This is a full transcript of the show broadcast on February 2, 2016.
This is Where We Live. I’m John Dankosky. Paul Gionfriddo’s story is like that of too many Americans. His son Tim suffers from schizophrenia. It led to a life of social isolation and dangerous outbursts, to conflicts with teachers and run-ins with the law. And finally to the streets, a place where many people end up in a society that seems ill equipped to accept them.
But unlike the millions of Americans who struggle to help their children get through life with serious mental illness, Gionfriddo had another role -- as a lawmaker in the Connecticut General Assembly -- helping to shape the public policy that he now says failed his son.
Paul Gionfriddo is now president and C.E.O. of Mental Health America. He joins us today from the studios of N.P.R. in Washington. His book is called “Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia.” We'd like to hear from you if you have stories about dealing with our mental health system, especially how it pertains to young people. Join our conversation, call us at 860-275-7266. Again our phone number is 860-275-7266. Comment on our website wnpr.org/wherewelive. You can find us on Facebook and Twitter @wherewelive. Coming up later we'll be talking about both federal and state policies dealing with mental health reform.
But first I want to welcome Paul Gionfriddo, president C.E.O. of Mental Health America from Washington. Paul welcome to the program. Thanks so much for joining us.
GIONFRIDDO: Thanks for having me on.
I’d like to start with the story of your son, Tim. You adopted him, tell us a bit of Tim's story growing up and how you began to notice that he had serious mental illness.
GIONFRIDDO: Tim was a very cute baby. I think people in the state legislature, who are still there today, would remember when he was two and three years old and I used to bring him into work with me, and everybody loved him. But around the time he turned five years old, went to school, he developed signs and symptoms 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. He 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 eighteen and wanted to become independent, the kinds of things we did to him as a child are 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. And in that revolving door that captures so many people like Tim with serious mental illness -- the revolving door between homelessness, occasional hospitalization and frequent incarceration. That's been Tim's life for the last ten years. He's thirty years old now living in San Francisco doing a little better the last couple months, but continuing in this revolving door with policymakers continuing to make the same mistakes over and over again that we made thirty years ago.
Could you talk about the very early signs that you saw and maybe some specifics here. Because we hear often about schizophrenia being a disease that can present in the teenage years or sometimes in the late twenties for the very first time, which can shock and confuse people and family members, but your son began to show symptoms very, very early. Can you talk about some of those?
GIONFRIDDO: Yes and let me just say generally, half of all serious mental illnesses emerge by the age of fourteen. We often don't recognize them until young adulthood. And that's part of the problem of our system where we typically wait about ten years from the time symptoms emerge to the time we get an accurate diagnosis and treatment. In Tim's case when he was five, his teachers noticed things; we noticed things. He had difficulty sleeping at night. He had difficulty attending to things in the classroom. He would occasionally withdraw from other students, difficulty making friendships. A lot of things like that that sometimes confuse people, make people think. Adults think maybe those are other kinds of things that are happening, but usually take us down blind alleys, and toward incorrect diagnoses, and incorrect labels, and incorrect treatments and supports. And that's pretty much what happens to kids like Tim over and over again.
In the school system these days in Connecticut -- and in every other state -- we only really identify about one in every twenty eight children for purposes of special education who have serious mental health concerns. Twenty seven out of twenty eight are fully ignored and neglected the entire time they're in school. Tim was one of the lucky ones who was identified, but the lucky ones aren't so lucky in this case.
And I want to talk too, in a few moments, about why that is and talk about the special education system. If you want to join us in our conversation with Paul Gionfriddo, call 860-275-7266. The book he wrote a few years ago about his story with Tim is called “Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia”. Tim as you say was adopted. He's black. You’re white. That doesn't have anything to do with mental illness, but how did that change some of the ways in which he was treated within the system, and within the school system do you think.
GIONFRIDDO: Tim was treated the way a lot of young black men are treated in in life and in the school system. He was, at various times, singled out or treated differently because of his race. I think our family was occasionally treated differently because we were a multi-racial family. And there was, in those days, you know thirty years ago, some bigotry about that that I think persists today. And as a result I think, you know, people often look to other kinds of reasons “Well maybe Tim is misbehaving because, you know, he was adopted” or “Maybe Tim is misbehaving because you know his parents don't know what they're doing.” “Maybe Tim's misbehaving because he just doesn't do the right thing like other kids are supposed to do.”
