VISION, VALUES AND VITALITY:
BRINGING INDEPENDENT
LIVING PRINCIPLES TO MENTAL
HEALTH PEER SUPPORT
by
Frederick Moe, Cindy Perkins and Pat Spiller
Principles to Mental Health Peer Support "I find the great thing in this world is not so much where we
stand, New Hampshire has a network of 11 independent, nonprofit peer support centers that are based upon a unique model of services for psychiatric consumers/survivors. This service approach has been cited in a New Zealand Mental Health Commission document as an example of best practices in community mental health care. Granite State Independent Living (GSIL) is proud of its role in supporting the emergence of the peer support network and the empowerment of consumers/ survivors. Here is more of that story. The Challenges Everyone needs support. We don't always need "professional" support, nor do we want the entanglements that go with it. Yet we do want someone to listen to us -- someone we trust, someone who is accessible, someone who "has been there." In fact, what we want is peer support as it has been practiced in centers for independent living. During the late 1980s and through the mid-1990s, some consumers from community mental health agency "drop-in centers" worked together to create self help and peer support groups. They saw a need for independence from traditional agencies and the medical model and sought to organize new ventures. As a result, many of the traditional "drop-in centers" evolved into peer support centers based upon the values of consumer control. (This is a very brief summation of a long and sometimes arduous process.) Most of the groups began the lengthy process of becoming independent nonprofits. They applied for and received operational funding through New Hampshire's Division of Behavioral Health (DBH). While some consumer organizers had little or no personal experience in organizational or program development, they did have a lot of vision and energy. The Solution As part of the funding process, the DBH wanted to provide technical assistance to help these new nonprofits grow and mature. Granite State Independent Living was approached by the Division of Behavioral Health in 1994 to provide technical assistance and community organizing services to existing and emerging peer support centers. They chose GSIL because independent living values (autonomy, creativity, self-direction and individual freedom) closely parallel the values of the mental health consumer/ psychiatric survivor/ ex-patient movements, and GSIL had been active and increasingly well-respected in the disability community for almost twenty years. In the early days of the technical assistance project, staff members were assigned to specific peer support centers based upon geographic location. Staff were actively involved in helping programs through the application process for 501(c)3 IRS designated nonprofit status, building boards, creating by-laws, hiring and training executive directors, reaching out to members and building programs based upon what members wanted. After some initial success, a problem
appeared. Territoriality had arisen. Often staff resented each other's
suggestions and ideas, seeing them as an intrusion or interference with
'their' centers. In work that is dependent on good judgment and
integrating numerous perspectives, the team found that we needed all the
wisdom and skill we had available. Reflecting upon what we learned from
our early experiences, GSIL shifted its method of providing technical
assistance services. Staff members decided to work with all centers as a
whole team, rather than individually by site. Team members sometimes
"take the lead" on specific issues, but all team members are
available for consultation The team is currently comprised of a full-time team leader, two full-time technical assistants and one part-time administrator. Team members: --identify as peers and are strongly committed to self help, recovery and self determination, --have a diversity of educational and work-related backgrounds and experiences, --are enthusiastic about exploring natural opportunities for learning and growth, --have a strong understanding of organizational dynamics. Commitment to Self-Help and Recovery A strong commitment to recovery is the heart and soul of the work. Recovery is a subjective experience for each individual, yet it is a path toward wholeness and wellness for everyone. Recovery means having the knowledge, ability and power to make personal choices. Recovery means that everyone, no matter how symptomatic or challenged, can learn to manage their own lives. Everyone has value as a human being first, he or she is not just a diagnosis or label. Everyone, regardless of disability, has the fundamental right to tools that create hope, health and self-worth. The values, practices and tools of recovery and self-help are the foundation upon which personal and collective empowerment are built. Commitment to Exploring Partnerships & Opportunities for Growth Over the project's five years, the most important element of success has been the building of relationships. Team members are consumers who have experienced symptoms, stigma, and the frustrations of navigating mental health systems firsthand. We approach our work with boards, staff and members as colleagues and peers, creating trust-based working partnerships. We get to know people's individual learning styles. We use role playing and "practice sessions" to help people prepare for special events, meetings or other new or stressful situations. We have used the work of Douglas Stone, Bruce Patten and Sheila Heen (Difficult Conversations) to help people talk about the serious issues they confront in the day-to-day operations of their organizations. By exploring one another's stories, getting good information and learning from each other, everyone can resolve conflicts much less painfully. Leadership development is the focus of all our activities. We work as mentors to help people develop their leadership skills and to use those skills in their organizations and beyond. Here's how we practice leadership development:Facilitating vs. directing. It is a lot easier to tell people what to do than help them discover things for themselves. We've learned to make the effort. It allows people to grow. --Asking questions vs. giving