NAMI HelpLine

September 14, 2015

By Kenneth J. Dudek

 
 Fountain House member Vivian and her nephew, Greg.

Lately, Fountain House and clubhouses modeled after it around the nation and the world have received significant recognition for their pioneering work in the treatment of serious mental illnesses.

E. Fuller Torrey’s latest book, American Psychosis, calls the clubhouse model “the best model,” citing its combination of access to supportive housing, vocational opportunities and socialization. In addition to Fountain House’s clubhouse in New York City, Torrey calls Genesis Club in Massachusetts, Independence House in St. Louis, Alliance House in Salt Lake City and Gateway House in South Carolina “outstanding.” I would add Club Cadillac in Michigan, Vincent House in Florida and Magnolia Clubhouse in Cleveland to the list as well. 

Simply stated, clubhouses are community-based centers open to individuals with mental illness. Clubhouse members have the opportunity to gain skills, locate a job, find housing and pursue continuing education.

In 2014, the Conrad N. Hilton Foundation selected Fountain House/Clubhouse International as the winner of the world’s largest and most prestigious humanitarian award, the Hilton Humanitarian Prize. This is the first time in the prize’s history that a mental health organization has been selected. Also in 2014, NAMI recognized Fountain House’s supported employment program as an evidenced-based model, and the New York Association of Psychiatric Rehabilitation Services (NYAPRS) presented Fountain House with the Marty Smith Memorial Award.

This recognition has positioned clubhouses at the center of an emerging global dialogue about mental health. I would like to seize the momentum generated by this favorable attention to point out what I believe is truly at the core of our success: The clubhouse model is and always has been a partnership, originated and built by people with mental illness and their families and supporters.

Countless programs throughout the U.S. (including several of those mentioned by Torrey) and around the world were started by mothers, fathers, sisters and brothers, together with, and in support of, their loved ones living with mental illness. These families have advocated tirelessly with local governments, leveraged personal and professional networks for funds and job opportunities, and undertaken myriad actions to ensure that their relatives with mental illness achieve their potential and live fulfilling and productive lives. For some, that has meant returning to school or work; for others, it has meant obtaining supportive housing and accessing comprehensive medical and psychiatric care; and for still others, it has meant having a community to which they belong. 

I recently had the chance to speak with a group of members and their families at our clubhouse in New York City.

Karen spoke to me about her son Justin’s journey from diagnosis to joining Fountain House. “The best thing I ever did was take the NAMI Family-to-Family class at the National Alliance for Mental Illness,” she says. “It taught me to understand his symptoms and to realize when he was having an episode.” It was through NAMI that Karen heard about Fountain House. “I knew Justin would be comfortable with the autonomy and sense of community of the clubhouse. People are different whether or not they have mental illness. Clubhouses understand those differences and work with members as individuals.”

I also spoke to Leslie about her son, another clubhouse member. “You beat yourself up a little when you have a kid with mental illness in a way a parent wouldn’t do if their kid had another illness, like juvenile diabetes. You think, ‘Well, if I hadn’t done this or if I had caught that….’ But in less than a year at Fountain House, my son has learned to manage his own medication, do chores, get around the city by himself and make some good friends. He wants to go to back to college. He is not only stabilized, but he is thriving.” 

Another member, Betty, describes what she feels makes clubhouses so effective: “A good community not only makes you accountable, it also pushes and inspires you to fulfill your potential. At first, a clubhouse for people with mental illness’ sounded like something out of a nightmare. It was quite the opposite. I found a professional work environment, where people go to happily volunteer their skills to learn, to heal and to prosper.” 

Since becoming a member, Betty has reconnected with her family after years of absence. “My mom flew in to visit me, and I gave her a tour of the clubhouse.  When she met my worker and the fellow members, she thanked them for giving me back to her. She had thought I was lost forever — sealed away by this disease that rattled my brain.”

Fountain House is visited by mental health professionals and family members from all over the world. In the 1970s, it received a grant from the National Institute of Mental Health to formally train people to replicate and implement its approach. Currently, there are more than 300 clubhouses in 30 states and 34 countries serving 100,000 people. To further disseminate the clubhouse model to the world, I co-wrote Fountain House: Creating Community in Mental Health Practice with our director of training and  education, Dr. Alan Doyle, and psychotherapist Julius Lanoil. The book, published in 2013 and  reviewed by experts including Oliver Sacks, M.D., recaps the history of its unique working communities. 

 In American Psychosis, Torrey writes, “Sixty years after clubhouses began, there should be 2,000 of them … and states should be opening additional ones, not closing them down.” But more empirical research on how we achieve such outcomes must be done to generate the kind of funding necessary to grow the clubhouse movement.

Over the years, academic researchers have intermittently attempted to measure the effectiveness of the Fountain House model, but for the most part, their studies have been inadequate in capturing the true impact of its work. Aside from recent recognition as an evidence-based program by SAMHSA — not to be discounted as insignificant — little has been done to determine what really makes its community-based approach, which has been developed by people with mental illness and their families, so successful.

There is hope on the horizon, however. Recently, Dr. Zachary Grinspan of Weill Cornell completed a study showing how members at the clubhouse in New York City are less likely to be admitted to the emergency department than non-members. Additionally, Fountain House has recently entered into a partnership with the World Health Organization and Columbia University’s Mailman School of Public Health to study early mortality among people living with mental illness. I am heartened that this research will establish best practices to extend and improve the quality of life for people with mental illness that can be implemented by governments and health care professionals around the world.

Still, more research needs to be done; in return, more funding for clubhouses will likely follow. Now that recent attention generated by Hilton, NAMI, SAMHSA and the World Health Organization has placed clubhouses in the spotlight, we implore academia to conduct independent studies of these programs around the country. I am certain that our members and their families would gladlyvolunteer to demonstrate the transformative power of what we have created together.

Kenneth J. Dudek is president of Fountain House. His career spans more than 25 years in community mental health. Under his leadership, Fountain House won the 2014 Conrad N. Hilton Humanitarian Prize, affirming the success of its recovery model and placing mental health on the global humanitarian agenda.

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