Obesity has been an issue for me for most of my life. Unfortunately, I have not taken my weight and my health as seriously as I should, and that has caused a change in the quality of my life. I’ve been encouraged by many people at Fountain House to partake in the wonderful activities that the Wellness Unit provides, and I’ve often declined due to frustration and fear. Seeing how the change in my quality of my life has impacted the things I want to do, I’ve been very inspired by the pre-diabetes group (YMCA’s Diabetes Prevention Program) that is offered weekly at Fountain House.
On Wednesdays, the pre-diabetes group meets in the Wellness Unit at 10:00 am. It is led by a woman named Judy, who is an employee of the YMCA near Lincoln Center. Her specialty is working with people who have eating issues that have led to a pre-diabetic condition. With her support and the methodology she teaches, she hopes that we can adjust our eating habits and thereby prevent the onset of diabetes.
Each week, Judy discusses a particular topic, teaching us how to eat properly. It is my belief that diabetes is caused by poor eating habits, many of which we as Fountain House members possess.
The first week she showed us how to track our food by writing down everything that we ate. That meant we had to be honest, even if we were eating high carbohydrate snacks that were detrimental to our health. She gave us each a package with very well defined instructions as to how to go about this. We needed to log our weight daily and keep a graph to monitor our progress. Often people with eating disorders are unaware of what they are eating, and they put things into their mouths that are not good for them. It was through this that we could get a gauge of what we were doing.
She then went on to have us track the fats in our food, learning how to decipher the various contents of any of the foods that we were eating. We were all prone to snack, so she brought in a series of delectable snacks and showed us how to decipher which was the better of the pack. It was not necessarily the one that we wanted to pick when we were hungry.
It is still at the beginning of the group, so there is so much more for us to learn. Changing the way we eat is a learning process. However, we are learning that what we do with our lives today impacts how we live our lives in the future. We have an opportunity to discuss our issues in a safe, supportive environment, where we can learn from our peers – other Fountain House members - as well as from Judy, who is trained in this matter.
I am very grateful for this group. It is very hard for me. Tasks like writing the paper and doing unit work are far easier, but learning how to be honest with the food and exercise that I do in my life has allowed me to look forward to a much healthier life, with a higher quality of life.
Patrick Kennedy recently launched The Kennedy Forum to coincide with the 50th anniversary of President Kennedy's signing of the Community Mental Health Act, the landmark legislation that signaled a sea change in the way people living with mental illness receive treatment. We applaud the Kennedy legacy, our friend Patrick, and the 50 years of the Community Mental Health Act. It was born of an immense vision; however we, like Patrick, think that the implementation of the Act is incomplete.
The Community Mental Health Act was meant to develop and fund programs so that people with the most serious mental illnesses – schizophrenia, bipolar disorder, major depression - could live successfully in the community. Somehow this effort is failing the group that was intended to be its priority, and prisons have become the de facto mental hospitals of the new century.
The reasons for this failure are complex. I do think that people involved with community mental health bear some responsibility. It is evident that we have not developed a network of places of support sufficient to help the group who needs us the most. There is a disconnect between the needs of the neediest and the funding and services available.
State governments clearly bear some significant responsibility for the problem since they reaped the funds from the closing of state mental hospitals but did not allocate them to community care. Instead they accelerated their use of Medicaid funding, a medical insurance system that lacks an efficient funding stream for the community support programs that are so vital for this group to live productively and successfully. Ironically, now state governments are caught in an ever-expanding Medicaid mill.
In order to truly fulfill the promise of the Community Mental Health Act, we must develop more places for people with the most serious mental illnesses, and states must step up to pay for the community supports that Medicaid is not designed to provide.
As many Fountain House members know, a hospital stay can be an isolating and scary experience for the patient. Whether a person is sick mentally or physically, the patient often has trouble accessing the hospital resources that would help him or her improve. Also, while a member often enjoys good support while attending Fountain House, a hospitalized member may find that he is somewhat forgotten. The shortcoming of support is particularly dire in cases when the member does not have relatives who can help.
Fountain House members and staff are working together to develop new forms of outreach that offer more support to members who are outside the clubhouse. Activities that fill part of this need are mobile outreach, conference calls, and in-reach visits.
Fountain House mobile outreach aims to extend support by visiting Fountain House members who are in hospitals, nursing homes, or homebound. Members and staff travel to the ailing members and provide relief in the form of general support, advice, food, FH literature, and other benefits to ease their isolation and help them get well. Many times a kind gesture to the suffering member is all that is needed. Mobile outreach teams network with hospital or nursing home staff to help provide for the special needs that are common among FH members. Also, when the health care facility is aware that the patient has an advocate in Fountain House, the facility is much more inclined to treat the FH member better.
