Illinois Parents Relinquish Custody So Son Can Get Costly Medical Treatment

Jan 2, 2019
Originally published on January 2, 2019 2:30 pm
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NOEL KING, HOST:

All right. Now to a story about parents of children with severe mental illnesses. They face a lot of challenges, and sometimes they're forced to make excruciating decisions. A family in Illinois had to give up their son to get him treatment, and now they're trying to change that system. Christine Herman of WILL has the story.

CHRISTINE HERMAN, BYLINE: Jim and Toni Hoy adopted their son, Daniel, as a toddler.

TONI HOY: He was severely neglected as an infant. Literally starving and left for dead.

HERMAN: That early trauma affected Daniel's brain development. And as he grew, he started to show signs of serious mental illness.

T. HOY: It was pretty horrific. He held knives to people's throats. He broke almost every door in the house. At the same time, he's a little boy. And he didn't want to be that way. He didn't like being that way.

HERMAN: Toni home-schooled Daniel and his three older siblings in the north Chicago suburbs. But in 2005, she had to go back to work.

T. HOY: Our son just fell apart. After being six weeks in a public school classroom - something kids do every day - he couldn't emotionally handle it and had his first hospitalization.

HERMAN: Daniel was 10. He was diagnosed with several conditions, including PTSD, reactive attachment disorder and severe anxiety. He began therapy and medication, but the violent outbursts got worse. He was in and out of the psychiatric hospital 10 times in two years. The doctors said the only way to stop the cycle was for Daniel to get months, maybe years, of specialized intensive treatment away from home. But the family couldn't get coverage - not from his dad's private insurance and not from Medicaid, which Daniel had because he was adopted out of foster care.

T. HOY: We were told that we had to pay out-of-pocket for it.

HERMAN: At least a hundred-thousand dollars a year, which they didn't have. Then one night, Daniel picked up his brother, Chip, threw him down the stairs, and punched him over and over before their dad pulled them apart. Daniel went back to the hospital, and that's when the child welfare agency gave Toni and Jim Hoy an ultimatum.

T. HOY: If you bring him home this 11th time, we're going to charge you with child endangerment for failure to protect your other kids. And if you leave him in the hospital, we'll charge you with neglect.

JIM HOY: If any of our other kids got hurt once we brought him home, they would take the other kids. They put our back against the wall, and they didn't give us any options.

HERMAN: Jim says they decided to abandon their 12-year-old son at the hospital.

J. HOY: I went and I told Danny that we were not going to pick him up. And to this day, it is the most gut-wrenching thing I've ever had to do in my life. I mean, I love my son. But it was the only way we figured we could keep the family safe.

HERMAN: It was also a last-ditch attempt to get Daniel the help he really needed. That's because when child welfare takes custody, the agency must provide the treatment. It was a solution of sorts, but at a terrible price.

J. HOY: I mean, I was crying terribly. And I think Danny was crying because I was crying, but he said, I understand, Dad. You got to keep everybody safe. And I think the whole conversation ended with me giving him a great big hug, and I just didn't want to let him go.

HERMAN: The Hoy family was not alone. Hundreds, maybe thousands, of families feel forced to do this every year. But it's unclear exactly how many. Two-thirds of states don't even keep track of the numbers. A previous study did discover that at least 12,000 families in 19 states had given their kids up just to get them mental health care. Heather O'Donnell is a mental health advocate in Chicago.

HEATHER O'DONNELL: If these kids had leukemia or diabetes, they would have gotten help long, long, long before.

HERMAN: O'Donnell blames years of inadequate funding. There's been less for mental health, especially early intervention. And when kids can't get help, they deteriorate until they're getting repeatedly hospitalized.

O'DONNELL: Which is asinine, (laughter), and truly unfortunate. I mean, we just wait for tragedy.

HERMAN: Daniel lived in three different treatment centers over the next three years. His parents visited as often as they could.

DANIEL HOY: It was never a question in my mind that my parents would always be there for me.

HERMAN: Today, Daniel is 24 and has been stable for several years. Eventually, Jim and Toni sued Illinois and won a settlement to regain custody in 2010 when Daniel was 15. They also got money to pay for his care themselves.

D. HOY: They helped me through so much that it would almost have been impossible to continue treatment without them with me.

HERMAN: He works nights for a shipping company and lives with his girlfriend and their toddler daughter down the road from his parents. His dad, Jim, really loves that.

J. HOY: I feel so privileged that he's having a bad day, he comes over and talks to us about it.

HERMAN: Toni says it's shameful that families get torn apart by a system that's supposed to help.

T. HOY: Kids do need services, but they also need the support of their families. And when they have both, a lot of kids can be a lot more successful.

HERMAN: Many states say they are working on the custody problem, some of them only after getting sued. In Illinois, a federal judge ordered Medicaid officials to completely overhaul its system so kids can get treated earlier, and January is the deadline for them to roll out those changes. For NPR News, I'm Christine Herman.

KING: And that story is part of a reporting partnership with NPR, Side Effects Public Media and Kaiser Health News. Transcript provided by NPR, Copyright NPR.