Illinois ‘unlawful’ underfunding leaves thousands with developmental disabilities waiting in line for services

Illinois Capitol News

SPRINGFIELD, Ill. (NEXSTAR) — Nestled between a thicket of trees in a small alcove just off the edge of Lake Springfield, dozens of children swing on a playground, splash in an indoor pool, and eat their lunch inside a quiet compound that serves as their schoolyard and, for some, their home away from home.

There are no school bells to signal the start of the day or the end of class. Instead, birds chirp from a distance in the trees surrounding the peaceful 40,000 square foot facility. Many of the walls are painted light blue, accented with calm pastel colors.

“The sensory calm of this place is amazing,” Dawn Williams said.

She left the crowded, noisy atmosphere of a classroom after 32 years to teach at the Hope Learning Academy in 2019.

“My heart is in it,” she said.

And for good reason. Her 21-year-old son Michael is preparing to finish his 11th and final year in the school.

“The job program and vocational program here at Hope is setting him up for a job for his future so that when he leaves here, he’s he’s got a plan for his future,” Williams said.

Eleven years ago, that seemed an impossibility.

“When we came here, we were in crisis,” she said. “We could not handle the needs of raising two boys with autism. It was overwhelming.”

A traditional school setting had become too much for 11-year-old Michael to handle.

Williams recalled one morning when she “literally wrestled him into the van to drive him to school because he wouldn’t get on the transport bus.” She said “he literally kicked out a window in our van and jumped out while I was driving.”

The dangerous episode forced the family to make a difficult decision.

“To have to place [a son] residentially was the hardest decision of our lives for me and my husband,” she said. “It still makes me feel like I’m gonna cry all these years later.”

Now, the things that bring tears to her eyes are her son’s many achievements. When he entered the program, he was nonverbal. Staff who helped enroll him remembered his first day.

“My first impression was, ‘this kid is a challenge,'” Chief Operating Officer Amanda Brott remembered thinking.

“I’m not sure that our clinical skills are good enough to make sure that Michael remains safe and continues to learn,” she said. “I was nervous. He was a impactful child from the beginning.”

A decade later, Michael writes and delivers speeches across Illinois as a global messenger for the Special Olympics. He has learned to cook, is learning how to drive, and is working toward landing a full-time job.

“They got his communication going,” his mother said. “They got his verbal skills to a level I couldn’t even begin to imagine possible. If you ever would meet my son, you’d be amazed. You’d say there’s no way that guy was nonverbal in a behavior challenge, because he’s not anymore.”

Michael is one of 75 students with intellectual or developmental disabilities who live in the residential program at Hope’s facility in Springfield. A total of 130 students attend class there, many of whom are referred to attend from area schools ill-equipped to handle their special needs.

“Our students require a lot of intense and one-on-one and individualized attention,” Brott explained.

Similar community based programs across the state provide daytime services for roughly 20,000 people with disabilities, according to a 2020 letter from the Department of Human Services. About half of them are enlisted in 24-hour services.

Each child has a teacher, and a direct support professional who helps them acclimate to new environments and adjust to a variety of challenges they may encounter throughout the day.

“They are unsung heroes across the board,” Brott said. “Our staff members work 24 hours a day, seven days a week to provide this intensive care to our students at any time.”

Part of their goal is to help children establish routines and gain confidence in completing tasks each day.

“They are helping dress, helping shower, helping feed,” Brott said. “And depending on ability level, helping shopping, and meal planning, and shoe-tying, and buttoning shirts, and combing hair, and brushing teeth.”

She said staff can also help drive students from their residential homes in the community to school, coordinate with the teacher on homework or skills development, and then assists in teaching the child life skills in the home, from cooking, to setting a sleep schedule, or with managing incontinence throughout the night.

The workload can be a lot to handle, and while the specialized work requires training and state certification, the pay scale hovers above minimum wage. The average direct support professional (DSP) earns $12.43 per hour in Illinois, and the state’s turnover rate is 54.5%, nearly 12% higher than the national average, according to a 2019 National Core Indicators Staff Stability Survey Report.

When teachers or staff leave, the students with disabilities can suffer setbacks in their education.