We often blame children who have serious mental illnesses thinking that they can just will their way out of them. When we stop blaming them, we often blame their parents. I could point to adoption in trans-racial adoption as realities in my life, but they're hardly unique experiences, and they hardly create unique reactions to the way kids with serious mental illnesses are treated.
Talk a bit about the special education system that Tim entered into and how it's constructed, what it's constructed to do, and how it failed him. As you use the word ‘misbehavior’ over and over again it strikes me that so much of the conversation around special education revolves around the notion that it's this very, very broad heading that includes kids who misbehave, kids who have very serious mental illness, kids who are depressed, or have some sort of trauma at home, kids who have a health disorder or maybe can't hear or see as well -- and the list goes on and on and on. In Tim’s case it was a very serious mental illness, but he was essentially being put into a system that was not meant to really care for him in the school system. It was meant to throw a blanket over kids with dozens or maybe hundreds of different types of conditions.
GIONFRIDDO: One of my good close friends back in the 90s in Connecticut had been a young lawyer during the Carter administration days and had worked on the development of the regulations around the Individuals with Disabilities Education Act – it was called something different in those days. I remember talking to him at one point when Tim was a teenager and saying “Is this who you had in mind when you were writing all those regulations?” And he looked at me and he said “Paul, we were thinking of kids in wheelchairs.”
We did a really good job 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. And if you think about it, you think about the modifications and the changes we made. 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. We thought that was unusually long at the time, but what I've learned subsequent to that is it typically takes about three years when a kid begins to get the first referrals to the time they actually get an I.E.P.
And then when they do, you know 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. What's the problem with that? Well the idea is you're supposed to get an appropriate education in the least restrictive environment and you're put into special education and enrolled in special education so that you can succeed in school and succeed educationally. And in many areas, kids have to be two years behind grade level -- that's a standard before they give them a special education program. And what I tell people is if you wait until a kid with a serious mental illness is two years behind grade level before you give them special education services they are never going to catch up.
That's why our kids are more frequently suspended. That's why our kids are more frequently expelled. We start from the beginning in not addressing their health needs. These are not addressing behavioral needs. Those are behavioral manifestations of health needs. But we start at the beginning by not addressing those and then we wonder why we have bad outcomes.
We’re going to take some phone calls. Maureen is in Torrington. Hi Maureen, go ahead.
CALLER: Having an adopted child – 11 years old right now -- trying to accomplish the same objectives as your guest, the things he ran into when his child was young are still prevalent today in the system here in Connecticut, in terms of the special education system not being responsive to the needs of children with early signs of mental and emotional disabilities: getting them an IEP, getting them an appropriate IEP. And then the child mental health delivery system, not recognizing certain characteristics of conditions early on and being responsive to the parents trying to access specific types of care, or care that is more healing based opposed to managing or minimizing symptoms, managing the child in the home or the school environment. And I want to find out what your guest’s organization is trying to do to change that both in Connecticut and across the country.
GIONFRIDDO: At Mental Health America we say we stand for four things: prevention for all; early identification and intervention for those at risk; integrated health, behavioral health, and other services for those who need them; and recovery as a goal. And we've distilled that philosophy into an umbrella that we call “Before Stage Four.” Arguing that mental health concerns and conditions are the only chronic diseases that as a matter of public policy we wait until stage four to treat, and then often inappropriately only through incarceration. So we are the recovery people. We are recovery focused. We are pure focused. Our history at Mental Health America and Mental Health Connecticut, founded by Clifford Beers, a Connecticut resident 107 years ago, has always come from the perspective that we need to do more. And adopt and adapt the perspective of people who have mental health concerns who can move toward recovery and work together with our support to move toward recovery.
What we are recognizing, I think what we understand, is there was a huge mistake that we policymakers in the 1980s made, and that was that when we were to deinstitutionalize we said “OK we've got to build a system of community-based services.” We looked at who was coming out of the state hospitals, and those were adults. What we didn't understand was the people who'd been going into the system were children, and by not understanding that we just never built a system adequate in Connecticut or elsewhere, to deal with the needs of children. To catch them early, to do early identification, and early intervention, to get them at stage one or stage two to not wait for stage four, and then move them toward recovery as quick as we possibly could and provide the sports that they needed in order to succeed at school and to succeed in life.
