Facing a broken mental health system, many U.S. teens fall off a dangerous ‘cliff’ in their care

An 18th birthday can mean many things. It’s a formal step into adulthood. It’s the newfound right to vote, get a tattoo, join the armed forces, be called for jury duty.

It’s also what some mental health providers know, anecdotally, as “the cliff,” the cutoff at which teens with mental health conditions are flung into adulthood, often without any preparation for the challenges to care ahead. Young adults are among the most at risk of major mental illness, but are among the least likely to get mental health care — which experts say is a huge, pressing problem.

STAT spoke with teenagers, young adults, and mental health providers, and experts across the country to understand the experiences of young people with mental health conditions as they transition from adolescence to adulthood. It’s a time when they’re flooded with advice — from parents, from teachers, from the speakers at their high school graduation ceremonies.

But young people said no one prepared them for the often-complicated reality of navigating mental health care in adulthood: finding a therapist, filling prescriptions, scheduling appointments, shelling out co-pays.

The data lay bare those difficulties. Young adults ages 18 to 25, for example, are more likely than any other adult age group to report having major depression in the past year — but the least likely to have received treatment. In 2018, just under half of 18-25 year olds with major depression said they got treatment for their condition.

“We’re missing out on this major opportunity to support young people while mental health distress is emerging,” said Christine Moutier, a psychiatrist and the chief medical officer of the American Foundation for Suicide Prevention.

Those challenges have only been exacerbated by the coronavirus pandemic, which has not only upended the way mental health care is delivered, but has also created conditions that could worsen existing mental health issues or lead to new ones. The crisis has also shuttered schools across the country, complicating matters for teenagers who access counseling through school.

Without the right care, young people are at risk for a slew of problems, from housing instability to disruptions to their education.

“This is the age at which kids stay on the curve, even with their illness, of the traditional developmental trajectory. Or they start to drop off treatment,” said Mark Schechter, a psychiatrist at North Shore Medical Center in Salem, Mass.

“And when they start to drop off, all of these bad things start to happen,” he said.

Kathleen Donohue started therapy in high school. She was depressed, had self-harmed, and had misused prescription drugs. Her panic attacks, which started in elementary school, flared up in high school. She’d go to the health clinic and sit, breathing in and out of a paper bag.

Donohue and her counselor met regularly, working on coping skills, building new relationships, and processing trauma from Donohue’s past. She got into college, threw away all her clothes, and went thrift shopping for a new wardrobe. She was desperate for a fresh start and was convinced college would be one.

But moving didn’t mean her mental health conditions went away.

“I just walked out of a traumatizing, toxic life, and then just thought I could make it on my own without getting treatment,” said Donohue, now a 23-year-old Florida college student.

She doesn’t remember her therapist or anyone else ever talking to her about how hard that transition might be or how she could get therapy in college. The changes quickly took a toll. She was anxious, depressed again, and having suicidal thoughts, but wasn’t getting help.

“I knew nobody in town … I didn’t know where to get therapy. I really was a kid who didn’t know where to go,” she said.

Looking back, she wishes she had searched online for counselors. But she was young, on her own, and swamped with classes and work. Even if she had found a provider, she doesn’t know how she would have paid for it.

“I didn’t have money to go see a doctor when I needed to, I barely had money for textbooks, so counseling was out of the question,” she said.

Donohue’s anxiety grew so intense that it got in the way of her daily life. During that time, the relationship she was in became abusive. She started self-harming again, developed an eating disorder, and attempted suicide.

Her story is reflected again and again in the limited data available on mental health care among young people. In 2018, nearly 9% of 18 to 25 year olds in the U.S. reported having a major depressive episode in the past year so severe that it hindered their day-to-day life, according to federal data. Just over half of those young adults reported receiving treatment.

There have been only a smattering of studies dedicated to looking at the transition from youth mental health care to adult psychiatry. Some have found a “precipitous decline” in care after teens turn 18. Others suggest that while treatment rates decline in transition-age youth, those changes aren’t concentrated right around a teen’s 18th birthday. Many of the most robust studies are based on long-outdated data.

