Finding a steady job used to be a pipe dream for those with severe mental illness. But now, thanks to a model conceived and studied at Dartmouth, such individuals are not only finding employment, but also finding that the satisfaction of working lessens their psychiatric symptoms.
Barbara Kisk was working for the FBI, fighting crime in Minneapolis, Minn. Or so she thought. Then she became convinced that the FBI was tailing her. "Now they were after me," she recalls. "I just went berserk."
That was about six years ago, when Kisk, then in her fifties, had a mental breakdown. She was eventually diagnosed with schizoaffective personality disorder, which is like schizophrenia but also includes the mood disturbances of depression and bipolar disorder.
Before the onset of these symptoms, she'd had a "pretty regular" life, as she puts it. She had held down a job in a factory, owned her own mobile home, and had a dog named Murphy. Then over the course of 10 years, Kisk began to struggle with disorganized thinking, mood swings, delusions, voices, and increasing agitation. "I was quitting jobs, trying to get jobs, moving around, getting mad at people," she says.
Jennifer Durgin is the associate editor of Dartmouth Medicine magazine, and Jon Gilbert Fox is one of the magazine's regular freelance photographers. The photographs in this article do not depict actual supported employment clients but are emblematic of the kinds of jobs that some of them hold. Four local businesses were kind enough to offer up their workplaces as the background for these images—so the magazine offers thanks in return to Umpleby's Bakery, Rosey Jekes clothing store, the Ranch pet center, and Hanover True Value hardware store.
After her breakdown, she had to sell her trailer, go on county assistance, and move into a group home. There, with the help of a social worker, she tried to get her life back on track. Kisk also began taking medication, prescribed by a psychiatrist, to calm herself down and make the voices and irrational thoughts go away. She was able to keep her dog for a while but eventually had to give up Murphy, too. "I had a rough time," she says.
After several years in the group home, Kisk's social worker suggested she think about getting a job and referred her to Functional Industries, a work rehabilitation organization in Minnesota.
"I felt I should be working," Kisk recalls, "but I was overwhelmed."
Functional Industries runs a program that helps people with serious mental illness find competitive employment—regular jobs out in the community instead of sheltered jobs reserved for people with mental disabilities. The program follows the Individual Placement and Support (IPS) model of supported employment—which was invented, studied, and developed at Dartmouth's Psychiatric Research Center (PRC). In IPS supported employment, no one is excluded based on degree of illness, addiction, or what's often called "work readiness."
Watch videos describing how supported employment works.
Functional Industries is part of a collaborative called the Johnson & Johnson-Dartmouth Community Mental Health Program. Established in 2001, the program offers start-up funding, training, and support for states to implement the IPS model. The Johnson & Johnson Family of Companies provides funding, while Dartmouth's PRC provides expertise and ongoing technical assistance.
Johnson & Johnson's corporate contributions division first contacted the PRC in 2000 to find out how they could help disseminate IPS throughout the country. J&J had heard about the success of IPS in New Hampshire through the National Alliance on Mental Illness and the National Institute of Mental Health, as well as through scientific papers published on the approach. But before J&J would sign on to a long-term partnership with Dartmouth, explains Deborah Becker, one of the founders of IPS, they asked the PRC to demonstrate that they could get the model up and running in other locations. So Becker and her team set up pilot sites in Connecticut, South Carolina, and Vermont. The pilots proved successful, and J&J and Dartmouth entered into an ongoing partnership.
Kisk may have gotten the job herself, but she could never have kept it, she says, without her employment specialist's support. "I felt like quitting right away," says Kisk, "and normally would have. I just get afraid. . . . I just want to walk away. But Robin kept talking to me about how to handle the job. . . . She just gives me little clues all the time that help me stay there."
