For kids in crisis in Illinois, there is nowhere to turn for help

Experts say there are no residential facilities available for students requiring intensive mental health or behavioral support as needs surge.

Jamie Cullen and her son Luke, who has autism. She struggled for months to find residential treatment for Luke, whose aggressive behaviors have gotten worse during the pandemic. Courtesy of Jamie Cullen / WBEZ
Jamie Cullen and her son Luke, who has autism. She struggled for months to find residential treatment for Luke, whose aggressive behaviors have gotten worse during the pandemic. Courtesy of Jamie Cullen / WBEZ

For kids in crisis in Illinois, there is nowhere to turn for help

Experts say there are no residential facilities available for students requiring intensive mental health or behavioral support as needs surge.

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Peter Jaswilko’s son Kyle has autism and long-standing issues with aggression. But starting last year, in the dark days of the pandemic when everything was shut down, the situation turned into “complete chaos,” Jaswilko said.

Kyle, who is 15 and over 6 feet tall, started attacking his father, causing hearing loss and several concussions. At one point, both father and son were admitted to the hospital — Kyle for psychiatric care, Peter with blood dripping from his head. Kyle has punched so many holes in the walls of their home in suburban Lake in the Hills home, Jaswilko said there’s barely any drywall left.

Everyone — from his parents to school district officials to the police who have frequented the home — agree Kyle needs to go to a place that can help him and keep his family safe.

But there’s nowhere for him to go. Kyle is one of many Illinois teens with developmental disabilities, behavior or mental health issues being turned away from residential treatment facilities, experts and state lawmakers say. Finding a spot in these facilities, which is what many of these teens need to be stabilized and attend school, can be difficult under normal circumstances but the pandemic has both exacerbated the needs and created crisis-level shortages.

“This has been a crisis for a long time but COVID just put us into the spotlight,” said state Sen. Laura Fine (D-Glenview) during a hearing last week on this topic where lawmakers demanded the problem be fixed.

“For these kids, we want to know what is happening now,” added Ill. Rep. Deb Conroy (D-Villa Park), chairwoman of the Illinois House Mental Health Committee.

Residential facilities report that they have been hit hard by staff shortages, making them unable to run safely at full capacity. This comes as experts in IIllinois say they are seeing a spike during the pandemic in the number of children threatening self-harm and harm of others. Some, like Kyle, have developmental disabilities and their behavior is more than their families can safely address at home.

The state didn’t supply numbers of families waiting to getting into treatment facilities, but parents, school district officials and experts say there isn’t a single residential facility available that will admit children with the most extreme needs. With many pediatric psychiatric units also full, some children are waiting in hospital emergency rooms for weeks at a time. Others are languishing in juvenile detention centers.

Some are at home with terrified, desperate parents.

“Making the decision to place your child at a residential school is the most difficult decision you have to make,” said Jaswilko. “Once we agreed that this is the only solution at this moment, then we have the disappointment that there’s nothing there. There’s absolutely nothing there.”

Peter Jaswilko has the go-ahead to place his 15-year-old son in a residential treatment facility but none are available. Courtesy of Peter Jaswilko / WBEZ

Other families had their children in a facility but now they’re being discharged.

Elena Drinberg was sent a 30-day notice in October that her son must leave the residential facility in Wisconsin that has been his home for four years. A lawyer helped her to get the facility to extend his stay, but now they are threatening to send him to an emergency room in Illinois and she suspects that once there, they won’t take him back.

She is a single mother with multiple sclerosis and other children in her care. Like Kyle, Drinberg’s son has autism and has been violent at times.

She said she has searched for other places, calling every residential facility on the state-approved list.

“We have not received one positive response,” Drinberg said. “It is very very stressful. Nobody wants to give up on their kids and we are all determined to do whatever it possibly takes in our power to keep our kids safe, but sometimes we are without options.”

Dangerous levels

Advocates, hospitals and mental health experts say the lack of residential facilities for children with severe mental health and behavior needs has reached dangerous levels. It’s hard to know, though, exactly how many children and families are in this predicament. Three state agencies can make placements, as can the hundreds of school districts in Illinois.

Neither the Illinois State Board of Education nor the Illinois Department of Children and Family Services responded to questions about how many children are in residential facilities and how many are waiting. The Illinois Department of Healthcare and Family Services said its program has 120 children in residential placements and about 50 children waiting.

DCFS places foster children in residential facilities, including some children whose parents relinquish custody in a desperate bid to have their children placed in a facility.

The problem is so acute that it caught the attention of state lawmakers, who called the hearing last week.

