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March 28, 2014

Increasing autism rates and rising mental health issues among children are causing a spike in the number of public school students attending residential treatment centers, boarding schools that combine education with intense therapy.

Many parents say these schools have performed wonders for their children, helping them back from the brink of dysfunction, despair, even suicide. But the high cost and soaring need have prompted some experts to warn that the service could be in jeopardy.

In Illinois, the state has informed local school districts, which pay much of the tab for their students’ stays, that demand for the boarding schools has outrun the money set aside to pay for them. That means districts will have to bear extra costs themselves — costs that can amount to hundreds of thousands of dollars a year.

School officials say finances will not influence their decisions on whether to send children to residential facilities, but some observers are skeptical.

“All this is going to do is lead to more litigation,” said Micki Moran, a special education lawyer. “Parents will need to sue the district, and more importantly, kids will have even longer delays in accessing needed treatment.”

Therapeutic boarding schools have been around for decades, designed for children whose needs are so immense that they pose a danger to themselves or others. The schools are paid to educate and treat young people in a setting that controls everything from students’ leisure activities to the time they go to bed.

Michael Resko’s parents decided he needed that structure during his freshman year of high school, when the depression that had haunted him since he was 5 became intolerable. He found a spot at the Sonia Shankman Orthogenic School, a therapeutic residential school on the campus of the University of Chicago.

“I felt like I belonged,” said Resko, now 20. “I started to laugh and developed some interests. It’s where I got my first taste of happiness. I learned I can enjoy those feelings … and endure the bad ones.”

Such comprehensive, long-term services aren’t cheap — Resko’s yearlong stay cost his school district, the state of Illinois and the federal government more than $100,000 — but school districts are mandated by federal law to provide a free and appropriate education to students with disabilities regardless of the cost.

Critics, though, say public agencies often throw up roadblocks that keep children out.

“We’ve literally had parents show up on our doorstep,” said Diana Kon, co-director of the Orthogenic School. “Their child has had seven or eight hospitalizations, and they don’t know what else to do.”

One frequently cited problem is the diminishment of the individual care grant, a subsidy administered by the Illinois Department of Human Services. The grants were once a common way to pay for therapeutic boarding schools, but in recent years they have all but disappeared.

According to DHS figures, the agency in 2006 awarded 114 individual care grants. Last year, it approved 19.

“I haven’t seen (one of the grants) come through in the last few years,” said Gineen O’Neil of the Southwest Cook County Cooperative Association for Special Education.

A DHS spokeswoman said fewer young people are meeting the grant’s strict eligibility guidelines, though those standards are now under review.

While the grants have evaporated, demand for therapeutic boarding schools has shot up. Five years ago, according to the Illinois State Board of Education, 156 districts sent 326 children to the schools. Last year, 200 districts sent 482 children.

“I think what we’re seeing is an uptick in students with social-emotional needs — kids who are so depressed and anxious they can’t make it to school,” said Ellen Ambuehl, director of special education for New Trier Township High School District 203 in Winnetka, Ill., which last year sent seven students to residential schools.

Special education attorney Brooke Whitted said children appear to be getting sicker and sicker at younger ages.

“Populations have changed, families have deteriorated, autism is up, and it’s not just increased diagnosis; every other kid we see is autistic,” he said.

Traditionally, districts have paid most of the tuition cost for their students, with the state chipping in the rest. Federal money, channeled through the Illinois State Board of Education, covered room and board.

But the federal contribution has not kept pace with the number of youngsters who need the service. ISBE recently informed school districts that only about 60 percent of the room and board expense will be covered this year. The districts will have to make up the rest.

That can be a substantial sum: Last year, students from Evanston Township High School in Evanston, Ill. had room and board costs of $1.5 million, the second-highest total in the state.

Maria Smith, Evanston’s director of special education, said losing a chunk of that reimbursement will hurt, but it won’t affect the district’s willingness to send a child to a residential school.

“We have not based our decisions for kids on finances,” she said. “We look at what’s appropriate and make do.”

Naperville District 203 in Naperville, Ill., which saw room and board costs of nearly $1 million in 2013, is aiming to keep more children at home by expanding its services for autism, said Associate Superintendent Kate Foley.

“The more you’re equipped in-house, the less you have to send someone out of district,” she said. “And those (in-district services) are not just for financial reasons, they’re for the right reasons.”

Other districts contacted by the Tribune gave similar assurances, but some advocates say boarding school requests are rarely approved without a fight. As resources shrink, they expect those fights to get even more contentious.

“The battles will become difficult, and we’ll probably see stories about tragic outcomes,” said Susan Resko, vice president at Chicago’s Depression and Bipolar Support Alliance and Michael Resko’s mother. “Any number of things can happen when people are not treated for their mental health, and bad outcomes can come from that — increased substance abuse, increased incarcerations, increased suicides, hurting other people. I don’t want it to get to that point.”

She and other advocates say spending the money for residential care can turn lives around, as it did for Kevin Gump.

Diagnosed with Asperger’s syndrome, a condition on the autism spectrum, he was so full of rage as a young child that he sometimes punched holes in the walls of his family’s home. At school, his first-grade teacher had to convert a janitor’s closet into a “timeout” room just for him.

Kevin’s mother, Kathleen Gump, said the state twice denied him an individual care grant. Instead, he spent two years at the Rush Day School on the campus of the Chicago medical center, until Kathleen Gump hired a lawyer and pushed her local school district to pay for a therapeutic boarding school.

Administrators approved the placement, and in 2005, Kathleen Gump took her son to the Oconomowoc Developmental Training Center — now called the Genesee Lake School — in suburban Milwaukee.

“As difficult as he was, I was still heartbroken,” the Berwyn, Ill. woman recalled. “I will never forget the feeling of driving away and leaving a 9-year-old two hours away.”

With two years of intense therapy, Kevin learned to contain his anger. He moved on to therapeutic day schools and in August started going part time to a local high school. It was the first time in 12 years he had been with his hometown classmates.

Kevin, now 18, is due to graduate in June. His mother said that while she doesn’t want to get too optimistic, he is holding steady.

As for Michael Resko, he is now a sophomore at Wittenberg University in Springfield, Ohio, where he is majoring in history with the goal of becoming a teacher. Had he not been able to spend a year at the Orthogenic school, he said, his life probably would have played out much differently.

“I don’t know where I’d be right now … certainly not at college,” he said. “I’d probably be at home in some minimum-wage job … and I’d be upset because I’d know that, with the right help, I could have done better.” 


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