Home is Where the Institution is, in Illinois

Chicago, ILA groundbreaking case in Illinois has paved the way for citizens with developmental disabilities to claim their civil human rights in the achievement of choice with regard to where they live. Civil rights law is the guarantee that every American will be treated fairly and without discrimination. But this landmark civil and human rights case in Illinois actually rights a wrong that has been long since fixed in several other States.

The issue centers on the inability of the State of Illinois, until now, to serve citizens with developmental disabilities in smaller, integrated community settings—facilities that would feel more like 'home,' Instead, Illinois has been hanging on to the large institution model. The latter provides clients with little or no choice as to where, or how they live.

It should be noted that the State of Illinois ranks 51st out of all States in the Union, and the District of Columbia, in the serving of people with developmental disabilities in small, integrated settings. In the State, developmental disability clients seeking residential options have had no choice but to be stacked in an institution. This was interpreted as a violation of civil rights and the law, and an agreement between the Plaintiffs and the State of Illinois in a recent class-action lawsuit paves the way for long-needed changes.

One of the plaintiffs named in the lawsuit was David Cicarelli, a 35-year-old man with a developmental disability. "Where I live now, I cannot choose my own roommate and I have no privacy," he says. "I want to live with friends in the community and have my own room."

David's father, Jim Cicarelli agrees, "We are so happy that our son, and many others with developmental disabilities, will be fully integrated into the community. For over ten years, David has waited to fulfill his dream to live in the community. We are thrilled that finally his dream will be realized."

It was nearly two decades ago that Congress passed the Americans With Disabilities Act (ADA). And in tandem with the ADA, the US Supreme Court ruled nearly a decade ago that unnecessary institutionalization is discrimination under the ADA.

Since then, the State has snubbed its nose at the ruling and done little to foster improvements to the civil and human rights of people with developmental disabilities. Illinois has continued to house nearly 6000 residents in a series of 250 large, privately run congregate care facilities.

Until now.

Thanks to the class action lawsuit and the proposed Consent Decree, every individual with a developmental disability and currently living in private institutions will be afforded an independent evaluation, in an effort to determine suitability to live off-site, and to assess the supports and services the client might require to live within a community setting.

Once those evaluations have been undertaken, clients who choose—or do not oppose—a move into more of a community setting will be provided with an individualized service protocol and allowed to move into the community at large over a six-year period.

"People with disabilities have waited too long for this day," said Marca Bristo, President of Access Living, which serves as co-counsel on the case. "However, we have always had faith that, as Martin Luther King, Jr. once said, 'the arc of the moral universe is long, but it bends toward justice'"

Benjamin Wolf agrees. Wolf is affiliated with the American Civil Liberties Union of Illinois, and co-counsel in the case. "Experience around the country shows that when given a meaningful choice, people with disabilities thrive in community settings," he said. "This agreement will truly change the lives of thousands of Illinois residents."

This case is especially helpful for those individuals still living in the family home, but at risk of institutionalization. They will now have expanded options that may allow them to live in their home for longer, and those identified as 'Crisis' or 'Emerging Crisis' clients will receive services from the State on an individual basis.

"The day has finally come when people with developmental disabilities have the opportunity to live in the communities of their choice and enjoy the independence and privacy that all of us consider rights but which, until now, have been denied," said Ed Mullen of Access Living.

A great day indeed for civil human rights in Illinois, and a victory for civil rights law. An example of one of the last holdouts in the US, Illinois now observes civil and human rights that the remainder of the country has been observing for years.

But it took a lawsuit to get them there.