• In 2000, an estimated 146,612 individuals (39%) receiving publicly-funded services lived in homes of three or fewer residents – this represented a more than nine-fold increase over the number of individuals in similar settings in 1982.

For those States that were already on this path, the Olmstead decision bolstered their efforts and reinforced that they were moving in the right direction.

In 2009, DOJ’s Civil Rights Division launched an aggressive effort to enforce Olmstead. Over the next several years, the division was involved in more than 40 matters in 25 states. Through a series of system-wide settlement agreements, DOJ has expanded the understanding of Olmstead obligations from getting people out of institutions to assisting people to engage in community life. A settlement agreement with the state of Georgia in 2010, U.S. v. Georgia, was a landmark moment: Georgia not only committed to cease all admissions of individuals with developmental disabilities to their State hospitals by July 1, 2011, and transition all individuals with developmental disabilities in the State hospitals to the most integrated setting appropriate to their needs by July 1, 2015, but also negotiated with DOJ specific requirements regarding how they would serve these individuals in the community (U.S. v. Georgia, 2010). Georgia agreed to serve individuals “in their own home or their family’s home consistent with each individual’s informed choice,” rather than “a host home or a congregate community living setting” (U.S. v. Georgia, 2010, pp. 7-8). The settlement agreement stipulates that host home settings will not serve more than two individuals, and any congregate community living settings no more than four. The agreement also requires that Georgia provide “family supports,” defined as “an array of goods and services aimed at providing families with the highly individualized support needed to prevent institutionalization and continue to care for a family member with developmental disabilities at home” to some 2,350 individuals (U.S. v. Georgia, 2010, p. 4). The Georgia settlement is the first high profile instance in which DOJ used its authority under the ADA not just to facilitate deinstitutionalization, but to enforce the idea that publicly- funded community services must maximize integration, and to negotiate specific elements of a State’s service system in order to achieve that goal.

The message of the Georgia settlement was not lost on States and stakeholders. Cases like the one in Georgia have introduced a new federal policy consideration into state-level decisions about services and supports for individuals with IDD. Before the Georgia settlement, the prevailing question about federal regulation that figured into such decisions was, “Does it conform to Medicaid rules?” DOJ’s recent activity has made the question, “Does it conform to Olmstead obligations?” an equal consideration. It is the Olmstead integration mandate and DOJ’s enforcement activities that States have often referenced, for example, when they have declined to fund a new wave of proposed congregate living facilities, often referred to as “farms” or “villages,” for specific disability groups.

The January 2012 settlement agreement in U.S. v. Virginia signaled a further expansion of DOJ’s focus, concentrating not just on individuals currently residing in institutions, but also on preventing “the unnecessary institutionalization of individuals with developmental disabilities who are living in the community, including thousands of individuals on waitlists for community-based services” (U.S. Department of Justice, 2015). The Commonwealth agreed to add approximately 4,200 people from waitlists and institutional settings to their HCBS waiver programs over a 10-year period. An additional 1,000 individuals on waitlists for community services will receive family supports to assist with providing care in their family home or their own home. The agreement also requires Virginia to “create an $800,000 fund for housing assistance to facilitate opportunities for independent living for people with developmental disabilities,” and, importantly, to develop and implement an Employment First policy to “prioritize and expand meaningful work opportunities for individuals with developmental disabilities” (U.S. Department of Justice, 2015). The inclusion of the Employment First provision in the Virginia settlement was an early and clear signal that DOJ’s approach to enforcing Olmstead would increasingly focus on employment, and, more broadly, factors beyond residence, as significant indicators of integration. Just three months later, DOJ intervened in a pending class action lawsuit against the State of Oregon in which it argued that Title II of the ADA and the integration regulation “apply to all services, programs, and activities of a public entity, including segregated, non-residential employment settings such as sheltered workshops” (Lane v. Kitzhaber, 2012, p. 3). This action represented perhaps the most dramatic expansion of DOJ’s enforcement policy yet, broadening department activity beyond consideration of where people live to concerns about how people spend their days. This development reached full fruition in 2013 and 2014 with two major actions in Rhode Island. In 2013, DOJ, Rhode Island, and the city of Providence entered into a settlement agreement specifically focused on 200 Rhode Islanders with IDD who had received services from a particular segregated sheltered workshop and day activity service provider (U.S. v. Rhode Island and City of Providence, 2013). In 2014, DOJ and Rhode Island followed this groundbreaking agreement by entering into the first statewide agreement, in this case a consent decree, citing the Olmstead mandate to prevent individuals with disabilities from being unnecessarily segregated in sheltered workshops and facility-based day programs (U.S. v. Rhode Island, 2014). The milestone agreement is the first to focus entirely on the extent to which a State’s day activity service system includes segregated settings, such as sheltered workshops and facility-based day programs, that have the effect of reducing access to alternatives like supported employment and integrated day services.

Since redoubling its Olmstead enforcement work in 2009, DOJ has taken a series of actions demonstrating a vision of the integration required by Title II of the ADA that extends far beyond the simple question of whether an individual lives in an institutional setting. In Georgia, DOJ sent a strong message that fulfilling a state’s Olmstead obligations includes designing a service system that truly offers individuals the supports they need to successfully live in their communities. The action in Virginia established that Title II gave DOJ the authority to intervene not just to move people out of institutions, but to ensure that a State’s community service system was robust enough to prevent institutionalization in the first place. In Oregon and Rhode Island, DOJ made it clear that the Olmstead mandate applies not just to services that allow an individual to live in their community, but to the entire range of day services States provide to individuals with IDD and others. These expansive Olmstead implementation efforts have had a profound impact on State service systems for individuals with IDD. DOJ’s vigorous pursuit of true integration has ensured that as State officials, individuals with IDD and their families, providers, and other stakeholders work together to determine policy directions for their state, they must take into account the Olmstead implications of decisions regarding not just institutional admissions, but sheltered workshops, congregate day programs, and the very character of the supports they offer to ensure that people with IDD have the opportunity to exercise their civil right to participate fully in their communities.