Clubhouse Europe, in concert with Fountain House New York, Fountain House Stockholm, and Ersta Skondal Hogskola announces the Second International Symposium on clubhouse research scheduled for August 8 and 9, 2013 in Stockholm Sweden. The Symposium continues the work of the initial gathering in June 2010 sponsored at Fountain House New York that resulted in the publication of an international journal on the practice of mutual aid in clubhouse communities (International Journal of Self Help and Self Care, Volume 7, Number 1 / 2013). The August Symposium will provide an opportunity for those involved in clubhouse-related research to meet and share the results of their inquirieswith clubhouse practitioners.
Presentations by international researchers on the course of their field studies will include the following:
Thomas Craig, MD (UK), TBA
Bjorn-Anders Larsson (Sweden), TBA
Magnus Karlsson, PhD (Sweden), "Developing the Clubhouse Model - Some Findings from the Past"
Rosario Larata, PhD (Japan/Italy), "An Examination of the Structures of Governance within Clubhouses in Japan, UK, and Italy."
Outi Hietala, PhD (Finland), "Fluid Orientations and Multiple Meanings - Three Complimentary Modes of Membership at Clubhouse"
Esko Hanninen, Chair of EPCD Research Committee, "Choice for Recovery"
Kimiko Tanaka, PhD (USA), "Clubhouse Culture and Psychiatric Recovery"
Yoshiko Boregren Matsui, PhD (Sweden), TBA
Frank Wang, PhD (Taiwan), TBA
The Symposium intends to publish a compendium of presentations and a selected bibliography of related research.
The Symposium will be hosted by Ersta Skondal Hogskola with accomodations on their campus located outside Stockholm, Sweden. Participants (excluding presenters) will be charged a nominal fee to cover costs for meals and operational support. Accomodations are limited and participants are encouraged to register their interest in attending with Bjorn Asplund.
What has largely been missing, though, is an intervention to help these young people get back on track - that is, a means of successful social rehabilitation. Often, they are forced to interrupt their education, they lose their social networks, and they’re faced with the fear of being diagnosed with a mental illness and living with the stigma it carries. It’s easy for these young people to become discouraged, hopeless, and isolated. Fountain House has been at the forefront of innovative community mental health initiatives for 65 years, so it was only natural that we would try to address this pressing need.
Young adults experiencing mental illness for the first time have many obstacles to overcome in seeking support from traditional mental health programs. First, they often lack needed benefits to afford effective mental health care. Second, young people frequently receive incorrect and/or multiple diagnoses, so they may not even be eligible to participate in programs designed to help people with mental illness. Adolescence is a transitional period, and it can be difficult to tease out an emerging illness from other behavioral or adjustment problems. Lastly, they are often isolated and ashamed of their illness, so reaching out for help becomes very difficult.
The new UNITY Project (Understanding, Networking and Integrating Transitional Youth) was created to reach out to these young adults and help them connect to resources and support to continue on to achieve their goals. We made it a point to lower the threshold to admittance so young adults could easily and quickly start to receive much-needed support. We don’t use a complex and lengthy intake process; the on-line application is so simple that young adults can fill it out themselves in 30 seconds. Rolling admission allows applicants to start the program within a few days of filling out the application, thus getting them connected before they change their mind or get discouraged. Fountain House funds the project entirely, so participants don’t need to have any health insurance to join the free program.
We also know that lengthy programs don’t work for young adults, who are eager to move on with their lives as soon as possible; thus the UNITY Project is only eight weeks long. A lot can be accomplished in this short but intense timeframe. The goal is to connect every participant to a support system that can be accessed throughout recovery. For some, this might be membership to a program like Fountain House; for others it might be getting back to school and enrolling with the mental health services provided on campus; while other people might be best served by finding a suitable mental health residential program. The goals are generated by the participants with an eye on realistic, short-term interventions that can have lasting results.
