Beyond Drugs
By Anne Harding, The Scientist
December 2007
People with schizophrenia need support systems, not just medications, to get well and stay healthy.
Recovery from schizophrenia is much like being rescued from an island years after being shipwrecked, says Jeffrey Lieberman, chair of psychiatry at Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. "You've been away for a long time and you're now coming back," he explains. "People have to get reacclimated and reoriented and they need help in doing so."
"Many never get the chance to come back," he adds. "If they're fortunate enough to have that opportunity, we don't necessarily make it easy in terms of how they can be reacclimated and reintroduced to a normal lifestyle in the community."
Lieberman and others who treat people with schizophrenia say this sort of help and support is as important as medication. It can range from assertive community treatment (ACT), in which a team of professionals goes out into the field to help the ill person keep appointments and take his or her medication, to weekly therapy sessions. Other key elements of support systems include services that help people get back to school or work. Housing, which the National Alliance for Mental Illness (NAMI) calls "the cornerstone of recovery for people with serious mental illness," can range from transitional shelters to dorm-like facilities providing round-the-clock clinical care, to subsidized apartments where a person lives virtually independently.
"The important thing is to identify each person's individual strengths and bring the resources to the table to help them be the best they can be," says Ralph Aquila, a professor of psychiatry at Columbia University and director of residential community services psychiatry at St. Luke's Roosevelt Hospital Center.
"It's breaking that cycle of dependence and institutionalization," says Jim Mutton, director of residential services for Project Renewal, a New York City nonprofit providing services to homeless, mentally ill people. "It's also saving the taxpayer a hell of a lot of money." It costs the city $26 a day to house and help a person at the Clinton Residence, a Project Renewal facility that provides three meals a day and a multitude of support services, he says, versus more than $600 for 24 hours in jail and well over $1,000 for a day in the hospital.
Reaching out to the street
For the most at-risk people, who have difficulty taking their medications and getting care and who may be homeless, ACT can help them stay on their meds and stay out of the hospital.
ACT is based on a program that Mary Anne Test and Leonard Stein developed at the Mendota State Hospital in Madison, Wisconsin, in the late 1960s. It involves a team of professionals including nurses, social workers, psychiatrists, case managers, and other who act as the primary source of care for people with serious, persistent mental illness. Research has consistently demonstrated that ACT, when done effectively, can prevent people from being hospitalized, and it is cost-effective.
"The beauty of ACT is that it is sort of an assertive approach that blends the services that people need under one administrative structure and is carried out in a very flexible way," says Ron Honberg, NAMI's director of legal and policy affairs. "ACT teams can go out and find a person, provide them with whatever supports they need ... it's an approach that is structured, if it's done properly, to not allow people to fall through the cracks."
Some states have also introduced "mental health courts," designed to help people with schizophrenia and other types of serious mental illness who cycle through the criminal justice system to stay out of jail and get treatment. In 1997, two such programs existed; by 2005, there were about 90. A recent study found that individuals who "graduated" from mental health court were significantly less likely to be arrested again than were mentally ill people who went through the regular system.
A safe, comfortable place to live
Many communities were a bit slow to realize that when deinstitutionalization of the mentally ill began in the 1950s, it would be necessary for them to find some other place for mentally ill people to live, says Kenneth Dudek, the president of New York City's Fountain House, which provides multiple services for people with serious mental illness, including housing. Some people with schizophrenia often live with their families, but others are unwilling or unable to do so.
In its 2006 "Grading the States" report, which rates the United States and individual states based on how well they serve people with serious mental illness (the nation as a whole got a "D"), NAMI noted that supportive housing is in "short supply" nearly everywhere, due to cuts in Section 8, Section 811, and other federal housing support programs, as well as the high cost of housing in much of the country. "Nationally, the average monthly cost of a one-bedroom rental apartment exceeds the total amount of monthly income under Supplemental Security Income (SSI)," the report states. New York City currently has 10,000 units of mental health housing, up from roughly 200 in 1980, says Dudek. He estimates that an additional 30,000 to 40,000 people in the city could benefit from supported housing.
