When Donna Orrin was voted "Most Active Senior" in high school, it was an unde statement. She edited the yearbook, organized the first Earth Day and won eight debate trophies. Out of 8,000 students in the Livonia school district, she was named Humanitarian of the Year.
Yet none of these and other achievements could dispel the deep depression that had dogged her since childhood. "I never felt I was good enough, that I had anything of value to offer. And I never shared these negative thoughts with anyone," she relates, "because I was sure my assumptions were true."
Her carefully ordered world unraveled in 1970 when she began college. Within months, she stopped going to classes, withdrew from friends and even attempted suicide. Diagnosed as manic depressive with psychotic symptoms, she would be hospitalized 30 times over the next 20 years.
Yet during the same period, Orrin earned a B.A. with honors from Oakland University and an MSW from Michigan in 1988. Over the past dozen years, she has published articles and books related to mental illness and recovery, and co-produced an award-winning documentary based on her writing workshops with psychiatric patients. She now serves on the Governor's Michigan Mental Health Commission, works in member services for the Washtenaw Community Health Organization, and lectures to professionals, consumers and their families throughout the country. She has not been hospitalized for nearly 13 years. Orrin's recovery illustrates the promise of a constellation of principals and services known as psychosocial rehabilitation (PSR). As the name implies, PSR aims to help people with emotional disabilities, even those with long-term, serious mental illnesses, to readjust to community life. Recovery does not necessarily mean "cure." Rather, according to the International Association for Psychosocial Rehabilitation, the goal is:
... to enable individuals to compensate for, or eliminate, the functional deficits and to restore ability for independent living .. . PSR providers build on the strengths of each individual by emphasizing wellness and by including families and the community in the recovery process. (1995)
"PSR takes a comprehensive approach to providing vocational, residential, social/recreational, educational, and personal adjustment services," says Social Work Professor Carol Mowbray, a leading proponent of this practice approach. "Individuals set goals of their own choosing and working on acquiring the skills and supports they need to pursue their rehabilitation goals. Taking charge of their own recovery contributes to a sense of hope and self-worth."
Improved medications for people with serious mental illnesses are helping to make this possible. Many of the highly-sedating drugs prescribed in the 1950s and '60s have been replaced by medications that are less harmful to clear thinking and understanding. As a result of these medications and the use of PSR strategies, adults with psychiatric disabilities arc better able to pursue their personal goals.
These goals may be as basic as finding a safe place to live, or as lofty as finishing college or launching a career. PSR takes a number of forms, mostly falling under the general categories of supported housing, supported education and supported employment.
Supported is the defining word.
"One of the keys to PSR's effectiveness is that it represents a partnership between the person with a disability and the treating professional," Mowbray explains. "And an increasing body of research shows that it works. Psychosocial rehabilitation is congruent with social work's increased emphasis on evidencebased practice."
A New Model Takes Root
PSR is often associated with the policies of deinstitutionalization and community-based mental health services that emerged in the 1960s. But Mowbray and others trace its origins to Fountain House, founded in 1948 by ten mental hospital patients in New York City.
"After they were released, they met once a week on the steps of the public library, calling themselves WANA, for 'We Arc Not Alone,"' says assistant professor of social work Mark Holter. "They formed a selfhelp group to find jobs, housing and other paths to independence. And they spread the message to psychiatric hospital patients: when you get out, this is where you can come."
Through the involvement of a social worker, the group secured a donated brownstone on West 47th which became the first "clubhouse." Fountain House thrives today, a model partnership between members and professional staff. In 2000, there were at least 350 clubhouses worldwide in 44 U.S. states and 21 other countries, serving an estimated 25,000 psychiatric consumers.
"Basically, the clubhouses are places where people with mental illness can get vocational experience by running the program along with staff. They can participate in preparing and serving lunch, handle clerical duties or other services," Holter explains. "The clubhouses help members lease apartments, manage everyday tasks and transition back into school or the workforce."
Holter did his field placement at Fountain House while earning an MSW and later a Ph.D. at Columbia. He worked in supported education and case management, but ultimately focused his interests on homeless, mentally ill men making a transition from a shelter to community housing. His work in this area led to an NIMH (National Institute of Mental Health) funded dissertation grant on the benefits and costs of that program.