Today, 115 sites in 12 states are part of the J&J-Dartmouth collaborative. The states are responsible for financially sustaining their programs after a four-year start-up period, but they continue to receive training and support from Dartmouth. Each site reports its employment outcomes on a quarterly basis. For example, in July, August, and September of 2009, the 115 sites served 7,725 people, 3,212 of whom were working. (The other 4,513 were between jobs or in the process of finding a job.)
Functional Industries is one of those 115 sites, and Barbara Kisk is one of the 3,212 individuals employed during the third quarter of last year. With a little help, she was able to get a job and get her life back on track. Not long after being referred to Functional Industries, she met with a representative of its IPS program. The representative even came to visit Kisk in the group home where she was living.
"She said that if I wanted to work, and I was encouraged to work, that I should lean on them a little bit and get some ideas about where to look for work and how to look for work and what to do on an interview," recalls Kisk.
At first, "I didn't want to look for work," she says. "I didn't want to have these interviews. I didn't want to go through what you needed to do to get a job." But her employment specialist, Robin Wilcox, helped Kisk overcome her reluctance by talking to her about the kinds of jobs she'd enjoy and then listing appropriate jobs being advertised locally. Finally, after a few months, Kisk landed a job as a dishwasher at a local restaurant.
"I just walked in and talked to the manager on duty," she recalls. The manager liked her and hired her right away. "I was really happy that I did it myself," Kisk says.
Under IPS supported employment, it's up to the clients whether their employer knows about their mental illness and the fact that they're working with an employment specialist. Employment specialists sometimes work just with the client, but sometimes play a more active role in the workplace—assisting with training and mediating between the employee and employer, or coworkers, if problems arise.
After two years on the job, Kisk still hasn't revealed that information to her employer or her coworkers. (Her name, her employment specialist's name, and other details about her life have been changed in this article to protect her privacy.) But she thinks it would be "okay" if they knew, she says. "I'm not afraid of that too much now."
Kisk may have gotten the job herself, but she could never have kept it, she says, without Wilcox's help. Employment specialists are on the front lines of the IPS model because they work directly with clients and employers.
"I felt like quitting right away," says Kisk, "and normally would have. I just get afraid. I get paranoid that I'm not doing a good job and that I'm not fitting in with the other people. And I just want to walk away. But Robin kept talking to me about how to handle the job, about how to do dishes and not be overwhelmed by the job itself, how to take a break, stand back, [or], even if I'm not a smoker, to go out and have a break with the others instead of being isolated. She just gives me little clues all the time that help me stay there."
It was her regular meetings with Wilcox that kept Kisk going when she felt like quitting. "I'd keep thinking in my head, 'You'll be seeing Robin tomorrow. Now, take note of what you want to tell her.' And then it was okay," Kisk explains.
Wilcox became an employment specialist about three years ago, shortly after she graduated from college with a degree in social work. She works part-time and usually manages a caseload of about 14 clients, helping them to find and keep jobs. Wilcox estimates that she's helped a total of 25 to 30 individuals find steady employment—in such places as retail stores, restaurants, car washes, retirement communities, and farms, to name a few examples.
"It comes down to what a person wants to do," she says. "There's zero exclusion. . . . As long as they have a mental illness and they want to work . . . whether they're using drugs, alcohol, or even not taking medication, that doesn't matter. We work with them. We don't say 'Oh, you're not job ready.' We jump right in and within the first two weeks we typically are making an employer contact."
Getting people with serious mental illness back to work used to follow a "step-wise approach in artificial and segregated settings," says Becker, "where [people] practiced being workers." Then staff would help them get a job. "The problem was that that never happened. People stayed in these let'sget-ready-to-go-towork settings, or they would drop out."
Until the 1980s, explains Becker, who codirects the J&J-Dartmouth program, getting people with serious mental illness back to work usually followed a "step-wise approach in artificial and segregated settings, where [people] practiced being workers." They had to learn and demonstrate "good work skills," and then the staff would help them get a job. "The problem was that that never happened," says Becker. "People stayed in these let's-get-ready-to-go-to-work settings, or they would drop out."