For example, one young woman, “Isabella,” 19, came to UNITY through her foster care residence. She wasn’t receiving proper treatment because she had been given several different diagnoses in her mid- teens, due to a substance abuse problem at that time. Additionally, she wanted to go to college, but she only had an IEP diploma - a diploma that’s granted in a variety of special-needs situations but isn’t recognized by colleges and universities. We connected her to good clinical care at The Sidney Baer Center, where she was diagnosed with schizophrenia and prescribed medication that alleviated her psychiatric symptoms. We also referred her to an alternative high school so that she could complete the coursework she was lacking for college admittance. At a recent UNITY reunion, she told us that she would finish high school in June and that she has already been accepted as a freshman at LaGuardia Community College for the fall.
UNITY is unique in that it’s a hybrid of professional mental health services and peer support. Participants have ready access to trained social workers and clinical services from psychiatrists. Participants are also assigned peer-mentors—young people who have successfully managed their own mental illness. These peers meet weekly with participants to provide support, inspiration, and guidance through the entire eight-week program.
UNITY is not only one-on-one support; it creates a social network for the participants. By socializing, cooking, and eating dinner together before meeting with their mentors or social workers, they can build friendships with people who understand and face the same challenges. During their eight weeks with UNITY, they work to reach their goals, become integrated into a social and understanding community, and connect to the supports they will need to further their recovery and life’s ambitions.
More than 300 programs around the world have been modeled on Fountain House’s unique clubhouse approach, 195 of them located in the United States. We envision that, as awareness of the UNITY Project grows, these organizations will develop similar initiatives to help young adults more easily access the support they need to build healthy, productive lives.
Despite the rainy morning, thousands of participants turned out at the South Street Seaport on Saturday, May 11, 2013 to help the National Alliance on Mental Illness (NAMI) raise money and awareness for mental illness and fight stigma by joining in their annual walk.
Each month the Education Unit hosts a monthly student gathering, which is a time for current and future students to come together and offer support to each other. We discuss topics such as using the resources in college accessibility offices, time management, and how to overcome the anxiety of talking to professors; a common theme is advocacy. How can you empower yourself to get what you need?
While we were in the brainstorming/planning phase of the gathering, I brought up an idea that piqued people’s interest: how to write an academic paper. I thought that it would be helpful, as quite a few members are in college or aspire to attend in the future. I got the “go-ahead” and started working on creating a PowerPoint presentation, which involved several components.
First, I discussed the importance of getting specific directions for the assignment. The professor might give you a handout about the assignment, but more than likely the information will be found in the syllabus. A syllabus is basically a guide to the class, which lists the professor’s office hours, grading policies, and the class schedule/assignment due dates; you might also see “syllabus subject to change” towards the end of the document. This is because there might be a snowstorm, other natural disaster, or a day when the professor can’t be in class. As a result, assignment due dates might be pushed back, but always be prepared. By the time that you’re a junior or senior in college, the phrase “I didn’t know” uttered by some students will guarantee a professor’s response of “Not my problem.” Some professors will be nice and include a grading rubric along with the paper’s directions found on the syllabus; this will break down evaluation into different categories.
I also discussed how the library can assist you in the paper-writing process. At my school, the library staff regularly holds workshops on Modern Language Association (MLA) and American Psychological Association (APA) citations, give tutorials on accessing databases that contain scholarly journal articles, and help students navigate various resources. To expand a little on MLA and APA citations, there are specific academic fields for the two categories; for English and humanities courses, MLA is the preferred method for referencing your sources. Conversely, if you’re attending a college that focuses on math or natural and social sciences, you will be using the “gold standard” known as APA.
Following this brief overview, I turned to the serious matter of plagiarism. Many times, college students think that they can “get over” on their professors and just slip somebody else’s words into a paper - and they couldn’t be more wrong. From what I understand, some colleges subscribe to websites such as Safe Assign and turnitin.com, and if a professor suspects that their students’ work might not be genuine, they can view statistics that indicate the likelihood of a student “copying-and-pasting” their work. This means that the student will have stolen other work and claimed it as his or her own. I understand that college is stressful and the temptation to “borrow” other sources may sound appealing, but a remark from a past professor always comes to mind: “I would rather have something genuine and a little late than a product that is thrown together at the last minute.” If you have to take an extension, then talk with your professor and express your concerns. More often than not, you’ll find that professors are human and will work with you to ensure the best possible outcome.
