Custody Relinquishment to Get Mental Health Care for Your Adopted Child UPDATED

We gave a detailed description of disruption in our May Tuesday Terms post.

Now a new article about custody relinquishment in Illinois has been published that gives statistics and a new approach–potentially a class action lawsuit “that could force changes in how the state handles psychiatric lockouts, custody relinquishment and residential care. ”

The article begins with the story of the Busch family who adopted a sibling group in 2000. Their son was 2 years old at the time and is now 13. They were given “assurances from DCFS that the state would pay for the children’s medical needs, including mental health care. Despite counseling and therapy, Alan’s behavior became too dangerous for the family to keep him in their home, according to Wally Busch, so in October 2010 the family had Alan committed to a short-term psychiatric hospital with plans to send him to a long-term residential care facility at his psychiatrist’s recommendation. Lacking the hundreds of thousands of dollars needed to pay for Alan’s treatment, the Buschs approached DCFS about paying for long-term care, but the agency declined.

After Alan spent a week in the psychiatric hospital, the Buschs received a call saying he was ready to come home – that he was no longer a danger to himself or others. Fearing for the safety of their family and of Alan himself, the Buschs took their attorney’s advice and decided not to pick Alan up from the psychiatric hospital. DCFS charged them with neglect, classifying the Buschs’ choice as a “psychiatric lockout.”

The neglect charge against the Buschs was dismissed in court, but their choice to not bring Alan back home essentially meant they had given up custody of Alan to the state. He remains in state custody at a residential treatment facility, though the Buschs retain parental rights such as visitation.”

Definition of Custody Relinquishment

It “involves an adoptive family becoming overwhelmed by the challenges of a mentally ill or emotionally disturbed child. Usually after trying several methods of counseling and therapy that don’t seem to work, the family decides that expensive long-term residential care is the only option left, but securing funding from the state proves difficult or impossible. The family then decides the only option to secure treatment for the child is leaving him or her in the hands of the state. The decision to “lock out” a child usually comes at the suggestion of a family’s attorney, psychiatrist, or even a state agency, but it often results in the family losing custody of the child.”

Statistics

An internal Illinois report claims “that the number of psychiatric lockouts statewide more than tripled from 30 in 2003 to 104 in 2010. ” The state Community and Residential Services Authority (CRSA) says that this increasing number is a “significant concern.”

“Parents who attempt to access services through lockout in many instances end up relinquishing guardianship to the state and are often treated systemically as abusive or neglectful parents,” CRSA notes in its 2009 report. “CRSA staff do not believe that lockout is an effective mechanism for service planning and the CRSA board has long believed that parents should not be forced to give up guardianship and parental rights to their children simply to get their service needs met.”

The reports note that “referral to CRSA often implies a breakdown or a gap somewhere in the state service system.” CRSA cases increased from 355 in 2009 to 374 in 2010, with about half of cases from both years coming from families seeking residential care for a child with severe emotional disturbances or behavioral disorders. Of CRSA’s 355 cases in 2009, 32 came from Sangamon County.”

“But for parents to have to go through the living hell of abandoning their kids to the system simply to get their mental health needs met is just the wrong way to go. There must be a better way.”

” Illinois had nearly 52,000 children in its foster care system in 1997, but that number has been reduced to fewer than 17,000 currently, mainly due to increased efforts to place foster children into permanent adoptive homes. About 26,800 children in Illinois receive a monthly adoption subsidy from the state, which Marlowe says is probably the best available estimate of currently adopted kids in Illinois – excluding adoptions done through private agencies.

About 99 percent of adoptions remain stable after two years, with 95 percent remaining stable after five years, according to a DCFS report.” [So 5% failure on 26,800 is 1,340 kids with unstable adoptions]

Spokesman Marlow of Illinois DCFS says “Families often don’t want to hear that the entire family needs to be a part of the solution.”

The head of CRSA says ““My perception, from where I sit, is that community-based services aren’t available in the quantity or the quality that are necessary to maintain a lot of these kids, and that’s why it all breaks down,” Schornagel says. “All of the agencies that I’ve worked with have been, over the years, trying to back away from residential placement and take some of the money they were spending on residential care and redirect that to community-based programs. It’s a slow process of moving the money from the back end to the front end, and I think we’re in the middle of that.”

