Okay folks, I need a few good people to share their success story at the hearing on Monday night in Jacksonville. Let me know if you can and we will provide you with assistance in crafting your comments. You do not have to be the expert on rebalancing the system just be willing to share your story. I can also use written comments as well. Here is a link to provide your written comments: http://www.ilga.gov/commission/cgfa2006/Upload/FacClosPublicComments.html
Wendy Partridge provided testimony in Dixon, Monday night. Here is a copy of her comments to the Commission on Govermental Forcasting & Accountability.
Thank you Wendy for your leadership.
Dear Hearing Committee,
On behalf of families in Illinois who are successfully supporting people with disabilities in their home communities, I ask you and other legislators to move forward with the closure of both Mabley and Jacksonville Developmental Centers. Additionally, I ask that same funding follows these residents into the community where it is desperately needed for their success. Third, there will be a temporary need for additional funds during the closure transition so that communities, agencies and families can begin to prepare. Please support additional appropriations to assure a successful transition.
Every day of my life is centered around thinking, planning, supporting, developing, creating and pushing so my 17 year old son with autism will never have to live in a place like Jacksonville or Mabley. My son has been in situations where expectations were low, and medication, isolation and restraint were high . As a result of such an environment he responded horribly. Hitting, kicking, falling to the floor, biting others, running away and screaming, were all daily occurrences. AT 6 ft 4 and nearly 300 pounds – each day I was stretched beyond my limits. Then, I decided that expecting him to be behave in an “unhealthy” environment was analogous to telling a battered woman she could not leave until she learned to cope with her current situation. So, we did everything humanly possible to change and demand others around him change too. We had no funding and essentially were in a war against time and energy.
Specifically, I decided we needed to expand his communication support, raise expectations for reading, chores, and interaction with others. This didn’t happen quickly or easily. Unspeakable sacrifices were made by my husband and younger son. But, I knew we were doing the right thing. Many loving people responded to my plea with “treatment” that really mattered such as communication supports, higher expectations (not lower!) exercise, better nutrition, massage and music therapy. We also formed a microboard, a small, formalized, circle of support that connects him to people he cares about in ordinary ways.
Our son was on the fast track to an SODC. But, because of our changes, he has changed. Our son still has classic autism, he is still nonspeaking and has difficulty finding the right words. His anxiety and frustration still swing out of control throughout the week. But now, in part because of community funding at the rate of about $20,000 (and saving taxpayers 160,000) he swims, bikes, goes to movies, texts friends, homecoming, sporting events, is in a youth group, volunteers at various opportunities, cares for his dog, puts dishes away, and uses the internet with ease. What changed? We did. Our supports, expectations and environment changed and then he in turn, began to develop, grow and mature. Asking someone with a disability to thrive in an environment where there are no opportunities to make your own meals, move throughout some or most of the day at your own pace, have relationships with people that aren’t constantly coming and going and take medication that is designed to dull will never result in freedom and dignity out in the community.
I felt it was my obligation to share our story today so that others may think a little differently about “residents” and their value as human beings. We are grateful for community funding. I know where we would be without it.
I refuse to be ashamed of my son. Even when hateful people say or do things, I remind myself that he is worth more than the inconveniences and misfortunes we sometimes endure.
Some day we will look back and be horrified at how we treated our brothers and sisters with disabilities. Let us take correct action now, and pride in knowing we rolled up our sleeves to do what was right and good.
Wendy Partridge, MS, QSP
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423