That's what we're working on at Mental Health America now, and that's what I wish I'd worked on a whole lot more back in the 1980s. Hey, we can at least say we were naïve in those days and didn't understand. Policy makers today are not naive about that. They understand that. They know what the problems are. They understand. These are childhood illnesses that we're dealing with, and they're not doing enough to address them.
Could you talk through that a bit more. You’re time in the Connecticut state legislature and some of what you were working on. As you say, times were different then, many different things about mental health and mental illness, than we do today. But you seem to repeatedly put yourself in the middle of this and say “Look what I did in the 1980s actually helped to shape the system that failed Tim.” Take us through your time in the legislature and what specific issues you were grappling with in Hartford that led to the system we have now.
GIONFRIDDO: 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 and we tried to build a system of services. 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 deinstitutionalized at the time. This is a small population in relative terms with very serious illnesses 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 from stage one to stage two to stage three of a disease process. We didn't even understand that kind of thing.
I tell people when I was in the state legislature we didn't even understand post-traumatic stress disorder. It took 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. You know 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.
We're going to be talking more about some of those cuts that may be coming here in Connecticut in a moment. I want to get to one more phone call before the break. Kate is calling from Hartford.
CALLER: As a kindergarten teacher there are children in my classroom who are four years old showing symptoms of mental illness -- attacking other children, etc., having issues that I had to work with getting the IEP. People don't think children that young will already exhibit symptoms of mental illness, but they do. It is so hard because they will always say they have ADHD and the same thing happened to my own daughter. She was ADHD. By the time she was fourteen I went to the Institute of Living and tried to get her help. They interviewed her and said she was not a danger to anybody else or to herself, even though she spent the time in the waiting room curled up in the fetal position, seeing demons. She had run away from the house because she felt that the demons were poisoning the food in the house. She also just had very erratic behavior and unable to control herself in many ways but she was an A student and was two years ahead in school until like about fifteen, then she started slipping. But because she was doing so well in school didn't mean she didn’t have psychological problems. Nobody recognized it. I want parents to understand – they think it’s a phase, that’s what I was doing – but there are things that are going on. It’ll change. But there are things that are going on. There should be an early detection system. People should pick up that these are not childhood phases and at 14 years old people should take it more seriously when there is an issue and not just save money and sweep it under the rug. She’s been institutionalized 20 times. She’s in recovery now. I'm training to work with the legislature to get funding and help. One of the things Behavioral Health Partnership is trying to put in mental health clinics into the schools so these kids can go to some place, and the parents have a place to get help when there is a mental health problem.
Thank you very much for sharing your daughter’s story and I'm very glad to hear that she is getting some of the help she needs. … If you have a child who is literally seeing demons and hearing voices and then that child gets in trouble, as you write about with Tim, with drugs or with acting out, there is a sense with Tim, and many others, they are self-medicating. People cannot understand, and without some sort of better understanding from the school system, there's almost no way to grapple with it. It's just seen as misbehavior, but it's literally a young person grappling with something that the rest of us can't even imagine.
GIONFRIDDO: That's right. I would say that Tim's kindergarten teacher was one of my heroes in the story because she was one of the people who said “you know there is a difference here” and just like that caller was a kindergarten teacher. If we just listen to our kindergarten teachers they can have a pretty good idea about who the kids are who are just different, and who are likely to have more serious mental health concerns. Even at that age, if we listen to our third, fourth grade teachers, at that age, they can probably help us with that too. Nobody is trying to put all this burden on the schools. Because the fact of the matter is that teachers notice differences, parents notice differences, peers notice differences, children themselves can describe differences -- the way they feel different from other children. Tim certainly could describe that. We simply need to pay attention to this and not just think about this as bad behavior.
We need to understand that if we screen people, screen everybody for mental health concerns, that's one of the things we advocate at Mental Health America. Everybody -- all kids, all adults -- should get regular mental health screenings, just like we get regular cancer screenings. So that we can identify things at stage one. It makes it so much easier, so much easier to move people on a pathway to recovery than to wait until stage three or stage four. To wait to the voices are so overwhelming that a child starts self-medicating as a teenager. To wait until they've been suspended from school or expelled from school. And then think “well maybe we need to do something differently.” There's just no purpose in waiting. We don't wait with cancer until stage four and then treat that then and think we're going to get great results with recovery. Why do we do that? Why we do that with mental illnesses?
