It is a heartbreaking and tragic statistic: nearly 20,000 people with developmental disabilities in Illinois are stuck on a waiting list to get into adult programs which prepare people with mental or physical impairments for life on their own. Most of these people are from families with limited resources, so they are unable pay for home care, job training and coaching, and other services which would help transition them into the mainstream world.
It has been nearly nine years since a court order directed the Illinois Department of Human Services (IDHS) to reduce the backlog and to improve how it serves developmentally disabled adults. A 2011 consent decree gave the state six years to provide individuals living in large institutions with community-based living arrangements, if they wanted them, and provide community services to an additional 3,000 people who were waiting at home. After that, the state agreed to move people off the list “at a reasonable pace.”
Yet today, most developmentally disabled adults in Illinois wait an average of seven years before they are selected for the programs created to serve them, programs which are supposed to include housing for small and large groups, day programs in the community, adaptive equipment, and job training.
At a hearing last October, U.S. District Judge Sharon Johnson Coleman said the state was still not complying with the order. As a result, she said people have “suffered substantially,” and called the current situation “for lack of a better phrase, messed up.”
But this was not the first time that a court had admonished IDHS for lack of progress in this area. Fifteen years ago, a federal lawsuit charged that the department had failed to provide adequate community and home-based services to those who wanted them. The lawsuit alleged that IDHS used an “antiquated system of serving people with developmental disabilities that relies heavily on large public and private institutions.” The lawsuit estimated that 6,250 people lived in these larger institutions, which it described as “segregated and isolated from the rest of society,” where the residents are denied “experiencing the dignity and freedom of living in the community as normally as possible.”
“The truth of the matter is, we’re in the midst of a crisis,” Rebecca Clark, CEO of the Anixter Center, which provides day programming, residential group homes, and other services for people with disabilities told the Chicago Tribune. “Keeping people engaged in programs is so critical because it allows them to continue to move forward toward their independence and meaningful lives and potentially job experiences.”
IDHS acknowledges that more needs to be done. In a letter to CapitolFax.com, the agency wrote: “IDHS exists to support individuals with developmental disabilities and their families who are striving for independence, integration and inclusion in our society. We have made strides in the last year, but far too many individuals with disabilities who ‘age out’ of the school system are waiting for appropriate services because these services were neglected and hollowed out for years. Too many parents are still struggling to help support their adult children with complex needs.”