Another Story

The Hoys “adopted a two-year-old son named Daniel. He displayed developmental delays, had been abused by his biological parents, and had been born under the influence of drugs and alcohol. As Daniel grew older, he began to display violent and aggressive behavior, which became dangerous enough that Toni Hoy says she didn’t feel safe in her own home.

The Hoys tried several methods of therapy and counseling for Daniel, but nothing seemed to work. The final straw was when Daniel, then 13, pulled a knife on one of the Hoys’ other children and threw another child down some stairs.

In 2007, they approached the Department of Human Services (DHS) and the Department of Healthcare and Family Services (HFS) about paying for $180,000-per-year residential treatment the family could not afford. The state declined to pay.”

What they did: “Denied funding for treatment they felt Daniel truly needed, the Hoys chose not to pick him up from the psychiatric hospital. Like the Buschs, they faced a charge of neglect for their psychiatric lockout, and their son became a ward of the state, which eventually placed him in a residential treatment facility.” So the state ended up paying for care anyway.

“The Hoys eventually got the neglect charge dropped, but it remained in the State Central Registry of abuse and neglect findings. They sued DHS and HFS to obtain funding for Daniel’s residential care, settling their case in July 2011 with an agreement that the agencies would pay for Daniel’s treatment while not admitting any fault. The Hoys also regained custody of Daniel, who is now 16 and was recently transferred from residential care to a juvenile detention center for assaulting a teacher and damaging a car.

While the Hoy case doesn’t set a precedent for other cases because it was settled before a court ruling, Toni Hoy says she has advised several other families in similar situations, and their case may serve as a catalyst for an upcoming class-action lawsuit.”

Possible Solution–Class Action Lawsuit

“The Collins Law Firm in Naperville, which represented the Hoys in their case, is examining similar cases to construct a class-action suit that could force changes in how the state handles psychiatric lockouts, custody relinquishment and residential care. Attorney Aaron Rapier at Collins says that suit is still in the planning stages and will not be pursued until later, to avoid jeopardizing the Hoys’ settlement.”

When adoption goes wrong:Giving up custody to get kids the mental health care they need
[Illinois Times 8/11/11 by Patrick Yeagle]

Update: “From their modest home in Ingleside, Ill., Toni and Jim Hoy draft a letter to their son, Dan. He last lived with them three and a half years ago.

Dan and his brother Christian are adopted. They joined the Hoys and their two biological children 15 years ago.

The adoption decision had been risky, especially given the children’s troubled history.

“It was very chaotic,” Toni explained, citing the boys’ young birth mother. “There was prenatal substance abuse: alcohol and drugs. And there was post-natal physical abuse. Severe neglect where the children did not have food to eat. The neglect was probably worse than the abuse.”

It didn’t take long for Toni and Jim to see the childhood abuse manifest in the kids’ actions. “Soon after, we realized, probably after two years of having them in our homes, even being untrained, these were not normal kid issues,” recalled Jim. “But we had already brought them in our homes, and we made a promise to them that as long as they wanted to be here, they would always be a part of our family. And I’ve tried to always honor that promise to those children.”

Christian had manic rages and was diagnosed with bipolar disorder at the age of nine. Medications helped stabilize him.

But Dan was getting worse. Around the time he reached the fifth grade, he exploded.

“There were times where I would pick him up from school, he would wait to get in the car where he thought no one could see him, and he would basically attack me, where he knew he could get away with stuff,” Jim remembers. “He’d throw stuff at the drivers, he’d grab the steering wheel and direct us into oncoming traffic, and he thought it was funny.”

Dan was diagnosed with post traumatic stress disorder. The Hoys tried all sorts of therapies to treat Dan’s condition, including psychiatry and medications. But, according to Toni, “none of that worked either.”

The Hoys tried between 20 and 30 different medications, but Dan’s behavior became more unstable. His therapist recommended he be placed in a residential treatment center–a home with intensive therapy and specialized care.

But residential treatment is expensive. Despite looking everywhere, they were denied the family funding.

Treatment would cost over $10,000 a month. Their insurance wouldn’t cover it, and neither would the Medicaid Dan received as part of his adoption package.