As you write we would never treat any other chronic prevalent disease the way we treat mental illness. And despite the promise of mental health parity, when it comes to insurance, that's not necessarily something that actually happens across America right now. Those are a few issues we'll talk more about. We’re going to bring in Luis Perez who is the president and C.E.O. of Mental Health Connecticut. We're going to be talking about mental health services right here in our state. We are going to take more of your phone calls as well, 860-275-7266. This is Where We Live. Let's quickly get to Deborah who's calling from Southampton, New York. Hi Deborah. Go ahead.
CALLER: I had a son who was bipolar. At the age of four he began showing symptoms. I myself was a therapist, and then went into the field of education mainly to help my son navigate the system. We treated him with Ritalin first. We tried a trial, just for six weeks when he was in first grade. And he was a very happy child. In the middle of that trial he said he wanted to kill himself. I had never heard him speak like that. So we took him off of that. And I started treating him with various homeopathic drugs. Anyhow, through school he had a lot of difficulty getting help because he was a very smart and creative child and he could often run circles around therapists. As he grew into adulthood, the problem was that he began using drugs to alleviate his pain and his symptoms. What happened was that when he needed help he was bounced from one program in which they would say “well we can't treat people with mental illness, only with drug problems.” Then he would bounce to another program that would say “we only treat mental illness and children or young adults with drug problems” and so this is also a problem in the system. And I have to say that living on the east end of Long Island it's very difficult finding appropriate resources. Finally, I encouraged him to follow his dream. He went to California. He was acting; he was doing music. But he had a very tragic ending, unfortunately, where he went off of his meds. I lost him last year and right now I am on my way to California to do a little investigation to see what happened. But I do have to say that the National Association for Mental illness is very helpful. And I want to applaud all the effort on behalf of the children.
Thank you Deborah. Thank you very much for the phone call and I'm very sorry for your loss. Thank you for calling us. So Paul, there’s a lot in Deborah’s story there. Before we go to our next guest, I’d like you to comment on this transition to adulthood that you talked about briefly at the beginning of the program. So much changes when someone graduates to an adult system for mental health care.
GIONFRIDDO: When someone becomes an adult, in many instances, the parents are pretty much cut out of the picture. A lot of people sometimes say “well why don’t you do more for him now?” You try to explain to people that 18-year-olds are legal adults. They 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 always agree with the decisions my other children make either.
The great difficulty I think for a lot of our kids, and we see it in that story too, is the issue of self-medicating that comes up, and the lack of understanding in our war on drugs that this is just self-medicating. That this should not be thought of as criminal behavior, because what we end up doing is transitioning our kids into the criminal justice system. I make the point often when people say they worry about marijuana, and they worry about legalization of marijuana, because it could be a gateway drug. I say “yeah it was a gateway drug for Tim. It was a gateway to prison. It was a gateway to jail.” And that's what really happens with a lot of our kids. And that's why, in effect, we didn't deinstitutionalize in the 1980s. We re-institutionalized. We didn't close our state hospitals. We reopened them as county jails and state prisons. And that's the most problematic piece of the transition to adulthood for so many of our kids. We absorb them into the criminal justice system and think of this as a public safety issue instead of working with them within our health system and thinking about this as a public health issue.
I want to bring into the conversation Luis Perez who's president and C.E.O. of mental health Connecticut. They're affiliated of course with Mental Health America. He co-chairs Governor Malloy cabinet on nonprofit health and human services, he joins us by phone. Welcome to the program. Thank you so much for joining us.
PEREZ: Good morning. Thank you very much for having me John.
You've been listening through the conversation with Paul and we’ve brought up a lot of issues. … What are the big issues on your plate right now.
PEREZ: Well let's just start by reiterating something that Paul said in terms of the four areas that we need to focus on in terms of addressing mental health conditions. We definitely need to have prevention. We need to have early identification and services available. We need to have integration and all that focused on person's being able to recover from their illness. So in terms of early prevention, early intervention, we have seen, if not decreases, lack of funding, in terms of being able to address the needs of children, as well as the general population.
And in terms of early intervention and access to services, the biggest concerns, in terms of the proposed budget, have to do with a system that has been underfunded for many years, which now is going to experience a great decrease in terms of resources. So being able to access services and being able to offer providers out in the community, to be able to provide high quality and rapid access to services, once persons are identified, is going to be of great concern.