But mental health providers say it’s clear, from their practice, that low rates of mental health care after teens transition to adulthood presents a significant problem.

There are a number of factors likely fueling those low treatment numbers. Many teens get mental health care through private providers, but those who move away from home often stop seeing them. Others get care through services specific to children and families, like school counseling or the foster care system.

Age 18 is a particularly difficult time for a person to drop out of — or lose access to — mental health services. Those age 18 to 25 are more likely than the general adult population to report having serious mental illness, having serious thoughts of suicide, or to have attempted suicide. And as is the case across much of the U.S. population, the suicide rate for young adults has risen in recent years, climbing 76% between 2007 and 2017.

Those numbers put in stark relief the urgent need to make sure teens have a bridge to mental health care in adulthood, experts said.

Donohue started getting counseling two years into college, after becoming involved in a group for young Christian women. A staffer who was getting a master’s degree in mental health counseling took Donohue on as a patient during her training.

Because the woman was an intern provider, the sessions were cheap enough that Donohue could scrape together cash to pay for them. With the help of therapy, she has fewer episodes of depression, fewer panic attacks, and a better understanding of her mental health conditions and how to cope with them. She’s now a graduate student intern who, as part of her own training, provides affordable therapy at a private practice. She graduates in December.

“I slowly, slowly got into such a better place,” she said. “Thank God [counseling] happened. But it was a little bit late.”

Even when teens are able to make the jump to adult mental health care, the actual care they receive can look very different from what they’re used to with pediatric psychiatry. That, too, can be jarring — and discourage young people from keeping up with their care.

“There’s a big disconnect between the pediatric psychiatry world and the adult psychiatry world,” Schechter said.

Adolescent and adult care both hinge on cognitive behavioral therapy, counseling, and treatment with medications. But pediatric care places much more emphasis on parents, who are often involved in decision-making and care.

“Me, my therapist, and my parents maintain a pretty open triangular loop,” said Colleen Sherry, a 17-year-old high school junior in Virginia who has obsessive compulsive disorder. Her parents take her to therapy, and talk to her therapist for the last 15 minutes of her hour-long appointment. She’s been seeing her therapist since sixth grade and hopes to keep seeing her after she turns 18 in October.

But many parents and teens aren’t prepared for the changes that come with being shuffled into adult care.

“You’ve been the glue for your kids — making sure they get their medication, advocating for what they need, and suddenly no one is listening to you,” Schechter said.

“For the kid, it becomes: How do I track appointments? How do I manage my medications? How do I talk to a provider? How do I track my symptoms? What if the doctor doesn’t seem to be listening to me?” he added.

Those challenges are often tied up with other major changes that happen around the same time, like graduating high school and heading to college, or getting a job and moving out of a parent’s home.

That was the case for Teyah McKenzie, a 25-year-old from Ohio. After being hospitalized and diagnosed with bipolar disorder in high school, she started getting mental health care, which helped stabilize some of her symptoms. But then her therapist went on maternity leave, and McKenzie started college.

At 18, she didn’t understand how school might affect her mental health, or that she might need more care.

“I thought I was just gonna be able to go in and get my work done,” she said. “I could have been more prepared,” she said.

Her anxiety made it difficult to go to some of her lectures. She started drinking and using drugs again, as she had in high school, before her diagnosis. She’d take Adderall in the mornings to stay awake. She failed several classes.

None of it seemed all that out of the ordinary to her — it was college, and the issues seemed common among students. But now, she sees the changes as signs of her mental health tumbling as she went untreated.

McKenzie transferred schools after her first year, and dropped out after her second. She was working in a restaurant when her mom, who had become involved with the National Alliance on Mental Illness, asked her to speak about her experiences at a local event. She now has a job running the social media account for her local NAMI branch and helping out in their office. She’s able to access therapy through her job.

Experts said while the cliff affects many young people, others are able to make smooth transitions. They’re able to keep seeing their regular providers, or have a plan in place to shift to a new one. And for a seemingly smaller fraction of young people, including Lee Piechota, turning 18 is actually, in some ways, a boon for mental health care.

