Families take drastic steps to help children in mental health crises

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When Lisa Norris adopted her daughter Hannah out of foster care as a toddler in 2010, she never dreamed that a decade later she’d give up custody of the girl as a last-ditch effort to save her life.

Norris describes Hannah as a fearless, kind and funny child who loves art, animals and helping people. Hannah, now 14, wants to be a first responder when she grows up. She dreams of saving up enough money to eventually open her own restaurant.

But Hannah, the youngest of four children in her family, has struggled her whole life with significant mental health challenges. Her diagnoses include PTSD, anxiety and depression. In recent years, she has experienced psychotic episodes and has made multiple suicide attempts.

“She's amazing,” said Norris, a special education coordinator who lives in Hilliard, Ohio, outside of Columbus. “When she's not in our house, we all miss her. But when she's in our house … it's hard and it's stressful and it's unpredictable.”

When Hannah needed intensive and expensive mental health treatment that neither of her insurance providers would fully cover, Norris said her only option was to turn over custody of her child to force the state to pay for the services.

"I have a life threateningly ill child," Norris said. "If this were cancer, if this was a genetic syndrome, if this was a traumatic injury … I would never ever, in any place, be told, 'Well, the only way you can do that is to turn over custody of your kiddo.'"

Hannah is one of hundreds of children in Ohio who entered state custody in 2021 primarily to access behavioral health services. This happens most often when a child like Hannah needs residential treatment. If there’s no mechanism to pay for it, out-of-pocket costs can exceed $100,000 a year.

Comprehensive data on how often families must resort to such extreme measures does not exist, as two-thirds of all states say they don’t explicitly track this phenomenon. But responses from a handful of states to questions about custody relinquishment suggest Ohio is not alone. And an earlier study found that nearly 13,000 families in 19 states relinquished custody of a child in fiscal year 2001 to access mental health treatment.

It’s an extreme situation that’s reflective of a much larger issue. In the U.S., children’s mental health services have long remained out of reach for many of the nation’s most vulnerable kids. About 7.4 million U.S. children— roughly 1 in 10 — have a serious mental disorder that impacts their ability to function, but most receive no treatment.

Rates of anxiety, depression, and suicidal ideation among kids also have increased in recent years.

Barriers to accessing mental health care for children include high costs, lack of insurance coverage, a shortage of providers, and the time and effort required to schedule and access care — factors that more significantly impact families of color and those living in poverty.

But Ohio is joining other states, like New Jersey, Oklahoma and Washington, in redesigning its mental health system to eliminate these barriers so children can get the help they need without losing their families. Proponents say these states are using an evidence-based approach that helps identify the highest-risk children and families and wrap services and supports around them. It’s a comprehensive approach known as “systems of care” that research suggests both saves states money and improves outcomes for kids.

"Systems of care save lives,” said Gary Blau, a senior advisor for children, youth and families at the U.S. Substance Abuse and Mental Health Services Administration. Blau points to data that shows young people with a history of suicidal ideation and suicide attempts who get this particular intervention see a significant reduction in those thoughts and behaviors.

“There are effective, evidence-based practices that work for young people,” he said. “We know a lot about what works now.”

Custody relinquishment has its own costs

Last year, Ohio launched a statewide children’s mental health initiative, OhioRise, aimed in part at abolishing the practice of custody relinquishment. The program pairs families and children in crisis with care coordinators to help them navigate the system and access mental health treatment and other services they need.

If this program had launched a decade earlier, Lisa Norris suspects her family could’ve been spared a lot of hardship.

As a very young child, Hannah threw tantrums that would last for hours. She destroyed furniture and other property and threatened to hurt pets, family members, other children and herself. It was incredibly stressful, Norris said, but they managed, with the help of in-home therapy and other behavioral health services.

As she grew older, Hannah’s behaviors became more extreme — and dangerous. At age 10, Hannah regularly tried to run away from home and started hearing and seeing things that weren’t there.

“She calls it ‘bloody man,’” Norris said. “She has a figure and a voice that she sees and hears that tells her to kill herself and kill her family and her friends in graphic detail. It terrifies her. … She’ll sit sobbing and tell you she doesn’t want to do those things. But [the voice] won’t stop until she does.”

Around the same time, Hannah began cycling in and out of the emergency department and children’s psychiatric unit — a common scenario for children in crisis who exhibit aggressive behaviors.

