I am an optimist at heart and see the potential in everyone, which is why I chose a career in The Arc.
With the closing of Howe and Jacksonville Developmental Centers, we at The Arc have had the opportunity to meet with many people who have transitioned to community living and their families as well. Many opponents to the closings have said their challenges and medical issues prohibit them from living in the community. I don’t think so! It is inspiring to see the dramatic changes in the people’s everyday lives. Some people are working, most have their own bedrooms; they get to choose what they eat and much more. Now, to some this may not seem a big deal but for those who are now moving out of institutions as a result of Governor Quinn’s Rebalancing Initiative, their entire world has changed and it has changed for the better.
At times I find myself getting angry at a system that locked away these same individuals for countless years in state institutions. It is not unusual to hear of someone being institutionalized for twenty or thirty years, lost years, precious years gone forever. I constantly ask myself how could a system fail so many people with intellectual and other developmental disabilities. Shame on us.
Last week I visited the Murray Developmental Center in Centralia. Murray is about to close. Evaluations are being done on the people living there, there is a lot of activity with the guardians and some individuals are moving out as early as next week. All of this is very good.
What is not so good is life at Murray. That is not to say that good things are not happening. There is dedicated staff at Murray and loving families that want what is best for their family members.
But the fact is that institutional living is not a home. It can never be a home. It is not the full life in the community that everyone deserves, including the people living at Murray.
In my visit I met a lot of people and, in particular, there was a group of young men who were eager to talk to me. They didn’t even know me. These guys spend their day in classes at the center. They attend living skills and other classes. Others spend their days at the local workshop and return to the center. I did see staff walking hand in hand with people who required one-on-one staffing. I also visited the site where everyone there required nursing care and staff was abundant. Everything revolves around the center.
But Murray is an institution that resembles a hospital built in the 1960’s. Everyone eats the same meals. Everyone goes to bed at the same time. Everyone watches the same TV shows. Everything is regimented, similar to a nursing home. A state institution, by its very nature, does not allow for individualization. People do not choose who they live with. They do not get to choose what they eat. The very environment must be extremely disturbing to anyone in the autism spectrum or with sensory issues. It was disturbing to me.
Institutional living needs to be eliminated from the disability system in Illinois. The rebalancing initiative is a major step in that direction. Rebalancing is turning our disability system upside down with person-centered planning, community living and people making choices about how they want to live their lives. There are now tremendous opportunities available for the individuals at Murray. These opportunities have never been offered before rebalancing in Illinois. It is my hope that the guardians take full advantage of the opportunities being offered. Murray is going to close.
At the end of my visit, I met a gentleman in a wheelchair who had an electronic device to help him communicate. I introduced myself to him and he told me that he liked me. Communication can be slow, but I was able to determine that he was a Cardinal fan, not a Cubs fan! He laughed at me when I said I was a Sox fan! He has a million dollar smile. He reminded me of a very good friend who escaped from an institution many years ago and ended up owning her own home.
This gentleman deserves better. They all deserve better.
Special thanks to Director Casey and the administration at Murray Developmental Center for making arrangements for my visit and for their valiant advocacy on the behalf of the individuals at Murray who they serve.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423