Funding Request for The Icarus Model of Peer-Based Mental Health Support

I. Summary

The Icarus Project is requesting a grant of $90,000 over 2 years to develop and disseminate nationwide the Icarus model of peer-based mental health support groups for youth and other underserved populations.

II. Organizational Overview and Objectives

The Icarus Project is a non-profit project, under the fiscal sponsorship of FJC, created by and for people living with mental illness, and bipolar disorder in particular. The project currently has 3 principle focuses of activity: a community-based website, www.theicarusproject.net; publications, including the book Navigating the Space Between Brilliance and Madness, A Reader and Roadmap of Bipolar Worlds; and outreach programs, including workshops, discussions, and support groups.

The Icarus Project was founded in October 2002 by Sascha Altman DuBrul and Ashley McNamara. The first step was the creation of our community-based website, theicarusproject.net. According to our mission statement,

The Icarus Project is a place for people struggling with manic-depression outside the mainstream to connect and build an alternative support network. We hope to learn from each others' mistakes and victories, stories and art, and create a new culture and language that resonates with our actual experiences of this "disorder" rather than trying to fit our lives into the reductionist framework offered by the current mental health establishment. We would like this site to become a place that helps people like us feel less alienated, and allows us "” both as individuals and as a community "” to tap into the true potential that lies between brilliance and madness.

For over 2 years these efforts have been bridging the isolation so common to the experience of mental illness. In the last 9 months the usage of our site has skyrocketed from 300 unregistered users and 150 registered members to 2200 unregistered users and over 1000 registered members. Currently the site averages 2-300 visitors daily. In addition to featuring information about treatment, diagnosis, and resources related to bipolar disorder, the site also features an intensely active set of community-based forums where registered members post extensively about their experiences. The site is currently averaging 150 daily posts ranging in topic from keeping a job and managing medication to the spiritual aspects of mania and the human rights of mental patients.

The dialogues that have emerged on our website encompass a range of bipolar experience that is not represented in any other web communities or publications. In January 2004 we made our first effort to fill the gap in literature about bipolar by assembling the collective visions of our members into a self-published volume called Navigating the Space Between Brilliance and Madness; A Reader and Roadmap of Bipolar Worlds. This 76-page pilot edition of Navigating the Space, which we considered a test run, sold out two printings of 1000 books in less than seven months. The feedback we have received has made it clear that this unique document, full of art and multi-textured interpretations of life with mental illness, has resonated with thousands of readers in a way that other available publications have not.

Currently our workshops and the pilot edition of Navigating the Space have done an effective job of raising awareness about The Icarus Project and bringing isolated individuals into virtual contact with each other via our website. The alternative support network we envisioned is unfolding daily before our eyes on the computer screen; the next step is to bring this network into real physical spaces in communities across America.

III. Program Objectives

Community support is a vitally important part of the healing process no matter what form of treatment an individual chooses. While there are numerous conventional support structures available for adults, family members, and those who are comfortable with the medical model of mental illness, there are very few peer-based support structures created by and for young and creative populations. Most of the support structures currently available in this country have been established by institutions, mental health professionals, and large bureaucratic organizations like NAMI, the National Alliance for the Mentally Ill. While these groups have indubitably helped thousands of people suffering from mental illness, they have also alienated countless individuals who do not identify with the conventional paradigm of the "mental health consumer." The majority of our members have indicated that they did not consider any of the participants in traditional support groups to be their peers, and subsequently felt even more alone in their struggles to understand the extremes of their experience.

