After reading “Suffering in Secret,” by Michael J. Berens and Patricia Callahan, that details horrific abuse and neglect in homes for adults with disabilities, I wanted to hold my developmentally disabled sister close and never let her go. But she’s an adult with her own needs and desires and she pulls away from physical contact. She has her own history of suffering abuse in a state operated developmental center, where she was raised, in isolation from her family, from the age of two years old. I was tremendously moved by this fine article. As a sister/guardian and as an advocate for community living for adults with disabilities, the last thing I want to read about is any of these incidents happening anywhere. I appreciate that this article suggests paths to solutions. I personally support and have encouraged legislators to support the campaign to increase reimbursement rates. Increased training, monitoring, and transparency are also obviously critical factors in solving this very complex issue. Thoughtful action is needed so that more people with disabilities don’t suffer and more families don’t mourn these tragic losses.
There are two important pieces of information missing from this article. One is that thousands of people, including my sister, have a better life in the community than they did in large institutions. The second is that in the list of factors behind the transition to CILA homes, there is no mention of the rampant incidents of abuse and neglect at state operated developmental centers. As a relatively uninformed guardian, I was unaware at first of the gravity of the problems at my sister’s final state operated center, the Howe Center in Tinley Park, which lost its Federal funding because it was decertified and ultimately closed. When I became an employee there, I began to see more and more reasons why I should find my sister a better home. I was the chair of the Human Rights Committee at Howe for years and learned of incidents every bit as terrible as the ones reported in this article. My sister, who is a gentle soul, was routinely exposed to individuals with dangerous behavior. She had unexplained injuries and botched medical care. There were unexplained deaths in the facility. There were cover-ups.
People with disabilities and their families are caught in the middle in this crisis. We want the best for our loved ones. In spite of all I knew, I feared that community living would be worse. I have learned that my sister could have (and does!) a life surrounded by kindness and the level of independence she wants in her CILA home. She has her own room and she loves it. She gets better medical care, better food, and more personal attention and respect.
I sincerely hope that everyone who reads this article understands that abuse and neglect are reasons to properly fund and to improve community services, not to abandon them!
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423