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When Illinois adults with intellectual disabilities seek care, they often wait years.

Opportunity House in Sycamore
Peter Medlin
Opportunity House in Sycamore

School districts provide a range of services to students with intellectual disabilities. WNIJ’s Peter Medlin has part 2 of his 3-part series about what happens when those students become adults and transition into adult life. Listen to part 1 here and part 3 here.

Opportunity House’s massive over-50,000 square foot facility in Sycamore is complete with classrooms, mock apartments, a gymnasium and much more.

They’re a service provider for adults with intellectual & developmental disabilities. They offer day programs, supported employment, and recreation, along with 10 group homes for residential care in DeKalb County, most staffed 24/7. They’re closing an older home soon, but also opening two new ones.

Families of adults with disabilities spend years waiting to be approved for state funding to help pay for services like these.

But it doesn’t end there. If a parent can’t provide quality care at home and they need residential care from a place like Opportunity House, they have to sit on another waitlist.

And Opportunity House’s Johnnisha Harris says families usually have to wait a really long time.

“We rarely get openings, maybe one every couple of years,” she said. “Our waitlist is about seven to eight years long right now.”

Tom Matya is the executive director of Opportunity House. He says they could probably open four or five more group homes, given the need, but it all comes down to staffing. Hiring has been a challenge for their new group home too.

“We will not open," said Matya, "until I have it fully staffed."

He says they have about 15 openings right now, which is half of what it was last year, but it’s still too high. Staffing is their biggest issue, by far. And the reason is, in some ways, simple.

“85% of my staff could go out and get paid more, doing something else,” he said. “But they don't, because they believe in the mission.”

The toughest positions to fill are Direct Support Professionals(DSPs) who work directly with people with disabilities. That’s because agencies -- like Opportunity House -- who contract with the state can only use state funding to pay those salaries. So, the state, essentially, dictates the wages and if they get a raise.

“On average, our DSPs when you look at our starting wage is like $16 an hour,” said Matya.

Supporting adults with intellectual disabilities can be really tough. So, when you can make just as much or more at Starbucks, he says, it’s a difficult sell.

This is not just an Illinois problem, though. Lydia Dawson is VP of Government Relations for ANCOR-- a national community of providers for people with disabilities. They also help put out several reports about access to services.

“In 2023," she said, "we saw 95% of providers experiencing moderate to severe staffing shortages in the past year."

The vast majority had to turn away new referrals because of staffing shortages.

It’s a vicious cycle that leads to high turnover rates for Direct Support Professionals, which then impacts quality of care. Nationwide, the DSP turnover rate is around 50%.

Matya says it’s a little better at Opportunity House. But he says they’re continuing to advocate for pay increases for DSPs.

“I think there was a stretch of six consecutive years," he said, "where there were no increases given."

That changed during the Pritzker administration. There have been increases, but Matya says it’s hard when there’s also a corresponding rise in the state minimum wage. He says they want DSPs to make at least 150% of minimum wage, so they can compete in the job market.

But they’re not there yet. And the governor’s proposed budget didn’t include an increase. There are billsin both chambers of the Illinois state legislature that would give those workers a $3-per-hour boost, but the session adjourns on May 24th.

Back in Sycamore, Matya says Opportunity House’s location in northern Illinois -- west of the Chicago suburbs — also puts them in a bind.

“Three years ago, the legislature approved incremental funding for Chicago and the collar counties,” he said. “So, for example, you can be a DSP 30 miles east of us and you're gonna get paid $2.50 or $3 more an hour than we can pay here.”

Many other states have closed or downsized state-run institutions. In Illinois, investigationshave uncovered abuse and neglect, but they haven’t closed in favor of community-based groups like Opportunity House.

In the meantime, waitlists for services aren’t going anywhere. There are still thousands waiting for services in Illinois.

Matya says not a week goes by that they don’t get requests from elsewhere in the state saying they’ve got someone who’d be a great fit for their group homes, but they just don’t have room.

And if someone local desperately needs a spot and they don’t have the space, they could be shipped off away from family and friends.

He and other advocates hope continued state investment will improve the system for DSPs and, most importantly, the adults with disabilities they care for.

Peter joins WNIJ as a graduate of North Central College. He is a native of Sandwich, Illinois.