Education Unit Leader Susan Lieblich understood the need of reaching out to the sick and, about two years ago, started organizing monthly day trips by van to ailing members. Around this time, I independently started visiting hospitalized members by subway about once or twice a week. My initial efforts ended after only a few months, since planning many visits a month required a lot of time, and I did not have much help. Also, it was difficult to decide whom to visit, since in any given week there were about a dozen sick members. Later, I transferred to the Education Unit to work with Susan on mobile outreach. I augmented Susan’s work by taking groups by subway to visit sick members about twice a month. Former Fellow Sister Agnes and now Education Unit Worker Bevin Reilly have helped plan the visits
Last March we began coordinating conference calls among members and staff at the clubhouse and members who are in nursing homes, homebound, or otherwise can’t get to Fountain House. Norman Feldman, who arranges the calls, said that the conference calls allow members to say hi to people they know and keep in touch.
The idea for these conference calls came from a meeting with the Geriatric Mental Health Alliance of New York (GMHANY). GMHANY made other suggestions, including considering ways of providing support to older members in the community before they become nursing home residents. Programs to help people stay at home rather than go to a nursing home are called Aging in Place programs. Some things that could comprise an Aging in Place program at Fountain House:
Younger members could work as home health aides, doing housekeeping work for older members who are no longer able to. With help from the Employment and Education programs, this could also develop into paid work in the health care field..
The Cook and Carry program that Culinary used to have could be revived as something similar to Meals on Wheels, which provides food to the age.
Members and staff could make repairs to older members’ apartments.
Employment could work with older members, who face age discrimination and other difficulties in finding work.
In-reach visits involve strengthening the bond between members residing in nursing homes and Fountain House by transporting the members to Fountain House for a day visit. Several members have made day visits, and we hope to eventually have an in-reach day every month, with a coffee club where older members can renew acquaintances.
We'd like mobile outreach, regular conference calls,and in-reach visits to become standard parts of outreach at Fountain House, just as other forms of outreach are currently standard.
Jonathan N. Brachman Education Unit, Fountain House
"I am now the most miserable man living. If what I felt were distributed to the whole human family there would not be one happy face on the earth. I must die or be better it appears to me. I awfully forbode I shall not.”
A working community assumes place. Location and space are the necessary prerequisites of an association where face-to-face collaboration among participants is paramount. John Beard [Fountian House Executive Director 1955 - 1981] intuitively understood the imperative of having a place of one’s own for his vision to materialize. Because the conditions he envisioned differed so radically from the culture and practices of the hospital ward with its fixation on illness, he located an empty storeroom in Eloise as a “place” where he and his patients were free to set up a social space that would relate to the healthy interests of his patients and enable him to pursue what amounted to a different role as therapist. Ultimately he knew that the hospital environment was limited. So when the opportunity presented itself to build his own program at Fountain House, he took it.
It is critically important to people suffering from mental illness to have a place for association in society (Carolan et al., 2011; Whitley, Strickler, & Drake, 2011). The notion of place holds an existential quality, such that the associations that occur within that space become rich in meaning and memory. Augé (1995) defined places as “relational, historical, concerned with identity” (p. 77). They are spaces filled with emotion and meaning. Place then represents a welcome harbor for a population whose place in society is filled with stigma and embarrassment. Since deinstitutionalization and the loss of a special place for people suffering from mental illnesses—however ill-conceived and experienced—Fountain House represents one such niche where they can anchor to find meaning and stability and foster relationships with others.
Place can also have a salutary effect upon people. In the words of Relph (1976), “A sense of place can sustain identity, provide connection to a personal and collective past thereby offering an emotional center which is rooted and anchored in meaning and value” (p. 141). In this way, place, with its bonds of emotional and social supports, provides a “pathway for negotiating the complexities of living” (Casey, 1997, p. 448). March et al. (2008), analyzing place and its association with the etiology of severe mental illness, consider place to function as a reservoir of risk or resilience: “As a reservoir, place consists of the natural and built environment, physical structures, and material resources that shape experience within a designated geographic location. The physical and social architecture of place both shapes and reflects relationships among individual inhabitants, social groups and social structures and institutions” (p. 96).
We agree that the social processes found in a place can be both protective and curative for those stricken with mental illness. And we intend to pursue this line of thought in further detail in the epilogue, considering how the place Fountain House as a practice and message of hope can provide clues that assist in the amelioration of the problems faced by people with severe mental illness in an era of deinstitutionalization.
