by Andrew Potok
Anne organizes many conferences throughout the state, teaching other parents and guardians about these issues and the importance of future planning. “I've become well known. People there respect my tenacity and willingness to press hard for the rights of the underserved. I personalize everything. They will know who John is and what he needs in order to live a happy and productive life.”
“How were your life plans altered by John's autism?”
“I'm a teacher, which is what I always wanted to be, the only difference being that because of John I moved into special ed.” Aside from her daily involvement in John's life, Anne works full-time at Lesley College, where she is a reading specialist and where she directs a scholarship program called Say Yes To Education, which takes inner-city kids from a very young age through college, guiding and supporting them in every way possible. She also teaches courses on autism and on the issues of inclusion of special-ed kids into regular classrooms, training students and teachers on the graduate and undergraduate levels as well as within the local school system.
“The focus of my work is to explain autism, discuss the educational, social and emotional issues involved, review all the interventions, the methodologies, the theories, and the latest research. I try to explain the role that these future teachers will play when children are integrated into their classrooms. We review adaptations and modifications to the curriculum as well as behavioral and social skills.
“It's a very full life,” she says.
Mona Wasow has actively exposed her classes to the national shame of homelessness and many of her students go on to work specifically among this population. And Jay Neugeboren, both in Transforming Madness and in his conversations with me, talked about the extraordinary plight of those who are dealing with both severe mental illness and homelessness.
Jay pointed me in the direction of an organization that deals with New York's mentally disabled homeless, a special population that the city won't touch, people who don't meet the usual prerequisites for eligibility, people seen as unmanageable, treatment-resistant, not ready for housing. “You want to see some real cutting-edge stuff?” he asked. “Talk to Sam Tsemberis, who runs an outfit called Pathways to Housing.”
In fact, Pathways to Housing has had unbelievable success by finding housing first, doing the rehabilitation and support work later. Following this radical sequence, they've had an 85 percent retention rate in the apartments they find for people with major psychiatric diagnoses, homelessness, poverty, malnutrition, sexual abuse, substance abuse, child abuse, crime, alcoholism, lack of education, lack of decent medical care and lack of hope. “Though they are a population as difficult as any in America,” says Sam Tsemberis, “they refused to consider themselves victims. Instead, they take responsibility for their own lives.”
Sam, a soft-spoken man, runs this whole amazing show. “I'm not actually sure how I got into all this,” he says. “I haven't really stopped to think about these things. Some people have a sense of what they want to do early. That was not my case.”
I ask Sam to describe himself. He tells me he is six feet tall with dark hair and a beard beginning to gray. A friend recently sent him a birthday card saying she loved his “fierce gentleness.” He sees himself as passionately compassionate, the embodiment ofthat exciting tension.
Coming from a little village in Greece, eleven kilometers outside of Sparta, without running water or electricity, Sam loved the intimacy of readily available aunts and uncles, grandparents, godfathers and godmothers. Everyone's being related to him was cozy and safe until his family decided to emigrate to Montreal, where he had to remake himself.
“From the beginning, I was attracted to people's stories,” he says. “In college I majored in literature and psychology, then started teaching in a New York City school where the kids had just come off the boat from small Greek islands. I felt really useful, helping them with their adjustment. After three years I went back to graduate school in psychology, even though I was sorely tempted to study drama at the Circle in the Square. Even now I make videotapes of our program, loving the chronicles of people telling their experiences and stories.
“When I was learning about mental illness, I have to say that I never fully understood why people were locked up in wards. The first time I went to visit Creedmoor Psychiatric Hospital, I had an interesting exchange with a patient. I had been going through a period of changing from Canadian to American cigarettes. I was smoking Marlboros one week, Pall Malls the next, trying to find something that tasted like Roth-man's. So I'm talking to this guy locked up in Creedmoor and he's saying, ‘I like Pall Malls, sometimes I like Camels, sometimes I need Marlboros,’ and I'm thinking that this guy's got the same problems I have.” Sam laughs. “And he's locked up! What's wrong with this story? I've always thought there was some misunderstanding going on in those psychiatric hospitals. To just sit and talk with a person, about their life, how it came to be that they are where they are, makes perfect sense to me. Even now, with all my training, I haven't lost that perspective. The institutions and the system try to professionalize you into a disconnect with the people you're dealing with. It's not because people aren't well intentioned. They just make a lot of wrong assumptions about what really helps.
“I think we all have pockets of disability. People get stuck emotionally, they get enraged or depressed. For some it's brief, more manageable, for others it lasts longer and we need more help. We all know the geography, all of us are human. The way each of us navigates is a little different.”
“So why homelessness and why Pathways to Housing?” I ask.
