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McHenry County families struggle to find disability services

Published: Thursday, Aug. 28, 2014 11:54 p.m. CDT • Updated: Friday, Aug. 29, 2014 12:30 a.m. CDT
Caption
(Kyle Grillot – kgrillot@shawmedia.com)
Dianne Diana tends to the needs of her son Andrew, who has severe autism and a seizure disorder, during dinner Wednesday with her family, including son Kenny (left) and husband Ken in their Crystal Lake home. Like a lot of Illinois families with children with intellectual and developmental disabilities, the Dianas have had trouble finding services for their son, Andrew, who they had to send to Kansas City for school because they couldn't get the services he needs here. The Pioneer Center is trying to get Andrew into one of its in-the-works group homes now that he has aged out of the school he went to in Kansas City.

CRYSTAL LAKE – Even a trip to the grocery store can be difficult for the Diana family.

Andrew Diana moved back to his parents’ house in Crystal Lake three weeks ago after aging out of Heartspring, a center for children and young adults with special needs in Wichita, Kansas.

The 22-year-old’s diagnosis of severe autism and a seizure disorder means that he requires 24-hour care, and so his mother, Dianne, has taken a leave from her job to care from him.

“To put it in perspective, he’s like a 2-year-old in a 22-year-old’s body,” said his older brother, named Kenneth after his father. “It’s like when you see a kid at a checkout register ask for candy and they don’t get it and they scream until they get it. In essence, that’s the kind of behavior you see, but in an adult’s body. It’s very unusual from an outsider’s perspective, and we’ve had to deal with that countless times.”

The hope is that Dianne can go back to work once Andrew’s placement at a group home comes through, but lots of people across McHenry County are waiting for a spot.

The waiting list for residential services of the kind Andrew needs has 387 names on it, according to the Crystal Lake-based nonprofit Options and Advocacy. Another 174 people need residential services, but without the 24-hour care.

About 10 people are moved off those lists each year, Options and Advocacy Executive Director Cindy Sullivan said.

“We have all these needs, and we’re not able to even come close to meeting them,” she said. “We try to do the best we can. We try to provide as much support to our families as we can. We try to secure all the funding from the state that we can. And it’s not easy to tell a family that we couldn’t, but it’s not for a lack of trying.”

The state of Illinois ranked among the bottom 10 in a study recently released by United Cerebral Palsy. It has consistently remained at the bottom since 2007.

The report looks at the services people with intellectual and developmental disabilities – people like Andrew Diana – receive and judges the quality and inclusive nature of them. It places a large emphasis on getting people with disabilities out of state-run institutions and into group homes.

McHenry-based Pioneer Center for Human Services has 10 group homes, one of which is for children diagnosed with autism, said its director of intellectual and developmental disability services, Sam Tenuto. The plan is open another home that will house four people in the next couple months.

Tenuto hopes to get Andrew Diana in the next group home the nonprofit develops.

“The [waiting] list is incredible,” he said. “There are so many people looking for support that it’s to the point where if I had 50 percent more homes, ... it would barely make a dent.”

Expanding more quickly just isn’t possible, though, with the group’s fragile finances, Tenuto said. Between the low funding levels from the state’s Department of Human Services – which are always the first item on the chopping block come budget time – and late or inconsistent state payments, it’s hard for Pioneer Center to put together three-year or five-year plans.

It’s even more difficult to provide services for high-need individuals like Andrew Diana who require lower staff-to-client ratios, he said.

The lack of services reached a critical point for Dianne and Kenneth Diana who decided about five years ago to send their son to Heartspring in Wichita.

“We looked all over the country, and we were really hoping for something close by, possibly in Illinois or Wisconsin,” Dianne Diana said. “There just wasn’t anything available that would really meet his needs like Heartspring. Nothing really compared.”

But looking out of state isn’t an option for Andrew’s next stage, she said. In order to receive funding, the group home must be in Andrew’s primary state of residency.

“We hope that he gets into a really good group home, and that he can transition to that and be comfortable and enjoy going out and doing things in the community, going bowling, going to the movies, going to restaurants,” she said.

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