The other piece of it is of course integration, and we can't look at this just from the perspective of funding for just strictly mental health services. We know that best practices, evidence-based practices, show that persons who have access to stable and safe and affordable housing do better. People that have access to integrated or whole health both their minds and bodies, people who are able to have a purpose, be able to be employed, and not just employed but have competitive employment, and be able to rejoin the community in a meaningful way. All of those are components. All are pillars of recovery, if you will, that again will be affected through these budget cuts.
Let's talk specifically about some of these. The proposal that came out and Governor Malloy’s budget this week calls for something like a $16 million cut to grants that fund outpatient mental health care systems and substance abuse treatment. Our caller from Southampton talked about some of the issues here when we segregate substance abuse from mental health treatment and what a big problem that can be. Maybe you can talk about impact, like that if we see a $16 million cut in services for outpatient mental health services what exactly does that mean to the system here in Connecticut.
PEREZ: Again I think it's going to mean that there's going to be a reduction to access to those services. We have been hearing in the news most recently, and it's no news to our behavioral health community, that we have an opiate epidemic. This has been going on for a very long time. I think that what has changed is that the product that's out there is much more lethal, and people are dying. And it's unfortunate that we get to that point of people dying in order to start paying attention to something that has been going on for a very long time. So, yes, the integration of both substance use and addiction services with mental health. Again, it's been a best practice. Let me also say that here in Connecticut, while we have all these concerns, we do enjoy through the very hard work of many commissioners, many advocates, we do enjoy a public mental health system, or behavioral health system, that is the standard, in many cases, for the country. That, however, does not excuse us from always trying to reach and improve upon the work that has been done.
Paul I want to turn to you and get at this question of budgeting for our mental health system in America and specifically in Connecticut. As we've said, you were a Connecticut state legislator in the 1980s. You were dealing with some of the issues of closing down the state mental hospitals at the time, and the problems you were facing in the 1980s are essentially the problems we're facing right now. We kind of comically joke about what's been called the state of permanent fiscal crisis in Connecticut but it's very real. We're constantly trying to figure out a way to pay the bills. And we're constantly, seemingly, having to make decisions like the ones that are coming out the governor's budget. The ones that you had to make when you were in the legislature. Make a case for me Paul, if you would, for the people listening, of why it's important to, from your perspective, maintain funding for these very core services that provide the things that you are talking about.
GIONFRIDDO: For the same reason that it's important to maintain funding for roads and bridges. You know if we don't, the infrastructure falls apart. People don't want to move to the state. People escape the state. They can't get from place to place. They can't get from here to there. And if you look at the area of human services, in particular, these particular programs, these particular services that really affect people who are, you know like Tim, and people who have great needs, and now require great resources, either way, or great investments of resources, either way.
What I think people need to understand is that when you say “OK what we're going to do is cut across the board and everybody's going to feel that pain equally.” That's actually not true. Everybody doesn't feel that pain equally. Take five percent or six percent out of budgets and out of services that are already, as Louis said, woefully underfunded and say “OK now they're going to feel just as much pain as the five or six percent we take out of, you know, benefits to retirees.” I'm a Connecticut retiree. I have my health insurance through the Connecticut retirees’ health insurance program. It isn't felt the same way. And the retirees don't feel, they’ll feel it worse than people who are better off than they are, and if you keep going up the ladder, people can absorb those cuts. And the kinds of people who are making those cuts, frankly, tend to have resources and intend to say “look I can tighten my belt still. There’s still a little more I can do to tighten my belt in order to do this.” But the people on whose behalf they're making those cuts, some of them just don't have belts to tighten. You know they don't have the belts anymore. And so that's the problem that we've got here.
You can address this problem. Instead of saying we're going to cut all of this, as Louis said, you could say we're going to invest more money upfront. We’re going to invest more money in kids, in the special education system. We're going to invest more money into housing, into employment supports, and services for adults. We can invest more money into these kinds of things so that we can take people who are at stage one, and move them toward recovery. And if we don't think that's going to be cost effective, again, just think about it in terms of cancer. How much less does it cost to move somebody with a stage one cancer toward recovery than it does to move somebody with a stage four cancer toward recovery. As a matter of public policy we’re waiting too long with mental health concerns and conditions. We’re waiting until stages three and four and then saying “now we need to do something about this crisis.” It’s going to cost you a lot to do it that way. We can do a whole lot better, a whole lot cheaper, and benefit the people of Connecticut, and every other state, a whole lot more if we just do prevention -- early identification, early intervention and integrated services, and whole health services like Louis said.