“First, I was a street outreach worker in the city, dealing with the homeless, which I thought to be the most visible and compelling public health social issue. It was a city project that took mentally ill people on the street to a psychiatric hospital, against their will if necessary, if they met the legal and clinical criteria of being dangerous to self or others. The idea was that no one was going to die on the streets of New York City. It was always wonderful to pull people out of the cold but always very painful to bring them to a psychiatric hospital.”
Most of the people he picked up had enormous physical and mental health problems. More than anything, they needed a home, but he had to take them to Bellevue. In New York City, when a person with mental illness is homeless, the entire mental health system focuses on the illness, not the homelessness.
“But these people didn't want to go to Bellevue,” Sam says. “They wanted what every other homeless person wants, a place of their own. As much as we tried to cajole, the system was locked into treatment first, then housing. So we had to create an agency that would accept referrals from the street. In 1992, I ended up starting our nonprofit Pathways to Housing, and we took the risk of transferring people right from the sidewalk into apartments of their own, just as they wanted.”
Other city programs reject clients for not taking their medication. With Pathways, whose aim is to separate homelessness from treatment, people lose housing only by acts of violence. Unlike those of the city, Pathway's requirements aren't draconian. With them, it is housing first, and only then does the rehab process begin. Their workers are out helping people in their new apartments, in the courtrooms, in stores, on job sites, in schools, medical centers and doctors’ offices. Many of the peer specialists have experienced similar problems themselves and are now providing models of recovery. Ironically, the cost of this seemingly exorbitant program is less than the cot provided to some of the homeless by the city. The price of such a municipal shelter is about $25,000 a year, while a Pathways apartment together with attendant care is $20,000, half of which goes to the rent, including furniture, half to support and clinical services. This latter half is each client's share of the salary of the service coordinator, the psychiatrist, the nurse practitioner and others. Thus, for each hundred clients, a million dollars goes to staff salaries. Each service coordinator, for example, is responsible for some ten people. Each client has his own service
person available seven days a week, twenty-four hours a day, though there's a wide range of need for contact, from daily to every other week, and this need changes over time.
Because of recent statewide pressure to empty psychiatric facilities in New York, where the annual cost per patient is astronomical—more than $120,000—Pathways signed a contract with the state office of mental health to place its outgoing patients, many of whom had been hospitalized for years. “They knew us,” Sam says, “and knew we would take anyone. As for us, we thought that after taking people from the streets, this would be a piece of cake. But the people coming out of the hospital were much more labor-intensive than we anticipated, which makes sense when you consider that in the hospital these people needed permission to do anything, to take a bath, have a meal, take their medication, go to bed, get up. When we left them alone in an apartment, they became terribly anxious. They needed a person nearby all the time and we ran into a very significant financial problem. It proved to be quite a demonstration of the destructiveness of institutionalizing people.”
Pathways is a small agency of about fifty-five people. So far, they've had little time to fund-raise, but they're about to start looking for private donations to supplement the city, state and federal funds. “Initially there were just five of us,” Sam says, “and I was the only licensed clinician. I still get calls at two in the morning from one of the tenants in our program, saying, ‘Sam, I came back from my walk and found a pencil mark on the wall near the light switch in the kitchen and I don't think it was there before. Do you remember it being there when I moved in? If it wasn't there, someone's been here and I'm leaving to go back to the shelter.’ So I say of course that pencil mark was there.
“When we sit down and talk to a diagnosed person, we get the rhythm of their language, the frame of reference, where they're coming from,” he says. “I used to interview everyone who came into the program and I never found anyone who didn't make sense to me. Over the years I've seen people struggling, relapsing, coming back, getting to a new place in their lives. There are heroic things going on every day.”
Recently, Pathways was invited to submit a proposal to Westchester County, eliciting a front-page story in the West-chester Journal News announcing that “the County plans to introduce a mental health program that will put mentally ill drug addicts into apartments without therapy.” “How are people supposed to react to that?” Sam asks. “They're coming to your neighborhood. They're going to walk the same sidewalks as your daughter. Boy, did that ever cost us! But reading all this garbage, I wonder if anyone realizes that mentally ill people are no more violent than any other segment of the population. A tremendous amount of harm is done by events such as the Wonderland TV program or by Andrew Goldstein, the man who pushed a woman into the subway tracks. It just perpetuates the lies. Studies have shown us that if you have a good case manager, you will do well, regardless of whether the process is voluntary or involuntary. But the minute Goldstein pushes the woman into the tracks, $125 million goes into the involuntary program. Why? It doesn't work. What works is considered, compassionate, continuous care, but that doesn't sell as well politically.
“It's horrendous, this representation of violence and destruction associated with mental illness. A tremendous number of column inches in the press are given to violence when it's committed by a mentally ill person as opposed to anyone else, while crimes inflicted on people with disabilities are notoriously unreported. Violence against the disabled, particularly the mentally disabled, occurs at rates that some say are nearly ten times higher than violence toward the general population. In this country, more than five million disabled people are victims of serious crimes every year.”