Becker should know. She worked as a vocational rehabilitation counselor in the early 1980s at West Central Behavioral Health, a community mental health center in Lebanon, N.H. It was there that she first met Dr. Robert Drake, who was then the medical director of West Central. He had been the head of ambulatory care services at the Harvard-affiliated Cambridge Hospital before that.
"She used to get all of these people jobs that I never thought could work," says Drake of Becker. "I didn't know what she was doing, but I knew she was really smart about doing it." So when Drake was recruited to Dartmouth Medical School in 1988 to start the Dartmouth Psychiatric Research Center, he asked Becker to join him and help figure out the best ways to help people with serious mental illnesses find work.
"Once we got her involved in the research center, she could start writing down what she was doing, and we could start studying it and teaching it," he explains.
The first iteration of what became IPS was launched as part of a randomized controlled trial of what was then considered the best form of vocational rehabilitation. In the leading model of the time, people took classes and underwent skills training, after which they would be connected with a vocational specialist. These efforts weren't integrated with other social or health services an individual might be receiving.
Not wanting to test the leading model against no employment services, or services that were clearly inferior, Drake and Becker brainstormed a new model. They drew on Becker's background as a rehabilitation counselor and Drake's expertise in psychiatry and came up with IPS. Unlike the skills-training model, the IPS model had no prerequisites, no classes, no training, and it was fully integrated with the individual's other mental health and social services. Professionals from each sector who were assisting an individual would meet regularly to coordinate and develop a plan that suited the individual's specific mental health and employment goals. For example, if a particular medication was making an individual too sleepy to get to work on time, the mental health professional prescribing the drug could adjust the dosage or the time of day the drug was taken.
The results of the randomized controlled trial, published in the Journal of Consulting and Clinical Psychology in 1996, surprised even Becker and Drake. "IPS supported employment got twice as many people to work" as enhanced vocational rehabilitation, says Becker. "That was the first real rigorous test" of the model.
Since then, more than a dozen studies in the U.S. and abroad have shown that with supported employment, two to three times more people find work than with traditional services. The studies have also turned some long-held beliefs within the mental health field on their head.
"When I was in training," recalls Drake, "I learned that you shouldn't stress people with work. It could cause them to decompensate . . . or break down and have worse symptoms or have another episode of their illness. That's what we all learned. I think what we didn't understand at all—and by 'we' I mean the psychiatric field—is that not working and not having anything to do and not having structure in your life and not having any self-esteem because you are unemployed, and not having any money is much, much more stressful than working. And it is for everybody! We should have known this. All of the epidemiological studies have always shown that people who lose their jobs have a terrible time. They develop depression and alcohol problems and marital problems and everything else. Well, it's the same for our patients, but sort of in the reverse order.
"What we keep finding again and again and again is that people have a much greater capacity to work than we expected," Drake continues. "And when they start working, they tend to be successful. And rather than stressing them, it seems to help them get their lives organized and to do much better in every area."
More than a dozen studies in the U.S. and abroad have turned some long-held beliefs in the mental health field on their head. "When I was in training," recalls Drake, "I learned that you shouldn't stress people [with a mental illness] with work. It could cause them to decompensate . . . or break down and have worse symptoms or have another episode of their illness."
After the demonstrated success of IPS in the randomized controlled trial, Drake and Becker worked with West Central Behavioral Health to convert their day treatment program to a supported employment program. Day treatment programs, which are funded by Medicaid, usually consist of structured group outings and activities. Such programs provide opportunities for socialization but do little to help individuals integrate into society. "We tried to change the orientation toward getting more of a life and being part of the community," says Becker. A year later, Becker, Drake, and their collaborators interviewed clients, their families, and West Central staff. "We wanted to see," Becker explains, "did any of the bad outcomes happen?" Did working and looking for work lead to more hospitalizations, homelessness, or trouble with the law? The answer was no. (However, clients did seem to miss socializing with other people with mental illness, so they are now encouraged to start their own peer-run organizations.)
