Today I’m in Chicago for a meeting with our new Exec Meg Cooch and the Director of the Illinois Council on Developmental Disabilities Kimberly Mercer-Schleider!
Tomorrow we meet with our good friend Marco McCottry, Uber General Manager.
We are delighted to let you know about two new staff joining The Arc Team!
Olivia Sanchez is our new Outreach Coordinator for The Arc’s Life Span program. Olivia speaks fluent Spanish and will work closely with the Hispanic community. Ashley Farland is our new Family to Family Health Information Center Outreach Coordinator.
Here is the letter to the editor that Katherine submitted in response to last Friday’s “Suffering in Silence” story.
Letter to the Chicago Tribune:
As the sister of a woman with profound intellectual and developmental disabilities who lives in a CILA home, I thank you for running this series of articles about abuse and neglect in CILA homes for adults with intellectual/developmental disabilities (“Suffering in Secret” by Michael J. Berens and Patricia Callahan). Attention to these issues can only be a plus, especially if it leads to positive change. But the third article in the series about the “rush” to close institutions has gaps in reporting that make it lopsided at best.
Where is the data about people who are doing well living in the community after leaving institutions? Many people with ID/DD are well able to express for themselves why they would never go back to the institutions they left. Where is the data that compares people who left the Jacksonville Developmental Center with those who stayed in institutions during the same time period?
Underfunding is a huge issue in community services. Improperly trained staff, staff turnover, and poor oversight are also well documented problems. Yet, in spite of Illinois spending over $400 million dollars a year (or $258,000.00 per person), on institutional care, money spent on institutions where staff are extensively trained, well paid and have great benefits, money spent on institutions where doctors and nurses are right on campus, there are a surprising number of hospital and ER visits, unexplained injuries, unexplained deaths, allegations of abuse and neglect, etc. etc. happening every year in state operated developmental centers (and ICF’s).
My sister lived in state institutions for 63 years and is now thriving in a CILA home for the last 9 years. Her experience and mine as a longtime volunteer at a state operated center where I later worked as a state employee for 11 years has convinced me that the problem with institutions is not “size” as several people quoted in the article state so maddeningly. The biggest negative of institutional living is a long established (for generations) culture that is overwhelmingly geared to the people who work at the state operated developmental centers, not those who have to live there.
Theft was such a massive problem where I worked that it was largely unaddressed. Investigations were run by staff at the center who were friends (and even relatives) of the staff who were the subject of allegations. The vast majority of staff who left cited co-workers as the biggest problem, not the difficulty of their job. Cliques of workers protected each other. If you weren’t in a clique you were not welcome.
Families are caught in the middle. We cling to institutional care because we are afraid the alternatives might be worse and all of us know someone who has experienced this. It’s familiar and seems less risky for our loved ones than life out in the world. Thousands of people on waiting lists and their families do not want institutional care. Younger families whose loved ones have always lived at home worry that even CILAs are too restrictive. Institutions are a desperate stopgap measure, not a life. It is incredible that in Illinois this is still a debate!
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423