This story is part of The Oregonian/OregonLive’s 10-part series on youth mental health. To read other stories in the series, follow the links at the end of this piece.

Bethany Purkapile has three younger siblings, adopted from three different sets of parents. The oldest, 19, just graduated from high school. The younger two, both 15, still attend Portland Public Schools.

All three have both developmental disabilities and mental health diagnoses. For years, the family has struggled to access resources for them.

Purkapile said that when her siblings’ needs go unmet, mental health providers tell the family, “It’s a broken system, but we’re doing the best we can.”

“That’s not helpful,” Purkapile said, especially “when you’re begging for help.”

“All of these services take so much time” to arrange, she said, but “when you get into crisis, you don’t have that much time.”

Purkapile’s family isn’t alone. Even in metro Portland, Oregon’s wealthiest and best-resourced area, preventative and restorative mental health services for children and youth consistently fall short of the need.

Oregon ranks near the bottom in a nation that is generally short on resources for addressing mental wellness. Mental Health America ranks states based on their prevalence of mental illness among young people and children’s and teens’ access to mental health care. In 2016 and 2017, Oregon had the highest rate in the nation of youth suffering at least one major depressive episode, 16.3 percent, a national health survey found. Most young Oregonians hit with serious depression did not receive treatment for it, earlier versions of that survey found.

While Oregon ranked 12th nationally for access to mental health care, federal health survey data shows that the available care in Oregon still isn’t enough.

Those involved in the state’s youth mental health care system say Oregon hasn’t done enough to fully understand the scope of need throughout the state.

“There’s no central data system that would allow you to determine how many kids we’re talking about,” said Jeff Carr, chief executive of Oregon nonprofit mental health provider Albertina Kerr.

Carr served on Gov. Kate Brown’s Youth with Specialized Needs Task Force that met for six months last year to develop better strategies for child welfare. The task force recommended developing data systems to better understand youth mental health and child welfare needs and also proposed channeling more resources into child welfare. Lawmakers passed bills to accomplish both those objectives in the 2019 session and the governor signed them into law.

It’s a start, mental health advocates say.

Oregon has had a Top 10 rate of youth depression for years. Suicide has been the second-leading cause of death for Oregon’s young people, particularly those in the high school to college age range, since 1981.

Despite the longevity of the problem, Kristi Dille, president of the Oregon Parent Teacher Association, describes state-level collaboration around mental health solutions as “newborn.”

In her 20 years in roles at various levels of local and state PTAs, Dille has advocated for better youth mental health care.

“It breaks my heart because we have these kids who are reaching out and the help isn’t there,” she said.

Inside "Rosayn's" room in the Kidwell's Portland home. (Photo by Beth Nakamura/Staff)

Barriers to care

Advocates and parents say that youth in need of mental health care run up against multiple barriers: long waitlists, a lack of providers and qualified specialists, shortages of spots in higher-level treatment and private insurance that often doesn’t cover the necessary care at rates affordable to the average family.

Dille’s recognition of those complications comes, in part, from personal experience: Her daughter has bipolar disorder. Since she first noticed her daughter Briauna needed extra help when she was 4, Dille said she has had to constantly advocate to get her daughter’s needs met, both in Portland Public Schools and in the medical system.

Briauna cycled in and out of the emergency room for years before she finally found a provider who would take her needs seriously, Dille said. Waitlists, for everyone from school guidance counselors to child psychiatrists, are long. Even with what Dille describes as good private insurance, Briauna constantly struggled to access the right care.

At 18, Briauna received her bipolar disorder diagnosis, 14 years after the Dille family initially noticed their daughter’s needs were more significant than the average child’s.

“I fell to the floor and cried,” relieved to finally have a diagnosis, Dille said.

Dille’s daughter is now 21 and, like many other young people in Oregon, still struggles to access care for her mental health.

“There’s a lot of dead ends in our system,” said Chris Bouneff, director of the Oregon branch of the National Alliance for Mental Illness.

Because there are shortages of both preventive and acute care, many youth who experience a mental health crisis end up in the emergency room.

The emergency room “is probably the last place you would want a kid in a mental health crisis,” said Carr, of Albertina Kerr. They’re designed for physical health emergencies, not mental health crises, he said.

Getting young people into intensive mental health treatment before they need hospitalization is difficult due to the cost. “They have a great payback when they keep kids out of the hospital. But insurance providers are very, very stingy with those because of the expense,” said Margaret Puckette, a Portland-based parent counselor. Before insurance companies approve intensive mental health treatment, often they must see a paper trail of hospitalizations, Puckette said.

