Illinois Residents Sue State for Violating ADA

Complaint alleges that people with developmental disabilities are warehoused

On July 28, 2005, nine Illinois residents sued Illinois state officials on behalf of a class of plaintiffs with developmental disabilities. The plaintiffs allege that the State has failed to provide developmental disability services in community settings and has instead segregated and warehoused people in large private institutions as a condition for receiving services. The lawsuit comes 15 years after Congress enacted the Americans with Disabilities Act (ADA), and six years after the U.S. Supreme Court held in the Olmstead case that unnecessary institutionalization is discrimination under the ADA. The plaintiffs are represented by four public interest agencies – Equip for Equality, Access Living, the American Civil Liberties Union of Illinois and the Public Interest Law Center of Philadelphia – and by the law firm of Sonnenschein Nath & Rosenthal LLP, which is working as trial counsel on a pro bono basis.

Plaintiff Stanley Ligas has been forced to live in a large institution for the past 12 years in order to receive Medicaid services, despite his repeated requests to move into the community. Ligas hopes that this lawsuit will allow him to receive services while living in an integrated setting. He says, "I want to live with friends in a small house or apartment and have my own room. I can do a lot of things on my own, and I want to be able to cook for myself."

According to recent data, from 1977 to 2004, Illinois ranked 49th among states in its efforts to place individuals with developmental disabilities in small integrated community settings. In 2004, Illinois housed approximately 3,000 people in nine state-operated developmental centers; Illinois has the nation's sixth-highest rate of state institutionalization for people with developmental disabilities. The allocation of funds for community services and supported living for people with developmental disabilities is far below what is necessary to meet the need, and Illinois has failed to obtain all federal Medicaid funds available.

Illinois' antiquated policies channel many people with developmental disabilities not only into its nine state institutions, but also into a system of approximately 250 large privately run congregate care institutions called Intermediate Care Facilities for Persons with Developmental Disabilities (ICF-DDs). Illinois' reliance on these large ICF-DDs is the subject of the lawsuit. More than 6,000 of Illinois' developmentally disabled residents are currently housed in these large ICF-DDs. Of the 250 large ICF-DDs, 216 facilities, with a total of 5,845 residents, have a population of 16 or more, and 6 facilities, with a total of 1,039 residents, have a population of 100 or more. Illinois has the third-highest rate of private institutional placement in the nation.

Most of those 6,000 individuals could thrive in small community-based residential homes integrated into the community. Most people with developmental disabilities prefer to be integrated into the community, where they can pursue more productive and meaningful lives. Moreover, community-based programs are cost-effective alternatives to institutional settings. Despite the demonstrated advantages of community-based programs, Illinois still clings to an obsolete and ineffective mode of service delivery based on models that other states have long ago discarded.

"For far too long, the State of Illinois has relied upon large congregate settings to serve people with developmental disabilities and has refused to develop sufficient community living options," says Barry C. Taylor, legal advocacy director at Equip for Equality. "Because of the clear benefits of community living, the ADA mandates that people with disabilities live in the most integrated setting. This litigation was filed to force the State to do what it has failed to do voluntarily: comply with federal law and fulfill its obligations to the disability community."

The complaint alleges that the defendants do not have a comprehensive, effectively working plan for moving people into the community who are, or who are at risk of being, unnecessarily institutionalized; fail to advise residents of ICF-DDs or other individuals seeking developmental disability services that they may be eligible for community services and that they have the choice of such services; maintain no waiting list for community services; do not adequately evaluate residents of ICF-DDs or other individuals seeking services to determine if they could appropriately be served in a community setting; advise those people who seek community services that they can only obtain them in an "emergency" situation (which is not defined in any pertinent law or regulation); and improperly withhold community services to individuals who are capable of living in a community setting.

"I removed my son Isaiah from a private facility after his safety was put at risk and the facility was cited for medical neglect," says Lutricia Fair, mother and guardian of plaintiff Isaiah Fair. "By refusing to provide community services to my son, the State has abandoned me and many other families who do not want their adult children to be served in institutional settings. I hope this case will help my son and all the other people with developmental disabilities who want to live in the community."

Plaintiffs have suffered segregation and regression due to the State's warehousing of them in large ICF-DDs. Plaintiffs allege that Illinois' failure to provide meaningful opportunities for community-based care violates the Americans with Disabilities Act, the Rehabilitation Act of 1973 and the Medicaid provisions of the Social Security Act. Plaintiffs are seeking an order compelling Illinois officials to make community settings available to people with developmental disabilities.

The individual plaintiffs named in the suit are Stanley Ligas, David Childers, Isaiah Fair, Adam Kulig, James McElroy, Tiffany McFadden, Alex Tyner, Lorene Bierman and Jennifer Wilson. Five of the plaintiffs – Ligas, Childers, McFadden, Tyner and Bierman – currently live in institutions, despite requests to be placed in small community residential homes. Fair, Kulig, McElroy and Wilson live at home with parents or other family members, doing without needed services because the State of Illinois has not provided sufficient community alternatives.

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