Mental illness: A quiet storm
Today’s youth are exhibiting mental and behavioral health problems in growing numbers, and the system is ill-equipped to deal with the surge. Nationwide Children’s Hospital hopes its $158 million solution will expose a dilemma that has multiplied in the dark.
Sarah was bright, but shy and socially anxious. She didn’t talk much to her Westerville classmates. She was in a gifted elementary program, which only made her feel separation from her peers. It was more than that, though; she felt like she was disconnected from everyone. It wasn’t that she was unhappy. Truth be told, she wasn’t much of anything. Just numb.
As she grew older, her emotional state deteriorated. She got straight-As in the eighth grade, but felt like she should be doing better, like she was letting everyone down. Sarah thought she was fat, and she began eating less. The negative thoughts churned and churned, exhausting her. She feigned emotions, even laughed sometimes, but it wasn’t genuine. At age 13 she started to think about killing herself. She didn’t tell anyone about how she felt. She had no name for it.
Cutting herself helped her escape the numbness. The pain was predictable, a release, a feeling. She cut across her hips, where no one could see.
The problem was hers. Hers alone.
Terry Russell sips coffee from a Styrofoam cup and wonders aloud how much progress he’s really made in changing people’s perceptions of mental illness in his 43 years of work. He’s a passionate advocate and lobbyist who serves as the executive director of NAMI Ohio, the state headquarters of the National Alliance on Mental Illness, the nation’s largest grassroots organization supporting those with mental illness and their families. He sees reasons for both optimism and plaintive discontent. “People were starting to get to understand these are illnesses like any other, but I think our world—the news media, the immediate availability of information—has made it worse,” he says. He’s talking about a recent shooting in Delaware County and how everyone will immediately assume the gunman was mentally ill. Hell, even Russell assumes it. But on a deeper level he’s discussing stigma, the mistaken belief that mental disorders spring from a character flaw—a belief that causes shame and alienation. Russell has felt that shame; his older brother’s schizophrenia held his childhood home hostage.
He praises Nationwide Children’s Hospital’s plans for a $158 million Behavioral Health Pavilion, an eight-story facility dedicated to childhood and adolescent behavioral health—a sweeping term that covers mental illness, substance abuse and developmental disorders such as autism. He’s more excited by the prospect of the new pavilion than any other program he’s ever seen. And then the discontent surfaces again. He knows the addition of this world-class health center still won’t meet the staggering need.
In 2014, the National Institute of Mental Health estimated that 13.1 percent of children 8 to 15 years of age had a diagnosable mental disorder within the prior year, and 21.4 percent of 13- to 18-year-olds had a seriously debilitating disorder at some point in their childhood. Dr. David Axelson, chief of Behavioral Health at Children’s Hospital, says that suicides among youth are up 40 percent across the country in the last eight years.
Between 2007 and 2013, the need for youth crisis services increased about 33 percent at Netcare Access, the county’s 24-hour mental health crisis intervention center, says Kythryn Carr Hurd, the vice president of clinical services for the Alcohol, Drug and Mental Health Board of Franklin County, known as ADAMH. It was too much. In June 2015, Netcare turned youth psychiatric crisis services over to Children’s Hospital and Ohio State University’s Wexner Medical Center, realizing it had to focus on adults-only needs. Axelson says the emergency department at Children’s is now seeing 300 percent more kids presenting with behavioral health problems—like suicidal concerns, aggression and extreme anxiety—than a decade ago.
Sarah may have felt alone in her struggle. But she has plenty of company.
The causes of the escalating need are still up for debate. Axelson says the average age of first-time fathers has grown older, thus increasing the risk of the child developing schizophrenia, autism and bipolar disorder, though the extent of that effect remains unclear. The Centers for Disease Control and Prevention report that childhood obesity has doubled in the past 30 years, and local pediatrician Dr. Darryl Robbins thinks that has led to higher rates of anxiety and depression. The opiate epidemic may have an effect in several ways: upending children’s home lives, providing a dangerous avenue for self-medication and sapping scarce health care resources.