With supported employment, individuals' "symptoms are definitely minimized," Wilcox agrees, "whether it be alcohol or drugs or mental health symptoms. When they're going to work, their symptoms are minimized."
Testimonials published in the J&J-Dartmouth newsletter support that claim. A woman identified as Sally, who works part-time as a dog groomer, reported in the Summer 2009 issue that supported employment had aided her recovery from bipolar disorder and post-traumatic stress disorder.
"I've had trouble with alcohol and suicidal thoughts and attempts," wrote Sally. "One year I was in and out of the hospital 14 times. . . . [Now] I feel more satisfied and fulfilled with my life. When people are active out there with the public, it takes their mind off their disability."
In the Fall 2007 issue, a Vermonter named Kevin Griffin wrote about his experience. (He gave his full name but did not disclose his mental illness.) At the time, he had been working in the kitchen of a nursing home for four years. Before that, he had gone a few years without working.
"It makes me feel good to have something to do," wrote Griffin. "I want to support myself. It's also good to get out and see people. When you're on disability, most of your money goes to food and rent. Now I have options."
Employment has helped Barbara Kisk become more independent, too. She's moved out of the group home and now lives in an apartment building designated as low-income housing. On the days she isn't scheduled to work, she exercises at the community center.
And every evening, she gets together for tea with several other women in her building. Because of her job, "I have something I can engage, talk about," she says. "And I'm proud."
Personal testimonials may be powerful, but Becker, Drake and their colleagues are researchers. As such, they focus much of their effort on gathering empirical evidence about the success of IPS supported employment, as well as about where there's room for improvement.
"We're a research center. We're not an advocacy organization," says Drake. "Our job is to give the government agencies at the federal and the state level and the advocacy agencies . . . good data."
The PRC estimates that IPS supported employment could save state and federal governments $368 million per year if fully implemented nationwide. About 3.3 million people receive Social Security payments because of mental illness—"the largest and most rapidly growing subgroup of Social Security disability beneficiaries," noted a recent PRC paper.
In the July 2007 issue of Psychiatric Services, Becker, Drake, and their collaborators reported the results of interviews conducted with 38 people who first received IPS services eight to 12 years ago. They found that 71% of participants were currently working, and that of those who were working, 67% held a competitive job. Most of the participants, 71% percent, had worked more than half of the follow-up period. They also discovered several themes. First, participants' psychiatric problems were "persistent and pervasive" and required ongoing management and support from employment specialists as well as medical professionals. Another theme was that participants generally preferred to work part-time because of the lesser demands of part-time work and the fear of losing Social Security and health-care entitlements if their incomes rose too high.
"We're working with Social Security to help them change their rules for people with psychiatric disability," says Drake. He, Becker, and others at the PRC meet regularly with the Social Security Administration (SSA). The rules should "facilitate people getting back to work rather than keeping them unemployed," Drake argues.
The PRC is also helping to run a $55-million ongoing study for the SSA, called the Mental Health Treatment Study. The randomized controlled trial is being conducted in 22 different cities and has recruited people with schizophrenia or schizoaffective disorder who receive Social Security Disability Insurance. The study is aiming to assess the effectiveness and cost-effectiveness of IPS supported employment and evidence-based pharmacological and psychosocial treatments. Participants are exempt from disability reviews by the SSA while they are in the study, so as not to inhibit the number of hours they choose to work.
The PRC has been doing some economic modeling of its own, too. IPS supported employment could save state and federal governments $368 million per year if fully implemented nationwide, according to estimates by Drake; Dartmouth economist Jonathan Skinner; Dr. Howard Goldman, a University of Maryland professor of mental health policy; and Dr. Gary Bond, a professor of psychology from Indiana who recently joined the PRC. "People with psychiatric impairments constitute the largest and most rapidly growing subgroup of Social Security disability beneficiaries," Drake et al. wrote in the May-June 2009 issue of Health Affairs. About 3.3 million people currently receive Social Security payments due to mental illness (excluding mental retardation), they noted. And "surveys of adults with psychiatric disabilities consistently find that 50-70% of them have a strong preference to work." Despite these figures and the demonstrated success of supported employment, "mental health programs often eliminate vocational services when funding fluctuates," they add.
