This story is from Kaiser Health News

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 remembered times when Daniel reached out, put his hands on his face and smashed his cheeks. "And he'll 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 in my life," said 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 cried terribly. But that was the only way we could protect the family. "

Two-thirds of states do not track the number of families who leave custody to help a child obtain mental health services. But one study by the Government Accountability Office revealed that in 2001, nearly 13,000 children had been abandoned by families.

Today in Illinois, state registers show that dozens of children enter custody every year Act of 2015 to prevent it. And new data brought together 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 try to help children gain access to treatment without transfer of custody, the efforts expended too late in the progression of the disease.

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.

Child rights advocates say that until the underlying problem is solved, the problem of families switching to treatment will never be fully resolved.

Out of the options

Daniel grew up as the youngest of a family of four in Ingleside, north of Chicago. When he was a baby, he had been seriously neglected in his original family – hungry and left for dead. The early trauma Daniel experienced most likely affected his brain development, doctors said.

Toni schooled her children at home until she was forced to return to work full-time in 2005. She said that Daniel, 10, had just collapsed.

"After six weeks in a public school class – something that children do every day – he could not handle it emotionally and was hospitalized for the first time," said Toni.

Daniel's Post-Traumatic Stress Disorder and Severe Anxiety During Crisis.

"He held the knives at the throats of people," said Toni. "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, he'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 intensifies and Daniel is hospitalized several times.

Although his doctors and therapists said he needed institutional treatment, which would cost at least $ 100,000 a year, Daniel's private family health insurance and Medicaid's secondary coverage 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," said 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 was then that the Illinois Department of Child and Family Services issued an ultimatum to the Hoys.

"[They] "If you bring him home, we will accuse you of being a child in danger if you do not protect your other children," recalls Toni. "And if you leave him at the hospital, we will accuse you of negligence."

"If one of our other children was injured once we brought him home, he would take the other kids," Jim said. "They put our backs against the wall and they did not give us any options." 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 Robert Farley Jr., a lawyer in Naperville, Illinois, another suburb of Chicago.

"So you get institutional services, but then you give up custody of your child," Farley said. "What is, you know, barbaric. You must give up your child to get something needed. "

Take it to the courts

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 weeks, until he phoned the home of the group he'd been in 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.

During the next three years, Daniel lived in three 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] federal laws, "he said. "But someone is not there to enforce them."

In his lawsuit, Farley cited the state's own data that 18,000 Illinois children have severe emotional or behavioral problems, while only about 200 have intensive treatment. in mental health.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely reorganize the state system for children to receive treatment at home and in the community as early as early stages of their illness.

The deadline for the state to apply these changes is this month.

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, six state agencies that interact with children and families were forced to intervene when a family was considering giving up their custody to access services.

"I think the question is this: Should the government not step in and do its job? And this is not the case, "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, said the grounds for waiving custody were complex.

"If the law could solve the problems, the world would be different," she said.

In some locations, waiting lists for residential treatment beds for children in crisis can take months.

But even when beds are available, Walker said, 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 Reportedly, many children in foster care languished for months in poorly equipped psychiatric facilities to provide long-term care, as the state could not place them in an appropriate therapeutic setting. The Walker agency is to be sued for allegedly forcing children to "stay in locked psychiatric rooms, causing them enormous damage" for weeks or months after their release.

The underlying question

Neil Skene, spokesman for the Illinois Child Protection Agency, said there are more options for families like the Hoys today than 10 years ago. This includes a crisis stabilization program launched in 2017 that helps families access services.

According to Skene, when the child protection agency is blamed for this problem, it is as if a pitcher appeared at the end of a lost game to save the game and get scored.

Some advocates of mental health believe that it is not fair to blame the state child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O'Donnell, a mental health activist 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 had leukemia or diabetes, they would have gotten help long before," O'Donnell said. "It's because they have a mental health problem that makes their behavior difficult and erratic. And as a society, we sweep these conditions until there is a crisis. We are just waiting for the tragedy. "

"What Illinois needs to put in place is a system that helps these families very early, so these kids are never hospitalized," O'Donnell said.

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.

Stroul said that 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 care of their parents.

"But these strategies, in and of themselves, are only sufficient if home and community services offering the support and treatment needed to keep children and families safe in the community are available," said 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 said. "Sometimes it's so hard to do it 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," Jim said. "I feel so privileged that [when] he has a bad day, he comes and tells us about it.

Looking back, says Toni, it is shameful that families are being torn apart by a system that is meant to provide support.

She is grateful to have managed to keep it intact. Other families who have experienced the same thing, she said, have lost contact with their child forever. "Children need services," said Toni. "But they also need the support of their families."

This story is part of the reporting partnership between NPR and 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.

The coverage of child health problems by KHN is supported in part by the Heising-Simons Foundation.

Kaiser Health News is a non-profit news service covering health issues. It is an independent editorial program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.