Kelly and Martin Kidwell have struggled with their young daughter's mental health for years. The family’s experience illustrates how scarce the resources to help young people in psychiatric crisis are, even in Oregon’s biggest and wealthiest metro area, and how that scarcity impacts families. (Photo by Beth Nakamura/Staff)

Kelly and Martin Kidwell are on the front lines of the struggle to get insurance to cover mental health treatment. Their 9-year-old daughter has been diagnosed with bipolar disorder along with a learning disability and sensory issues. Finding an insurance plan that could cover her needs was difficult, they said. The Kidwells’ insurance costs the family $800 a month in premiums alone. Due to their daughter’s medical and mental health bills, as well as the fact Kelly Kidwell can’t work because her daughter’s needs are so high, the Kidwells recently declared bankruptcy.

Even with the expensive insurance, their daughter cycled in and out of the emergency room before finally getting a spot in treatment after a 16-day wait in the hospital. Read more about their story, here.

Kyle McMann, who serves as chief of the fire department that serves unincorporated Marion County, an emergency room nurse in Corvallis and a paramedic in Salem, says emergency room protocols for treating a patient in a mental health crisis can often cause more trauma.

When a person comes in to the emergency room because they’re suicidal or in the midst of a serious mental health crisis, McMann said, all their possessions are taken from them and they’re told to change into a hospital gown. Then they’re sent to a small room with a bed, maybe a TV.

After screening a patient for medical concerns, ER workers require the patient to wait for a mental health screener.

“They may be here in an hour, they may be here in 12 hours,” McMann said. “It may be midnight before they come.”

If the mental health screeners can develop a safety plan with the patient, they’ll send the patient home. If they determine the patient needs further care before discharge, the person gets put on a waitlist for treatment services, which can mean weeks spent waiting in an overcrowded emergency room. Hospitals are short on psychiatric beds, especially pediatric ones, McMann said.

Some Portland hospitals have shorter wait times for mental health screenings. At Legacy Health emergency rooms, the network has created a 24/7 psychiatric consult team for patients that can assess their mental health needs within four hours of their arrival. But the rest of those challenges still exist in the Portland metro area as well, Legacy Health officials said.

Lynnea Lindsey, director of behavioral health for Legacy, said she has seen behavioral and mental health services underfunded by insurance for years, despite Oregon’s law requiring parity in coverage of mental and physical health. As a result, finding a spot in the right kind of treatment is difficult for people who need care, and kids end up waiting for any kind of mental health treatment, she said.

“It backs up the whole system when you don’t have people placed at the right level of care,” Lindsey said.

Bronwyn Houston, president of Randall Children’s Hospital in the Legacy Health network, said the hospital sees 100 to 150 youth a month with mental health needs in their emergency room, which isn’t devoted to psychiatric needs. Their needs range from panic attacks to suicide attempts.

The number of youth seeking psychiatric care at the hospital has increased “exponentially” in the past five years, and while the hospital has been hiring new staff to deal with pediatric mental health, demand still outstrips the available services, Houston said.

Unity Center for Behavioral Health, a cooperative project among many hospital systems, opened two and a half years ago with a goal of better serving Portlanders’ psychiatric needs. But it rarely has open beds for adolescents, Houston said. And the Unity Center isn’t designed to serve patients younger than 9 at all.

Even as the stigma around mental health issues decreases, there’s still a persistent belief that mental health isn’t as important to a child’s quality of life as his or her physical health, Houston said.

“If a child breaks an arm, we can see it,” Houston said. “With mental health issues, you can’t see it.”

But that doesn’t make mental health struggles any less severe. As Lindsey acknowledged, a lack of proper mental health care “can be fatal,” as seen in Oregon’s rising youth suicide rate. Even when not fatal, untreated mental health needs typically lessen children and teen’s quality of life as they age into young adulthood, placing an even greater strain on available resources for adults.

Oregon youth could avoid this fate, stakeholders across Oregon’s mental health system say, if powerbrokers were to take a holistic approach to developing and funding the mental health system, bolstering resources from prevention to early intervention to crisis treatment.

“When there’s a problem, people want a silver bullet,” said Jeff Carr of Albertina Kerr. But that doesn’t exist for a system as complicated youth mental health, he said. “What you really need is a system of care.”

--Casey Chaffin; cchaffin@oregonian.com; @todaycaseysays

.

Day One: In Oregon, academic pressures, existential fears help explain rising rates of suicide, other mental health conditions

Also: Tips for attaining or maintaining mental wellness, from teens who practice them

Day Two: Child or teen needs mental health treatment? In Portland area, they face agonizing waits

with Three Families’ Stories

A beloved child with big needs faces daunting shortage of available help