answers. Questions help people think about what they really want and need. Questions help people focus on the options available and choose what works for them. People often already know the answers! --Encouraging inclusion vs. isolation. It is easy to allow people "not" to participate. We actively invite people to join in decision making. We encourage leaders to share power with others in their organization. --Teamwork vs. hierarchy. We encourage staff, boards and members to collaborate with honesty and openness rather than deferring to identified leaders. We work as a relatively nonhierarchical team and teach by example. People always recognize the discrepancy between values taught and values practiced. Working With Boards of Directors In many nonprofits, board members have little or no experience in the governance of organizations. Our role is to help boards do their business. GSIL trains board members on their roles and responsibilities, planning and running effective meetings and parliamentary procedure. GSIL consults on issues like hiring and supervising the executive director, recruiting and training new board members, formulating vision and long-range planning. We frequently help boards through the annual budgeting process. We often attend board meetings to help boards navigate concerns such as personnel policies and procedures. One of the training tools we have developed is a self- contained teaching manual titled Board 101. It includes chapters on almost all topics related to board service. The manual is only 34 pages long and relatively easy to read. Board members can read and reference Board 101 at their own pace or it can be used in formal training. Boards are made up of volunteers who get very little recognition for the hard work that they do. There is rarely enough time to meet, and often boards struggle to get through the agenda. Given these realities, the team has found that training sessions before or after board meetings don't work well. The board already has plenty to do. Recently the team tried a different training approach. We organized a statewide gathering of peer support board members. One guest speaker, GSIL's board president, spoke of the joys and challenges of the work involved in board service. A second speaker from the New Hampshire Attorney General's Office of Charitable Trusts gave helpful legal information for nonprofits. The event allowed people to interact and learn from one another. Through happy experimentation, the team has found a more creative and effective way of providing board training. We are planning several more of these gatherings. Working With Executive Directors In the peer support realm, executive directors are hard working, energetic and learning to meet the challenges of ensuring that the organization's work is accomplished. Directors come to the work with a variety of skills and experiences. Some are relatively new to leadership roles and ask for skill building and mentoring with specific tasks. We have worked with directors on navigating the budget writing process, learning contractual reporting requirements, creating policies and procedures and resolving personnel issues. Some directors have involved GSIL in ongoing or periodic staff training and development, facilitating group training sessions and one-to-one mentoring. Frequent topics include boundaries, roles and ethics, group facilitation, team building and confidentiality. Statewide Directors' Association GSIL helped the peer support centers' executive directors come together as a group to explore mutual concerns. These meetings grew into a strong forum for directors to share information, learn technical and programmatic skills and support one another. The directors have become leaders in the statewide consumer community and in their respective geographic communities. Recently the directors held a two-day retreat to work on long range planning, organizing and visioning. Afterward, one director expressed, "It was a very powerful experience. We are no longer a 'group' of individuals, we are truly an association." The Directors' Association has evolved to the point that they no longer need or want GSIL to facilitate their activities, and we are beginning to move out of that role. This increasing independence encourages hope that other leaders may also become more self-sustaining, turning to each other for support and advice, recruiting and mentoring their newer members. We assist by not allowing ourselves to fall into the trap of "rescuing" or solving their problems, being ever vigilant in keeping our actions concentrated on teaching the skills that will enable them to find their own solutions. A Culture of Peer Support GSIL has designed a series of workshops, forums and meetings to help people work toward organizational change and sustain the values of peer support. When we talk about culture, we mean the many dynamics that create the whole organization. Many mental health consumers have experienced decades of enforced dependency. The attitudes and habits of an oppressed culture cannot help but spill over into newly created consumer-run organizations. Changing these patterns is a huge challenge for consumer leaders. The work of building positive peer cultures begins with a commitment to recovery. Everyone needs a basic awareness of the philosophy, skills and practice of recovery. These must be modeled and practiced daily in all relationships and activities. The intrinsic value of each member and their contribution to the organization needs to be recognized and nurtured. As people identify destructive and oppressive behavior (i.e. gossip, negative criticism, cliques and exclusion), they learn how to support one another. Once the internal community is strengthened, we work on networking with other organizations and reaching out to the community at large. Some Successes of the Peer Support Network Budgets. Funding for consumer initiatives by the State of New Hampshire has increased steadily over the past five years. The average operating budget is now more than $100,000 per organization. This has allowed peer support centers to hire consumer staff and train them (and members) in the practice of peer support. Peer-Run Respite. One center offers a peer-run crisis respite program that is available 24 hours per day, seven days per week. Consumers