During my twenty-five years as president and CEO of the Jewish Healthcare Foundation (JHF), I have learned how to help people navigate the health care system. But I have struck out miserably when it comes to helping people facing behavioral health issues. I’ve had the pleasure of watching many talented staff members start and raise families of their own. One employee of the foundation, located in Pittsburgh, Pennsylvania—let’s call her Amy—is a doting single parent to Joe, a towering teenager with a wry sense of humor and dyed, technicolor hair. Images of Joe—from football games, camping trips, and long-ago school picture days—line Amy’s desk. Phone check-ins between mother and son, who is now age sixteen, are a lunchtime staple.
Last fall, however, Amy became concerned about Joe. He distanced himself from friends and family, quit his part-time job, and started skipping school. One day, Amy came home and found that Joe had spent two hours breaking into a gun safe and, after contemplating suicide, put a weapon on the floor and returned to his room. Amy took Joe to a local psychiatric hospital for children and adolescents, where he was admitted for a week and discharged with a care plan, a psychiatrist and therapist, and medications for depression and attention deficit/hyperactivity disorder (ADHD). He returned to school. He seemed OK.
On a Sunday in mid-March, two of Joe’s friends died—one in a motocross accident, the other in a shooting. He was inconsolable. On Monday, Joe ingested all of his pills and took off into the woods. He was eventually found by local police and friends, sick, but not seriously harmed, while Amy made frantic, unreturned calls to Joe’s psychiatrist and therapist. Joe returned to school by Wednesday, but he called and asked Amy to remove all sharp objects from the house because he wasn’t feeling safe. On Thursday, Amy took Joe to a nationally known center for psychiatric and addiction services.
After an eight-hour wait for intake, staff said that they wanted to admit Joe for three days—but there were no beds available. She and Joe could stay in the waiting room in hopes of there being an opening, but staff warned that it could take days, maybe longer. They gave Amy a list of other inpatient treatment facilities with available beds, most of which were in Ohio or other surrounding states. Staff eventually connected Amy with a local, intensive outpatient treatment facility that promised to evaluate Joe the next morning. When Amy called that facility back, she was told that Joe would have to wait seventeen days for intake.
Joe remained at home for seventeen days, closely cared for by family but not returning to school upon the recommendation of his psychiatrist. When staff at the facility finally did evaluate Joe, they wanted to place him in a full-day program—but there were no openings. Joe’s therapist recommended a separate program that integrates educational classes and treatment for behavioral health challenges, with the goal of transitioning young adults back to their normal school and activities. But Joe’s high school wouldn’t provide needed approval for the program, saying that Joe hadn’t attended class enough to be properly evaluated by school staff. The school staff said that he was a truant who might not graduate, but he wasn’t seriously emotionally disturbed.
The system has failed both Joe and Amy. Unfortunately, as the JHF probed deeper into the issue, we found that Amy’s story was not just an unfortunate anecdote. Many teens and their families are grappling with issues of mental illness, alcohol and substance use, and self-harm during this critical phase of human development. Few teens are accessing treatment, and those who do are not getting the sort of help that allows them to lead fulfilling, productive lives. We’re in the midst of a public health crisis—one that the JHF, our local community, and the nation can’t afford to ignore.
Chances are, you know a teen who’s struggling with a behavioral health issue. Nearly half of US teens experience some sort of mental disorder over a lifetime, and about twenty percent of (all) teens experience a seriously debilitating mental disorder during their lifetime, according to research cited by the National Institute of Mental Health. About 17 percent of youth in Pennsylvania report binge drinking during the past month, and nearly 9 percent of adolescents report using illicit drugs during the past month, according to the Substance Abuse and Mental Health Services Administration (SAMHSA). Suicidal thoughts and self-harm are pervasive, too, with the Centers for Disease Control and Prevention (CDC) estimating that 17 percent of US high school students have seriously considered attempting suicide over the past year. More than a third of teens recently surveyed by the Allegheny County (Pennsylvania) Health Department (see p. 24) admitted that they hurt themselves on purpose over the past year.
We’ve also found that access to behavioral health treatment is limited, and frequently ineffective—particularly in our region of southwestern Pennsylvania. Among adolescents in Pennsylvania who have been diagnosed with a major depressive episode, just about 42 percent received treatment within the past year, according to SAMHSA. Among children and adolescents in Pennsylvania who did receive treatment for mental health conditions in general, in the public mental health system, about 37 percent said that their functioning has not improved. (Nationally, that percentage is about 31 percent.) Treatment rates are even bleaker in Pennsylvania for alcohol and substance use issues, SAMHSA says.
At the JHF, we have an extensive record of connecting stakeholders and implementing programs to improve the physical and behavioral health of adults (documented in the most recent edition of our ROOTS magazine). Now, we’re looking to move further upstream, so that kids and teens receive the help they need to thrive in adulthood.
In May 2016, the JHF kicked off a $500,000 multiyear adolescent behavioral health initiative, which is designed to spark a community dialogue and strengthen the prevention/treatment services available to kids and teens. We’re engaging fellow health care funders, families, health care providers, and community partners to create an inventory of local services, identify holes in the safety net, champion and spread best practices, discover creative technology solutions, and advocate for policy and payment changes that will support better outcomes. The JHF has formed a distinguished advisory group to accelerate achievement of these goals.
The consequences of not addressing the adolescent behavioral health crisis are severe and may span generations. Half of all mental illnesses begin by age fourteen, according to the World Health Organization. Yet, the average time between when teens presented behavioral health symptoms and when they received treatment was about a decade, according to research that was published in 2005 in the Archives of General Psychiatry and funded by the National Institute of Mental Health. When left untreated or treated ineffectively, such problems can alter the course of a young person’s life—they can lead to isolation, stigma, lower educational and professional achievement, poor reproductive and sexual health, addiction, and premature death. Their loved ones suffer emotionally, physically, and financially as well.
Behavioral health challenges early on don’t condemn kids and teens to a lifetime of hardship. They can recover, and even flourish. They can lead our cities, invent the next game-changing app, or cure diseases. I think of the coordinated system of care that has been created for children on the autism spectrum in Pennsylvania, thanks to parents and other advocates who destigmatized the condition and pushed for policy changes. Behavioral health demands a similar rallying cry.
Simply put, we’re not doing a good enough job of getting adolescents and their families the help that they need, when they need it. Joe and Amy are still waiting, as are millions of others. Our children and teens deserve better. The JHF and the Pittsburgh Regional Health Initiative are seeking partners, best practice examples, and answers.