Day program’s closing like a gut punch to family of autistic man
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Rick Bruno was in another room last fall when his wife Jean shrieked “Oh, my God, no” in a way that led him to think there must have been a death in the family.
Instead, Jean had just opened a letter from Easterseals informing them that the agency would soon be closing the program that for the past decade has been a lifeline for their autistic 32-year-old son Danny.
“It was like getting punched in the gut,” said Bruno, 62, a retired Tinley Park police officer who now works stadium security part-time.
The closing becomes final on Wednesday, when Easterseals finishes winding down two adult day programs that previously served 44 individuals with developmental disabilities.
The day programs — one in Chicago and the other in Tinley Park — have provided an intimate, structured environment in a school-like setting for adults 22 and over who face a variety of intellectual challenges.
Easterseals says it could no longer afford to operate the programs because of the low reimbursement rate paid by the state of Illinois, which has resulted in a statewide shortage of frontline caregivers to staff such facilities.
For the Brunos, the closing of the Tinley Park program set off a desperate search for another that can fill the special needs of their son. So far, they haven’t found anything.
“There are no guarantees. That’s the scary part,” said Rick Bruno.
Four programs have already rejected Danny for various reasons ranging from not having any openings to not being able to handle some of his behaviors. Two others remain a possibility.
Bruno said Danny has normal to above-normal intelligence but suffers from a communications disorder. His vocabulary is extremely limited, and his social skills are lacking.
“He sees the world differently than we do,” Bruno said.
Danny likes cartoons, coloring, root beer, pizza and laminating, dad reports. He has his own laminating machine.
Danny is most comfortable in orange clothing and not at all comfortable in long pants. He reported to Easterseals on Monday, as most days, in gym shorts.
Like many autistic individuals, Danny is very routine-oriented. The first thing he does upon arrival each weekday morning is to write out a schedule for the day. He attended school for eight years in the same Tinley Park facility before transitioning to the adult program.
That’s why his parents are particularly concerned how he will deal with the coming upheaval and have tried to prepare him for it.
He has responded by drawing up a list of what seem like counter-demands. “No Camp, No Airplane, No Walt Disney World, No Dentist” were on the list he drew up Monday morning when he encountered his father at school at a time when he wouldn’t normally be there. At home, he has laminated various versions of this list.
Danny’s penmanship, using printed block letters, is meticulously perfect, almost like a stencil, although he writes quickly.
The Brunos are grateful to Easterseals for everything it has done for Danny, especially to the low-paid staffers who operate the day program and work directly with the people with disabilities.
“These people are incredibly important to a disabled person’s life and potential,” Bruno said.
But those jobs are difficult and poorly compensated, in many cases paying less than fast food establishments.
The result is that agencies that provide services to the developmentally disabled say they are facing a worker shortage crisis. In Easterseals’ case, the shortage caused programs to be closed on numerous occasions with just a few hours notice when too many employees called in sick.
Bruno blames state government.
“This program wouldn’t be dying if not for the lack of attention and funding from the state,” he said.
Illinois boosted the reimbursement rate by 75 cents an hour last year, but advocates for the developmentally disabled say it’s not enough and are pushing for more.
Bruno said his message is: “Don’t let this happen again. These programs are way too important to close. Each one is precious.”