Traditional support organizations frequently speak in terms of "psychiatric disability," "disease," and "eradicating mental illness" (the first objective in NAMI's mission statement). The members of The Icarus Project, by contrast, have consistently expressed that our project "” with its unique conception of mental illness as a potential gift of great vision, creativity, and compassion that must be harnessed and respected, as well as an incredible hardship "” is one of the only places where they can find meaningful support from true peers. The archetype of the mythical Icarus, who uses the gift of wings to fly to places of incredible beauty but crashes after recklessly flying too close to the sun, has proven a much more resonant metaphor for our members' extremes of experience than the paradigm of disease. We have received countless letters of gratitude for opening up an alternative dialogue, such as the following, which arrived this afternoon from a student at Brown University who attended one of our workshops:

Thank you. You have changed my life. I feel less crazy than ever before and I am mad as hell that this kind of forum and support isn't more available. We should never have to experience this condition alone. Without a community we can't help but accept that we are the diseased and the other. This logic permeates our consciousness, twisting our internal dialogs such that we second guess our experiences and thoughts to the degree that we simply concede to being crazy. I am not alone and I am not crazy. Thank you.

In response to this need, we intend to create a compelling, easily replicated model of community outreach and peer-based support around mental illness that people can implement locally within their schools and communities to initiate dialogue or continue the discussions we have already begun.

IV. Methodology

In order to seed this dialogue, we are planning to:

• publish materials that can be easily distributed to train outreach workers and start a new model of peer-based support groups grounded in the Icarus vision
• launch a pilot college support program in New York City in 2005, and expand the program nationwide in 2006
• create a branch of The Icarus Project organization devoted to coordinating the emerging support network, which will:
• conduct bi-annual speaking tours of different regions in America aimed at convening meetings in different locales to 1. open up discussion. 2. disseminate the Icarus model, with the intent of encouraging the formation of support groups. 3. identify potential leaders who can take responsibility to keep these groups going.
• Provide centralized support by distributing support materials, answering questions, guiding new leaders, and helping groups network with each other.
• convene a training conference for new outreach workers/group leaders in 2006

Publications and Media

Over the next year we are planning to develop Navigating the Space into a comprehensive resource on creating community around the experience of mental illness. The complete edition of Navigating the Space will include :

• Discussion guides for each section of the book. These guides, which will contain thought-provoking discussion questions, along with solo and group exercises, will transform the personal stories, treatment information, and social perspectives that the pilot edition currently features into tools for dialogue.
• A manual for starting and maintaining support groups. This document will draw from the experience of Icarus support groups currently meeting in New York City, Minneapolis, Madison, and Seattle, and be informed by a diversity of models ranging from the Theatre of the Oppressed Re-evaluation counseling and Dialectical Behavioral Therapy. In addition to suggesting strategies for conducting traditional roundtable discussions, it will also expand the range of possibilities to include activities like making art, working on community projects, having potlucks, starting reading groups, and putting together local events like art shows and open mics.
• A training curriculum for readers interested in doing outreach in their communities. This document will include a discussion of strategies for speaking in classrooms, planning and organizing events, facilitating workshops, engaging youth, and encouraging the formation of peer-based support groups.
• A collection of publicity materials, including flyers, press releases, pamphlets, postcards, graphics, and text that people can use to advertise events and groups in their communities.
• These support materials will be available in Navigating the Space and as a packet of documents that can be downloaded from our website or ordered as individual publications and easily replicated, purchased, and distributed to interested individuals all over the country.

These materials will be complemented by the creation of a multimedia presentation on the experiences of mania, depression, and an exploration of how it feels to be labeled crazy in a crazy world. This presentation, to be developed in FinalCutPro, will follow in the tradition of our book by incorporating art and text to provide a creative vision that can be used to generate discussion in a wide variety of educational and informal settings. The presentation will be available on DVD and VHS for purchase and distribution.

New York Area College Support Program

In order to begin disseminating our model and exploring the challenges of organizing college-based support groups, we are planning to launch a regional pilot program in New York in April 2005. This process will include

• Developing relationships with students and administration in area schools, including City College of New York, Hunter College, New York University, Parson's School of Design, Sarah Lawrence College, Cooper Union, as well as a number of schools in the greater SUNY system.
• Developing an easily replicated model of college-based support groups that can become integrated through student activities offices and gain administrative support and oversight.
• Seeking technical guidance from Fountain House to gain administrative contacts in colleges and universities and develop beneficial relationships with these offices.
• Working with Fountain House to explore potential links between emerging college support groups and the clubhouse network.
• Conducting regular workshops in classes and community spaces at area schools.