The provider community itself is at best skeptical about Pathways, even though it has been in business for seven years and its housing retention rate is a lot better than that of other providers. “It's so amazing,” Sam says, “the difference we're making.”
In some communities, like East Harlem, Pathways workers would drive or walk around the neighborhoods and go inside the abandoned buildings, cars and subway stations describing the program to homeless people, who, more often than not, are in total disbelief about it. The workers go in teams, traveling in a van clearly marked with the organization's name. “One of the issues of street survival is people trying to figure out who you are,” Sam says. “Are you safe? Are you a threat? Do you conduct yourself in a social-worker manner? Are you really here to help?”
Not everybody working for Pathways wants to walk the streets and do outreach but it's appealing to some. “And it's hard to tell who would like it, who not,” Sam says, “like Jane, a fabulous worker, who back home in England used to be a governess. Everyone either is or quickly becomes very streetwise. We learn how to approach a person, and if they say no it means no, though we have this concept of the soft refusal. When somebody snarls at you, wanting you to go away, we figure, well, they're not in the mood today, it's not a good day for them, and we'll probably try to come back another day. The job does require persistence.”
Pathways workers ask where people want to live, then hit the streets like anyone else, looking for affordable housing. Because some 40 percent of the staff are people who have themselves been homeless, in psychiatric hospitals, in drug rehab programs, they believe deeply in what they're doing.
“So what happens to people once you find them a place to live?” I ask.
“After they're settled in, we begin taking care of their other needs, like supervising their medication or therapeutic programs, helping them look for work. Some people eventually leave the program because they've found work or they move, celebratory things. A very few people are asked to leave, mainly because their apartments are overrun by drug dealers. We've had characters with guns come to the office looking for people on days the checks come in.”
Sam tells me about Ed, one of his workers, who was in Robert Neugeboren's unit in Creedmoor thirty-five years ago. “The state-of-the-art at that time was insulin shock treatment,” he says. “Can you imagine? They put people into a coma, not too deep or they'd kill them.” He trembles with outrage. “In Creedmoor, Ed and Robert used to play chess together. Thirty-five years later, Ed was showing Robert one of our apartments.”
“Is Robert a more serious schizophrenic than Ed?” I ask. “What made their lives so different?”
“Ed had been told by the psychologist who was treating him at Creedmoor that he must escape, that his life depended on it. He took this to heart and got out of there, struggled, was married for a while, had a daughter, a lovely teenager now. He's been working for the last twenty years. Ed's and Robert's experiences of family, their different personalities, the blind luck of running into one person rather than another, a whole series of varied life events took each of them in a different direction.
“Even though Robert became a celebrity in the world of mental illness because of Jay's books, Robert isn't going to change much from being Robert, a man with thirty-five years of institutionalization, which makes anyone extremely dependent. We talked about our program with him but he didn't like any of the apartments and ended up in a community residence with much more support, a better fit for him.”
“How do mental health organizations look on your work?”
“Folks such as the National Alliance for the Mentally 111 like some things about us,” Sam says. “They admire the fact that we never give up on anyone ever. We're a nice replacement for family in that respect and they feel reassured, but the idea that we don't require medication before we find people housing is definitely one of the more controversial aspects of our work. They don't like that. They must like us for getting people off the street but they definitely see the hospital as a friendly ally. We definitely do not.
“There is a tension between the consumer movement and NAMI, the former wanting choice, the latter insisting first that everyone take his medicine. Ideologically, we fall much closer to the consumer voice,” Sam says.
For Jay Neugeboren too, the National Alliance for the Mentally 111 has historically been overly preoccupied with cures and, in his judgment, too focused on mental illness being a biologically based disease, which propels it to support a cure that is chemical. Jay believes that NAMI is too wedded to drug companies, and that even though it does excellent work as well—advocating, lobbying for insurance parity, campaigning against stigma, providing families with groups where people can talk to one another—it tends to mistrust the judgment of people with mental illness and thus favors hospitalization over other, less paternalistic solutions to everyday care.
“However,” Jay says, “little by little, NAMI is beginning to favor programs rather than pills. The philosophy of going for the cure implies that you're an imperfect human being, in the garbage, until a cure is found. The most egregious, well-known examples of this wrong-headed thinking are Christopher Reeve and Michael J. Fox.”
I know this all too well. Going for the cure has always been the focus of the foundation which, from its beginnings in the early 1970s, took blood oaths that it would not rest until it found a cure for retinitis pigmentosa. Decent people, some of them affected by the disease, and dedicated researchers insisted that the large amounts of money raised go exclusively into research and the administration of fund-raising, rather than into the support of retraining and the establishment of therapeutic and educational systems that can offer the kind of day-to-day help that far outweighs the benefits of waiting endlessly for a magic bullet.