From 2015 to 2020, pediatric mental health emergency visits in the U.S. increased 8 percent every year, according to one large study. Children with more severe conditions and less access to health care were more likely to experience a repeat visit within six months. Another recent study found that among children enrolled in Medicaid who sought emergency care for mental health concerns, only 56 percent received any form of mental health follow-up care within 30 days.

While hospital stays can help stabilize a child and prevent worst-case scenarios of harm to themself or others, children’s mental health experts caution that hospitals are no replacement for ongoing mental health services. In places where home- and community-based services are lacking, many families turn to emergency departments when mental health crises erupt. Children who cycle in and out of hospitals without being plugged into follow-up care then risk unnecessarily ending up in residential care when their problems aren’t sufficiently treated.

In 2020, Hannah’s providers recommended she receive residential treatment due to the severity of her symptoms. She spent about seven months at a facility not far from home, paid through a state program designated for children with significant behavioral health needs. She made progress while in treatment, but after she returned home, Hannah continued to struggle, and the revolving door with the nearby hospital started up again.

The pot of state money designated for her treatment at residential facilities, Norris learned, had also run out and the coverage offered by her private health insurance would not be sufficient to secure a placement at the facility.

Because Hannah is an adoptee, Norris could receive funding from Medicaid to cover the services at the facility. But the funding could not cover the facility’s room and board fee, which Norris said would total $40,000 up front — money the family wasn’t able to pay. Medicaid will fully fund placements at psychiatric facilities, but only if they are certified to meet federal standards. Currently, no such facilities exist in Ohio.

Having exhausted all other options, Norris thought the legal system could help. So one evening in 2021, after she tried to stop Hannah from hurting her 16-year-old brother and ended up with a 6-inch bruise down her leg, Norris filed charges against Hannah for unruly behavior and took her to juvenile court. There, she learned about one last resort: If she gave up custody of Hannah, child welfare would be obligated to pay for the services she needed. The judge ordered temporary custody of Hannah to Franklin County Children’s Services, and Hannah became a ward of the state.

Hannah still remembers how scared she was at that moment.

“I was terrified knowing … that there's a possibility I would never go back to my family,” said Hannah, who was placed in a crisis shelter for the first night in custody since no other placements were immediately available.

Not long after, Norris said she received a call informing her that Hannah had been transported to the hospital for a suicide attempt. She rushed to the hospital, but since she was no longer Hannah’s legal guardian, she wasn’t allowed to see Hannah or find out how she was doing.

“I was on the floor sobbing,” Norris recalled. “This is a kid that I'd spent months, years, trying to keep safe 24/7, and I wasn't even allowed to make sure she was okay. … I had no idea that that's what happens when you turned over custody of your kid.”

Hannah was later placed in several subsequent foster homes, before the state finally placed her in residential care. But the challenges didn’t end there.

A symptom of a broken system

Relinquishing custody can seem like the only option for desperate families, said Kim Lewis, a managing attorney with the National Health Law Program in Los Angeles. But families like Hannah’s are often disappointed when their child ends up “bouncing through the foster care system and sometimes doing just as poorly if not worse, without the family’s involvement,” she said.

Lewis considers custody relinquishment “a terrible thing” to advise families to do. Yet the alternatives often include a level of know-how, time and resources that many families in crisis don’t have, said Lewis, who has litigated numerous cases on behalf of children on Medicaid who are denied medically necessary services that they’re entitled to under federal law.

“These are mostly kids from families without a lot of resources,” Lewis said. “They tend to be the kids who are poor, who are in communities of color where they don’t have the ability to access some of the services others might have.”

Many families that relinquish custody are covered by private insurance plans that don’t cover mental health services their child needs, said Sheila Pires, who has spent the past several decades advising state agencies on children’s mental health reforms.

Federal and state mental health parity laws require insurance plans that offer behavioral health coverage to cover mental health services on par with other medical conditions. But enforcement of these laws varies by state. And many insurers find loopholes in the laws and get away with relying on the public sector “to act as the safety net,” Pires said.

Medicaid, in general, covers a much broader array of children’s mental health services compared to commercial insurance plans, but even in states where Medicaid offers coverage, those services are not always available and accessible. Or, in cases like Hannah’s, the treatment is not fully financed and the family cannot afford to pay.

States like Ohio are now attempting to remove some of these barriers to mental health care to prevent families from choosing desperate measures to get help. In July 2022 — the same month Norris officially regained custody of Hannah — state officials in Ohio launched its new statewide mental health initiative for Medicaid-eligible children that aims to fix what’s broken in the children’s mental health system.