Overall, I thought that it was a successful gathering. Hopefully people can apply this advice to their current and future goals.
On Monday, April 29, 2013, Fountain House hosted its 10th Annual Symposium and Luncheon at The Pierre in New York City. This year’s theme was Mental Illness and the Family: Relationships, Resilience, and Recovery. Once again the inestimable Consuelo Mack, Executive Producer, Managing Editor and Anchor of Consuelo Mack WealthTrack, served as Master of Ceremonies. She led a learned panel through a discussion of mental illness and its relationship to familial attachments.
This year’s panel, all of whom toured Fountain House before the Symposium and Luncheon, consisted of
Dr. Robert J. Hilt, Associate Professor of Psychiatry at the University of Washington and Director of Community Relations, Department of Psychiatry at Seattle Children’s Hospital;
Dr. David Reiss, Clinical Professor in the Child Study Center at the Yale School of Medicine; and
Victoria Costello, Emmy award-winning science journalist and author of A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness.
Let’s start with an incident from Costello’s book, from a chapter titled, "Alex by the Dumpster, March 12, 1998" (“Alex” is the pseudonym Costello uses for her son):
“The psychiatrist on duty at the UCLA hospital adolescent ward, Dr. C. looked up from her desk where she’d been scrutinizing Alex’s admission paperwork.
‘How would you describe your son’s recent behavior?’
“I flashed on the afternoon when I found him hiding by the dumpster behind Fairfax High School. I can’t tell her that. I quickly decided, searching for some less awful way to describe Alex’s troubles.” (p. 1)
Depending on your family of origin, this may be an all too familiar scenario. We who live with a mental illness are so used to telling our stories that we sometimes forget that our parents, siblings, or other relatives live part of their lives through our challenges. Sometimes it’s hard for them to tell outsiders, a shame and self-stigma Costello calls, “the destructive power of family secrets.” But family and family support is so important, especially for those of us living with mental illness. As Fountain House President, Kenn Dudek, commented, “Members who have families are extremely lucky. Members who don’t have family have Fountain House.”
Ms. Mack opened the Symposium by asking for a show of hands to the question, “How many have family members with mental illness?” There was a wide showing of hands. Ms. Mack then stated, “Or should I say, how many don’t have a family member with mental illness?” to which there was only a spattering of hands. She continued, “Family is where it all begins for us.”
Each panel member had his or her own specialty. Dr. Reiss explained why the family history is so important. He pointed out that while children can inherent their parents’ illnesses, adopted children will suffer from depression only if the mother suffers from it. (This brought up a quick murmuring about men/fathers and their influence, but the panel discussed parental relationships later). Dr. Reiss stated that we need to explore the role environment plays in mental illness.
Dr. Hilt discussed psychotropic medications and their use by young people for such disorders as ADHD, psychotic experiences, autism, and bipolar, among others. He explained how there has been a three-fold rise in medication use in young people. While this increase has raised concerns among the public, the greater public health issue is really a pervasive lack of treatment and a lack of early intervention.
Ms. Costello reported that her son, “Alex” is now 32, fully functioning, working, and has a social life.” She discussed self-stigma and self-medication, and how crucial early intervention is for those with mental illness. She discussed three generations of mental illness in her family which included a sister addicted to drugs, a father who was “sad” all the time, and a grandfather who may have committed suicide on railroad tracks. She went on to explain how we who are parents must treat ourselves first; get interventions for our loved ones as needed secondly; and last but not least, we must recognize that “nurture trumps nature.”