Rep. Conroy was upset that no state agency directors came to the hearing nor did anyone from the Illinois State Board of Education. If nothing changes, school districts may wind up having to pay for the few very expensive facilities that have space. For one child, this could be as much as $500,000 a year.

Meanwhile, some residential facilities have room for more children, but not enough people to serve them, said Jason Keeler, president and executive director of Allendale, a residential facility in the northern suburbs. Keeler said he could potentially have 30 to 40 more children in his program, but can’t safely treat them without the necessary adults.

“We are now in an unprecedented situation,” he said. “The labor shortage that is happening across every industry is having a significant impact on us.”

Keeler said he needs every type of employee, from special education teachers to clinical therapists to security workers and caregivers. State agencies have used some federal COVID-19 relief funds so they can increase salaries but it’s not enough.

Keeler just started paying frontline workers $15 an hour, while the Amazon distribution center 25 miles away is paying $17 an hour plus a $3,000 signing bonus.

“It is a commitment to do the kind of work that we do here,” Keeler said. “Right now it is a struggle to compete with warehouse work.”

Who pays?

This bottleneck is leaving parents scrambling to find a place for their children in crisis.

Like Jaswilko, most families turn to their school district to get a placement in a residential facility. Schools are required to provide children with disabilities a free, appropriate education and, for that to happen, children like Kyle need round-the-clock support.

To get reimbursed by the state, families and school districts must choose from a list of approved facilities. When Jaswilko’s school district told him none could take Kyle, he called them himself. He got the same answer.

Jaswilko found some facilities that could take his son, but they weren’t on the state’s list so he would have to pay or file a complaint against the school district for not providing an appropriate education.

Jamie Cullen and her husband hired an attorney and successfully filed a complaint against their school district, which required it to pay for her son’s residential treatment. She only did this after her son, who is on the autism spectrum, was discharged from one residential home where he had terrible experiences.

Keeping her son at home was not an option. His aggressive behaviors have gotten worse during the pandemic and he’s attacked Cullen many times, forcing her to move out of the house.

Cullen says she’s lucky she could hire an attorney and knows how to research schools. For parents without these resources, “that’s the part that breaks my heart,” she said.

Her son is now at a residential facility in New York, where she says he’s made huge improvements within the first couple of weeks. The school is not on ISBE’s approved list.

Local school districts are the ones that end up burdened by this scenario, said Caroline Roselli, an attorney with the firm Robbins Schwartz, which represents several suburban districts. This unfairly drains money from districts, especially ones that are resource-strapped, she said.

She and others argue the state should allow for and pay for emergency placements at non-approved facilities. “There is nowhere else for these kids to go,” she said. “They can’t go home. They can’t come back to the district. These are our neediest students.”

The number of approved facilities was greatly reduced in 2018 when the state changed the rules to require monitoring and accreditation by the state where the facility was located, said special education attorney Matt Cohen. That knocked out some out-of-state facilities in places that didn’t monitor and accredit. Cohen said the state did not do anything to make up for the drop in facilities.

The state did not respond to questions about the process for approval.

The state also has come under fire for sending children to residential facilities where they were sexually and physically abused. In May, it stopped placing children at a facility in Aurora after an investigation revealed understaffing and that it failed to report incidents of abuse or neglect and improperly used seclusion and isolated time-out.

Tsunami of need

State officials have long said they want to move away from sending children to residential facilities and instead want to beef up community-based services. Experts say the best approach is not to tear children away from their communities where they can be hurt and it can go undetected.

However, that effort was thwarted during the budget crisis years under Gov. Bruce Rauner when community based mental health organizations were not getting paid and many closed down, according to Keeler.

These issues are all coming to head right now and it is creating a domino effect, Cohen said. Children struggling with mental health crises aren’t getting regular help in their communities so their problems are getting worse.

Dr. Frank Belmonte, co-chief medical officer at Advocate Children’s Hospital, told state lawmakers last week he has never seen so many children with such severe mental health problems.

“Unfortunately, this crisis rests upon an already under-resourced behavioral health infrastructure that is simply unable to handle the massive tsunami of children and adolescents who need help,” Belmonte said.

Belmonte told lawmakers the story of a foster child, who has been in his hospital for four months, waiting for a placement in a residential facility. She gets support from a teacher, but doesn’t go to school.

“She cannot go on outings or barely go outside regularly because we are a hospital and not a residential facility, which has such programming and capacity,” he said. “We are all doing the best that we can in face of a nearly impossible situation.”

Sarah Karp and Susie An cover education for WBEZ. Follow them @WBEZeducation@sskedreporter and @soosieon