Several months ago, Sarah used Ativan and a razor blade to try to take her life. Sarah was rescued and spent the night at the hospital. She then lived for an intensely monitored week in a psychiatric residence. A week later, she returned home.
Dark thoughts overwhelmed the fifteen year old in the weeks leading to her suicide attempt.
“I couldn’t even leave the house,” she says. “If I were to be out in public with friends, I would think about throwing myself in traffic. I used to have my friends hold my hands until I got to a safe place, until I got home, because it was so bad.”
Sarah is not alone, with four million children and adolescents in the U.S. suffering from a serious mental disorder that causes significant functional impairments at home, at school and with peers. Claire, a 21 year old living outside Worcester, overcomes a similar challenge. Claire has Schizophrenia.
“Sometimes when I walk my dog I use headphones so I concentrate on the music, because sometimes something inside of me says, ‘You should jump into the street,’” Claire says. And, when asked how often this urge occurs, she says, “Pretty much on a daily basis.”
In recent years, the nation has lurched from one act of violence at the hands of emotionally disturbed youth to another—from Columbine to Virginia Tech to, most recently, Newtown, CT. But as President Barack Obama said in April, 2013, “Someone with a mental illness is far more likely to be a victim of violent crime than the perpetrator.”
As the nation focuses on preventing acts of violence, the silent pain from undertreated mental illness remains out of the public eye. Yet, numerous Massachusetts agencies have been collaborating to reduce undertreated mental illness.
Before 2009, Massachusetts lacked a comprehensive preventive treatment policy for children and adolescents with mental illness. While individuals with physical illnesses, like diabetes, received monitoring and tools to maintain their health, individuals with mental illness received significantly less.
A decade ago, eight families sued the Commonwealth in a class action—representing children with mental illnesses—charging that the State was failing its youth.
The families won.
“Without…services, a child may face a stunted existence, eked out in the shadows and devoid of almost everything that gives meaning to life,” wrote U.S. District Court Judge Michael A. Ponsor on January 26, 2006, in his Decision in the landmark case Rosie D. vs. Romney. “Prompt coordinated services that support a child’s continuation in the home can allow even the most disabled child a reasonable chance at a happy, fulfilling life.”
Rosie D. vs. Romney held that all Massachusetts youth under age 22, and eligible for Medicaid, are entitled to preventive services for mental illness under the federal Medicaid Act. This entitlement includes virtually all mental illness diagnoses, encompassing between 35-50,000 youth at the time of the case.
In 2009, Massachusetts launched the Children’s Behavioral Health Initiative (CBHI). The umbrella program offers seven services centered around the child’s and family’s voices, part of an empowering current trend.
“Historically, parents were blamed for their children’s mental health challenges, their opinions were not validated, and kids were seen but not heard,” said Kathy Quinn, Family Support Worker and longtime National Alliance for Mental Illness advocate. “A child’s opinion didn’t even register on anybody’s radar, and that’s changing thanks to heightened awareness and services like CBHI.”
The services aim to treat early symptoms and reduce the need for the youth to leave their community. Nick, an 18 year-old living outside Worcester, says Mobile Crisis Intervention, one of CBHI’s signature services, did just that.
Nick had an especially acute panic attack in 2011. His mother called 9-1-1 and asked for an ambulance. The operator misunderstood Nick’s yelling as a sign of a violent nature. Two police cars showed instead, and the police presence triggered Nick’s anxiety even further.
“You’re at my house, with my family. I’m not having you hold a gun to a sixteen year old,” says Nick. “I picked up a shovel, and he grabbed his gun and was like, ‘Kid, just put the shovel down, and everything will be okay.’”
Then, Nick says, the police officer turned to his mother. “We’ve been here multiple times for Nick. We’re gonna have to take him.”
Nick’s mother told the cop she had called Mobile Crisis. CBHI’s Mobile Crisis Intervention provides a mobile team of professionals that can drive to a youth in crisis. The purposes are to de-escalate individuals and their families, and to assess appropriate interventions before the need for hospitalization.
