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When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.

鈥淒anny was this cute, lovable little blond-haired, blue-eyed baby,鈥� Jim said.

Toni recalled times Daniel would reach over, put his hands on her face and squish her cheeks. 鈥淎nd he would go, 鈥榊ou pretty, Mom,鈥� 鈥� Toni said. 鈥淥h, my gosh, he just melted my heart when he would say these very loving, endearing things to me.鈥�

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home 鈥� institutional services that cost at least $100,000 a year.

The family had private insurance through Jim鈥檚 job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state. If they sent Daniel back into the foster care system, the child welfare agency would be obligated to pay for the services he needed.

鈥淭o this day, it鈥檚 the most gut-wrenching thing I鈥檝e ever had to do in my life,鈥� Jim said. He went to the hospital and told Daniel, then 12, that they were legally abandoning him so child welfare could take over. 鈥淚 was crying terribly. But it was the only way we figured we could keep the family safe.鈥�

Two-thirds of states don鈥檛 keep track of how many families give up custody to help a child get mental health services. But a聽聽by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a聽聽aimed at preventing it. And聽聽collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Mental health advocates say the problem is one of 鈥渢oo little, too late.鈥� Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the children鈥檚 illnesses.

The advocates blame decades of inadequate funding for in-home and community-based services across the country 鈥� a lack of funding that has chipped away at the mental health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out Of Options

Daniel grew up as the youngest of four children in Ingleside, north of Chicago. As a baby, he had been severely neglected in his birth family 鈥� starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors said.

Toni home-schooled her children until she had to return to work full time in 2005. She said Daniel, who was 10, just fell apart.

鈥淎fter six weeks of being in a public school classroom 鈥� something kids do every day 鈥� he couldn鈥檛 emotionally handle it and had his first hospitalization,鈥� Toni said.

Daniel鈥檚 post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

鈥淗e held knives to people鈥檚 throats,鈥� Toni said. 鈥淗e tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.鈥�

In the car, there were times he鈥檇 reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

鈥淎t the same time, he鈥檚 a little boy,鈥� she said. 鈥淗e didn鈥檛 want to be that way. He didn鈥檛 like being that way.鈥�

Despite Toni and Jim鈥檚 efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would run at least $100,000 a year, both the family鈥檚 private health insurance, and Daniel鈥檚 secondary Medicaid coverage, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel鈥檚 school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

鈥淲e were told we had to pay out-of-pocket for it,鈥� Toni said.

Then one night, Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their dad pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That鈥檚 when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

鈥淸They] basically said, 鈥業f you bring him home, we鈥檙e going to charge you with child endangerment for failure to protect your other kids,鈥欌�� Toni remembered. 鈥溾�楢nd if you leave him at the hospital, we鈥檒l charge you with neglect.鈥欌��

鈥淚f any of our other kids got hurt once we brought him home, they would take the other kids,鈥� Jim said. 鈥淭hey put our backs against the wall, and they didn鈥檛 give us any options.鈥� So the couple left Daniel at the hospital.

Once the state鈥檚 child welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, said Robert Farley Jr., a lawyer in Naperville, Ill., another Chicago suburb.

鈥淪o you get residential services, but then you鈥檝e given up custody of your child,鈥� Farley said. 鈥淲hich is, you know, barbaric. You have to give up your child to get something necessary.鈥�

Taking It To The Courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a 鈥渘o-fault dependency,鈥� meaning the child entered state custody at no fault of the parents.

They didn鈥檛 know where Daniel was for several weeks, until he phoned from the group home where he had been placed to tell them he was OK.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is聽聽all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel鈥檚 care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a聽, claiming Illinois illegally withheld services from children with severe mental health disorders.

鈥淭here [are] great federal laws,鈥� he said. 鈥淏ut someone鈥檚 not out there enforcing them.鈥�

In his lawsuit, Farley cited the state鈥檚 own data, showing that 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 receive intensive mental health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system so that kids get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is this month.

A Law That Didn鈥檛 Fix The Problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their kids the help they need.

The Custody Relinquishment Prevention Act, which聽聽in 2015, ordered six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

鈥淚 think the question is: Shouldn鈥檛 government be stepping in and doing their job? And they鈥檙e not,鈥� said Democratic state Rep. Sara Feigenholtz. 鈥淲e just want them to do their job.鈥�

B.J. Walker, head of Illinois鈥� child welfare agency, said the reasons for custody relinquishments are complex.

鈥淚f law could fix problems, we鈥檇 have a different world,鈥� she said.

In some places, waitlists for residential treatment beds for kids in crisis can be months long.

But even when beds are available, Walker said, some facilities are simply unwilling or unable to take a child who has a severe mental health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn鈥檛 necessarily solve the problem.

础蝉听聽reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care because the state is unable to place them in an appropriate therapeutic setting. Walker鈥檚 agency is聽聽for allegedly forcing children to 鈥渞emain in locked psychiatric wards, causing immense harm,鈥� for weeks or months after they鈥檝e been cleared for discharge.

The Underlying Issue

Neil Skene, spokesman for Illinois鈥� child welfare agency, said there are more options for families like the Hoys today than there were a decade ago. That includes a聽聽launched in 2017 that helps families get access to services.

When the child welfare agency is blamed for this problem, Skene said, it鈥檚 like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental health advocates agree it鈥檚 not fair to fault the state鈥檚 child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O鈥橠onnell, a mental health advocate who works for Thresholds, a behavioral health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

鈥淚f these kids had leukemia or diabetes, they would鈥檝e gotten help long, long before,鈥� O鈥橠onnell said. 鈥淚t鈥檚 because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there鈥檚 a crisis. We just wait for tragedy.鈥�

鈥淲hat Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,鈥� O鈥橠onnell said.

, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a聽聽鈥� commissioned by the federal government and carried out by the University of Maryland 鈥� that explores why the problem persists.

Stroul said other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

鈥淏ut those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,鈥� Stroul said.

The Difference Treatment And Family Can Make

Daniel Hoy is now 24 and has been out of residential treatment 鈥� and stable 鈥� for six years.

He said treatment was tough, and he would not have gotten better without his parents鈥� love and support. 鈥淚t was never a question in my mind that my parents would always be there for me,鈥� he said. 鈥淪ometimes it鈥檚 so hard to do it for yourself. It almost helps to know that I鈥檓 doing it for myself, but I鈥檓 also doing it for my family and for our relationship.鈥�

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

鈥淚 just love having a relationship with him,鈥� Jim said. 鈥淚 feel so privileged that [when] he鈥檚 having a bad day, he comes over and talks to us about it.鈥�

Toni said, looking back, it鈥檚 shameful that families get torn apart by a system that鈥檚 supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she said, have lost touch with their child forever. 鈥淜ids do need services,鈥� Toni said. 鈥淏ut they also need the support of their families.鈥�

This story is part of NPR鈥檚 reporting partnership with聽聽and Kaiser Health News. A longer version of this story appears in聽 podcast. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism.聽