In the round table discussion, nature versus nurture was the final topic. Dr. Hilt discussed “good enough parenting” and how parents must learn to “be calm … be consistent … and to be caring.” Dr. Reiss stated that, “parents who relate well to each other don’t worry about being bad parents … while single parents need the community.” Ms. Costello pointed out “parents/families are first responders.” In summation, Dr. Hilt called for “maintaining hope” and Ms. Costello reminds us “treatment works, recovery is possible.”
After lunch we viewed a film featuring a Fountain House member who continued the theme of the day by stating, “I’m glad I have a home.” And then Mr. Dudek presented the Fountain House 2013 Humanitarian Award to author, lecturer, and philanthropist, Andrew Solomon. Mr. Solomon is a force to be reckoned with in the fields of mental health, education, and the arts. He has authored award-winning books The Irony Tower: Soviet Artists in a Time of Glasnost, The Noonday Demon: An Atlas of Depression, and Far From the Tree: Parents, Children, and the Search for Identity, which won the 2012 National Book Critics Circle Award for non-fiction. Here’s an especially thought-provoking excerpt from that book:
“There is no such thing as reproduction. When two people decide to have a baby, they engage in an act of production, and the widespread use of the word reproduction for this activity, with its implication that two people are but braiding themselves together, is at best a euphemism to comfort prospective parents before they get in over their heads. … it is often ourselves that we would like to see live forever, not someone with a personality of his own. … Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination.” (p. 1)
Parents want more for their children than they had – higher degrees, better jobs, more money, and bigger houses – as if materials things are what make us strong. In their unconsciously selfish way, many parents live through their children; they are but reflections of mother and father. But what do parents do when that reflection becomes a funhouse mirror full of the kind of distortions mental illness can reflect? What do educated parents do when their son or daughter has his or her first psychotic break freshmen year of college, making it impossible to continue with studies? How does the CEO tell his friends that his son has a temporary job as an outdoor messenger, and he’s having problems getting to work because his medications make it difficult for him to wake up in the morning?
Is the mental illness a disease that will be passed on to grandchildren (Dr. Reiss believes it is likely); will there even be any grandchildren (Dr. Reiss discussed this briefly)? And what if that big house is a three-sided crate under the Brooklyn Bridge or a shared room in a supported apartment? How do parents explain to their friends that they attended this year’s Symposium to get some new insights into how to manage their relationship with their son or daughter, or do they just pass it off as attendance at a charity they support?
Some of these questions are answerable. Others don’t have tailored responses. But I agree with the panelists and Solomon when they stated that there is nothing like familial support, whether that support comes from family-of-origin, extended family, blended family, or created family.
I wrote a poem that ends with these words:
Families: as in who begat whom, and who begat whom, and who begat whom begat the rebuilding of deconstructed lives marred by unhealthy psychological and physiological phenomenon that steal away our hearts, our minds, our souls. But we are still family.
Davida Adedjouma, LMSW Education Unit and Board of Directors, Fountain House
Nevertheless the motivation for this wave of generosity is driven by the stigma associated with mental illness. The financial benefit the mental health community may receive is more than offset by its cost, i.e., reinforcing the connection between violence and mental illness in the public perception. Discussing mental health funding in the context of gun violence legislation erroneously transforms a public health issue into a public safety issue. Once again, people with serious mental illness get the blame.
Summer Berman, Fountain House Executive Fellow, took up the dilemma of addressing mental health reform within the context of gun violence in a recent blog post. She wrote:
“[W]hen we use the risk of violence as a rationale for better and more available services for people with mental illness, we put at risk all the good works we have done over the years to reduce the stigma surrounding mental illness. When we conflate mental illness and violence we do ourselves and our community a disservice."
The Bazelon Center for Mental Health Law, the leading national legal-advocacy organization representing people with mental disabilities, asserts that people with psychiatric disabilities are “a misplaced priority for gun legislation.” Earlier this week, Bazelon announced the release of a paper titled Wrong Focus: Mental Health in the Gun Safety Debate. I’m grateful to them for allowing me to share a portion of the announcement, a thoughtful statement from Jennifer Mathis, their Director of Programs.