A place to work
Helping people to gradually enter or reenter the competitive workforce is another key element of rehabilitation for many people with schizophrenia. Studies have shown that supported employment programs can indeed help these individuals to get and keep jobs. Programs such as Fountain House work with people to help them learn job skills, from proper hygiene and appropriate dress to negotiating the subway to interacting with coworkers. The goal is to move people from transitional employment - part-time, short-term jobs that offer a chance to get some experience in the workplace, build a resume, and make money while having full support - to a "real job" in the competitive workforce.
Francine Kirschner, 45, who has lived at Project Renewal's Safe Haven shelter in Manhattan since December, says her transitional job at a law firm has helped build her confidence. She had fallen into a depression after being let go from a job, and wound up homeless after she couldn't live with her sister anymore and had nowhere else to go.
"They give me a lot of work to do, and I've gotten good feedback," adds Kirschner, who for many years worked as a transcriber in television and radio. "I thrive on positive reinforcement. I like praise." As is the case with supported housing, however, supportive employment programs are extremely scarce.
Peer support
Getting support from other people with schizophrenia can also help people with the illness to realize their potential, says Lisa Dixon, a professor of psychiatry at the University of Maryland in Baltimore. Unlike many other types of support for people with schizophrenia, peer-support programs are easy to find, including the Veterans Administration's Vet-to-Vet program and NAMI's Peer-to-Peer groups. "There are so many, and many, many good ones," Dixon says. Many programs serving the severely mentally ill, such as Fountain House, work largely by having members support and learn from one another.
While finding the right dose of medication has been key for helping Kirschner to stay well, the support she's getting at Safe Haven, and the friendships she's made, have been just as important, she says. Staff members have helped her to get her Social Security disability benefits, and they are working on obtaining more permanent housing for her, as well as a half-fare subway and bus pass. She has diabetes and an underactive thyroid, and twice-daily "medication calls" help her to remember to take her medication on time. While the 6:30 a.m. wake-up calls can be tough to deal with, Kirschner adds, she appreciates the structure and the nudges to help her stay on track.
Without this sort of support, she says, she might backslide. "I can get into a funk," she explains. "I think if you don't have the support of other people," she adds, echoing Lieberman's metaphor, "you kind of become an island and don't think anybody cares about you."
By Anne Harding, The Scientist
December 2007
People with schizophrenia need support systems, not just medications, to get well and stay healthy.
Recovery from schizophrenia is much like being rescued from an island years after being shipwrecked, says Jeffrey Lieberman, chair of psychiatry at Columbia University College of Physicians and Surgeons and director of the New York State Psychiatric Institute. "You've been away for a long time and you're now coming back," he explains. "People have to get reacclimated and reoriented and they need help in doing so."
"Many never get the chance to come back," he adds. "If they're fortunate enough to have that opportunity, we don't necessarily make it easy in terms of how they can be reacclimated and reintroduced to a normal lifestyle in the community."
Lieberman and others who treat people with schizophrenia say this sort of help and support is as important as medication. It can range from assertive community treatment (ACT), in which a team of professionals goes out into the field to help the ill person keep appointments and take his or her medication, to weekly therapy sessions. Other key elements of support systems include services that help people get back to school or work. Housing, which the National Alliance for Mental Illness (NAMI) calls "the cornerstone of recovery for people with serious mental illness," can range from transitional shelters to dorm-like facilities providing round-the-clock clinical care, to subsidized apartments where a person lives virtually independently.
"The important thing is to identify each person's individual strengths and bring the resources to the table to help them be the best they can be," says Ralph Aquila, a professor of psychiatry at Columbia University and director of residential community services psychiatry at St. Luke's Roosevelt Hospital Center.
"It's breaking that cycle of dependence and institutionalization," says Jim Mutton, director of residential services for Project Renewal, a New York City nonprofit providing services to homeless, mentally ill people. "It's also saving the taxpayer a hell of a lot of money." It costs the city $26 a day to house and help a person at the Clinton Residence, a Project Renewal facility that provides three meals a day and a multitude of support services, he says, versus more than $600 for 24 hours in jail and well over $1,000 for a day in the hospital.
Reaching out to the street
For the most at-risk people, who have difficulty taking their medications and getting care and who may be homeless, ACT can help them stay on their meds and stay out of the hospital.