Several sources point to increased awareness and recognition of behavioral health problems, a positive trend that drives families to seek help for kids who previously would have gone untreated. The rise of social media has played a large role; it creates a constant onslaught of bullying and public shaming that children don’t have the ability to manage developmentally, says Pam Scott, the director of clinical development at the Buckeye Ranch, a local mental health service provider and youth residential care facility. The 2008 recession is another potential culprit—its timing mirrors the onset—because economic stress on a family, especially if it causes housing insecurity, can have a traumatic psychological effect on a child. But the mental health field is still young, Scott says, and there’s so much they don’t yet know.
In the past, patients with serious mental health disorders languished in state-run hospitals. But the deinstitutionalization that took place from the early 1960s to the late 1980s shifted care to a community-based model. Deinstitutionalization was seen as a positive step toward treatment, but corresponding behavioral health services did not rise to fill the gap, says Nancy Cunningham, the Behavioral Health community engagement manager for Children’s Hospital. Ohio shut down all state-run inpatient programs for children and adolescents by the early ’90s, according to a 2010 report by the Ohio Department of Mental Health. The number of youth psychiatric beds run by private providers in the 19-county region around Columbus also decreased by 53 percent from 1997–2008. As behavioral health emergency visits have shot up precipitously, kids are often left waiting for inpatient psychiatric treatment.
To make matters worse, the behavioral health field is struggling to find workers across all levels of care. Scott believes that fewer college students are ready to incur the expense of a graduate degree to enter a field that’s notoriously underpaid, especially when many organizations are nonprofits like the Buckeye Ranch, which works with low-income families and can’t afford to pay comparable rates.
As the youth mental health system has become too fragmented and understaffed to meet growing demand, some of the burden has shifted elsewhere.
Robbins scans the list of patients from his Gahanna practice one afternoon in September. He counts four kids with mental and behavioral health issues, out of a list of 14. It’s a pretty average day for the pediatrician of 41 years, who has witnessed the increase in children presenting with behavioral health concerns, especially for depression, anxiety and attention-deficit hyperactivity disorder, or ADHD.
In Pickerington, Dr. William Long has observed the same surge. In his office of six to seven doctors, there’s usually a behavioral health crisis once every two weeks, which he attributes to lengthy waits for counselors and psychologists. Long and Robbins have sought additional training in behavioral health treatment because there was little education for it when they studied to become pediatricians. Long thinks many of his peers still feel ill-equipped to be the primary caregivers for kids with mental illnesses.
“These visits can be very mentally exhausting for the providers, too,” Long says. “You’ve done a couple of these, and kids are in crisis and trouble—you feel just wrung out by the end of the day.”
Columbus City Schools have become a de facto access point for care. They provide screenings for suicidal concerns, triage for crisis care and referrals to service agencies, sometimes collaborating with organizations like Children’s Hospital for programming, says Cheryl Ward, the school district’s director of student and family engagement. CCS currently has 27 social workers serving about 51,000 students, and the district plans to hire up to another 25 in the next five years, after the passage of the November levy.
A few years ago, the ADAMH board began embedding clinicians within the juvenile court and child welfare systems to identify kids with behavioral health concerns earlier. Carr Hurd says the board noticed the increasing demand for mental health treatment among youths around 2007, when Franklin County Children’s Services began placing more kids in high-level residential care treatment facilities. A 2011 study called “By the Numbers” reported that 56 percent of inmates in Ohio Department of Youth Services facilities were receiving mental health services.
“We never have enough capacity in our community for intensive levels of care,” Carr Hurd says, “so that we can stabilize kids and really try and maintain them in the community.”
Angel Jones knew something was wrong with her son R.J. before he was 2. That’s when he stopped sleeping like a normal toddler, instead staying awake for two or three days at a time. He stabbed his sibling with a fork when he was 3. He was kicked out of preschool and kindergarten for behavioral problems. Jones was referred to a children’s services agency, but the staff said he was just hyperactive, too young to be diagnosed with anything. She kept telling everyone there was something more. Nobody listened.