The Hoys scrambled to buy time while they looked for funding. But it all came to a head when Dan was 14.

Jim described the situation in detail. “By that time, we had to have Danny residentially placed because he was trying to hurt the other kids–threatened to stab them, tried to push one of his siblings down the stairs.”

They brought Dan to a nearby hospital for one of what would become countless psychiatric evaluations. By this time, hospital visits were becoming more frequent.

According to Toni, the situation was dire. “He was in the hospital, the hospital was wanting to discharge him. We were trying to stall, and we were asking if they’d hold him for just a couple of days. And they refused and told us that if we didn’t pick him up they were going to call the [Department of Children and Family Services] child abuse hotline and report us for child abandonment, and yet DCFS told us if we brought him home they were going to try us for child endangerment for failing to protect the other children.”

It was a lose-lose situation. “I thought at that time we were at our worst point, and it kept getting worse and worse and worse,” recalls Jim.

The problems encountered by the Hoys are not typical. According to a report from DCFS, 95% of adoptions remain stable after five years. DCFS also offers a variety of post-adoption support services for families in need, but that offered little comfort to Toni.

“Ultimately, you know, it really came down to safety. When you really think about a vision of one of your children holding a knife to the other one’s throat knowing that he’s going to kill him, you know, can we go on living like that?”

Taking the advice of a therapist, the Hoys decided to leave Dan at the hospital.

“I went there and told Danny that I wasn’t going to pick him up. I mean it was the hardest thing I ever had to do in my life,” Jim remembers through tears. “For the first time since I had made that promise to Danny and to Christian that we would always be there, I wasn’t sure I was going to be able to fulfill it. It’s very, very tough.”

Toni and Jim relinquished custody of Dan and were charged with neglect. They later had the finding amended to no-fault dependency, which meant while legally they were still Dan’s parents, the state of Illinois had guardianship rights over him. As such, he was able to access residential treatment at the expense of DCFS.

But not everyone was pleased with the decision.

Kendall Marlowe is a spokesperson for DCFS. “Adopted children are not returnable, like an ill-fitting garment,” Marlowe says. “There’s a reason they call it permanency.”

Marlowe says that families seeking treatment like the Hoys place an undue burden on a department that was never designed to handle such requests.

“There have been academic studies that show that a high percentage of children who enter child welfare systems throughout this country, are, at the root cause of it, entering those systems because of unmet mental health care needs. And that’s just not the best way to get help to children and families,” says Marlowe.

Marlowe thinks families should be more vigilant about getting early preventative treatment through health service systems. “Broadly speaking, we will be more effective at delivering mental health services when it comes from the health service system. And that is not something that state will be able to conquer on their own. It will need a federal role to truly be effective.”

But it was too late for the Hoys to seek preventative treatment at the time of the relinquishment. Over the next two years, Dan would live in two different residential centers. Toni and Jim ultimately regained custody of Dan, but he’s in juvenile detention after an incident at his last residential center.

His future remains uncertain as the Hoys work towards obtaining funding for his treatment.

“You know, hope is like the air we breathe. I mean, to me I will never be out of hope for Danny. But at the same time, we gotta be somewhat…have reality and focus too,” Jim says. “Right now, if anything, Danny is worse than when he went into the residential system. That being said, my family was made complete when Danny and Christian came into our lives. Like we said, from day one when they came, if they wanted us to be mom and dad forever, we would be. And we’re here.”

Adopting the fight
[WBEZ 8/25/11 by Rehman Tungekar]

Update 2: “A class action lawsuit against the state of Illinois alleges state welfare agencies illegally withhold treatment for children with emotional and behavioral disorders. The lawsuit could affect more than 18,000 youth with severe mental illnesses and emotional disturbances in Illinois.

Lawsuit claims Illinois illegally withholds treatment for kids
[Illinois Times 1/26/12 by Patrick Yeagle]

REFORM Puzzle Piece

Illinois has issues with accountability in many departments. We hope this jolts them to action on their treatment of mental health issues in children.

Update 3:“When Dan Hoy was just six months old, he was taken from his biological parents by the state. He was lethargic and starving to death, and he had to be fed with an eye dropper each hour to keep him alive.