“Kids with autism are typically very routine based, needing kind of the same thing all the time,” Brott said. “And whenever one person who has been a constant drops away, then it’s a whole new learning pattern. You might see different behavioral episodes. You might see regression in some learning or language whenever those new individuals come into their environment, because they’re not used to it. So they’ve got to develop that relationship, work through all of that, and then they’re there. And then the turnover happens again.”

Illinois is ranked 47th out of 50 states in funding community-based services for people with disabilities. The funding levels are so low, a court monitor has found the state out of compliance with a federal consent decree for five years in a row.

In a scathing rebuke, Judge Sharon Johnson Coleman wrote that the state’s low funding levels resulted in substantial suffering for people with disabilities.

“This Court finds that defendants are not in compliance with the Consent Decree by failing to provide the resources of sufficient quality, scope, and variety based on the ample evidence presented to the Court that individuals protected by the Decree have experienced a reduction of services and have suffered substantially as a result,” Coleman wrote.

“The dire financial situation of the State of Illinois and the attendant competing demands for resources are not lost on the Court,” the judge wrote. “The Court directs the State to devise a plan to address the issues causing the reductions in services and to bring the State into substantial compliance.”

A new rate study compiled by Guidehouse for the Department of Human Services’ Division of Developmental Disabilities recommended raising the average pay scale for direct support professionals up to 150% of the state’s minimum wage “in order for providers to remain competitive in hiring and retaining core direct care staff.”

The study calls for the state to set worker wages “at $22.50/hour in order for provider wage offerings to maintain their value within the broader labor market.”

Josh Evans, the CEO with the Illinois Association of Rehabilitative Facilities (IARF), says low funding levels from the state result in high staff turnover, and contribute to a backlog of nearly 18,000 children and adults with intellectual or developmental disabilities who sit on a waitlist and can’t get the services they need.

“We have thousands of young adults and adults with developmental disabilities that are not getting any services,” Evans said. “Meanwhile, Wisconsin just to the north of us just closed out its waiting list recently.”

The consent decree requires the state to move people off the wait list at a “reasonable pace.”

“We have a legal, ethical and moral obligation to provide for the service and support needs children and adults with developmental disabilities,” Evans said.

In 2019, 53% of new “crisis placements” had waited for services for four years or more, according to the court monitor’s report.

“This two-year rate study was the result of the judge of this particular consent decree essentially saying, ‘state of Illinois defendants, you need to get it together, you need to figure out what the path is to coming back into compliance with the consent decree.’ And so this rate study is the most prominent thing we have, which says, ‘Okay, General Assembly, administration, this is what we need to get back into compliance.'”

Governor Pritzker’s budget proposal would add another $77 million in funding for community based programs, but advocates say that isn’t nearly enough.

IARF brochures describe the state’s current funding levels as “unlawful,” and call on the state legislature to spend another $329 million on community based services for people with disabilities in this upcoming budget.

In addition to the longstanding underfunding issues, Evans says the ‘American Rescue Plan’ provides a unique incentive to help the state capture more federal funding for their services. A federal match program would send Illinois 67 cents for every new dollar the state invests in the program.

Despite Senate President Don Harmon’s suggestion that federal relief funds provide “one-time resources to solve one-time problems,” Evans suggested the legislature could use a portion of the $7.5 billion in federal Coronavirus relief funding from Congress to bolster the service network.

“We would not consider that $7.5 billion to be out of bounds, especially because it can be spent over the next several years to invest in our services and supports,” he said.

If you ask Michael’s mom, she’d tell you the investment made all the difference in her son’s life.

“He’s very verbal, he’s under very good behavior control,” she said. “We can take him anywhere. We can do anything. He’s just amazing, but I think the number one difference is that therapeutic environment. It’s a challenging environment.

“I give a lot of kudos to the workers who work in those group homes, because they’re dealing with all the things that a family is struggling to deal with,” she said.

“Their training and time with those kids is taking care of things that the families can’t do for them themselves, because if we could, we would,” she said.

“We have a lot of families with kids with much more severe needs than my son’s needs were, and I just am amazed when I listen to our staff talk about these kids who need toileting assistance, and self care for medical needs, and the students in wheelchairs, and all these medical and health and emotional things that the students need help with 24/7. Our DSPs are there doing it. Our residential staff is in that trench every single day taking care of those kids.”

Now, she’s right there alongside them, teaching students with disabilities how to overcome life’s most daunting challenges.

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