The idea is simple: by ensuring appropriate services for kids and families in crisis are available and fully covered, no family will have to consider trading custody in an attempt to access treatment.

Keeping families intact

One of the states Ohio looked to in redesigning its system was New Jersey, which overhauled its children’s mental health system two decades ago using an approach that’s been found to improve outcomes for kids in crisis while cutting costs.

Liz Manley played a key role in that work. In the 1990s, Manley was a social worker at a New Jersey mental health facility, where she had a front-row seat to the heartbreak families face signing over custody of their children to access services.

The facility where Manley worked sought to provide young people with mental health disorders alternatives to overcrowded emergency departments and state hospitals. Children on Medicaid could access these services. But commercial insurers didn’t cover them, Manley said, and many of the families she met — in emergency rooms and juvenile courts — didn’t qualify for Medicaid and could not afford to pay for the treatment out of pocket.

Manley recalls explaining to many families over the years that if they wanted to get services for their child, they’d have to relinquish custody.

“And in their level of desperation, families signed those documents,” Manley said.

Manley spent the next couple decades working alongside families, mental health advocates and state officials — eventually becoming an assistant commissioner herself — to redesign New Jersey's children’s mental health system from the ground up. The system was designed to ensure services are available regardless of a child’s insurance status and without involving the child welfare or juvenile justice systems.

The state adopted a “system of care” — a framework that aims to make a wide array of culturally competent services available in a coordinated, easy-to-navigate way. The approach treats children and parents as partners in crafting their individualized treatment plans.

“It’s really about making sure you hold the hand of parents all the way through,” Manley said. “First, we listen to them. Then we help sort of organize for them, and then we step back and let families do what they do. It’s all about connecting all of those dots.”

Manley said New Jersey took inspiration from Milwaukee County, one of the earliest adopters of the approach in its program Wraparound Milwaukee, which has demonstrated success in reducing the use of institutional-based care by providing children at risk of out-of-home placements with services in their homes and communities.

Families in crisis are matched with a care coordinator who helps plug them into treatment and other services and supports and stays connected with them for the duration of their involvement in the system.

The system offers traditional treatments and therapies in inpatient or outpatient settings, as well as non-medical interventions, such as peer support groups for kids and parents, and even access to sports, clubs and other activities that provide opportunities for positive social interactions and mentorship. These kinds of services are often not covered by insurers but are important to a child’s success, Manley said.

When New Jersey first adopted this approach, it was a fairly new concept that Medicaid could help fund services that weren’t overtly medical in nature. But today, Medicaid programs in many states are recognizing that their service arrays need “to be more robust than just medical intervention,” she said.

Without effective intervention, too many children either go without treatment, or get plugged into whatever services happen to be available, which can be at unregulated facilities, Manley said. But “the wrong services at the wrong time can be equally as detrimental as having no care at all.”

Manley said she worries most about children in states that provide little oversight to residential treatment facilities. Children in residential care risk harm and abuse at facilities that, for instance, have not adopted best practices for minimizing the use of restraint, seclusion and coercion, she said.

Under New Jersey’s system, residential facilities are licensed and regulated. Providers shifted to a balance of residential, outpatient and in-home services. More children got help in less-restrictive settings, allowing the state to reserve residential placements for the children who truly needed them, she said.

One way that children and families in need of help are identified is through the statewide mobile response and stabilization service. It’s an alternative to calling 911 — 24/7 from anywhere in the state — for help during a child’s mental health crisis. Manley said mobile response services prevent unnecessary police involvement and ER visits and serve as an entry point to the children’s system of care.

New Jersey eventually created enough space in its residential facilities to enable all children who were in out-of-state placements to either transfer to in-state facilities or return home, Manley said. State data shows the number of children living in out-of-home settings, including residential treatment, foster care or other placements, decreased by 70 percent from 2006 to 2022 — from more than 10,000 to about 3,000.

The number of youth in juvenile detention also dropped from about 12,000 a year in 2003 to 2,300 a year in 2018.

In 2012, New Jersey received a federal waiver that extended Medicaid to children based on clinical needs rather than their parents’ income. By getting more children qualified for Medicaid, the state could save money because federal dollars pay at least half of the cost of their services.

This change to Medicaid eligibility is pretty unique to New Jersey, Manley said, but other states are also considering how to use the strategy “as a mechanism to get more support for young people with complex behavioral health needs.”