Luis I'll turn to you before break. Integration means a lot of things in this field, but also integration in policy making. Paul's making the case that housing policy is tied into early childhood education policy, which is tied into special education policy, which is tied into mental health policy. That's actually not the way we approach it, right. We have advocates like you who are advocating on the mental health side. We have people in the legislature who care very much about one issue or the other. But we seem to not, unless I'm missing something Luis, we seem to not be having a conversation which all these things get tied together and say look this is a holistic way in which we combat this problem. And a whole bunch of other problems that plague us at the same time.
PEREZ: And you're absolutely right. We do tend to silo each of the departments and each of the policy agendas. We have sometimes not enough collaboration among departments. We often see that cuts are made across the board, not understanding the impact that one department for example housing, or the department of labor, or the department rehabilitation services, will have on the DMHAS population. So what we have been doing here at Mental Health Connecticut is actually not just advocating for mental health issues. Our policy agenda and our legislative agenda includes all of those areas. And we work with the policy makers to help them understand how that impacts from one place to the other.
Luis Perez is president and C.E.O. of Mental Health Connecticut. He also co-chairs Governor Malloy’s cabinet on nonprofit health and human services. Thank you so much for your time. I appreciate it.
PEREZ: You're very welcome. Thank you for having me and thank you for bringing this to the forefront.
When we continue our conversation we’ll be back with Paul Gionfriddo who's the author of “Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia.” We’ll take more of your phone calls at 860-275-7266. This is Where We Live. Let's go quickly to Kathy who's calling from Newington. Hi there. Kathy you're on where we live.
CALLER: Hi John. I just want to thank you for continuing this discussion about mental health and I'm going to make this a really brief comment because I was asked to do that. My biggest concern, especially as a person who is living in recovery and a person who's the executive director of an agency that protects people's legal rights, is our continuing to repeat the policy of making those policy decisions based on failures of the system. I would love to see us flip that dynamic on its head and talk more to people who like me have found recovery, have figured out things that work for us, have been in the system, have lived through the system and focus on what it took, what was it that made us well. What parts of the system work for us. What didn't work, because too often I see us returning to policies of the past that actually didn't help a lot of people and for some people actually hurt them. And that's really the biggest concern that I have. I've enjoyed listening to this discussion and just hope we can continue the conversation more.
Kathy thank you very much for your phone call. Paul maybe you can take the lead there and give us something that works, that you know works that maybe we just need to focus more on.
GIONFRIDDO: Well housing works. Education works. Prevention works. You know the best example I can give, you know, it doesn't address the area of schizophrenia, but post-traumatic stress disorder. When people say, “Well what do you mean by prevention?” Post-traumatic stress disorder, it’s caused by trauma. A lot of people think it's our Vets coming back from Iraq and Afghanistan, our Vets who came back from Vietnam, who most suffer the effects of post-traumatic stress disorder. It’s actually our children and students. And our screening program that we have at Mental Health America, that people can do online at MHAscreening.org. We find it's kids and children who are most frequently positive for P.T.S.D. So you know prevention does work. Services that are mainstream services do work. Integrating health and behavioral health services do work.
Institutionalizing people doesn’t work. Depriving people of rights doesn't work. You know treating people as if they're always going to be sick and never can recover doesn't work. Many of the same things work that work for people with any other chronic disease or condition.
Let's go to Rebecca in Niantic. Hi Rebecca. Go ahead.
CALLER: I have a fourteen year old daughter who has exhibited signs of mental illness since she was very young and you know as we hit the puberty years she's been hospitalized several times. I want to kind of address that whole system of the pediatric psychiatric facilities that are just woefully under productive. She's sort of you know never lands in the same place. The doctors are more like “let's just medicate, medicate, medicate and get her stable and get her out.” To this day we still don't have a very concrete diagnosis for her. It's kind of mental, you know some sort of mental health disorder … which makes treating successfully tricky. So you know I'd like to see some real work done. Really the only options we have as parents, when our kids are in deep crisis, is to put them in the hospitals for short term stays. But nothing really happens beyond that. Also I'd like to say that the child psychiatrist population, especially southeastern Connecticut, I don’t about the rest of the state, is not great. We don't have great choices down here.
