My son is schizophrenic. The ‘reforms’ that I worked for have worsened his life.
By Paul Gionfriddo,If you were to encounter my son, Tim, a tall, gaunt man in ragged clothes, on a San Francisco street, you might step away from him. His clothes, his dark unshaven face and his wild curly hair stamp him as the stereotype of the chronically mentally ill street person.
People are afraid of what they see when they glance at Tim. Policymakers pass ordinances to keep people who look like him at arm’s length. But when you look just a little more closely, what you find is a young man with a sly smile, quick wit and an inquisitive mind who — when he’s healthy — bears a striking resemblance to the youthful Muhammad Ali.
Tim is homeless. But when he was a toddler, my colleagues in the Connecticut state legislature couldn’t get enough of cuddling him. Yet it’s the policies of my generation of policymakers that put that formerly adorable toddler — now a troubled 6-foot-5 adult — on the street. And unless something changes, the policies of today’s generation of policymakers will keep him there.
How it went wrong
I was 25 years old in 1978 when I entered the Connecticut House. I had a seat on the Appropriations Committee and, as the person with the least seniority, was assigned last to my subcommittees. “You’re going to be on the Health subcommittee,” the committee chairs informed me. “But I don’t want to be on Health,” I complained. “Neither does anyone else,” they said. Six weeks into my legislative career, I was the legislature’s reluctant new expert on mental health.
The 1980s was the decade when many of the state’s large mental hospitals were emptied. After years of neglect, the hospitals’ programs and buildings were in decay. In my new legislative role, I jumped at the opportunity to move people out of “those places.” I initiated funding for community mental health and substance abuse treatment programs for adults, returned young people from institution-based “special school districts” to schools in their home towns and provided for care coordinators to help manage the transition of people back into the community.
But we legislators in Connecticut and many other states made a series of critical misjudgments.
First, we didn’t understand how poorly prepared the public schools were to educate children with serious mental illnesses.
Second, we didn’t adequately fund community agencies to meet new demands for community mental health services — ultimately forcing our county jails to fill the void.
And third, we didn’t realize how important it would be to create collaborations among educators, primary-care clinicians, mental-health professionals, social-services providers, even members of the criminal justice system, to give people with serious mental illnesses a reasonable chance of living successfully in the community.
During the 25 years since, I’ve experienced firsthand the devastating consequences of these mistakes.
Every year, one in every five children and one in every four adults has a diagnosable mental illness. A quarter of all mental illnesses are considered serious. Until Tim came into my life in 1985, I had no experience with mental illness in my immediate family.
Problems in kindergarten
As with many other chronic diseases, the symptoms of mental illness often sneak up slowly. Beginning in kindergarten, Tim had persistent problems making friends, keeping his focus and following directions. He was usually gentle. But he also had a scarily short fuse. He slept poorly at night and reported that he “got yelled at a lot” in school.
I can’t point to a single time when I first realized Tim’s problems were not just normal. The day he lay down in the middle of the road — just to see if a car would run him over — comes to mind, however.
Tim’s mental illness turned out to be a serious one — schizophrenia — but the disease wasn’t diagnosed until he was 17, after he’d been sick for more than a decade. That’s pretty much the norm for serious mental illness: Typically, 10 years pass from the time people show symptoms of mental illness to the time they receive appropriate treatment.
When Tim entered elementary school, it took us three years to convince school officials that his symptoms weren’t caused by problems with Tim’s having been adopted, his racial identity (we’re white, he’s black) or our parenting. That by then we had three children younger than Tim who also were adopted transracially and were thriving helped make our case. The school’s evaluations suggested he had what was then called attention deficit disorder and some learning disabilities. He was admitted into special education, and the school drew up a mandated individualized education plan (IEP) for him. It focused mostly on helping with his organizational skills and, at the school’s insistence, his “self-esteem.”
Tim’s mental illness wasn’t being addressed, though. And it turned out that Tim probably didn’t really have attention deficit disorder. Soon his symptoms grew worse. On many nights, he wandered the house instead of sleeping. One day, after his 5-year-old brother had broken one of Tim’s prized toys, Tim pulled a knife from a kitchen drawer to attack him. It was a few weeks after that, on a cold winter night, that he suddenly raced out of the house wearing nothing but his underwear, strapped on a pair of in-line skates and went skating down the middle of a busy state highway. He began to report that he was hearing voices.
Tim was finally hospitalized as he turned 11, and he received a diagnosis of a sleep disorder, depression and, after a year of counseling, post-traumatic stress disorder.
Tim’s IEP clearly needed to be revised after he received his new diagnoses. But his principal told me repeatedly that “he just needs to follow the rules,” as if Tim could will away his illness. In a due-process hearing we then demanded, Tim’s special education teacher declared that Tim’s biggest problem was “overprotective parents.”
Blaming people with mental illness — or their families — for the mental illness isn’t new. And it carries a cost. The cost to Tim: Beginning in sixth grade, he would never complete another full year of school on schedule.
The fragmented years
What followed were many years during which one public school after another knew it couldn’t educate my son but had nothing to offer, holding him back in one case and bumping him ahead in another.
Trouble seemed to find him. Self-medicating with marijuana, Tim’s drug of choice for lowering the volume of the voices in his head, got him suspended from the first high school he attended — a public, vocational-technical school in Middletown, Conn. — and placed on court-ordered probation. Fighting with another student got him expelled from the next one, a private boarding school that the juvenile court and school system had sent him to in Idaho.
