Families plead for more residential care options for children with severe developmental disabilities

Parents desperate for help caring for and educating children with severe mental illness or other forms of developmental disabilities gathered Tuesday to demand an overhaul in the way the Illinois State Board of Education handles such cases.

Peter Jaswilko was one of those parents. He has no drywall left in his house.

His son, Kyle, 15, who is autistic and prone to violent bouts of aggression, demolished the interior of their northwest suburban Lake in the Hills home and regularly turns his aggression on his father and others in his life.

“I have been hospitalized numerous times with injuries. Just last week, I had a concussion. I was knocked out ... he continued kicking me while I was out,” Jaswilko said.

“Residential placement is our only option,” he said of his son’s need for round-the-clock care at a facility that can handle him. The local school district agreed, he said.

Jaswilko applied to all the places on the state board’s list of facilities that had been vetted and approved. Each application was rejected. They weren’t equipped; his son’s needs were too great, they said.

Jaswilko found a place in New York, but it’s not on the board’s list so the state won’t reimburse Jaswilko’s local school district for the out-of-state placement.

He’s seeking emergency relief from the state. If that doesn’t work, he’ll take his case to federal court.

Jaswilko shared his story Tuesday at the downtown law offices of Matt Cohen, who specializes in such cases.

He was joined by other parents who are at or nearing a breaking point as they struggle to get their kids the care they need and change a state system they say is broken.

Overly restrictive and burdensome rules on approving out-of-state care facilities are partially to blame, Cohen said. As a result, many facilities in other states don’t want to work with Illinois.

ISBE hasn’t been proactive enough about countering a shortage in residential care facilities with therapeutic day schools that are available to Illinois residents, Cohen said.

The process has been difficult for years, but staffing issues at care facilities brought on by the pandemic have created a “perfect storm” of obstacles that’s left hundreds of Illinois families in crisis mode, he said.

The out-of-pocket cost of care is prohibitive for most families, he said.

Jackie Matthews, a spokeswoman for the state board of education, said the board is aware of the placement issues.

“We are working diligently to find solutions to expand the number of residential placements available for students in need in Illinois. We recognize this is an incredibly difficult time for these families,” Matthews said in an email.

Matthews said ISBE has contacted residential providers in Illinois and across the country about applying to increase the number of approved providers.

Jaswilko hopes the issue is resolved soon.

The facility in New York that’s agreed to take his son said the teen could arrive as soon as Jan. 16.

But Jaswilko, a professor at Triton College, worries the spot will go to someone else if the board doesn’t agree to cover the cost.

“Till someone takes action and approves more schools, kids like Kyle will suffer, and families as well,” he said, noting his daughter is living with his parents because the situation has caused her so much anxiety.