Not Sick Enough

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The U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) recently announced some positive news at its first National Children’s Mental Health Awareness Day: Children and youth with serious mental illnesses improve most when served through community-based services.

Those who are treated by a “systems of care” approach spend less time in inpatient care, are arrested less often, experience better mental health and do better in school.

The theory behind a systems of care approach is to place children and their families at the center of a partnership with public and private organizations to tailor services that build on a child’s strengths. SAMHSA has funded 121 such programs since 1992, and it claims that the approach saves taxpayers money when compared with traditional systems for delivering mental health services.

This is all good news and certainly rings true with what we have witnessed in Vermont with a systems of care approach. We have seen the number of hospitalizations decrease for children and youth. There is a sense that families truly are at the center, working with area agencies and schools in order to address the mental health needs of their children. It is not a perfect system, but most agree that it is a very good one.

The downside, however, is best described by a term I heard used by a Vermont state mental health official a few months ago: “the cliff.” And I knew what he meant when he said it, because I, along with my co-workers at Spectrum Youth and Family Services, encounter this often. We’re talking about transition-aged youth (ages 18 to 22) who have been in the children’s mental health system and may even have fared well while, but who have aged out and find themselves on the precipice of a terrifying cliff.

The sad reality is that when children with serious and persistent mental illness, or even a developmental disability, reach the age of majority, the rules change. They are now adults, and the “bar” of eligibility for services suddenly rises much higher. I was at a meeting recently on this very subject, and someone commented, “Someone should write a book called Not Sick Enough, because these young people are sick, but not sick enough to get the care they need.”

In many ways, such youth are victims of their own success and the success of the public and private agencies that cared for them when they were younger. The systems of care approach worked, enabling them to stay out of the hospital. They haven’t attempted suicide multiple times, if at all.

These triumphs will now work against them. They will have to become sicker in order to receive the help they need. We see this all the time: referring 18-, 19- and 20-year-olds to the adult mental health system, hoping they have become ill enough to reach the “bar” that will give them access to services.

What happens all too often is that rather than become ill enough to qualify for mental health care, the youths do something wrong, illegal or violent and land in the prison system. Hence the phenomenon so aptly portrayed last year in the PBS “Frontline” episode, “The New Asylums.” That documentary focused on the Ohio prison system, showing how jails are increasingly being populated by individuals who are suffering from mental illness and developmental disabilities.

At one point, the narrator points out that while states are proud to proclaim that they have closed the large, impersonal, inhuman institutions called mental hospitals, the very people who once populated them are now in large, impersonal, inhuman institutions called prisons. “Frontline” also made a compelling case that a prison is the least therapeutic setting for recovery from mental illness.

I talk about this frequently in meetings among advocates and other providers, and at one of those recent meetings someone asked, “What will it take for things to change?” My answer: “I hope it doesn’t take another Kendra Webdale.”

In 1999, that 32-year-old woman was pushed to her death on a New York City subway track by a 29-year-old man suffering from mental illness who had shown signs of schizophrenia in high school and received years of spotty treatment starting in college.

I hope it doesn’t take another death for our country to wake up and realize that young people are aging out of the children’s mental health system every day and will need some level of housing, support, supervision and care even though they are now classified as adults.