Christine Herman / Illinois Public Media
When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They had no intention of returning it to the state of Illinois, ever.
"Danny was that cute, cute baby boy with blond hair and blue eyes," Jim said.
Toni remembers when Daniel reached out, put his hands on his face and crushed his cheeks. "And he would go," you're pretty, mom, "said Toni. "Oh my God, he just melted my heart when he said those very loving and endearing things to me."
But as he gets older, Daniel has changed. He began to show signs of serious mental illness resulting in violent outbursts and close to a dozen psychiatric hospitalizations, from the age of 10 years. The doctors said he needed intensive and specialized care outside the home – institutional services costing at least $ 100,000 a year.
The family had private insurance through Jim's work and Daniel also had Medicaid coverage because he had been adopted. But no insurance would pay for this treatment. Exhausted and desperate, the Hoys decided to surrender custody to the state. If they sent Daniel back to the foster care system, the child protection agency would be forced to pay for the services he would need.
"To date, it's the most heartbreaking thing I've ever had to do with my life," says Jim. He went to the hospital and told Daniel, at the age of 12, that they had legally abandoned him so that the child protection services could take over. "I was crying terribly, but it was the only way for us to protect the family."
Two-thirds of states do not know how many families have abandoned custody to help the child obtain mental health services. But one study by the Government Accountability Office revealed that in 2001, more than 12,000 families in 19 states had done just that.
Today, in Illinois, state registers show that dozens of children enter custody every year, despite Act of 2015 to prevent it. And new data collected by the University of Maryland for the federal government, Illinois is not alone in not having solved this problem.
Advocates of mental health say the problem is "too little, too late". Even when states are trying to help children gain access to treatment without custody transfer, the efforts being made belatedly delay the progression of the child's illness.
Advocates have decades of insufficient funding for home and community services across the country – a lack of funding that has undermined the mental health system. Without this early intervention, children deteriorate to the point of being unnecessarily hospitalized and requiring expensive residential care.
Children's rights advocates say that until the underlying problem is solved, the problem of families exchanging custody for treatment will never be fully resolved.
Out of the options
Daniel grew up with the Hoys, the youngest of their four children, in Ingleside, just north of Chicago. When he was a baby, he had been seriously neglected in his original family – hungry and left for dead. Doctors say that the first trauma suffered by Daniel most likely affected his brain development.
Toni schooled her children at home until she was forced to return to work full-time in 2005. According to her, Daniel, who was 10 years old at the time, just came back. # 39; collapse.
"After six weeks spent in a public school classroom – something that kids do everyday – he could not handle that emotionally and was hospitalized for the first time," says Toni.
Daniel's post-traumatic stress disorder and his severe anxiety manifested in tantrums.
"He held the knives at the throats of people," Toni said. "He tried to put his fingers and tongue in the sleeves, he broke almost every door in the house."
In the car, he sometimes drove while Toni was driving to try to force the car into the traffic. Other times, he would take it to his brothers and sisters.
"At the same time, it's a little boy," she says. "He did not want to be like that, he did not like being that way."
Despite Toni and Jim's efforts to help their son with therapy and medication, the violence intensified and Daniel was hospitalized several times.
Although his doctors and therapists stated that he needed a residential treatment, of an amount of at least $ 100,000, the private health insurance of the Daniel's family and secondary coverage of Medicaid were denied.
The Hoys therefore applied for a public subsidy for children with severe emotional problems. They also sought the help of the Daniel School District, which is supposed to cover some of the costs when students need off-site long-term care. They were denied both.
"We were told we had to pay out of pocket," says Toni.
Then one night, Daniel took his brother Chip, threw him down the stairs and hit him again and again before their father separated the boys.
Daniel returned to the hospital for the eleventh time in two years. It is at this point that the Department of Child and Family Services of Illinois has issued an ultimatum to the Hoys.
"[They] "If you bring him home, we will accuse you of endangering children for failing to protect your other children," "Toni remembers". "And if you leave him in the hospital, we'll take care of it. negligence & # 39. "
"If one of our other children was injured, once we brought him home, he would take the other kids," Jim explains. "They put our back against the wall, and they gave us no option." The couple left Daniel in the hospital.
Once the state child protection agency is about to take custody, it will put the child into institutional treatment and pay the cost, said lawyer Robert Farley Jr., based in Naperville, Illinois.
"So you get residential services, but then you give up custody of your child," says Farley. "What is, you know, barbarous, you have to give up your child to get something needed."
Bring it to court
DCFS investigated the Hoys and accused them of negligence. They appealed to the court and the charge was later amended to become a "no-fault dependency", which means that the child was placed in the custody of the state without the parents are responsible for it.
They did not know where Daniel was for several weeks, until he picked up the phone from the home of the group where he had been placed and called to tell them he was fine.
Losing custody, Toni and Jim could visit Daniel and keep in touch with him, but they could not make a decision about his care.
Over the next three years, Daniel lived in three different residential treatment centers. It was five o'clock by car. His parents went as often as possible.
