Fw: Arc Needs Success Stories for ville

[Guest guest]

Arc Needs Success Stories for villeHi all:

Please read 's testimony...it is very powerful!

Great job, !

Please consider answering Tony's request for more stories. Families of

individuals at Mabley and ville are sharing equally compelling stories

about their loved ones and their need to continue to live in the places they

have called home for many years. Betters homes in the community can be provided

for everyone if the appropriate resources are available.

Ellen

Ellen Garber Bronfeld

egskb@...

Arc Needs Success Stories for ville

We need advocates in the Central Illinois area to share their

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Dear Ellen,

Okay folks, I need a few good people to share their

success story at the hearing on Monday night in ville. 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

Partridge provided testimony in Dixon, Monday

night. Here is a copy of her comments to the Commission on Govermental

Forcasting & Accountability.

Thank you for your leadership.

Tony

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

ville 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 ville 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.

Partridge , MS, QSP

Rockford, Illinois

Tony auski

Executive Director

The Arc of Illinois

20901 S. LaGrange Rd. Suite 209

fort, IL 60423

815-464-1832 (OFFICE)

708-828-0188 (CELL)

Tony@...

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