Back in Connecticut after being arrested for trespassing, he was placed in a teen mental-health inpatient program by the juvenile court. Fighting with another student also got him expelled from the fourth school, a small, private school that specialized in educating teenagers who had had trouble succeeding in regular high schools. A public high school in Austin, where I’d moved after his mother and I divorced, then admitted him because the law required it to, but only for the last six weeks of the school year. It provided no IEP and essentially lost track of him.
During a span of 30 months, those five schools were Tim’s “freshman year.” Had educators actively sought input from outside mental health professionals, they might have seen that Tim’s illness was beginning to overwhelm him: “I’m in a tired, tired state all day,” he told one counselor. “I worry about stuff a lot. I don’t like having friends; it’s hard to find people who are like me. When I’m really, really sad, I cry. When I’m a little sad, I sit and stare.”
Insurer made matters worse
On more than one occasion, my insurance company also contributed to Tim’s problems. Here are two examples among many:
●When Tim was 15 and needed to be hospitalized while in Idaho, my insurer forced his discharge to a non-secure residential drug rehab program in Connecticut — even though Tim wasn’t using drugs at the time. He ran away 72 hours later. That led to his arrest for trespassing and a six-week stay in juvenile detention.
●When Tim was 17, he was hospitalized while visiting his mother in Connecticut. My insurer refused to authorize more than a few days of inpatient treatment, and so the hospital discharged him before he was stable. Soon I found him camping outside my home in his underwear in near-freezing temperatures, and I had to hospitalize him again. Afterward, my insurer said that because of his history, Tim now was eligible for enhanced case-management services. It also said that he’d exhausted his lifetime benefits.
When Tim turned 18, he had no high school diploma, no job prospects and a debilitating mental illness. Legally an adult, he also decided he wanted to live on his own. With a brand-new diagnosis of schizophrenia, Tim was eligible for a variety of support services, but he now told us he didn’t want them. He was tired of counseling and he didn’t like the side effects of the antipsychotic drugs prescribed for him. He also didn’t want a caseworker checking in on him.
He got his wish. None of the overextended caseworkers assigned to him had time to devote to an unwilling client such as Tim.
I found him supported housing three times in three years, but he was evicted each time for various infractions. When Tim finally found a landlord willing to rent him a place on his own, the mental health agency’s housing personnel gave him a bad reference. That kept Tim living on the streets, and eventually he drifted into homelessness and incarceration. When he was in jail, with its regular routines and meals, Tim usually stabilized. But when he was released — because he went back to the streets instead of to a service provider — he destabilized right away, which in his case meant becoming highly agitated and paranoid, and hearing voices.
In 2008, at age 23, Tim moved to San Francisco and has lived mostly on the streets there ever since.
The last time I visited him, he was holed up for a while in a small room a caseworker had found him in a Mission District rooming house. His only furniture was a bare mattress on the floor; a rat and flies were his companions. Sadly, he seemed content.
This is the mental health delivery system that I helped build.
What I realize now
More than one educator has told me that I shouldn’t blame the schools: Their purpose is to educate children, not to treat them. I understand this. But I also learned from personal experience that ignoring a child’s special needs makes meaningless the special-education concepts of “appropriate” and “least restrictive” education that are embodied in the laws we passed.
These terminologies — and the realities they represent — were things that policymakers thought about too narrowly. The word “disability,” for instance, should have covered Tim and children like him. But as a friend who worked a generation ago on drafting the regulations for the federal government’s Individuals with Disabilities Education Act told me, “Paul, we were thinking of kids in wheelchairs.”
It’s no wonder that children like Tim graduate from one kind of cell to another when they grow up. On the basis solely of the numbers of people with mental illness who are incarcerated in them, the three largest “mental health facilities” in the nation are Riker’s Island in New York, the Cook County Jail in Illinois and the Los Angeles County Jail. The two most stable addresses in Tim’s adult life have been the Travis County Correctional Complex in Del Valle, Tex., and the San Francisco County Jail.
If I were a legislator today, I’d mandate — and provide funding to ensure — that every teacher receive training in recognizing symptoms of mental illnesses. I’d see that pediatricians are trained to make screening for mental health concerns a regular part of well-child exams. I’d require school administrators to incorporate recommendations from pediatricians and mental health professionals into students’ IEPs.
I’d put much more money into community mental health services. I’d integrate how services are delivered by funding collaborative community mental health programs and have them run by mental health professionals. I’d include services for chronically homeless people under this collaborative umbrella.
At the same time, to clear our county jails of people with mental illnesses, I’d get rid of laws targeting homeless people, such as those against loitering or sitting on a sidewalk. And I’d make sure that there was supportive short-term and long-term community housing and treatment for everyone needing them. Both were promised almost 50 years ago in the federal Community Mental Health Centers Act of 1964 — promises that were broken when it was repealed in 1981 and replaced by a block grant to states.
Mental illnesses cost as much as cancers to treat each year, and the National Institute for Mental Health notes that serious mental illnesses can reduce life expectancy by more than 25 years. That reduction is almost twice the 13 years of life lost, on average, to all cancers combined. When Tim needed hospitalization, an insurer sent him to drug rehab. Imagine the outcry if the insurer had tried to send a smoker with lung cancer who needed hospitalization to drug rehab.
Perhaps, even if Tim had gotten earlier, more effective and better integrated care, he still would have become homeless. But I don’t believe that. Tim is where he is today because of a host of public policy decisions we’ve made in this country. It took a nation to get Tim there. And it will take a national commitment to get him — and others like him — back.
A former legislator and mayor, Gionfriddo has worked for more than 30 years in the fields of health and mental health policy. He is author of the weekly blog Our Health Policy Matters. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at www.healthaffairs.com.