Manley said the state has reinvested the cost savings back into the system to make it sustainable. For example, money saved from the decrease in residential interventions was used to expand mobile response and peer support services.

“From one administration to the next, we stayed focused on moving the ball down the field a little bit more, so people weren’t reinventing the wheel,” Manley said. “They were sticking with it. What did we learn? How do we grow it? How do we make it better?”

Mental health providers and advocates in New Jersey say that while the state's children's mental health system is strong compared to other states, critical gaps remain, especially as demand for services has increased in recent years. They've called on state leaders to do more.

'I am the before and the after'

De Lacy Davis has benefited from New Jersey’s system of care and now plays a role in its continued success.

Davis is an author, activist and former school principal. He’s also a retired police sergeant with first-hand experience responding to mental health crises involving children. Back in the 1990s, he said, there were no coordinated efforts to engage with and support parents and children who were struggling amidst such crises.

“I remember in my early years in the police department, we didn't have a lot of choices,” Davis said. “We’d come in, lock you up — that was all we had.”

The experience led him to become a foster or adoptive parent and caregiver to several children, including his youngest child, Jarisa, who has bipolar disorder. She was 12 years old when she was brought to the police department for violent behavior in the early 2000s. Jarisa had suffered significant trauma as a young child, Davis said, and had spent most of her life in a group home.

One night, Davis experienced what it’s like to be a parent calling for help. And it was night and day compared to what he’d witnessed a decade earlier. He’d returned home from work to find his mom, who was helping him raise his children, frantic because Jarisa was trying to jump out their second-floor apartment window.

Davis said he called for help and a team of mental health professionals — employed to provide mobile response stabilization services in New Jersey — arrived at his home and stayed for several hours. They helped de-escalate the situation and didn’t leave until Jarisa was stable and the family had a plan for follow-up care.

He said the situation probably would have ended differently if the police had come instead.

“I live in an urban community where calling the police for a mental health crisis or behavioral health crisis is a 50/50 proposition,” said Davis, who lives in Newark. Such calls can “escalate to something violent, depending upon the officer, their level of understanding and their commitment to their mission.”

Jarisa’s follow-up plan included therapy and medication monitoring. Jarisa did end up spending time in a residential treatment program, but it was nearby, which Davis said made it easy to stay connected.

Davis’ experience informs his work today, overseeing New Jersey’s network of family support services. The parent-led organizations provide families in crisis with peer support partners, at no cost.

“What I talk about is: What I didn’t have, versus what is available now,” Davis said. “I am the before and the after.”

Davis said states should recognize that if they don't invest in services on the front end, they will pay more down the road in other systems – because children who don't get treatment and support are at higher risk of ending up homeless or incarcerated as adults.

"What is the role of government if you're not going to do those big things that some people don't have the capacity to do for themselves, right?" he said. "If [they're] not setting systems up to help families and to help children, especially the most vulnerable in a population, then what are they doing?"

Better outcomes at lower costs

Many, if not all, states report having at least some pockets of system of care efforts in place. A 2019 SAMHSA report on the use of intensive care coordination, one of the key components of the system of care approach, found 40 states said they offered the services.

But the authors noted that “some states and communities seem to be narrowing, rather than expanding, access to intensive care coordination, ultimately supporting a finite number of youth and families.” Millions of U.S. children have serious mental health disorders, but researchers estimate that only about 100,000 are served by wraparound services every year.

The push to reform children’s mental health systems is decades in the making, said SAMHSA’s Gary Blau.

The wraparound approach to children’s mental health is supported by a body of evidence showing decreases in suicide rates, substance use and other behavioral and emotional problems for children, coupled with cost savings for state and local agencies, according to data from states that have employed the framework over the years.

“They stay in school more, their attendance rates go up, their grades improve, they have more stable family environments … they have less involvement with law enforcement and in the juvenile justice system,” Blau said.

Caregivers of children served by the approach report improved family functioning, less stress and fewer missed work days. State and local agencies save money by reducing the use of inpatient psychiatric hospitalization, emergency rooms, juvenile detention, residential treatment and other group care — even after factoring in increased costs of providing care coordination and other services.

As evidence for the effectiveness of the system of care approach has grown, so has federal investment in helping state and local governments adopt it. Since 1993, SAMHSA has awarded hundreds of federal grants to support the development of the system of care approach in states, territories, counties and tribal entities. Over the past three decades, the program has grown from about $5 million a year to $125 million, Blau said.

