A Broken System: Rhode Island Mental Health Treatment for Children
Children fall through the cracks, but one boy is working hard to defy the odds.
Photographed by Ryan T. Conaty
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Conor has always been destructive when he gets upset.
Until last spring, his fits were mostly contained within his home. A hole in the hallway wall proves it. But one fair day last April, his aggression went public.
Along with his mom and three younger siblings, Conor, then eight, tall for his age with spiky blond hair and a silly personality, was going on a picnic. Before they headed to Meshanticut Park in Cranston, the family stopped at the grocery store to pick up a box of pizza strips.
It could’ve gone well: They could have left the store intact, headed to the park, laid out a blanket in the grass. The two toddlers, a boy and a girl, might’ve mussed up their faces with red sauce. Conor might’ve chased his sister, Kate-Lynn, around the lake’s walking path. No harm done.
But a bright yellow box changed the course of the family’s life forever.
Conor wanted a Lunchable.
“We’re having pizza strips for lunch,” his mom told him. A stunning tantrum ensued. Taking Conor by the hand, his mom scuttled the pack towards the exit. They nearly made it. But Conor broke free and threw his weight behind a silver commercial cooler on wheels, shoving it at an oncoming shopper. Then, he ran towards the deli case, stopping only to pull canned goods from the shelves and throw them at strangers in his wake.
Several members of a local rescue squad, shopping for station provisions, witnessed everything. It took the group an hour to restrain a hysterical Conor, carry him from the store and strap him to a stretcher.
Instead of going on a picnic, Conor went to a psychiatric hospital for the first time. He stayed for three days and went home, because that’s all his insurance would pay for. He’d go twelve more times through the summer and fall.
Conor wasn’t there alone. Between 2003 and 2013, Rhode Island saw a 53 percent increase in hospitalizations of children for mental health-related emergencies. Kids, like Conor, with anxiety disorders, attention deficit hyperactivity disorder (ADHD), bipolar disorder, depression, eating disorders, schizophrenia: They end up in the hospital because they can’t access services within their community. They return for the same reason.
According to a damning report by Truven Health Analytics, released last fall, “Children and adolescents in Rhode Island face greater social and familial risks for the development of mental disorders than children in other New England states and the nation.”
Rhode Island is home to the country’s first psychiatric hospital for children, Bradley Hospital in East Providence. But even with such a progressive, valuable resource in the state — to which families from all over the country flock for treatment — one in five Rhode Island children has a diagnosable mental illness.
The little ones, especially, are at risk. According to the Truven report, nearly half of children ages five to twelve with early-onset symptoms experience “persistent, serious, life-course problems” including crime, violence, drug abuse and unemployment.
The deductibles, specialist copays, out-of-pocket bills for psychiatrists who don’t accept insurance, trips to and from the hospital, lost workdays: The price of adequate mental health care is high for families. But when preventative services are rare and crisis-driven care is the norm, the cost is steep for everyone.
When it comes to children’s mental illness, we pay the piper down the road.
Since he was little, Conor’s pediatrician, his teachers, even a few of his family members insisted he was fine. He’s the first son, he’s emotionally immature, he needs to be disciplined more, but nothing’s really the matter, they said. But his mom, Shana Maher, felt differently. She was with him every day. And every day, he got worse.
“Mentally healthy kids don’t try to jump out of windows,” she says.
Maher had been seeking answers since Conor was four. He’d met all of his milestones, but she knew something wasn’t right. She felt it in her bones that he needed help.
The family’s pediatrician didn’t agree. Maher requested a referral for a psychiatrist and asked about her options for additional testing, but the pediatrician told her they weren’t necessary.
Maher’s biggest regret is ignoring her instincts. “Switch doctors if you’re not getting what you want,” she says. “I listened to the professionals for too long and second-guessed myself and it took years to get Conor the care he needed.”
The grocery store incident came on the heels of several traumatic life changes. Conor’s grandfather died. His parents split up, and his father is no longer a big part of his life. The family moved from their Pawtuxet Village home to a smaller apartment in a new neighborhood. Conor was hospitalized. Then he spiraled.
“I always thought about taking him to the E.R. but I didn’t want to make that call,” Maher says. “What parent wants to call 911 and say, ‘My son is out of control?’ ”
Maher, who at the time worked as a nurse’s assistant, searched for other options. But for months, she couldn’t find an immediate placement for Conor that didn’t require a hospital stay. “At the height of everything, I would be on the phone for hours, with my stack of papers, trying to figure out who is going to help me,” she says. “I would put the kids to bed and try to get everything in order so I can start making phone calls again in the morning.”