Finally, control over space and time is essential in order to sustain the full effects of the Fountain House approach. We now know, after years of attempts to replicate the experience of Fountain House, that spatial independence is a necessary precondition for the working community model to reach its potential in meeting the recovery goals of its membership. It requires a space uninhibited by the rules and mores of a traditional mental health setting. It requires new roles for members and staff so that they can work together in a sympathetic environment. Specifically, such a place requires an independent board of directors at its core who will work to realize the Fountain House mission of member empowerment over the long term and promises that the effort spent on building the program will not be lost. In their own building with their own name, and with an unlimited future, independent working communities can foster a message of hope and demonstrate a sustainable approach to recovery.
Alan Doyle, Julius Lanoil, and Kenneth Dudek
Augé, M. (1995). Non-places: Introduction to an anthropology of supermodernity (J. Howe, Trans.). London: Verso.
Carolan, M., Onaga, E., Pernice-Duca, F., & Jimenez, T. (2011). A place to be: The role of clubhouses in facilitating social support. Psychiatric Rehabilitation Journal, 35(2), 125–132.
Casey, E. S. (1997). The fate of place: A philosophical history. Berkeley: University of California Press.
Relph, Edward. (1976). Place and placelessness. London: Pion.
Whitley, R., Strickler, D., & Drake, R. E. (2011). Recovery centers for people with severe mental illness: A survey of programs. Community Mental Health Journal, DOI: 10.1007/s10597–011–9427–4.
On Sunday, September 29, 60 Minutes aired a segment entitled “Untreated Mental Illness an Imminent Danger?” reported by Steve Kroft. The connection between mental illness and violence is a complex and fraught issue, not easily covered in 13 ½ minutes of primetime television, but the story did aptly describe failures in the mental health system.
Inadequate mental healthcare is responsible for untold human suffering – not only for the sensational mass shootings that prompted the segment, but for homelessness, incarceration, suicide, and countless lives of wasted potential. States are quick to cut their community mental health budgets, abandoning people who are living with serious mental illness to the Medicaid system – a medical plan that is woefully unable to meet their needs. Rather than the integrated psychiatric, medical, and social support that is proven to lead to better outcomes, many people are left to the revolving door of the justice, corrections, and hospital systems. Society pays the price, in real economic costs and in inestimable human costs.
The problem is easy to formulate, but what about the solution? In the present dialogue, it is easy to lose sight of the fact that there are responses in place to the mental health crisis that are working. Sunday’s segment neglected any mention of this, yet in almost 40 states there exist community mental health centers that help people with serious mental illness live productive, fulfilling lives. These centers often struggle for survival in the face of limited support and funding, but they are successfully addressing the problem. People’s concern and understanding of what is possible should be informed by that.
Everyone who weighs in on this issue agrees that ultimately we must expand mental health support services for people living with schizophrenia. My experience as the president and executive director of Fountain House, a world-renowned community mental health program, has taught me that these support services must have a few key features: Early intervention 50% of psychiatric illnesses manifest by the age of 14 and 75% manifest by the age of 24. Diagnosing and treating these disorders earlier means less time lost to the downward spiral of illness and the slow climb back to recovery.
Location Isolation is one of the single largest problems facing people living with serious mental illness today. Even someone who is in mental health treatment may dutifully take their medications, see their providers for a few hours a month, and have little else to fill their life. Frequently these conditions disrupt people’s lives – causing them to lose jobs, drop out of school, and alienate those around them. Discrimination, misunderstanding, and self-stigma only exacerbate that.
Centers in the community – physical locations where people congregate – can help those living with mental illness reconstruct their social networks and build the support that encourages them to move forward with their lives. Proactive outreach People living with serious mental illness are frequently difficult to engage, and mental health recovery is seldom straight line. Any number of things may deter people from seeking or connecting with available help – anxiety, medication changes, and lethargy, to name a few. A persistent outreach effort by a person or team aimed at building a genuine relationship with the recovering person is crucial.
Since 1948, Fountain House has been confronting the social challenges of mental illness and developing a response that includes these vital features. Fountain House serves New York City from its Hell’s Kitchen location, but the inherent humanity, social inclusivity, personal empowerment, and innovation of this approach has inspired its replication around the world and has earned federal recognition in the US as an evidence-based practice. It is the gold standard for community mental health programs, and it is the model for more than 200 programs in 38 states and another 100 programs internationally that successfully address the social impact of mental illness and support people to build meaningful lives in their communities.
Untreated mental illness is an imminent danger, but as the 60 Minutesreport rightly stated, very little of that danger is due to tragedies like the Navy Yard shooting. It is much easier to avert our eyes from the smaller daily tragedies of mentally ill individuals and their loved ones struggling to make their way in an inhospitable world with little or no help. But that help does exist. As a society, we must decide whether we will prioritize making it available to everyone who needs it.