By Laura Slot, 2010 ~ 8 minute read
Daniel Frey was walking down a corridor at Lehman College in the Bronx when suddenly he thought he heard the janitors shouting obscene words at him. Frey, then 22, had no idea what was going on. Later, he learned that the angry voices were caused by his paranoid schizophrenia.
“They were saying really scary things to me,” Frey, now 32, remembered. For four years he took Risperdal, a heavy anti-psychotic drug. He hated the way it made him feel so he stopped taking it. For the past six years he has gone without any medical treatment. And the voices never left.
“I wanted to have my emotions back,” he whispered during a recent interview, staring at the wall in his living room to ignore the hallucinations he was seeing outside the windows. “I wanted to have my instincts back.”
Without medication, Frey’s sense of reality is continuously blurred. The voices he hears cause him to press both palms against his ears and scream. During another interview, he was asked to leave a Dunkin’ Donuts close to his home, because costumers were annoyed with his shrieking. He sat down at a table outside in the cold, then slowly poured his hot chocolate in a circle on the ground, convinced it was contaminated.
In the 1950s, Frey would have been among the hundreds of thousands of severely mentally ill patients living in psychiatric hospitals across the U.S. But most of those hospitals closed between the 1950s and 1990s, eliminating 93 percent of all beds in a process known as “deinstitutionalization.” Placing people in the community was made possible by the introduction of a promising new antipsychotic drug called Thorazine, as well as a rights movement on behalf of the mentally ill, who were sometimes held in squalid conditions without therapy or hope of recovery. The tax money saved through closing the institutions was made available through grants to non-profit organizations willing to take up the challenge of caring for the psychiatric population.
Many Americans considered community-based services not only a cheaper and more efficient way of dealing with the mentally ill, but also a more humane approach that holds out hope many will be able to function in society. The current economic downturn, however, has put those services under tremendous pressure.
A recent study by Ronald Manderscheid, who has led the National Mental Health Statistical System for the U.S. Department of Health and Human Services for more than 25 years, showed that for the first time in 50 years hospitals have started to take in more patients. “The budget cuts eliminate these people who provide services in the community,” Manderscheid said. “Then, your only alternative is a state hospital.”
Psychiatric hospitals are currently operating at full capacity and the pressure to reopen others is rapidly increasing. As a result, Manderscheid said, “we’ve got to reopen buildings that have been closed for years.” The growing number of patients in psychiatric hospitals is partially due to an increase in forensic patients, people with a mental illness who have committed a crime. “If you don’t offer community services, the person will get picked up by the police and go in front of a judge,” Manderscheid explained. “The judge will ask the prosecutor what alternatives do I have here, and there are no alternatives, so the judge either sends them to a state hospital or a state prison.”
In New York City, more than 420,000 people with severe mental illness currently live in communities or on the streets. Frey is one of 86 patients who receive housing through the non-profit organization Baltic Street Inc. He lives independently in a cluttered one bedroom apartment in Brooklyn’s popular Carroll Gardens neighborhood where traffic on the Gowanus Expressway thunders past the front doorstep night and day.
Edwin Fuller Torrey, a well-known psychiatrist who is the founder and director of the national non-profit organization Treatment Advocacy Center, has always been a fierce critic of the deinstitutionalization process. Reopening psychiatric hospitals, in his view, is a positive reversal. “If you take people with severe mental psychiatric disorders, like schizophrenia and bipolar disorder, and put them in public housing, some will make it but many will not,” Torrey said. “They won’t because they are sick and they are delusional. One of my patients, for example, went in and took out all the plumbing, because he was sure that was how the CIA was sending messages.”
Although he considers many of the programs described to help the mentally ill function in society to be admirable, he thinks that the number of severe psychiatric patients – an estimated one-third of the homeless and one-tenth of the prison population – is simply too large to care for within communities.
Even when the right medication is available, Torrey said, mandatory treatment is necessary for roughly half of the people with severe mental illnesses who don’t know they are sick. In these cases, he explained, the part of the brain that we use to think about ourselves is damaged, a condition known as anosognosia, which means that 50 percent of the people with schizophrenia and 40 percent of the people with bipolar disorder don’t know they are sick.
“Just as we don’t let people with Alzheimer’s disease wander around in the winter without shoes and socks,” Torrey said, “we should not allow people with schizophrenia to continue living in the community in the way that they can be victimized.”
Frey’s life without medication is filled with obstacles. He used be an editor for a peer journal, New York City Voices, but he got laid off in October because of his unpredictable behavior. He goes without any support from his family, and he tends to isolate himself from society.
But to Sam Tsemberis, the founder and director of Pathways to Housing in New York City, the idea that Frey and others like him belong in an institution is all wrong. Tsemberis considers discharging the patients from hospitals “a huge breakthrough in mental health treatment” and maintains that the problem of homelessness didn’t start until the early 1980s, when the economy and housing market were down.
After years of working with homeless mentally ill people in the streets, Tsemberis concluded that the main thing they wanted was housing, and in 1992 he founded Pathways, which, like Baltic, helps provide housing to homeless patients who have been turned away elsewhere. “There were lots of people who didn’t publicly agree,” he said of his approach, known as the housing-first strategy. “Most programs require psychiatric treatment and a period of sobriety, but that is not really possible when they are out on the street.”
The vast majority of Pathway’s 500 clients are addicted to alcohol and drugs but they receive permanent housing without preconditions and before any other treatment. Tsemberis says the housing is key, and when they are off the street, their illnesses are much less obvious. “Once they are indoors you can’t really identify their illness, especially in a city like New York, where everybody is a little crazy anyway,” Tsemberis said.
But few case workers can maintain such a positive outlook. Many organizations depend on a complex mix of funding and grants from different political levels, and they are worried about budget crises and the growing waiting lists. Already, Torrey said, non-profit organizations can’t keep up with the demand for care and housing, and conditions are quickly worsening in the current economic downturn. “Both in America and New York City, generally, the average person with schizophrenia is worse off than they were 20 years ago,” Torrey said. “There has been a steady deterioration of services and housing in general.”
Carl Marcus, 32, of Flatbush, Brooklyn, was diagnosed with bipolar-schizoaffective disorder at age 16, and he has been in and out of hospitals and jails. With support from his uncle, he is now making some progress. Marcus takes Depakote, a drug used to treat the manic and depressive episodes of bipolar disorder, and Prolixin injections, an anti-psychotic drug to suppress manic episodes and psychoses.
As a young man trying to deal with his illness, Marcus had his first run-in with the police when he was 21 years old. After a roommate took out all the light bulbs and forced him to sleep in the living room, he began feeling unsafe. “So I assaulted him,” Marcus said. “I was scared of what he was saying. I was not well myself, I just wanted to feel at home. I had an episode and I was drinking, so I went to jail.”
Both men were taken by police to different hospitals in Brooklyn, and Marcus ended up in the Kirby forensic psychiatric center, where mentally ill people are examined before they go to court. He spent five months on Rikers Island. “I had mental problems, I never had criminal problems,” Marcus said of his arrest. “I never sold drugs or beat someone up. I was always looking for help and never got it.”