Families take drastic steps to help children in mental health crises
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When
Norris describes Hannah as a fearless, kind and funny child who loves art, animals and helping people. Hannah, now 13, wants to be a first responder when she grows up. She dreams of saving up enough money to eventually open her own restaurant.
This story also appeared in Here and Now, Side Effects and Slate.
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
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
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
It's an extreme situation that's reflective of a much larger issue. In the
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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
"Systems of care save lives," said
"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,
If this program had launched a decade earlier,
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
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
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
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
" These are mostly kids from families without a lot of resources… in communities of color where they don't have the ability to access some of the services others might have."
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
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.
One of the states
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
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.
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Related story
Mental Health Parity Collaborative
The Mental Health Parity Collaborative is a partnership between
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"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
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
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
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.
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,
This change to Medicaid eligibility is pretty unique to
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
"I am the before and the after"
De
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
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
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
"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
The push to reform children's mental health systems is decades in the making, said SAMHSA's
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
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
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.
Funding is important, but money alone will not solve the nation's youth mental health crisis.
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.
"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
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
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.
This year,
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
Prior to leaving for
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."
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