"Studies have shown that mental illness by itself is not statistically related to violence, and that people with serious mental illnesses are far more likely to be the victims of violent crimes than the perpetrators. And yet, despite the facts, many lawmakers and journalists continue to stigmatize people with psychiatric disabilities as the primary concern related to gun violence.
Though fixing our broken mental health system is an imperative, we should do so separately from the gun debate, as mental health reforms are likely to have little impact on gun violence.
We know that services such as supportive housing, mobile services, supported employment, and peer support services are extremely effective in enabling people with psychiatric disabilities to succeed. These technologies are also less costly than emergency rooms, psychiatric hospitals, jails, and shelters. But they are unavailable to thousands of Americans who need them.
We should afford Americans with psychiatric disabilities the services they need because it will improve people's lives and save money. Not because it is a distraction from the primary causes of gun violence."
People living with mental illness are not just a problem to be dealt with, as indicated by the tenor of the current national conversation. They can live full, productive, and satisfying lives as contributing members of our society. Many do. Centers in the community that support recovery and opportunity are crucial, and we enthusiastically support funding initiatives to establish and improve them. However, we are not grateful if it comes at the expense of the reputation of the people they are meant to serve.
Jerry Dincin (1930 - 2013) worked at Fountain House from1958 to 1964. He was the first person charged with replicating the Fountain House model, developing two programs in New Jersey before moving to Chicago to become the Executive Director of Thresholds. The Fountain House communitiy offers sincere condolences to Mr. Dincin's family and friends.
The year I came to Fountain House, 1964, turned out to be Jerry's last year before taking the position of Executive Director of Thresholds, a new Clubhouse/Psychosocial Rehabilitation/Psychiatric Rehabilitation program in Chicago. During that year I didn't get to spend much time with Jerry, because he was out developing Friendship House and Prospect House, two new programs in New Jersey. (It seems that in this period the replication of the Fountain House model would be carried out, in a hands-on manner, by trained Fountain House staff.) Jerry was highly regarded by all and could or should have been the assistant director of Fountain House.
After Jerry moved to Chicago and sometime after I was appointed Program Director at Fountain House, then-Executive Director John Beard asked me to join him on a two-day trip to attend a conference in Chicago. The first evening after we arrived, we met Jerry for dinner. John and Jerry talked about many things, but I clearly remember their conversation about starting a professional organization made up of Psychosocial Rehabilitation programs. Jerry was very excited about the prospect of such an organization.
On the plane ride home, John appointed me as the Fountain House representative to help develop any formal professional organization. I should explain that from approximately 1972 to 1980 a group of programs identifying themselves as psychosocial rehabilitation programs were meeting annually to share theory, research and program innovations. The participants at these early meetings were made up of a small group of programs: Fountain House in New York, Thresholds in Chicago, Horizon House in Philadelphia, Hill House in Cleveland, Friendship House and Prospect House in New Jersey, Forward House in Montreal, and a few others made up the core programs that met in the early days.
As time went by the number of programs sending staff to these annual meetings grew until, at the urging of Jerry and Irv Rutman, the Executive Director of Horizon House, a working group was formed to plan the creation of a formal professional organization: the International Association of Psychosocial Rehabilitation Services (IAPSRS).
Once it became clear that an organization would be formed, John provided support by allowing for my involvement and participation. As a representative of Fountain House and later as the Director of The Club (in New Jersey), I socialized and worked with Jerry and the other founding IAPSRS members to create and grow the organization. Jerry and I also co-chaired some of the more exciting symposia in which we debated the importance of program cohesion and program diversity. Also, to my chagrin, we competed for a National Institute of Mental Health (NIMH) training grant that he won for Thresholds. In all my dealings with him, I came to know him as a creative and passionate soldier and advocate for people with mental illness with a fierceness and dedication that is hard to duplicate.
Julius Lanoil Consultant and former Program Director, Fountain House