Even with a court order, families struggle to find services for developmentally disabled adults: ‘We have great programs, you just can’t get into them.’ – By Marie Fazio (Chicago Tribune) / Jan 8 2020
Charlene Synoga has spent the past year searching in vain for someone to help her 23-year-old son Jason.
Nonverbal and on the severe end of the autism spectrum, Jason needs to be bathed, dressed, fed and constantly supervised. But Synoga wants more for her son. She wants him to learn “everyday skills” — washing the dishes, grooming himself, crossing the street, going to the grocery store — and is hoping to find a day program that will teach him.
So far, she said she has been rejected by 12 programs. After she thought she finally found one, she said she then realized the provider was woefully understaffed: Two staff members working with 11 young adults with severe disabilities confined to a classroom.
“I want my son to be able to get back to his routine,” Synoga said. “His whole life has changed so much, he’s miserable. … It’s so hard because this isn’t fair to him. He could still be learning things.”
Some of his medical conditions, including thyroid disease and severe psoriasis, have worsened recently, and she blames the stress he has been under since he finished school last year. Frustrated at being cooped up, he often hands her his coat over and over until she takes him for a drive around the neighborhood. Sometimes he hits himself on the head repeatedly or tries to run away. He has gained a lot of weight.
“You can see the boredom in his eyes,” she said.
Nearly 20,000 people with disabilities in Illinois are on a waiting list to receive state aid after they age out of the state’s public education system, the Tribune reported last month. Most wait years before they are selected.
While the state is working to reduce the wait time by making funding more readily available, many people are still being left in limbo. Once they are off the list, some like Jason, are being turned away by programs that don’t have enough room or staff to handle their needs.
Continue to article: https://www.chicagotribune.com/news/breaking/ct-wait-list-adults-developmental-disabilities-20200108-x2ohtgowfndtzl4cvxrxzo5zqu-story.html
Charlene Synoga and her son Jason in their Chicago home on Dec. 19, 2019. (Zbigniew Bzdak / Chicago Tribune)