"Vocational services are not everything that somebody with mental illness needs," Drake admits. "But we would like to see those other services demonstrate that they actually work. A lot of what gets called rehabilitation, and what people argue for, is what they like doing, even though there's no evidence that it helps people. As researchers, we all find it hard to believe that Medicaid pays for day treatment services that we know are harmful to people and doesn't pay for supported employment, which we know is really helpful to people. To us, as rational scientists, that makes no sense at all."
Most supported employment programs have to "cobble together funding," explains Sarah Swanson, one of the national trainers for the J&J-Dartmouth program. "And it's extremely difficult," she adds. Swanson began working with the program when she was a vocational rehabilitation supervisor in Ohio.
"When a program is new, there's a lot of apprehension about whether or not clients can actually work," Swanson admits. "But then, as people start to get jobs and are successful, that's the thing that changes everybody's mind. You could show them research data forever and they won't quite believe it. Then some client who is very symptomatic will get a job and keep it, and that totally convinces everyone," employers included.
Swanson knows of a man with severe schizophrenia who refuses to take medication, regularly hears voices and talks to the voices, and is not comfortable with people. An IPS specialist helped him get a part-time job as a dishwasher, a job that he's kept for over a year now. "His boss loves him because he shows up," says Swanson. Dishwashing, or some of the other jobs clients do, may not "sound that exciting," she acknowledges. "But then when they start to tell you what they had to overcome to go back to work and be able to work, it's very inspirational."
A key tenet of IPS is focusing on the strengths of an individual and not on the symptoms of their illness. Becker's "genius" in designing the IPS model, says Drake, was "figuring out that you don't try to change people. You try to see who they are and what they're like now and find something they can do. If the client doesn't take baths and smells terrible and urinates all over himself, get him a job in the garbage or recycling center or some place like that, where nobody cares how he smells. We used to spend years trying to teach personal hygiene to people like that, without much success."
Clients' jobs "may not sound that exciting," says a national IPS trainer. "But then when they start to tell you what they had to overcome to go back to work . . . it's very inspirational." Becker's "genius" in designing the IPS model, says Drake, was "figuring out that you don't try to change people. You try to see who they are . . . and find something they can do."
One of Drake's favorite client stories is about a woman in an inner city who had been a prostitute and heroin addict since childhood, in addition to suffering from mental illness. A program affiliated with J&J-Dartmouth was able to help her get off heroin and "semi-stabilized," says Drake. Then an employment specialist helped her to find a job drawing blood. It was an ideal match for her skills, since heroin addicts "learn how to draw blood from veins that are sclerosed over and hard to get to," Drake explains. "This lady knew all of the secrets about how you draw blood. And she became tremendously successful and [was] hired by several hospitals in the city to go around and help them with their blood draws on people who were difficult. Isn't that amazing?"
Barbara Kisk's job as a part-time dishwasher has been just the right fit for her. Her employer once offered to train her as a cook, but she declined.
"I like doing what I'm doing there," says Kisk. "It's something I can go in, and automatically do my little tasks. One, two, three, four, five—go through the motions. And then I'm fine."
"I just was reviewing my situation this morning," Kisk reflects, "and I thought, 'Wow! You've got everything comfortable. You've got your own place. You've got a little job. You've got things to look forward to. You've made friends. And you've got help.' Robin's always been right there on the side."
Kisk is also proud that she doesn't need a social worker, too, and only has to see her psychiatrist once every six months and Wilcox once every few weeks. "I'm pretty much on my own," she says.
That makes her happy. It certainly beats thinking that the FBI is on her tail.
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