"I chose social work because of a commitment to folks in need, and I think, by any definition, people who experience both severe mental illness and homelessness are the most in need," Holter explains. "To be in a shelter is to be in a state of crisis."
"The mental illness may be complicated by drug or alcohol abuse. So first, people need help to become stabilized, their medications adjusted. And the transition to housing is not necessarily as straightforward as it sounds. Living on the street, people adopt fierce survival skills-far different from the spirit of cooperation required in group housing and other more typical social situations."
And housing is just a piece of the solution, Holter continues. "The goal is to create a stable living environment along with services such as supported education and/or supported employment. Because what you're really trying to provide is a more than a house; it's relationships, services-all the things that make up a community."
Transforming Self-Image
All people have the capacity to grow and change. This is one of the core tenets of PSR, which holds that many adults who have been treated for psychiatric disabilities can reenter the community and establish meaningful and productive lives.
PSR principles also emphasize hope, individual choice, self-dctenn ination and normalization. Services provide opportunities for consumers to engage in meaningful activity and build personal support networks. PSR practice recognizes the need to bring about social change.
How do you foster a sense of hopefulness? Mowbray suggests that it can begin with a single word: replacing "patient," a label that implies weakness and dependence, with the more positive identity of "student."
"Supported education (SEd) is a powerful way to bring about this transformation. For people with mental illness, the role of'student' can provide a clean slate as they reintegrate into society."
Many individuals with serious mental illnesses are highly motivated and academically competent. Mowbray has seen their confidence increase as a direct result of participating in a socially-valued activity (higher education) in a regular community setting (the college campus). Students gain autonomy through choosing classes and build support networks with mental health providers and peers. Each piece contributes to the recovery process.
Another key element is systems change. "SEd providers work proactively to make sure students with psychiatric disabilities have the accommodations they need to succeed, the same as for students with physical handicaps;' Mowbray says. This can include educating university faculty and administrators about some of the stereotypes and stigmas surrounding mental illness, and working to overcome discrimination.
Support services are designed to meet each individual's need and may include career counseling, developing an academic plan, information on enrollment, tutoring, trouble-shooting and applying for financial aid. While Mowbray has focused on higher education settings, SEd services can also be tailored to persons completing a GED.
A variation of PSR/SEd goes on at Boston University's Center for Psychiatric Rehabilitation: one track provides intensive computer skills training aimed at preparing participants for the job market; the second offers a variety of holistic courses that might be called "practical skills for living;' ranging from nutrition and fitness to communication and friendship.
"We differ from the U-M model in that these courses are much like what you'd find in a community college adult education program- not academically oriented," explains Senior Program Specialist Sasha Bowers (MSW/MPH '99). "But we are similar in that we provide a normalized environment-the BU campus, rather than a clinic-where the participants are students in a classroom, not patients in group therapy. The classes focus on people's potential to learn, grow and make choices about their lives."
Bowers specializes in teaching health education and wellness. In two of her newest courses, students use a technique called "photovoice" to "picture" personal and community issues that impact their health and recovery.
"The field has been so preoccupied with treating the psychiatric illness and getting people 'stable' that other aspects of their lives are falling by the wayside," she asserts. "We need to pay more attention to their physical health and housing needs and social relationships. Our classes at the Center try to touch on the multidimensional aspects of life and well-being.
"There is more to recovery than treating and stabilizing symptoms. It has to include education."
The Power of Hope
Restoring access to education seems particularly relevant because the symptoms of mental illness often manifest themselves during the college years. A 1995 national study estimated that at that point in time, there were 4.3 million U.S. residents who would have graduated from college had they not experienced an earlyonset psychiatric disability.
One of the most serious mental illnesses is schizophrenia, which affects 2.2 million adults or about l% of the population. "Going away to college, joining the military, a death in the family-all sorts of stressful life events can trigger schizophrenia. It often surfaces between the ages of 18 and 30," says assistant professor of social work Deborah Gioia, who specializes in this age group.
"People with milder disabilities can often be treated with medications and assisted through family support. Psychosocial rehabilitation holds promise for people with the most severe schizophrenia-those who couldn't be helped before.