“Mobile Crisis changed the whole tone of things. It was then seen as a medical emergency,” says the mother.
Often misunderstood as signs of willful violence, symptoms of anxiety and other disorders are best treated medically.
“Mobile Crisis helped that night, talked me down, calmed me down,” Nick says. “That night I could’ve gotten arrested, but my mom, my clinician and Mobile Crisis helped me out.”
Just as with any population, there are certain youth with mental illness who have histories of violent behavior. The Judge Rotenberg Center in Canton, MA, works with people who have been evicted from their schools and communities because of their misbehavior, both with and without mental illnesses.
“There are some who are violent and some who are not, and I would say it’s the same percentages for people with mental health problems,” says Samuel Chege, who has worked at the specialty school. “It’s just that people without mental health problems, you can communicate with them better, you can get to the root of the problem easier with them.”
Mobile Crisis took the time to talk Nick into a calm state of mind. Since 2011, he has had no trouble with the police. He spends much of his time caring for his sister with Down Syndrome and volunteering at Youth M.O.V.E., a peer support group in Worcester.
Many are less fortunate than Nick. As for Sarah and 44% of her statewide peers, Mobile Crisis Interventions occur in the hospital emergency room—too late—self-identities and wrists freshly scarred. In May 2013, the number of youth who received mobile crisis intervention in statewide emergency rooms was over one thousand.
CBHI is currently court-monitored, and Rosie D. vs. Romney remains open.
After Sarah swallowed a bottle of Ativan and landed in the hospital, her Mobile Crisis was obliged to perform followup visits several times her first week home. Sarah’s father, however, says that the 7-day followups never came.
“We called [Mobile Crisis],” he says. And they responded, “‘Oh yea, we’ll send somebody out.’ And nobody came out. That was really disappointing. The whole thing has been disappointing.”
As a result, scars formed and remain unhealed.
“Out of the corner of my eye, I can always see myself falling to the ground from my closet,” says Sarah about trying to fall asleep in the room where she attempted suicide. She speaks after a meeting with a CBHI staff where she filled out initial assessment forms. “Or I can always see myself hanging there. I can’t get it out of my mind.”
“I think there’s gaps,” says Nicole Morgan, mother of three children, all enrolled in CBHI. “And I think people are falling through the cracks.”
She speaks at a monthly meeting mandated by the court to improve CBHI implementation. The meetings address issues such as the 4-6 months waitlist for CBHI psychiatrists in some areas of the state. Eric Wilson sits next to her, a community organizer with mental illness himself.
“I’m seeing agencies are getting together now,” Mr. Wilson says. “I can see it. It’s just going to take a little longer. Like building a bridge.”
Massachusetts is a pioneer state because it entitles preventive services under Medicaid’s Early and Preventive Screening, Diagnostic and Testing (EPSDT). Some states are following, often far behind. Maryland and New Jersey currently offer home-based services, not for all Medicaid individuals, but for a broad portion of their population. North Carolina, New York and Georgia offer home-based services to a smaller population. Illinois, Kentucky and several Midwest states offer few or no services at all.
When asked about the prognosis for these other states, Steven Schwartz, the lead counsel for the Rosie D. families, predicts, “Is it likely that there will be other cases like this? Yes. I definitely think so.”
As for Sarah, she looks beyond mental illness.
“I have it, and I’m gonna deal with it.’ I’m not going to be sad about it my whole life.”
She hopes to dedicate her life to others like her by majoring in psychology and becoming a therapist. As with Nick and many other youth, she could bring hard-won experience to a system in need of empathy.
“I wanna sit down and be able to look at people and be like ‘I have been there. I understand entirely,’” she says.
Sarah’s dreams are still far away. Though looking ahead helps her stay optimistic, she struggles every day and wants help from CBHI to maintain her mental health.
Court monitored CBHI regional reviews are scheduled to take place in January, March and May this year, though, according to the most recent court status report, “plaintiffs do not expect to have a set of statewide review findings until late in the summer of 2014.”