Access Living response to Chicago Tribune Group Home Investigation

As a disability rights and services organization working to serve people across the disability spectrum, Access Living was appalled to learn of the deaths and neglect of people with developmental disabilities living in Community Integrated Living Arrangements (CILAs). We believe that the recent Chicago Tribune investigation of abuse and cover-up in these settings should serve as another wake up call to Illinois leadership to focus, with a sense of urgency, on solutions that permit real people with disabilities who want to live in the community to do so with appropriate and meaningful support.

Access Living has long worked to educate policy makers about the need to enforce the rights of people with disabilities under Olmstead. In 1999, the U.S. Supreme Court ruled in L.C and E.W. vs. Olmstead that the unnecessary institutionalization of people with disabilities is discrimination. The case centered around two women with disabilities in Georgia who fought for their right to receive the supports they need to live in their own homes instead of a segregated institution. The Olmstead decision opened the door to community inclusion and choice for thousands of people with disabilities across the country, but Illinois initially failed to follow the court’s mandate. While leadership in other states completely phased out large antiquated institutions and set up systems of care based upon the individual and specific needs of people with disabilities, Illinois didn’t make meaningful progress until compelled to by a series of class action cases targeting Illinois’ failure to implement Olmstead.

Though people with disabilities in Illinois now have more opportunity to exercise their right to live in the community, the Tribune story makes it clear that Illinois must do a better job to support people with disabilities in community-based settings. Governor Rauner’s veto and the Illinois Legislature’s failure to override the veto of a bill to raise the wage of Direct Support Professionals to $15 an hour is an important example of a missed opportunity to improve supports. Passage of the legislation would strengthen and better maintain the pool of workers that support people with disabilities in the community, including as they live independently. Illinois’ has also continued to rely on archaic institutions that segregate people with disabilities and drain critical resources from the community and has a Prioritization of Urgency of Need System (PUNS) waiting list that includes nearly 20,000 people with disabilities waiting for community-based services.

All people with disabilities, no matter the type or severity, benefit from community placements compared to institutional placements, which rob people with disabilities of basic freedoms and rob communities of diversity. Community placement makes economic sense, saving Illinois tens of thousands of dollars per person every year compared to institutional placement.

In the face of the tragic revelations investigated and reported by the Chicago Tribune, Illinois must not revert back to a reliance on institutional care, where there is a long history of deaths that result from abuse and mismanagement. Illinois must reinvest in its commitment to community integration and choice for people with disabilities. Reliance on cookie cutter placements lead to failure and tragedy. Illinois must work with community advocates and organizations to ensure that all people moving into the community and currently in the community have the resources to develop plans that allow individuals to be truly independent in a variety of placements, including their own individual homes and apartments. Access Living is committed to remaining a partner in this work.

Gary Arnold
Public Affairs Manager