Then, at the age of two, Dan was adopted by Toni and Jim Hoy of Ingleside, which is north of Chicago. For Dan, it was a blessing or a stroke of luck because he would soon need his new family’s tenacity in the fight to keep him from becoming lost in the mental health system as a ward of the state.

Now 19, Dan spoke last week to lawmakers at a legislative hearing in Springfield, asking for the passage of a bill that would have prevented much of his family’s battle.

Dan’s neglect as a baby impaired his brain’s ability to regulate emotions, he told lawmakers. As a result, he became violent and uncontrollable around age 10. By age 12, he had been placed in a psychiatric hospital 11 times. The Hoys couldn’t afford the expensive care Dan needed at a residential facility, but the state wouldn’t pay for it unless the Hoys relinquished their custody of Dan in what’s known as a “planned abandonment” or a “lockout.” It was then that the Illinois Department of Children and Family Services issued the Hoys an ultimatum.

“They said if we brought him home from the hospital, they were going to charge us with child endangerment for failure to protect our other children,” she said. “If we left him at the hospital, they were going to charge us with neglect. The hospital social worker cried, along with our entire family, as we drew the line at safety and made the unbearable decision to leave him at the hospital with strangers.”

The Hoys gave up custody of Dan in 2008 and would spend the next three years fighting DCFS in court to get him back.

“I could see the stress and pressure that was put on my parents, especially my mom,” Dan told lawmakers in the March 26 hearing. “That hurt me a lot, and I feel a lot of guilt that my parents suffered so much to help me get treatment. I love my parents and I should not have lost them for any amount of time for a chance at getting better. … I need all the services that I’m getting and I still need my parents too. Without either one of them, I would be on the streets or in jail. I don’t want any other kids to go through what I and my family did.”

The Hoys’ story is not an isolated case. More than 600 families in Illinois have relinquished custody of their adopted children over the past 10 years in order to obtain treatment for their children’s mental disturbances. At least eight lawsuits have been filed against the state, arguing that adopted children are entitled to such care through Medicaid under federal law. And while some of those lawsuits have successfully gained care for children, the situation that leads to the cases in the first place remains.

Rep. Sara Feigenholtz, D-Chicago, sponsors House Bill 5598, which would prohibit the Department of Children and Family Services from making custody relinquishment a condition of paying for residential care, among other provisions. Feigenholtz was adopted as a child herself and has made adoption reform a central part of her legislative career.

The bill received support from 115 individuals and groups, and several families showed up to submit testimony about their experiences with planned abandonment. Two state agencies – the Illinois Department of Human Services and the Illinois Department of Children and Family Services – oppose the bill.

Meryl Paniak, chief counsel of DCFS’ legislative affairs office, says the bill would essentially make her agency responsible for mental health services for children, which may cost the state millions of dollars. Paniak says another agency – the Illinois Department of Human Services – is better equipped to handle that task, and DCFS wants an interagency agreement in place to direct families to the appropriate agency.

“We agree wholeheartedly with the premise of legislation that parents should not have to relinquish custody to get mental health treatment despite the absence of abuse and neglect,” she said. “We also support the need for an interagency agreement between the departments and divisions… I think where we disagree is placing the burden on the Department of Children and Family Services.”

Debra Ferguson, senior deputy and chief of clinical operations for the Department of Human Services’ division of mental health, says her agency also supports the goal of Feigenholtz’ bill, but Ferguson says residential treatment often isn’t the answer. The bill does not require residential treatment, but it would make such treatment easier for parents to obtain for their adopted children.

“Current best practice holds that the best outcomes are achieved with children, youth and caregivers when their needs are matched with appropriate individualized services,” Ferguson said. “Out-of-home residential treatment is not clinically indicated for the vast majority of children with serious emotional disturbances, and in fact has been demonstrated to be effective for only a small minority of children and youth.”

Feigenholtz said she would work with both departments to find a compromise.

“This is very much the beginning of an effort to make a moral statement from the State of Illinois that we are not about forcing families to give up their children, that we are going to work toward a better path for those families and a better path for those children,” she said.

The bill was approved by the House Adoption Reform Committee unanimously and awaits a vote before the full House.”

Illinois may end ‘planned abandonment’[Illinois Times 4/03/14 by Patrick Yeagle]