“We created a system that neglected our children when we could have made a difference and inevitably led them to homelessness, hospitalization, and incarceration.”—Paul Gionfriddo
The following post is by Paul Gionfriddo, author of Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia. For more on the book, you can also read an interview with Paul Gionfriddo.
I’d like to travel back in time. Just twenty-five years would do. Because if I knew then what I know now, I don’t think I would ever have to have written Losing Tim.
Because public policy matters in the lives of people like Tim.
I’m sure this won’t come as a shock to anyone, but policymaking isn’t a perfect science. As I write in Losing Tim, a very wise Connecticut legislator—a college professor by trade—once remarked that when she arrived in the state legislature, she assumed that the best proposals coupled with the best-reasoned arguments would lead to good public policy. Then the legislative session began, and she learned that gut feelings and emotion often carried the day, and the policy that resulted was as much a reflection of these as it was of logic and reason.
Imagine what this did in the area of mental health. We were faced with a huge challenge in the 1980s. We were closing the doors of expensive and ineffective institutions, and were returning thousands of people to their families and communities.
But their families and communities weren’t ready to receive them. This was in part because they were afraid of the way they looked and acted, and in part because they didn’t really know what to do for them. Still, I write, we believed that anything that happened to people in the community would be preferable to what had happened to them behind the locked doors of those large psychiatric facilities.
Except that it wasn’t, because we just moved folks from behind one set of locked doors—state psychiatric hospitals—to another—county jails and state and federal prisons.
This was not our intention, but we didn’t know any better.
That’s because we missed something that was right before our eyes. While the people coming out from the institutions were adults, the people going into them were often just children. So we created a system that neglected our children when we could have made a difference and inevitably led them to homelessness, hospitalization, and incarceration.
That’s where Losing Tim really begins—a few years before Tim was born.
Tim’s story is all-too-typical. Like fifty percent of people who have mental health conditions, Tim’s symptoms manifested before the age of 14. In fact, his symptoms first appeared by the time he was five years old. And, like many of his peers, it took more than ten years from the time those symptoms appeared for him to get an accurate diagnosis and treatment.
By then, we had been struggling for a decade to get Tim the services he needed. We had been through regular education and special education. We had been through treatment option after treatment option. We had been through schools in multiple districts and communities. We had been through arrests and detention, through school expulsions and suspensions. And we had pretty much succeeded only in laying the groundwork for a life of failure.
So if I could go back in time, as a policymaker I would do things differently. I would start at the beginning, by mandating that every child receive mental health screening at the same time he or she receives vision screening, hearing screening, and dental screening. This is because our brains are as important as our eyes, our ears, and our teeth.
I would then reform our special education system, so that children with mental health conditions could get the supports they need to succeed in school. We do this as a matter of course for kids with physical disabilities, and our brains are as important as the rest of our bodies.
The third thing I would do is to integrate all of our health and social services and supports with our mental health services and supports. I would pay primary care clinicians to triage mental health conditions, just as they are paid to triage other chronic conditions, and I would insist that insurers pay brain specialists—including psychiatrists, psychologists, and social workers—fairly for the work that they do.
Next I would build a true system of community supports, including supported work, supported housing, and social supports for individuals and families. We do this for people with developmental disabilities and, by doing so, promote independence, success, and recovery.
Finally, I would stop presuming that people with serious mental illnesses are all a danger to themselves or others, and I would stop sending them to jail when what they need are clinical services. This is how we treat people with cancers, heart conditions, diabetes, and other chronic diseases, and people with mental illnesses are no more blameworthy for their diseases and symptoms than are people with any of these other conditions.
If there is a lesson to be learned from Losing Tim, it is that we have to escape from the policy prisons we have built for ourselves. We have to stop waiting until mental illnesses reach Stage 4 to treat them—until they are so far advanced that even with the best treatments available outcomes are often compromised.
We have to treat mental illnesses just as we do other chronic conditions—aggressively and effectively before they reach Stage 4.
And so, if I could go back in time, as a matter of public policy I would do just that, because time is of the essence here.
If we use the time we have to intervene, we will change the trajectories of lives like Tim’s. And if we don’t, we now know exactly how this will turn out.