Paul Gionfriddo said the country's mental health system failed his son. He's still hopeful that the system will change.
For former state lawmaker Paul Gionfriddo, mental health isn’t just a matter of policy -- it's also personal. His son, now 30, has schizophrenia.
Gionfriddo leads Mental Health America. He’s a former state representative and mayor of Middletown who now advocates for people with mental illness. During his time in the legislature, he helped to shape what is now today's mental health policy.
Tim, Gionfriddo’s son, grew up struggling in school and getting expelled. He fell into what Gianfriddo called a “revolving door” of hospitalization, encounters with law enforcement, and neglect. Tim now lives in San Francisco. Gionfriddo's book, Losing Tim, explores Tim’s struggle with mental illness and the mental health system that failed him.
“As a matter of public policy, we began to neglect him, like we neglect a lot of young people who have mental health concerns and conditions,” Gionfriddo told WNPR’s John Dankosky during an appearance onWhere We Live.
Gionfriddo shared his family’s experiences raising a child with a mental illness, lessons he learned as a lawmaker, and his thoughts on how to fix a broken system.
INTERVIEW HIGHLIGHTS
On Tim’s Diagnosis, and the “Revolving Door” of Mental Illness
Around the time [my son Tim] turned five years old, went to school, he developed signs and symptoms of schizophrenia. And at that point, as a matter of public policy, we began to neglect him, like we neglect a lot of young people who have mental health concerns and conditions. We struggled with the schools and with school programs, getting him into special education. And when we did get him into special education, we struggled to get those individualized educational programs implemented.
[Tim] began to be suspended from school, expelled from school, after fifth grade he never completed another year of school on time. And when he turned 18 and wanted to become independent, the kinds of things we did to him as a child were the kinds of things we began to do to him as an adult: we fired him from his job when the symptoms of his illness flared up, he was evicted from housing three consecutive times over about a year or two, when he wanted to try to live independently, and he ended up on the streets.
In that revolving door that captures so many people like Tim with serious mental illness, a revolving door between homelessness, occasional hospitalization, and frequent incarceration. That’s been Tim’s life for the last ten years. He’s 30 years old now, living in San Francisco, doing a little better the last couple months, but continuing in this revolving door, with policy makers continuing to make the same mistakes over and over again that we made 30 years ago.
On the Time It Takes to Diagnose Mental Illness
We did a really good job [legislating in the 1990s] of dealing with kids with physical disabilities and including them in classrooms. We did a pretty good job of taking kids with intellectual and other developmental disabilities and including them in classrooms. ...
"When I was in the state legislature, we didn’t even understand post-traumatic stress disorder."
Paul Gionfriddo
But we didn't think at all about kids like Tim, who were going to have serious emotional disabilities, serious mental health concerns and conditions, and so we didn’t build a special education system that was equipped to deal with kids like Tim.
It took us about three years from the time Tim was recognized by his very good teachers, who really did a great job in identifying him and identifying some of his issues. But it still took us three years to get him enrolled in the special education program, and then it took us another year to get an individualized education program put in place for Tim, so four years. And we thought that was unusually long at the time.
But what I’ve learned ...is that it typically takes three years when a kid begins to get the first referral to the time they actually get an [Individualized Education Program]. And then when they do, kids who have mental illnesses, as I mentioned, don’t often get identified for special education purposes on the basis of those mental health concerns.
On His Experiences With Mental Health in the State Legislature
We were grappling with the expense of running our state psychiatric hospitals, and how we could close those state psychiatric hospitals down, move people into communities and provide community services, and save money, because we were always concerned first about making sure that the taxpayers were taken care of.
So we looked at our adult system of care... We were trying to build a system of community-based services for people with mental illnesses that really were built on the needs of adults who were being de-institutionalized. This is a small population, in relative terms, with very serious illness, who needed to be part of our concern.
But we were ignoring the fact that there was a large population of people who would be coming into that system, and who were going to be moving to stage one, to stage two, to stage three of the disease process. We didn’t even understand that kind of thing.
I tell people that when I was in the state legislature, we didn’t even understand post-traumatic stress disorder.
"We always cut first in the areas of health and social services. We did it then, and we’re doing it now."
Paul Gionfriddo
To Vietnam veterans, coming to us and testifying about this thing that we used to call shell shock -- that was actually a real, legitimate, important mental health concern that we in the 1980s knew absolutely nothing about as a matter of public policy.
Now, of course, we recognize seven percent of people in the general public have symptoms of post-traumatic stress disorder. The majority of Vietnam veterans exhibited symptoms of post-traumatic stress disorder. We just know a whole lot more than we did then, but in those days, it was about saving money first, and it was about building systems of supports and services second, for a lot of people.
We always looked at the crisis, we always looked at the funding crisis, and we always cut first from people with mental health concerns. We always cut first in the areas of health and social services. We did it then, and we’re doing it now.
On Parenting an Adult With Mental Illness
When somebody becomes an adult, then in many instances, the parents were pretty much cut out of the picture. A lot of people sometimes say, “Why don’t do you do more for your son now? Why don’t you bring him back?”
You try to explain that they’re legal adults who make their own decisions, and they’re allowed to make their own decisions, and they should be able to make their own decisions.
Just because they have an illness doesn’t mean they’re incompetent to make those decisions, even though they make decisions that we may not agree with. I don’t often agree with the decisions that Tim has made, and I don’t always agree with the decisions my other children make either, but they’re their decisions, and they probably don’t agree with mine.
On the Future of Mental Health Care in the U.S.
I always have hope, and I’m a glass-half-full kind of person... about Tim, and having hope for Tim, and his life, and his future.
I also have a lot of hope about this Congress, and about this administration. [Connecticut U.S. Senator] Chris Murphy has done a tremendous job in developing legislation on the Senate side that is comprehensive in its approach. Maybe the genesis of some of the legislation was what happened in Sandy Hook, but it’s much broader than that. And on the House side, there’s a similar bill by Tim Murphy, a Republican from Pennsylvania, and Eddie Bernice Johnson, a Democrat from Texas, that is similarly comprehensive in its approach to mental health reform.
One of the things that I feel best about that happened [recently] was [U.S. House] Speaker [Paul] Ryan met with President Obama. ...Speaker Ryan was asked what they agreed on that they thought could move forward this year. And the very first thing he said was mental health reform.
Our president understands this. Our speaker understands this. Members of the Senate understand this. The House members of both parties. I think we have in place the opportunity this year to make a difference, the opportunity to lay the kind of foundation that we should have laid a generation ago.
It won’t solve every problem; it won’t appropriate every dollar that needs to be appropriated, but it will lay the foundation for a future system of comprehensive mental health services that will make a difference and will change the trajectories of lives like Tim’s.
Listen here to the whole interview with Paul Gionfriddo on Where We Live. Jackson Mitchell is an intern at WNPR. Heather Brandon contributed to this report. You can see the whole transcript here.