Dr. Rajvi Broker-Sen, a child and adolescent psychiatrist at Bradley Hospital, says the demand for psychiatry is massive in Rhode Island.
“Bradley has so many different programs, and all of the programs have waitlists,” she says. “A lot of times, just getting access to child psychiatrists is difficult. There’s a good two- to three-month, or more, waitlist.”
Before Bradley Hospital, Broker-Sen worked for Family Service of Rhode Island’s community mental health clinic. Every month, she would travel to Westerly — a part of the state with especially limited mental health resources — to treat roughly fifteen young patients in a single day.
“There was almost no no-show rate, which is unheard of. Everybody showed up,” she says. “When I made the decision to switch jobs, it was difficult to find child psychiatrists in the Westerly area and patients needed to be referred to practices in Warwick and Providence. The resources in southern Rhode Island for child psychiatry are minimal to none.”
After Broker-Sen left, Family Service of Rhode Island was not able to reboot the children’s mental health clinic in Westerly — a casualty of low insurance reimbursement rates, reported a spokesperson for the nonprofit.
Now, two days per week, Broker-Sen operates Bradley Hospital’s phone-based Pediatric Referral Consultation (PERC) Clinic, which connects pediatricians in ten practices with a mental health professional — Broker-Sen and, recently, a nurse practitioner helping her — on behalf of their patients. “Pediatricians really are that first point of access for evaluation and also for treatment,” she says. “Families always, always feel more comfortable talking to their pediatricians about something that’s going on with their kid.”
A year ago, Broker-Sen says, her phone consultations with pediatricians looked very different than they do now. “Initially, I would get calls like, ‘I have this kid who is depressed; can you see him?’ Now it’s, ‘I tried this medicine, and this is what the response was.’ It’s definitely helped, in my opinion.”
For severe cases, Broker-Sen invites patients to her office for in-depth evaluations. If she sees a patient, she is reimbursed by the insurance company. If she advises a pediatrician over the phone — the goal of the program — she isn’t.
“That’s something we’re talking to the insurance companies about — reimbursement for phone calls,” says Broker-Sen, who also operates an outpatient clinic at Bradley Hospital. “It’s a work in progress. They want more data from us. I hope it goes somewhere, but it’s just too early in the game to say.”
In addition to her work at Bradley, Broker-Sen helped develop Rhode Island’s Child Psychiatry Access Program (RICPAP), which would, in essence, create a PERC Clinic for the entire state. In 2014, she and a colleague drafted a pitch modeled after a similar program in Massachusetts — the first in the United States and, now, one of twenty-seven across the nation. They applied for funding through the State Innovation Model Grant and, in late February, they heard back: The program would receive $650,000 over three years. The funds will be released as soon as possible, according to a spokesperson for the Rhode Island Department of Health.
Pediatricians can treat symptoms of mental illness, Broker-Sen says. They can administer medications, too. But, like Conor’s case, she says, “Do pediatricians always do that? No. Do we want them to do that more? Yes. I think that’s where RICPAP comes in. There is a piece of formal mental health training for pediatricians embedded in there. It would encourage them to feel more comfortable starting treatment early on, so they can treat the symptoms and prevent it from becoming chronic and severe.”
Conor’s siblings Kate-Lynn, Riley and Kaylee-Ana and his mom, Shana Maher, at Meshanticut Park in Cranston.
Conor and his sister, Kate-Lynn, Irish twins, are opposites. Conor’s very black and white, while Kate is free-spirited — a little like a butterfly, fluttering around a room. Not long after Conor’s first hospital stay, in early summer, the tension between the siblings boiled over.
“She was at the table, and she was reading and dancing,” Maher says. “Conor didn’t think she should be doing both, so he took her book and ripped it into shreds.”
He then turned on Kate, becoming violent. Maher couldn’t control him. She called 911. “I fell to the floor and just crumbled,” she says. “In my thirty-eight years, it was the worst phone call I’ve ever made.”
Again, Conor was hospitalized. Maher says he received excellent care at Bradley. He was stabilized and, again, he was sent home after a few days. In the beginning, he was never there long enough for his symptoms to flare.