The passage of the Americans with Disabilities Act (ADA) of 1990 established that all people with disabilities, including those with ASD, have a legal right against discrimination in most facets of life, such as employment, education, and housing. In 1999, in the landmark case, Olmstead v. L.C., the United States Supreme Court held that institutionalization constituted unjustified segregation in violation of the anti-discrimination provisions (Title II) of the ADA. Olmstead became the catalyst for deinstitutionalization of individuals with disabilities. The Court noted, pursuant to Title II of the ADA, that states are required to place individuals with mental disabilities in community settings rather than institutions when three conditions are met: (1) the State’s treatment professionals have determined that community placement is appropriate, (2) the community setting is a “less restrictive setting” and the transfer is not opposed by the individual, and (3) in light of the State’s available resources, the community placement can be “reasonably accommodated.”
Using the Olmstead decision, people with disabilities once segregated in institutions have filed lawsuits nationwide to mandate states to provide services and supports in the community. Thus, people with ASD in institutions, including mental hospitals and nursing homes, can use Olmstead to create community-housing supports. In Georgia, for example (the Olmstead state), the state has been compelled to develop housing in the community for 9,000 individuals, pursuant to the October 19, 2010 settlement agreement. According to this agreement, all individuals currently in hospitals will be transferred to community settings by July 2015. Other examples abound in several states. According to a 2003 study of the states’ response to Olmstead, conducted by Ohio’s Developmental Disabilities Council, more than forty states have created “Olmstead specific task forces.” Those task forces have been charged with ensuring that individuals are moved from institutions to community settings by establishing budgets, requesting appropriate funds be made available to provide adequate housing and supportive services, and moving people off waiting lists. Unfortunately, data collected by the University of Minnesota’s Residential Information System Program, between the years 2005 and 2009, shows that the number of people living in public and private institutions has not declined in many states including New Jersey and New York. The data further reveals that thousands of people in several states are still waiting to receive residential services (118,122 individuals nationwide as of 2009). Recent litigation by the Disability Rights of New Jersey, addresses this concern. A complaint was filed against the NJ Department of Human Services, claiming that the rights of 8,000 individuals with developmental disabilities were violated because they remained on residential waiting lists and were not moved from segregated settings to the community. (In 2003, a similar lawsuit was initiated in Oregon on behalf of 5,000 individuals with developmental disabilities.). The NJ case argued that lack of money is not a defense for the state because civil liberties are independent of state funds, and indeed, it costs double to care for individuals in an institutional rather than a community setting. (It is interesting to note that in Olmstead, the plaintiffs reported a cost $283/day to care for an individual in an institutional hospital as compared to $112/day for community services.)
While Olmstead is a powerful sword for people with disabilities who reside in institutions, it cannot be used to compel development of community-based housing for those living in non-institutional settings. Thus, many states inspired by Olmstead have developed Medicaid home and community-based waivers that cover Medicaid recipients in or at risk of institutionalization to help fill that gap. The Medicaid waiver program is one way to assist individuals with ASD “at risk of institutionalization” with supports needed for community-based housing. Section 1915 (c) of the Social Security Act enables states to request a waiver of applicable federal Medicaid requirements to provide enhanced community services. Only Pennsylvania has a Medicaid home and community-based waiver for adults with ASD at risk of institutionalization. All other waivers involving ASD are for children only.
Thus, Olmstead and the Medicaid waivers may ensure that a large number of people with ASD can secure supportive housing in the community. In 2009, the University of Minnesota’s Research and Training Center on Community Living reported that over half a million individuals with an ID/DD receive Medicaid Home-Based and Community Services, six-times the number of individuals in Intermediate Care Facilities. However, many people with ASD will not qualify because they are too high functioning and thus are not Medicaid eligible through SSI or are not at risk of institutionalization. Yet, to implement the spirit of Olmstead all people with ASD and other disabilities should have the right to live in the community and the right to self-determination.
Pennsylvania has been a leading state concerning the development of housing options for individuals with ASD. Not only is it the only state to have the ASD adult waiver, the Department of Public Welfare’s Bureau of Autism Services has created the Housing Options Committee. This committee was charged with identifying housing options to ensure independence upon the transition to adulthood, through the concept of “accommodated living.” This general concept involves providing supports to individuals who wish to live as independently as possible and avoid institutionalization. Accommodated Living requires development of an individual plan with a person’s support team (house team, behavioral consultant, provider training). In April 2010, the Committee issued a Housing Report, identifying 22 housing models, with funding information that could be applied to individuals with a range of developmental and intellectual disabilities.
In addition to the Medicaid waiver, other funding options introduced to ensure affordable housing, include, but are not limited to: the Housing Choice Voucher; HUD Section 811 funding; Section 211 funding; rental subsidies; project based rental assistance; housing trust funds; and refinancing options. Public housing authorities, local government, and nonprofit organizations that receive federal funding can use these funds to develop rental housing or supportive programs to provide affordable housing for adults with disabilities. Under HUD’s Section 811 program, nonprofit organizations can develop rental housing for low-income adults with disabilities and provide rent subsidies. To ensure the affordability of housing and community services, the HOME program was created in 1990 to support the state and local housing programs, and states also have the option of creating a housing trust fund in which revenues from taxes or fees are collected to develop and support affordable housing. Also, according to the Bureau of Autism Services in PA, people with disabilities generally have priority in receiving Housing Choice Vouchers. Furthermore, a low-income housing tax credit is available to owners of affordable rental housing and provides incentives for creation of such units. (Bureau of Autism Services Housing Report, April 2010).
The challenges for developing housing options are not limited to funding, but also to ensuring that models address the specific needs of adults with a specific disability. For example, adults with ASD may require different housing structures than adults with conditions such as cerebral palsy or spina bifida: “Some adults with autism might require housing that limits light or noise to accommodate sensory sensitivity. Some might need relatively secluded housing to address socialization issues, while others may need shared housing to accommodate live-in aides or require ready access to public transportation or medical facilities.” (Developing New Housing Options for Adults with Autism, Pennsylvania Department of Public Welfare (Apr. 23, 2010)). One way to experiment with housing is through the development of pilot programs (e.g. Autism Pilot Program). Thus, efforts to create independent living housing (rather than group homes where people with disabilities are only living with others with disabilities) continue.
As the population of adults with ASD skyrockets, the need for creative housing solutions will soar. Yet, Olmstead may only help a minority of these adults. Legislative, not litigative, solutions must be developed that capture the spirit of Olmstead and the ADA in state legislation. Only by creative advocacy can we create an array of housing options for all adults with ASD.
In addition to being a proud parent of an adolescent daughter with ASD, Sheryl Dicker, JD is Assistant Clinical Professor of Pediatrics and Family and Social Medicine at Albert Einstein College of Medicine, the Children’s Hospital at Montefiore, Rose F. Kennedy University Center for Excellence in Developmental Disabilities. Sheryl has been working for over three decades as an advocate on behalf of those challenged by developmental disabilities, poverty and the child welfare system. Sheryl was appointed by President Clinton to the President’s Committee on Mental Retardation and served as then Governor Clinton’s General Counsel of the Department of Human Services. Before joining the faculty at Einstein, Sheryl was the Executive Director of the NY Permanent Judicial Commission on Justice for Children (the nation’s first children’s commission based in the judiciary).
Kristina Majewski is the sibling of an adolescent with special needs and has a long history of advocacy for individuals with disabilities. Kristina is a law student at Cardozo Law School, Class of 2010 and is a LEND Law Student Fellow at the Einstein College of Medicine.