"PSR plus the right medication produces the best outcomes," she adds. "These two together are seen as best practice."
Gioia has found her niche in the third principle area of PSR, supported employment. A licensed clinical social worker prior to her doctoral studies, she received an NIMH grant for her study, "The Meaning of Work for Young Adults with Schizophrenia."
As supported education includes vocational guidance and tutoring, supported employment may involve resume writing and interviewing skills. The social worker acts as a job coach, not just for getting employment but also for keeping it. "For example, the social worker might intervene if there is a problem with a boss or co-worker, or help the client understand the workplace culture," Gioia explains, adding that the best practice model of supported employment is in New Hampshire, where it has been documented in a manual and refined for over 10 years. Gioia is currently developing a new model of vocational recovery for persons with severe mental illness, borrowing from the field of normative career development. "Much of the advice for college graduates in general applies to this population," she says.
Although taking a low-level job is a perfectly valid choice, Gioia is especially interested in "helping people reconnect with the ambitions they had before the disability. We can help people think about work as a career and a life-long endeavor."
Consumer Activism and Leadership
Along with roles such as student and worker, people with mental illness view themselves as consumers. Some even see themselves as activists. "This is a huge change," declares Gioia. "They are recognizing that they have a voice. They can lobby for legislative changes. They monitor the news media to learn about new treatment approaches. Through PSR, they are playing a role in their own recovery."
"Recovery is still a fairly new concept for people with mental illness," Holter says. "Until fairly recently, it was generally believed that mental illness is a life sentence of inactivity and social isolation, but that is repeatedly being shown not to be the case.
"Recovery does not mean the illness goes away. It means that environmental and social supports are in place to overcome the barriers that the disability imposes. It's like using a prostheses or a wheelchair if you become paralyzed. The paralysis does not go away, but you're able to assume a meaningful role in society."
Some consumers are also taking a much larger role in delivery of mental health services.
"The clubhouses were a radical departure SO years ago because they were consumer-involved. But they are still basically run by professionals. Recently, we've seen the emergence of consumer-run mental health services, called 'drop-ins,'" reports Mowbray, "in which the director, staff and some, if not all, of the board members are consumers." She and Holter recently published a study of the drop-ins, the success of which appears prom1smg.
As people with mental illness become more active and visible in neighborhoods, schools, legislatures and worksites, will the stigma and stereotypes diminish?
"Mental illness still carries a huge stigma and is widely misunderstood," says Gioia, emphasizing a point made by others in the PSR field. "People with schiwphrenia are portrayed by movies and the media as deranged and dangerous. What the literature shows is that in fact, they are more likely to be victims. They are not sophisticated criminals."
Bowers found that she is drawn to people with severe mental illness because of their extraordinary courage and resilience. "And the fact that they are just people, not diagnoses, with histories and accomplishments, dreams and goals. There is so much to learn by merely listening to what people have to say about their lives and how tl1ey cope. If you sincerely care about people and believe in their potential, astonishing things can happen!"
"We need to put more positive success stories out there," says Orrin, who has written about many, including her own. "The most important thing is having a sense of hope. And if you waver, you need to recognize that absence of hope is a symptom, not a reality."
Orrin closely monitors her moods and medication and checks in with her therapist whenever necessary. She has created a list of over 100 positive actions she can take if she starts experiencing symptoms of depression, mania or psychosis.
"My favorite phrase of personcentered planning is dignity of risk. It means that mental health consumers can learn from our mistakes just like everyone else can."
As to those 30 hospitalizations in her distant past, she declares, "Relapse is not failure. When a baby is taking her first steps and keeps falling down, does the mother say, 'my child is failing to walk?' No, she says 'my child is learning to walk.' Relapse is part of recovery."
She is excited by the psychosocial rehabilitation movement. "Once you get to a certain point in your recovery, you want to help others with theirs. You want it to be less painful for them and for their families, and take less time. I always had causes back in high school;' she concludes. "I can't think of a better cause than this one."
-Pat Materka, a former U-M staff member, is a freelance writer who owns and operates the Ann Arbor Bed and Breakfast.