Federal data shows that a smaller percentage of children in the state in need of mental health care get it compared to the national average. Health care professionals say part of the reason for that is a lack of resources, and parents not knowing where to turn for help. Illinois Public Radio’s Sean Powers reports on what’s being done to improve care.
There’s no silver bullet when it comes to raising a child with mental illness. Just ask Troy and Violet of Rantoul in Champaign County. They’ve asked not to use their last name to protect the privacy of their children.
“I’d say we’re still in the middle of the test. We’re still going through question and answer period. You know, multiple choices every day of what to do you do? Something new comes up just about every day, ” says Troy.
Troy and Violet have both been diagnosed with mental illness, and their 13-year-old son, Andrew, has ADHD, bipolar disorder, and oppositional defiant disorder. He also has a minor form of autism, which is a behavioral condition. Violet says she knew Andrew was smart even at a young age, but she says there were signs of problems. From 2-years-old on, his tantrums didn’t stop.
“We went to terrible 3’s, to terrible 4’s, to terrible 5’s, and so on, and so on, and so on,” says Violet.
Andrew loves to draw, and he’s pretty good at it, too. Inside his bedroom, there is a sketch on the wall of his favorite band called Skillet. Violet and Troy say there’s one song in particular that he likes…
“Oh, he would like the song Monsters. He would always thought of himself a monster because he didn’t understand what he was feeling,” says Violet.
“He didn’t understand the motions he was feeling inside, so he classified it as the monster inside himself, ” says Troy.
SONG: “…I must confess that I feel like a monster. I hate what I’ve become...” (fade out)
Later on, Violet talks to Andrew about the song.
“What I notice about you Andrew since you don’t listen to that Skillet and some of the music that they have like Monster, that you don’t call yourself a monster. You have not called yourself a monster for a long time,” says Violet.
“I still do,” says Andrew.
“You never share it," says Violet.
“I don’t have to share it,” says Andrew.
Violet and Troy say communicating with Andrew can be a challenge. On top of addressing their own mental health needs, Troy says he and his wife are also left with a lot of questions – what medications are the right fit for Andrew, and how to get him the extra help that he needs at school.
Troy and Violet often struggle, and hope their experience can help others in a similar situation. This year, they began teaching a six-week course for parents and guardians raising a child with a mental illness. It was developed by the National Alliance on Mental Illness, or NAMI.
Teri Brister developed the program in 2007, and it’s now being taught in more than three dozen states. She says the class helps parents understand how to navigate through the youth mental health care system. They also learn about the biology of the illnesses, symptoms, and behavioral management.
Brister says there is no simple solution to raising a child with a mental illness, which is why the class doesn’t just focus on one condition, but many conditions and how those associated symptoms overlap. While every experience is different, Brister says the challenges families face are often the same.
“To be the caregiver of someone with a mental illness can be overwhelming. On top of the stresses of also being a parent, and most of the time there are other children in the home. So, it’s not uncommon at all to see parents develop their own symptoms of depression and anxiety, even if they didn’t have those before,” says Brister.
Brister says because of the stigma tied to mental illness, there’s added pressure put on parents.
“Mental illnesses aren’t casserole illnesses. If someone breaks their leg or has a heart bypass or whatever, the community brings over food, they may come over and mow your yard. If they find out our child has been hospitalized because of emotional disturbances, they don’t know what to say to us,” says Brister.
The pressures of raising a child with mental illness have led some parents to relinquish control of their kids to DCFS in what’s known as psychiatric lockout. DCFS spokeswoman Karen Hawkins says it’s happening because there’s a lack of community mental health services for children. She says cases in which parents decide to go this route have doubled in the last couple of years.
“Usually we’re seeing this in cases where the children do require residential mental health services because obviously that’s the most expensive. It’s the most intensive. We’re seeing a lot of cases where the children have become a danger to themselves or to other members of the family, and the family doesn’t know what to do and the family can’t afford the kind of care that’s needed,” says Hawkins.
Data from the National Survey of Children's Health shows the percentage of children in Illinois who needed mental health services during the course of a year but didn’t get those services is higher than the national average.
According to an analysis by the American Academy of Child Adolescent Psychiatry, there are approximately 83-hundred practicing child and adolescent psychiatrists in the U.S, which the group says isn’t enough to meet the need. Dee Ann Ryan oversees the Vermilion County Mental Health Board. She says mental health services in Illinois need to be more centralized.
“Often families have no idea where to turn, and our services are so fragmented and siloed and funded siloed that if a family has a problem and they call one agency, they might not fit within their funding guidelines, so they send them off to another agency or another agency and pass the family around until they just get tired and give up,” says Ryan.
There is a new pilot program in four central Illinois counties that looks at creating a more centralized mental health care system like what Dee Ann Ryan just talked about.
DCFS contracts with the Indiana-based Choices Program. The way it works is a care coordinator with Choices meets with a child who’s a ward of DCFS and whoever is taking care of that child to put together a blueprint and support team. The blueprint may include getting that child into a foster home, afterschool program, or seeing a therapist.
Todd Schroll oversees the program in Illinois, and he says by localizing care, there should be less of a burden on the state’s mental health care system.
“We should be preventing young people from going into higher levels of care if at all possible. They should be stable in homes with the supports that they need, so that they’re not moving between multiple homes within short periods of time or even longer periods of time. We should be creating stable for them in this community by wrapping these services around them,” says Schroll.
Schroll says the Choices Program will also provide support to families who are in need of services that aren’t Medicaid eligible. His care coordinators are being trained to become culturally competent, so that they can work with children of many different backgrounds. He’s also in talks with Troy and Violet about incorporating their NAMI class as an option for families in need of mental health care training.
“Here is my son’s bedroom. Zachariah. And as you can tell, it’s a mess,” says Violet.
Back at Troy and Violet’s home in Rantoul, I get a tour of their youngest son’s bedroom. While their oldest son Andrew has already been diagnosed with several types of mental illness, they say their youngest son, 7-year-old Zachariah, is the only one in the family who hasn’t been diagnosed with a mental illness. But research shows that could change in the next few years.
Troy says last year, Zachariah began keeping track of his family’s behavior, marking each day of a calendar with different colors –like green for when things are going well or red for where no one in the household who’s getting along.
“Red days was a very bad day, flare ups, blow ups, from usually the oldest son blowing up over something, and then everybody getting into turmoil in the household over that,” says Troy.
“It’s not always our son. You know,” says Violet.
“We do it ourselves. We have our own flare up,” says Troy.
It’s those moments that not only test them as parents, but also as a family – and reinforces their commitment to help other families dealing with mental illness.
That story was part of our month-long series, “Unmet Needs: Living with Mental Illness in Central Illinois,” which continues all this month.