Funding is important, but money alone will not solve the nation’s youth mental health crisis. State policies and on-the-ground practices must also shift to support the system of care framework, said Sheila Pires, who advises states on system of care reforms.

She said she has seen community-level initiatives struggle when the system of care approach is not adopted statewide. For example, if Medicaid doesn’t cover a broad array of services and if the many agencies that at-risk families touch on aren’t coordinating with one another.

States also can struggle if providers aren’t equipped to provide individualized care centered on children and families, being mindful that needs can differ across communities.

“There are all of these things that have to happen at a policy, financing and frontline practice level, in order to actually make a system of care framework real,” Pires said. “Otherwise, it’s a set of values and principles, you know, like world peace, that everyone buys into. But guess what: There’s not world peace.”

Even when the framework rolls out statewide, Pires said states can lose momentum going from one administration to the next.

Louisiana implemented a children’s system of care modeled on New Jersey, Pires said, but the state lost providers because reimbursement rates for services weren’t high enough. After the pandemic hit, more providers left. State funding was cut and now the system in Louisiana is “kind of wobbly,” Pires said.

“It’s not that they aren’t committed to a system of care,” she said. “But if these other things change, then you’re left with values and principles that have no actual foundation.”

Centering support around families

Among the many positive outcomes resulting from New Jersey’s system of care: elimination of the practice of custody relinquishment to access mental health services, Manley said.

The practice has not been abolished nationwide, but many states report progress in addressing the issue.

Half a dozen states report custody relinquishment never occurs, according to a 2020 analysis by the University of Maryland, and Ohio leaders hope their state will join them once the statewide OhioRise initiative is fully developed.

Ohio is partnering with a managed care organization Aetna Better Health, a private insurer, to provide a broad array of wraparound mental health services to children eligible for Medicaid, a federal-state program that provides health coverage for low-income people and people with disabilities.

Aetna pays providers for traditional services and can also tap into a new Ohio Medicaid service, called “Flex Funds,” to pay for non-medical services, such as after-school sports and activities that would not typically be covered by Medicaid.

OhioRise serves only Medicaid-eligible children. But the state has received a federal waiver that extends Medicaid eligibility to families earning more than the normal Medicaid income threshold if their child has a complex mental or behavioral health condition and qualifies based on their treatment needs.

Ohio officials say the goal is for services to be built out across the state so that no matter where a child lives, they will have access to them.

This year, Ohio also plans to introduce Psychiatric Residential Treatment Facilities, which are non-hospital facilities that provide inpatient-level care to people 21 or younger and must meet stringent federal standards. Additionally, $16 million a year in state funds are available on a case-by-case basis to Ohio families that are otherwise unable to access mental health services for their children.

Lisa Norris said she understands change can’t happen overnight, but she has been frustrated with what seems to be a slow rollout of OhioRise while she tries to help her daughter.

After returning home last summer, Hannah cycled in and out of the hospital for repeated mental health crises. Norris said she struggled with paranoia, worsened anxiety, and PTSD, in addition to suicidal and homicidal thoughts.

Last fall was particularly challenging for Norris, who works full-time, because neither the local school district nor a nearby residential facility that previously treated Hannah would take her.

“I really believe at this point, if nothing changes, Hannah's going to end up seriously hurt, my health is going to completely give out or our family is going to be financially destroyed. Because we're on the verge of all of that,” Norris said at the time.

OhioRise coordinators reached out to dozens of residential facilities and, by the end of 2022, identified a handful of out-of-state facilities that were willing to take Hannah. In January, Norris and Hannah made the 15-hour drive to a facility in Oklahoma. “Our only shot at hope,” Norris said. Public funding is paying for the treatment, which Norris said she’s hoping will last no more than 6 to 9 months.

Prior to leaving for Oklahoma, Hannah said she looks forward to the day when she’ll be “able to go back to school and go do normal things like a normal teenager,” like take art and music, and even attend math class. She hasn’t been in school at all this year.

The toughest part of the past few years, Hannah said, is knowing that she hurt her family by doing and saying things she didn’t mean.

While Hannah doesn’t like the idea of being back in residential treatment, she’s willing to go, because she wants to get well.

“I've gotten a tiny bit better over time,” she said. “But I still don't feel like I'm better.”

Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. This story was published in partnership with the Center for Public Integrity, a nonprofit, nonpartisan investigative newsroom, as part of the Carter Center’s Mental Health Parity Collaborative.

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