North Central Mental Health Services eventually connected Jones to NAMI about eight years ago. Juanita Ray, a regional coordinator for NAMI’s Parent Advocacy Connection program, helped link her to resources and taught her how to advocate on her son’s behalf. Jones sought trauma therapy—R.J. had a traumatic birth and had undergone operations to his ears, kidneys and gallbladder at a young age—but the therapy was too expensive. She tried to get supplemental Social Security to fund his treatment, but he didn’t meet the criteria of a disabled child. A new doctor took him off a medication that she’d just fought for two years to have approved. Nothing has been easy. R.J. has been in residential care three times, and he’s been hospitalized at least a dozen more.
It’s a familiar tale—one that Sarah knows well. Her persistent thoughts of suicide finally scared her enough that she confided in a friend during her freshman year of high school. Her friend told a teacher, who in turn told a school social worker. The social worker pulled Sarah out of class and called her mom, and she was taken to Netcare, where she was mixed in with adult patients, some of whom were violent. She was moved to another hospital’s adolescent ward, where most of the other patients were males. Her bra was taken away as part of suicide-prevention protocol; she was embarrassed and traumatized by the entire ordeal.
The hospitalization finally gave her a name for what she felt: depression. She discovered it was a biological illness, that she wasn’t just damaged goods. The traumatic experience also partially inspired Sarah and a friend to start Supporting the Girls, a nonprofit that supplies bras and handwritten notes of affirmation to girls and women in need in Central Ohio. Despite her newfound knowledge and mission, though, she began to spiral downward again. Increasing dosages of antidepressants didn’t improve her mental state, and she was eventually diagnosed with an eating disorder and anxiety as well. All her prescribed medicines caused side effects; one blinded her for a day. Nothing worked. There were long waiting lists for services—seeing a child psychiatrist could take months. She frequently relied on her school social worker for daily therapy. She was hospitalized nine times in four years.
Waiting months for community-based, outpatient therapy is common. Glenn Thomas, the director of Behavioral Health community-based programs at Children’s, says the hospital can accept kids immediately if they have very acute needs, like serious thoughts of suicide, but after they’ve been stabilized they typically need ongoing care to prevent readmission and to achieve good outcomes. When children and adolescents don’t get the prompt level of treatment they need, it increases the likelihood that they’ll require emergency care, driving up the demand for crisis services.
R.J.’s disorder was identified correctly, his mother believes, but only temporarily. A doctor at Access Ohio got it right—schizoaffective with a bipolar subtype, Angel Jones says. The words roll off her tongue, clean and clinical. She’s no doctor, but she’s spent years reading and researching. That disorder covered all the symptoms she’d seen, explained her son in a way that felt like someone had finally listened.
And it was erased just like that. Sometime later, R.J. had an episode and ended up in a local hospital. His diagnosis was changed to anxiety, depression and ADHD. Jones was told the medical staff didn’t want to put a severe diagnosis like schizoaffective disorder onto a pubescent child; that’s an adult diagnosis. She admits there are similarities between the two—he’s definitely hyperactive, definitely anxious. But the second diagnosis doesn’t explain his auditory and visual hallucinations. It doesn’t explain his obsession with death.
“My son right now is 17 years old, and he’s very obsessed with guns. He’s very obsessed with marijuana,” Jones says. “And I’ve been telling them this for the longest—I’m like, ‘Look, do y’all not understand that my son, what he wants to do is get high and shoot?’ To me that’s scary.”
She met with a new counselor in mid-October. Based on R.J.’s file, the counselor agrees that the schizoaffective diagnosis may be correct after all, and some of the problems may stem from his traumatic infancy. She’s hopeful that now he can get the treatment he needs.
The science of mental health is evolving, and diagnoses are still imperfect, especially in youth. At an age when mood swings and hormonal changes are the norm, decoding behavior and recommending treatment involves more trial and error than other medical disciplines. What presents as ADHD in an 8-year-old could be bipolar disorder in its early stages. There’s no CAT scan for depression. Yet the fact that a diagnosis—potentially an accurate one—would be denied to a child because of its seriousness is a clear sign that stigma factors in. A young patient’s colon tumor would never be downgraded from cancer to a polyp simply for fear of diagnosing a child with a severe disease.
