Shocking drop in services for Illinois children with severe mental illness

December 17, 2013

The Johnson family is using a pseudonym to maintain their privacy.

Last week, WBEZ discovered that the number of psychiatric lockouts had doubled in Illinois over the past two years. That means more parents are abandoning their children and relinquishing custody to the state, simply to get that child mental health care.

One of the services meant to help families before they reach that point of crisis is called an Individual Care Grant (ICG).

The state-funded grant pays for children with severe mental illness to get community and residential services. Some parents credit those services with saving their child’s life and preserving their families.

But the grant is now only serving about half the Illinois youth that it did 5 years ago. Some advocates say the grant’s decline might be partly responsible for the spike in custody relinquishment.

Chart: The decline of Individual Care Grants

Emily Johnson saw the shift first hand. She worked for eight years at a non-profit where she helped families complete ICG applications. It’s a grueling process, with tons of paper work and documentation.

Johnson said, in the last few years, more applications were sent back as incomplete because they had very tiny mistakes, like having two sheets out of order. Some families told Johnson that they thought the state was trying to discourage them from seeking out services.

She said even applications that described severe psychiatric conditions, applications that would easily have been accepted in the past, were now denied.

“It just got to the point where these children were in and out of the hospital constantly and they were still being denied,” said Johnson.

Johnson took a strong interest in these applications because her own daughter, Erin, had bipolar disorder with psychotic features.

“She had hallucinations and would jump out of the window trying to be superman and fly,” said Johnson.

Erin could be really kind, when she was about 11-years-old, she wrapped up her own possessions to give her siblings as presents. But her illness sometimes made her violent. “She would take her sister and bash her head into the door jamb. She broke her brother’s arm and showed absolutely no remorse,” said Johnson.

The Department of Children and Family Services investigated Johnson’s home. Johnson was scared they were going to take away one of her children. But instead, DCFS helped Johnson get an ICG.

“If there was no ICG, I would have had to choose between keeping my daughter at home and my other three kids going into foster care. Or most horribly, having my daughter inflict harm on herself and possibly end her life on her own,” said Johnson.

Johnson said the grant saved her family and she is angry to see it in decline. In 2006, when her daughter got an ICG, 124 Illinois youths were approved for the grant. In 2013, only 11 were approved-- in the whole state. That’s the lowest in history of the program.

“The families were just going through so many emotions of inadequacy. You know, ‘why can't I take care of my child? What's going to happen to them? So a lot of heartbreak,” she said.  

Johnson said many children were denied because the state said they didn’t have severely impaired reality, one of the grant’s requirements. Experts say severely impaired reality testing leaves room for a lot of clinical interpretation. According to the Illinois Division of Mental Health’s website, symptoms can include hallucinations and bizarre behavior.

Dr. Debra Ferguson oversees Clinical Operations for the state’s Division of Mental Health. She acknowledged that in recent years, they’ve more strictly applied the definition of impaired reality. Ferguson said one reason they made the change was because, previously, the ICG program had overspent.

“We wanted to live within our appropriation, and in order to do that, we made the decision to adhere strictly to the eligibility requirement codified in rule,” said Ferguson.

Ben Wolf, a lawyer with the American Civil Liberties Union (ACLU), said the state might actually be breaking the law.  He oversees a 1980’s state consent decree that deemed ICG was an entitlement. That means, no matter what the budget is, the government is legally obligated to give grants to anyone who qualifies.

“If the level of appropriation is affecting the final judgment about who is eligible and who is not, then that in my view would be a violation of the law, and of our consent judgment,” he said.  

Debra Ferguson stressed that the approval process became more stringent so the most severely mentally ill youth could enjoy services. She said the Division of Mental Health is reviewing the ICG process, and getting feedback from parents and other stakeholders.

“What they develop and recommend is what I want to look at and what I will take under review,” she said.

Attorney Brooke Whitted is watching that review closely. He represents families trying to get services. He is also board president of the The Sonia Shankman Orthogenic School. The school serves mentally ill youth, and some of their students use an ICG to pay the school.

He talked about parents who keep locks on their bedroom doors because of their child’s violent episodes. “Other kids we’ve known about like to reach down their esophagus, and try to pull their organs out,” said Whitted. He said those children “need staff on them 24-hours, otherwise they are going to do what they are trying to do.”

Whitted used to be a probation officer. He said if we don’t fix the ICG process, its problems could  pose community safety risks. Whitted also said it doesn't save the state any money. “All you are doing is shifting the cost from one pocket to another. Because the kids end up homeless or juvenile prisons and it cost more,” said Whitted.

Johnson said while working at the non-profit, she saw the consequences first hand. She watched some families spiral into despair after getting an ICG denial.

“This was their last chance at family preservation and they needed this because the safety of other children was at risk. Their personal safety was at risk. And the intended ICG recipient was at risk too,” said Johnson.

As the state reviews the ICG program, Johnson hopes it will imagine these children in the future. Ten years from now, what could that child be like if they get services versus if they do not?

Johnson said asking that question, should make the risks, both human and financial, clear.

Shannon Heffernan is a WBEZ reporter. Follow her on Twitter @shannon_h.