ACT is based on a program that Mary Anne Test and Leonard Stein developed at the Mendota State Hospital in Madison, Wisconsin, in the late 1960s. It involves a team of professionals including nurses, social workers, psychiatrists, case managers, and other who act as the primary source of care for people with serious, persistent mental illness. Research has consistently demonstrated that ACT, when done effectively, can prevent people from being hospitalized, and it is cost-effective.
"The beauty of ACT is that it is sort of an assertive approach that blends the services that people need under one administrative structure and is carried out in a very flexible way," says Ron Honberg, NAMI's director of legal and policy affairs. "ACT teams can go out and find a person, provide them with whatever supports they need ... it's an approach that is structured, if it's done properly, to not allow people to fall through the cracks."
Some states have also introduced "mental health courts," designed to help people with schizophrenia and other types of serious mental illness who cycle through the criminal justice system to stay out of jail and get treatment. In 1997, two such programs existed; by 2005, there were about 90. A recent study found that individuals who "graduated" from mental health court were significantly less likely to be arrested again than were mentally ill people who went through the regular system.
A safe, comfortable place to live
Many communities were a bit slow to realize that when deinstitutionalization of the mentally ill began in the 1950s, it would be necessary for them to find some other place for mentally ill people to live, says Kenneth Dudek, the president of New York City's Fountain House, which provides multiple services for people with serious mental illness, including housing. Some people with schizophrenia often live with their families, but others are unwilling or unable to do so.
In its 2006 "Grading the States" report, which rates the United States and individual states based on how well they serve people with serious mental illness (the nation as a whole got a "D"), NAMI noted that supportive housing is in "short supply" nearly everywhere, due to cuts in Section 8, Section 811, and other federal housing support programs, as well as the high cost of housing in much of the country. "Nationally, the average monthly cost of a one-bedroom rental apartment exceeds the total amount of monthly income under Supplemental Security Income (SSI)," the report states. New York City currently has 10,000 units of mental health housing, up from roughly 200 in 1980, says Dudek. He estimates that an additional 30,000 to 40,000 people in the city could benefit from supported housing.
A place to work
Helping people to gradually enter or reenter the competitive workforce is another key element of rehabilitation for many people with schizophrenia. Studies have shown that supported employment programs can indeed help these individuals to get and keep jobs. Programs such as Fountain House work with people to help them learn job skills, from proper hygiene and appropriate dress to negotiating the subway to interacting with coworkers. The goal is to move people from transitional employment - part-time, short-term jobs that offer a chance to get some experience in the workplace, build a resume, and make money while having full support - to a "real job" in the competitive workforce.
Francine Kirschner, 45, who has lived at Project Renewal's Safe Haven shelter in Manhattan since December, says her transitional job at a law firm has helped build her confidence. She had fallen into a depression after being let go from a job, and wound up homeless after she couldn't live with her sister anymore and had nowhere else to go.
"They give me a lot of work to do, and I've gotten good feedback," adds Kirschner, who for many years worked as a transcriber in television and radio. "I thrive on positive reinforcement. I like praise." As is the case with supported housing, however, supportive employment programs are extremely scarce.
Peer support
Getting support from other people with schizophrenia can also help people with the illness to realize their potential, says Lisa Dixon, a professor of psychiatry at the University of Maryland in Baltimore. Unlike many other types of support for people with schizophrenia, peer-support programs are easy to find, including the Veterans Administration's Vet-to-Vet program and NAMI's Peer-to-Peer groups. "There are so many, and many, many good ones," Dixon says. Many programs serving the severely mentally ill, such as Fountain House, work largely by having members support and learn from one another.
While finding the right dose of medication has been key for helping Kirschner to stay well, the support she's getting at Safe Haven, and the friendships she's made, have been just as important, she says. Staff members have helped her to get her Social Security disability benefits, and they are working on obtaining more permanent housing for her, as well as a half-fare subway and bus pass. She has diabetes and an underactive thyroid, and twice-daily "medication calls" help her to remember to take her medication on time. While the 6:30 a.m. wake-up calls can be tough to deal with, Kirschner adds, she appreciates the structure and the nudges to help her stay on track.
Without this sort of support, she says, she might backslide. "I can get into a funk," she explains. "I think if you don't have the support of other people," she adds, echoing Lieberman's metaphor, "you kind of become an island and don't think anybody cares about you."