Coordinating The Icarus Project Support Network

In order to facilitate distribution of our support materials and provide a way for emerging support groups to get information and connect with each other, we will

• Develop a new section of the Icarus Project website devoted to local community support. This will entail designing a user interface, creating a community calendar, establishing a regional index of support groups, providing information on ordering support materials, and offering a downloadable collection of flyers and other pdfs that can be used when starting groups or leading workshops.
• Establish a distribution center at Fountain House where members of Fountain House's young adults program will assist with mailing materials and answering basic questions related to the Icarus Project's community support program.
• Develop a comprehensive volunteer base of Icarus Project members who are willing to take on responsibility and oversee aspects of the support network.
• In the second year of this project, train and hire a part-time outreach coordinator to oversee the community support program.
• Arrange a training conference for 20 new outreach workers and support group leaders in the summer of 2006.

Disseminating the Icarus model of peer-based support groups

Up to this point our most effective forms of outreach have been the website itself and our workshop tours. Since publishing the pilot edition of Navigating the Space and beginning to conduct workshops, the membership of The Icarus Project has increased 700%. Our outreach efforts have resulted in the formation of four Icarus Project support groups in New York City, Minneapolis, Madison, and Seattle. As Navigating the Space has circulated throughout the country via independent bookstores, alternative distributors, the Icarus Project website, and our workshops, hundreds of members have been brought into the project. These forms of marketing and dissemination will continue.

As we look to the next few years, we envision continued speaking events, including periodic invitations to address classes and communities, as well as biannual college and community tours, as an important part of disseminating the Icarus model. The training of additional outreach workers to conduct workshops themselves will become an integral part of initiating new support groups, and The Icarus model should begin propagating itself. In addition to these forms of interpersonal outreach, we intend to develop a marketing plan for The Icarus Project in conjunction with Passion Marketing, a well respected public relations firm in Los Angeles, CA that specifically promotes non-profit projects. Based on their interest in our work, Passion Marketing has offered to initiate a pro-bono relationship with The Icarus Project that will include forging alliances with nationally prominent organizations and individuals in the field of mental health, getting word about our project into the press, and advertising on the web and in select publications. Finally, we expect that our partnership with Fountain House will make many more people aware of The Icarus Model of community support.

V. Timetable

Year 1: Developing new media, launching regional programs, and recruiting leaders.

We are planning to spend the first half of 2005 writing support materials and launching our New York pilot program. The Icarus Project will be based in Oakland, California this winter, where we will commence work on the expanded edition of our book, Navigating the Space Between Brilliance and Madness, and assemble the first edition of our support manual and training curriculum. The support materials will be printed in March, 2005. In April, co-director Sascha DuBrul is returning to New York City to initiate the pilot phase of our college outreach program. Over the spring and summer he will be working with Fountain House to create connections with college students and develop support groups on campuses in the New York area. Co-director Ashley McNamara will remain in California where she will continue working on the expanded edition of Navigating the Space Between Brilliance and Madness. She will also spend this time developing The Icarus Project's multi-media presentation and working with webmaster Ryan Johnson to complete the support network section of our website.

The second half of 2005 will be spent distributing the expanded edition of our book and disseminating the Icarus model of community support. By September 2005, when we will embark on our next round of college tours, we plan to be armed with 5000 copies of our book, an array of support materials, and two semesters' experience starting support groups at college campuses and in our local communities. We will focus on recruiting potential outreach workers and support group leaders in the communities and campuses we visit throughout the fall.

Year 2: Coordinating the support network, convening the first Icarus Project conference, and expanding nationwide.