Piechota, a 21-year old who lives in northeastern Pennsylvania and is transgender, grew up in an abusive household. At his mother’s suggestion, he started seeing a therapist around 13 or 14 who, to Piechota, seemed to try to change the subject or minimize his feelings when he brought up issues related to being transgender, like wanting to cut his hair and not being allowed to do so.

Because he was a minor, the therapist frequently tried to loop Piechota’s mother into the appointments and would discuss him in front of his mother. That backfired.

“I kind of shut myself off a little more,” he said. He stopped going to therapy for about a year.

But when Piechota turned 18, he started seeing a new, much more validating therapist. He stopped living at home full-time, and the more welcoming environment made it much easier for him to make progress in his therapy. He started to take testosterone, a process his new therapist helped with.

Now a speech therapy student, Piechota has also volunteered his time to train mental health providers about working with young people who are transgender. He also now leads two mental health support groups for teens.

“It’s something I went through, and talking about it can help other people recognize what they’re going through,” he said.

It’s surprisingly difficult to measure the exact effect that turning 18 can have on mental health care. Though there are several large, well-respected federal research studies and insurance claims databases that look at mental health care in the U.S., nearly all of them break up “adolescent data” and “adult data” — often splitting the two groups right at the age of 18.

Those that do include both age groups, such as the National Survey on Drug Use and Health, tend to ask children and adults different questions, making it difficult to compare how mental health conditions and care change as young people pass the cutoff into adulthood.

There’s also relatively little research tracking the specifics of how young people access mental health care, how they pay for it, or how that changes over time as they enter into adulthood.

Experts say that has to change — particularly given the rising rate of suicide among young people.

“We should be really be looking at this as a society,” Schechter said.

In an ideal world, experts said, it would be easier for mental health providers — particularly those at outpatient and inpatient facilities that only treat children — to keep seeing patients until age 21 or even older. Some children’s mental health centers and providers already do that, or will at least keep 18-year-old patients on until they graduate.

But for other providers, many of whom are already stretched thin, it would be exceedingly difficult to keep seeing patients past that point. That’s particularly true for allowing 18-year-olds to stay in inpatient psychiatric beds in adolescent units, which are already in short supply. They can also be admitted to adult units, whereas providers have nowhere else to place younger patients.

“Unfortunately, right now, with the incredible demand for services, it’s hard for programs like us to do that,” said David Axelson, a psychiatrist who runs the behavioral health and psychiatry program at Nationwide Children’s Hospital in Columbus, Ohio.

The hospital announced plans late last year to open a dedicated pediatric mental health facility. Right now, when teenage patients graduate, the hospital often refers them for therapy with an adult counselor and, in some cases, might allow them to keep the same psychiatrist for another year or two to ease the transition.

“That’s not ideal,” he said.

There’s also a need for policies and programs to make sure transition-age youth get the mental health care they need. Experts said they are encouraged by the significant uptick in what are known as first episode psychosis programs, which aim to provide early, comprehensive care to young people who have recently experienced a psychotic episode for the first time. Studies have shown that young people who are funneled into such programs stay in treatment longer, see their symptoms improve more, and are more likely to stay in school or at work than young people in standard mental health care.

Congress has significantly increased funding for first episode psychosis efforts in recent years through the Community Mental Health Block Grant Program. The Substance Abuse and Mental Health Services Administration, too, has started funding programs across the country in recent years to prevent transition-age youth with mental health conditions from falling through the cracks.

But experts said there’s a need for more dedicated efforts, as well as increased awareness about the cliff itself. Mental health providers should be talking early, and thoroughly, with parents and teenagers about what the transition will look like. There shouldn’t be a cliff — there should be a bridge.

“It should cross [a provider’s] mind a year before they discharge their patients,” Schechter said. “They should have a whole plan for the transition.”

Many of the young people who spoke with STAT said they talk openly about their own experiences because they want other young people to know they’re not alone, that mental health conditions are common, and it’s good to get help, especially during times of big transition.

“I just tell kids to be soft on themselves,” McKenzie said. “Be good to yourself, because it’s hard.”

If you or someone you know is in crisis, call the National Suicide Prevention Lifeline at 800-273-8255 or text HOME to 741741.