Rebecca thank you for sharing your story. I wish you best of luck with your daughter's future treatment. She brings up two things and I want to add one thing to ask you about Paul so there's pediatric psychiatric facilities. There's the lack of practitioners in this field, which is something we've heard about. There's also that front door piece, something that's been reported on extensively and we've talked about in our program as well. Often the front door for kids with serious mental illness is the emergency room, because it’s the only place they can go. And kids are queuing up in the emergency room for days sometimes in Connecticut state hospitals with no real treatment plan in probably the worst place for someone who has a serious mental illness -- a loud emergency room -- that's not really meant to handle them. So there's a lot in there but I guess I’m just wondering if you can talk about some of those services and where we need to go.
GIONFRIDDO: Yeah. Sure. I would just comment I think jails are even worse places for people to end up and that's where a lot of the adults end up who exhibit signs and symptoms of mental illness and have crises or emergencies. One of the things, to kind of take it all at once, that has really been impressed on me as I've gone around and done book signings around the country and talked about Tim's story, is that many, many clinicians have come up to me and said, because I traced Tim’s life for a twenty five plus year period and our story extends that far in the book "Losing Tim," they say “You know this is the first time I've had an opportunity to look kind of soup to nuts, you know, to look from the beginning to the end at the progression of this particular illness.”
What they tell me is often what they see is just an episode. And it's the same thing that the caller said. It’s a different practitioner who sees the child at fourteen from the one who sees him at sixteen. It's a different institution they go into. It’s a different program that they get served by. And everybody just sees snapshots of our children. And we think they've got all the longitudinal history and all of the experience that we've got. And what we find is the way the system has been built it really mitigates against a lot of the clinicians having any longitudinal understanding. So again, they'll choose a drug that might work for somebody else, or might of worked for somebody else showing similar kinds of symptoms. They may make a partial diagnosis but they don't see the child long enough to make a complete diagnosis.
We have to fix that. We have to make a system that's more longitudinal. You know one of the challenges that we're working on in Washington and elsewhere is how to let health records follow people across all of these, and keep people in control of their health records, but really get practitioners to look at those. Just a year ago Tim had a new clinician that was working with him in the jail system and they said “You know his problem is substance use” and I said “No his problem is schizophrenia” and they said “No his problem is substance use” I said “No his problem is schizophrenia.” And they said “Well how do you know that? Because what I saw is substance use.” Well, yeah, that's what you saw this week. But you know you want the records from the last twenty years? We'll send you the records from the last twenty years. Oh well no maybe it was that. So, you know, it's a problem.
We just have a few minutes left. Paul and I have to ask you about this and obviously this is something we've been grappling with over the course of the last couple years. We've talked to Senator Chris Murphy who's proposed with some of his colleagues an overhaul of the mental health system, this federal legislation. So much needs to be done as we've talked about and we don't have time to get into all of it. But there's a feeling in America that this conversation has come up again in the last couple years in part because of what happened here in Connecticut in 2012 with the shootings at Sandy Hook and there's been this conversation about mental health that goes something like this “We need to provide services for young people like Adam Lanza so this doesn't happen. Or we need to keep guns out of the hands of young people or anybody who has mental illness.” But we all know that people with mental illness, generally, are more likely to be victims of crime than perpetrators of crime. I guess I'm wondering how you feel, as an advocate for this for so many years, that we're having this conversation, in part, more because of the stigma attached to violence around mental illness that actually isn't the truth for the most part.
GIONFRIDDO: You know you kind of take the triggers that you can get to advance a national dialogue and discussion. You know I always have hope and I'm a glass half full kind of person. I’m a glass half full person about Tim and having hope for Tim in his life and his future. I also have a lot of hope about this Congress and about this administration. 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.
And one of the things that I feel best about that happened in the last 24 hours was Speaker Ryan met with President Obama and coming out of that meeting yesterday 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. 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.
Paul Gionfriddo is President and C.E.O. of Mental Health America. He joined us today from the studios of N.P.R. in Washington. His book is “Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia.” Paul thank you so much for your time. I appreciate it.
GIONFRIDDO: Thank you.
Our program is produced by Tucker Ives with Lydia Brown, special thanks to our intern Ross Levin for his help today. Chion Wolf is our technical producer. Heather Brandon is our digital editor and Catie Talarski is our executive producer. Join us tomorrow as Jim Redeker, head of the state D.O.T., joins us to take some of your phone calls. You can continue today's conversation online, go to wnpr.org/wherewelive. You can also continue it on Facebook and Twitter @wherewelive. I'm John Dankosky. Thanks for joining us.