The first half of 2006 will be spent coordinating the emerging support networks and planning the Icarus Project training conference for summer 2006. If necessary, we will print revised editions of our manuals and training materials. We will train and hire an outreach coordinator who can oversee the distribution of our support materials and serve as a point person for emerging support networks. We will continue to invest energy in the New York area college program and to accept regular speaking engagements. In addition, we will begin planning the summer conference in consultation with a project planner.

The second half of 2006 will be devoted to holding the conference, continuing outreach and providing support for the emerging national network of Icarus Project support groups. This phase of the project will begin with our first annual Icarus Project training conference. The rest of the year will be spent assisting newly trained group leaders in establishing local groups and conducting outreach in their communities. We will continue providing start-up packets and other materials to interested individuals and institutions, as well as working to expand the distribution of our book. Our webmaster will maintain and expand the support network section of our website. We will plan and execute our own fall workshop tours, and visit new Icarus Project groups across America.

VI. Evaluation

We feel that within 2 years The Icarus Project model of peer-based support and community outreach should be spreading to communities and campuses across America. We plan to measure our success by meeting goals in the following areas:

Publications

• Publish and distribute a minimum of 5000 copies of the comprehensive community edition of Navigating the Space Between Brilliance and Madness.
• Print and distribute a minimum of 5000 copies of the items in our support packet, including support group manual, training curriculum, multimedia presentation, and publicity materials.

The Icarus Project Support Network

• Seed the formation of and provide ongoing guidance for at least 15-20 Icarus model peer-based support groups in different regions of America.
• Complete two bi-annual speaking tours.
• Establish an outreach coordination program, headed by an Outreach Coordinator, who will work in conjunction with Fountain House to disseminate materials and answer questions.
• Convene a training conference of 15-20 potential outreach workers/group leaders.

VII. Organizational Capacity

The Icarus Project was founded in September 2002 as the dream and volunteer effort of two committed individuals, Sascha Altman DuBrul and Ashley Y. McNamara, who remain co-directors of the project. The Icarus Project is under the fiscal sponsorship of FJC, the Foundation for Jewish Charities, a non-profit organization which operates a Grant Assistance Program to provide financial oversight to budding non-profit projects. Since April of 2003, when FJC accepted our application, this larger non-profit organization has received and distributed grant and donations on our behalf and provided essential technical assistance.

Over the past two years we have worked in consultation with several web designers to develop and maintain our website, and have briefly employed event organizers to help plan and execute our speaking tours. We take advantage of a vast network of personal contacts in bookstores, independent distributors, colleges, and various alternative communities across America whose volunteer efforts have organized countless events and made national distribution of our book possible. As the membership of our website surpasses 1000 people, we are receiving increasing numbers of requests from members to become involved with the project on a volunteer basis, and several are already assuming responsibility: two members in San Francisco and Sweden are currently administering the creative writing section of the website together; a member in Brooklyn is curating the first annual Icarus Project Art Show this December; members in Madison, Minneapolis, and Seattle have spearheaded the formation of local Icarus Model groups. In the coming years we anticipate relying heavily on our dedicated member base to assume responsibility for aspects of the organization. In addition, the Fountain House Young Adults program is interested in providing clerical help to The Icarus Project by distributing materials and answering requests for information.

The Icarus Project has been able to grow as a result of the financial support of a number of foundations and private individuals who were willing to invest in our vision. Additional revenue has been generated in the last year by speaker's fees and book sales, and we expect these sources of income to grow quickly over the next few years. This project has kindled a spark of excitement in individuals touched by bipolar disorder in a variety of worlds, including mental health and the philanthropic community, who have given us great encouragement to expand this further. As we look to the next few years we expect to seek renewal funding from the Dobkin Family Foundation, The Rodgers Family Foundation, and the Altschul Foundation, as well as to initiate new partnerships with foundations like the Ittleson Foundation and the Nick Traina Foundation. In addition, our emerging partnership with Fountain House, one of the most well respected peer-based support organizations in America, should open many doors as we bring the Icarus Project to the next level and begin disseminating the Icarus Model of Peer-Based Mental Health Support in communities across America.