Sunday, May 26, 2013

Human potential wasted when people merely ‘exist’ in Illinois institutions : My View By Tony Paulauski

as published in the Rockford Register Star...

The rebalancing of the developmental disability system will forever change the lives of people with disabilities in Illinois. It’s a life enhancing process that offers promise, freedom and opportunity.

One that will allow even those with the most severe disabilities, like Margaret who spent 50-years at the Howe Developmental Center, to become a neighbor, friend and roommate. Or like David, who recently moved from the Jacksonville Developmental Center, to work at a carwash.

Thanks to Gov. Pat Quinn’s Rebalancing Initiative and support from disability champions in the General Assembly, people with disabilities are being offered the opportunity to achieve their full potential by putting state resources behind transitioning them into a community of choice.

Our policy makers have learned from the success of 14-other states that have closed state institutions. While taxpayers save money with community programs verses keeping antiquated institutions in operation, it’s not about money. It’s a matter of civil rights and providing people with disabilities the opportunity for full inclusion.

I had the privilege to meet several of the residents of the Murray Developmental Center during my trip to Centralia earlier this month. This was not my first visit to a state institution but I thought it was important that I saw for myself what I have heard so many times. People don’t’ “live” in Murray, they “exist”.
I saw people wondering aimlessly down the hollow hallways and others sitting around staring into space. There was no laughter and little activity, mostly wasted potential. I left there with a heavy heart knowing that these residents deserve more.

I had great conversations with a couple of the Murray residents and couldn’t help but think, why are you here? Then there were those who had severe disabilities and at first glance you might not think he could ever survive let alone flourish in the community.
That’s the best part about the rebalancing initiative; it truly is for everyone because each move is planned and customized to meet individual needs. Whether it’s 24-hour care, handicap accessibility or mobility equipment, community living is possible for everyone.

I also know that some of the residents are scared. The Murray Parents Association is intimidating guardians and self advocates by pressuring them not to participate in the transition process. The fact of the matter is that Murray is going to close and resisting the inevitable is only hurting the residents.

A thoughtful person-centered planning process that looks at the possibilities and evaluates the individual’s needs takes time. Evaluators need to get to know the person, their preferences on how they would like to live. They need time to evaluate medical and behaviorial needs to ensure a healthy and safe transition. Providers need time to hire and train the best staff and to purchase equipment.

Stall tactics allow experts less time to develop a comprehensive person centered plan and the outcome might include multiple moves, relocation outside the area and added stress. There is no downside to going through the person-centered process and evaluation because the individual can opt out at anytime.

I understand that change is sometimes scary but rest assured, you are not alone. We have helped families’ transition from the Jacksonville Developmental Center and we are here for Murray families as well. I truly hope that Murray residents see the rebalancing initiative as an opportunity and allow us the privilege of helping them to realize their full potential.

To learn more about the Going Home Campaign, to connect with our team or to access our resources visit www.goinghomeillinois.org.

— Tony Paulauski, executive director, The Arc of Illinois, and a member of the Going Home Campaign

Rockford Register Star
Posted May 25, 2013
http://www.rrstar.com/updates/x863233142/My-View-Human-potential-wasted-when-people-merely-exist-in-institutions

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