Angela Schoepflin is the program coordinator for NAMI’s Parent Advocacy Connection, which helps families like R.J.’s navigate a fractured health care system made up of constellations of smaller, disparate networks and agencies. She has nine children of her own, most of them adults now, some of whom have struggled with behavioral health problems. She saw signs of mental illness for one daughter when she was 3—she dismissed it as quirkiness. It became more prevalent as her daughter grew older, but when Schoepflin sought help, she was told over and over that it was typical kid behavior. It wasn’t until her daughter said she wanted to kill herself that she was seen by a psychiatrist, and even then Schoepflin was told her daughter was just hormonal.
Conversely, many parents don’t want their child diagnosed young for fear of an unkind society. This is the predicament of stigma: It risks alienating anyone labeled as mentally ill, which in turn deters a prompt, accurate diagnosis for many who desperately need it. And its effects aren’t limited to the child. “You’re never asked to be the room mother,” Schoepflin says with a sorrowful laugh. “And your relatives don’t want to come to your house, because what if your child has a meltdown? So it starts a lonely journey for that parent who then finds out—‘I don’t have the money, I don’t understand where I get the help, and my child isn’t bad.’ And sometimes you feel like you’re screaming to the wind because behavior is what people see. They don’t see illness. They see a defiant kid. They see a loner.”
Stigma continues to fester. It has even influenced the insurance industry, Dr. David Axelson says, by creating barriers to mental health treatments that don’t exist for other medical conditions, like caps to therapist visits and lesser reimbursement rates. There is hope, though: Cancer was stigmatized 50 years ago, Thomas says, and now that word adorns the sides of medical facilities everywhere.
The same will happen here, once the Big Lots Behavioral Health Pavilion opens in 2020. The Children’s Behavioral Health leaders praise the $50 million corporate donation of Big Lots’ CEO David Campisi, saying that the gift goes a long way toward forcing youth mental health into public conversation—the first necessary step toward erasing the stigma.
The pavilion will have a crisis stabilization unit and a crisis evaluation center with observation beds, as well as 48 inpatient beds. That’s tripling what Children’s is already doing—its inpatient unit for children and adolescents currently has 16 beds, and OSU’s Harding Hospital has 36, of the 72 total in Franklin County. The goal is to stabilize kids in crisis and determine the best level of treatment, then connect them to outpatient programs with other agencies and organizations as much as possible. They want the pavilion to become the connective tissue between the disconnected service systems, acting as a hub for improved, integrated treatment. It’s an ambitious step forward, but it won’t be a panacea. It’s only a beginning.
“There’s a recognition [that] the need is so big, we can’t do it all,” Thomas says. “So we have to establish really good partnerships to make care efficient and make sure that we identify the kids who really need services.”
Half of the youth who need treatment still don’t get it; Nancy Cunningham says that the pavilion will be near the center of the city and on a bus line—it’s meant to provide widespread access and to draw people in. They want it to be a beacon to the region, Axelson says, not only for those needing treatment but also for the next generation of behavioral health care professionals.
There’s already one more potential worker in the pipeline. Her name is Sarah.
Now a college sophomore, Sarah has lived the gantlet of mental illness. The turning point came during her junior year of high school when Children’s Hospital introduced her to dialectical behavior therapy, which she describes as a combination of traditional cognitive therapy and Buddhism. It teaches young patients and their parents a set of skills for emotional regulation and coping with distress. It finally helped. She still sees a counselor, but isn’t on any medication. She graduated from high school and enrolled at Ohio State, where she’s majoring in social work.
She wants to spend her career reducing stigma. It’s the reason she agreed to share her story, a choice that still makes her a little uneasy. She hopes her instructors in school don’t see this article and think she’s unfit to be a social worker, she says, laughing nervously but continuing to answer questions. She agrees to the publication of her name, and yes, her last name, too. She spells it out—
L-E-O-N-A-R-D—each letter an affirmation of who she is. It calls to mind one of the notes she attaches to bras for her nonprofit—You are braver than you think.
Supporting the Girls has given out about 7,000 new bras to date. The handwritten notes are simple sentiments for those in need and in crisis. Some notes appear to be aimed at a quiet young girl who doesn’t understand the feelings roiling inside:
You are strong.
You have a voice.
You are not alone.
By CHRIS GAITTEN