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Edwin Yohnka Headshot

A Room of Their Own

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The other day, I had a conversation with a friend about how much we (independently) enjoy being at "home." There was nothing unusual about our conversation. For most of us, home is a refuge -- whether we live in a private home, a townhouse, condo or apartment. At the end of a difficult day or week at work, it is so rewarding to head home to rest, relax and engage in whatever activity one wants -- reading, watching television, reading blog posts or just hanging out with family and friends.

My enjoyment of "home" has lost a little luster of late. Every time I think about how much I love my own home, I am sad for Stanley Ligas. Stanley Ligas is 41, he has a job, takes care of his own finances and knows what he wants. Unfortunately, Stanley lives in Illinois. Our state has an antiquated system of providing services to persons with developmental disabilities in Illinois, a system that keeps Stanley trapped in a large institution -- a "home" that he shares with nearly 100 other people.

Illinois does not only fail Stanley, it fails thousands of persons just like Stanley. Currently, the state ranks 51st -- dead last -- among all the states and the District of Columbia in the percentage of persons with developmental disabilities served in small, community-based settings.

A few years ago, the ACLU of Illinois, along with Equip for Equality, Access Living, the Public Interest Law Center of Philadelphia and the Chicago office of the law firm Sonnenschein Nath & Rosenthal, took on this issue by bringing a lawsuit on behalf of Stanley and several others. The aim of the litigation was to give each person with developmental disabilities in Illinois a choice about where they live -- a choice that is guaranteed to them under the Americans with Disabilities Act. This right was further reinforced 10 years ago, when the Supreme Court decided the case Olmstead v. L.C. In short, these individuals have a civil right to live in a setting that is the one they desire and the least restrictive, rather than simply being bound to a large institution.

The lawsuit resulted in a landmark settlement with the State of Illinois. Under the agreement, we felt confident that Stanley -- and thousands of folks like Stanley -- soon would be able to make an informed choice about where they live. They could live in an apartment of their own, decide who they wanted for a roommate, what and when they wanted to eat, and even what to watch on television. Individuals and families who believed that an institution was the best living arrangement for them or their loved one would not be forced to move to a smaller, community-based setting under the agreement. The agreement promised critical, systemic change to a flawed system that does not serve many individuals and their families.

After a fairness hearing to consider the agreement in early July, a federal court rejected the settlement and de-certified the class previously approved by the court. This is a great disappointment for the ACLU of Illinois and our coalition partners. Worse still, it is a set back for all persons with developmental disabilities (and their loved ones) who want a voice in the decision about where and how they live.

Fortunately, the judge did not dismiss the case. Our work goes forward. You can read more about the court's decision and our reaction by clicking here.

In a few days, our nation celebrates the 19th anniversary of the Americans with Disabilities Act. For all the progress that has been achieved under the ADA, there is still much work to be done in Illinois, especially when it comes to permitting persons with disabilities to live and interact in the community, rather than be stuck -- like Stanley Ligas -- in large institutions. It just doesn't seem fair and reminds us that we will not reach the real goal embodied in the ADA until those with disabilities are integrated fully into our communities. The work of the ADA was not finished with ramps and access to public transportation. To finish the job, we need to ensure that individuals like Stanley have the simple human dignity that comes from having a place of their own.