Toni spent months reading about federal Medicaid law and learned that federal-federal health insurance program supposed to cover all medically necessary treatments for eligible children.
The Hoys hired a lawyer and, two years after giving up Daniel, sued the state in 2010.
Six months later, they settled amicably and found custody of Daniel, then 15 years old. They also received the money to pay for Daniel's care themselves.
At about the same time, lawyer Farley decided to deal with the issue on behalf of all Medicaid-eligible state children. He filed a class action, alleging that Illinois had illegally retained services from children with severe mental disorders.
"The [are] great federal laws, "he says. But someone is not there to enforce them. "
In his lawsuit, Farley quoted the state's own data, showing that 18,000 Illinois children had a serious emotional or behavioral disorder, while only about 200 had intensive treatment for their mental health. .
As part of a settlement, a federal judge ordered the Illinois Medicaid officials to completely reform the state system, so that children could benefit from home-based and community-based treatment in the early stages of their illness.
The deadline for the state to apply these changes is January.
A law that did not solve the problem
As these legal battles unfolded, lawmakers in Illinois began their own work to ensure that parents no longer have to give up child custody to get the help they need. .
The law on the prevention of the release of detainees, which became law In 2015, orders six state agencies that interact with children and families to intervene when a family is considering giving up their custody to gain access to services.
"I think the question is this: Should the government not intervene and do its job, and they are not," said Democratic State Representative Sara Feigenholtz. "We just want them to do their job."
B.J. Walker, head of the Child Protection Agency of Illinois, explains that the reasons for abandonment of custody are complex.
"If the law could solve the problems, the world would be different," she says.
In some locations, waiting lists for residential treatment beds for children in crisis can take months.
But even when beds are available, says Walker, some facilities simply refuse or can not take a child with a serious mental health problem or a concomitant health problem.
In desperation, some parents will abandon custody in the hope of placing their child at the top of the waiting list. But that does not necessarily solve the problem.
As ProPublica Illinois According to reports, many children in foster care languish for months in poorly equipped psychiatric services to provide long-term care, as the state can not provide them with placement in an appropriate therapeutic setting. The Walker agency is to be sued for allegedly forcing children to "stay in locked psychiatric rooms, causing immense harm", for weeks, if not months, after release for release.
The underlying problem
Neil Skene, spokesman for the Illinois Child Protection Agency, said there were more options for families like the Hoys today. ######################################################################################## As there was a decade. This includes a crisis stabilization program launched in 2017 to help families access services.
According to Skene, when the child protection agency is blamed for this problem, it's as if a pitcher was coming to the end of a losing party to save the situation and was getting to mark.
Some advocates of mental health agree that it's unfair to blame the state's child protection agency for a problem that stems from the fact that it's a problem. a chronically underfunded mental health system.
Heather O 'Donnell, a mental health advocate who works for Thresholds, a provider of behavioral health treatments in Chicago, credits years of underfunding in Illinois and the United States.
Early intervention services are either unavailable or inaccessible because insurance companies refuse any coverage.
"If these kids were suffering from leukemia or diabetes, they could have been getting help long, well before," O Donnell said. "It's because they have a mental health problem that their behavior is difficult and erratic." And as a society, we are sweeping these problems up until there is a Meme it crisis, we are just waiting for the tragedy. "
"What Illinois needs to put in place, it's a system that helps these families from the very beginning, so these kids are never hospitalized," said O Donnell.
Beth Stroul, who has been studying the problem of renouncing custody for decades, agrees. She is the principal researcher on a new study – commissioned by the federal government and carried out by the University of Maryland – which explains why the problem persists to this day.
Stroul says other states, including Georgia and New Jersey, have enacted laws and stepped up their efforts to help children get treated while they are in the custody of their parents.
"But these strategies, in and of themselves, are not enough unless there are home and community services that provide the support and treatment needed to keep children and families safe in the community," says Stroul.
The difference that treatment and family can make
Daniel Hoy is now 24 years old and has no residential treatment – and has been stable – for six years.
He said the treatment was tough and that he would not have improved without the love and support of his parents. "I never thought my parents would always be there for me," he says. "Sometimes it's so hard to do it for yourself, it almost helps to know that I'm doing it for myself, but I'm doing it for my family and our relationship as well."
Daniel now works at night for a transportation company and lives with his girlfriend and their granddaughter in central Illinois, not far from his parents.
"I love having a relationship with him," says Jim. "I feel so privileged that [when] he has a bad day, he comes and tells us about it. "
Toni says, in hindsight, that it is shameful that families are being torn apart by a system supposed to provide support.
She is grateful to have managed to keep it intact. According to her, other families who have experienced the same thing have lost contact with their child forever. "Children need services," says Toni. "But they also need the support of their families."
When they have both, she says, many children can be much more successful.
This story is part of NPR's reporting partnership with Public Media Side Effects and Kaiser Health News. A longer version of this story appears in The workaround Podcast. Christine Herman is a recipient of a Rosalynn Carter Scholarship for Mental Health Journalism. Follow her on Twitter: @CTHerman