may choose to spend some time at the center when in crisis as an option to voluntary or involuntary hospitalization. The program is open to any consumer statewide who has gone through a reflective and educational intake process. This crisis respite center has been recognized nationally as an innovative peer support alternative to psychiatric hospitalization. Owned Property. Several peer support centers have recently purchased buildings. This has been a wonderful experience of progress for the centers and signals a deepening period of stability. The programs no longer have to worry about the transient and uncertain nature of renting and can begin using their space more creatively. Owning property fosters a sense of "growing roots" and having an established sense of place and identity within their communities. Increased Consumer Empowerment and Wellness. This is the most commonly stated goal of peer support. Unfortunately, the various stakeholders in New Hampshire's mental health community have not been able to agree on a way to measure it. The goal does not translate easily into measurable objectives, since it is a quality of being rather than a quantity of services. The ongoing discussions are fruitful in themselves because they keep the concept of measuring outcomes in people's awareness. Decreased Use of Traditional Services. In one geographically isolated community, a decrease in use of community mental health services has been seen concurrently with the growth of the local peer support center. Other communities have not seen such a change or have not attempted to measure it. Usage of traditional services is related not only to the existence of alternatives but also to the economy, growth of the community at large, funding streams and benefits, the policies of the traditional mental health center, etc. It would be very hard to determine what effect peer support might be having. A Story of Transition In the last two years three new consumer-run peer support centers have achieved nonprofit status. One grew out of a social club model that had been operated by a community mental health center for nearly 25 years. Its physical facility was quite nice and had space for cooking, crafts, community dinners, watching movies and playing pool. Vans were available to take members on community trips for shopping and recreational activities. The club's overall design, however, was one that created dependence on mental health center staff. No programs or activities were in evidence that would contribute to a member exchanging his or her patient or client role for one of empowered, self-determined consumer. GSIL staff began helping the club community organize in February 1999 by facilitating discussions at community forums. By summer, a small group of interested club members began to work through the nuts and bolts of nonprofit incorporation. When given the opportunity, members showed strengths and talents that had not been previously apparent. They demonstrated commitment to the process of becoming independent and persevered through numerous obstacles. By autumn, incorporators had formed a board of directors and funding negotiations were beginning with the Division of Behavioral Health. While there are miles to go for this emerging organization, they are now housed in a downtown store front location, have hired a director and staff and are offering programs and services designed to empower members. Replication Nurturing the growth of peer support centers in other states will depend upon a number of variables. We don't expect the New Hampshire concept to be exactly reproduced in other areas. Efforts like this need to evolve from the grassroots level to address real needs of mental health consumers in your communities. However, an outline of the essential elements might include the following: I. Make at least one person in your IL organization an "expert" in recovery from mental illness, the consumer/survivor/ex-patient movement, and the existing mental health system in your region. II. Seek out opportunities to nurture consumer advocates and build coalitions between mental health consumers and the independent living movement. III. Make connections with local and statewide consumer organizers and/or existing consumer-run programs. IV. Connect the IL movement with the mental health consumer/survivor/ex-patient movement. Convene community meetings and forums, and explore how the two movements can work collaboratively. V. Offer consumers information, insight, and techniques from the IL movement's experience with practicing peer support. VI. Offer consumers the IL movement's expertise in organizational management, systems change and advocacy. VII. Research funding opportunities through state government or local agencies. Sometimes states send out requests for proposals for technical assistance or related projects. Make and nurture connections with people at your state's Division of Mental or Behavioral Health. VIII. Actively involve consumers at every level of program planning, design and implementation. IX. Develop clearly articulated and specific goals, objectives and desired outcomes for mutual projects so that success can be measured and expanded upon. X. Explore, explore, explore. Find innovative ways to reach out to the mental health consumer community. We wanted a dynamic ending to this article. To borrow from the closing paragraphs of Daniel Quinn's 1999 book Beyond Civilization, we realized there can't be one. The work of building a different world is ongoing. The "ending" we hope for, and work toward, is for all of us in the independent living and consumer/survivor movements to create. About the Author Frederick Moe, BS, has over 20 years experience in the mental health and human services fields. When not working to change the world, he is a creative writer and co-owns and manages a used/antiquarian bookshop with his life partner, Nansea. Cindy Perkins, MSW and mother, sees this work as a natural continuation of three historical streams: Jane Addams' "social work for social change" model, the independent living movement's faith in the competence of the individual, and her father's 1960's activism. She has worked in community organizing for two years, and plans to keep at it for a few decades. Patricia Spiller, Program Director at GSIL, has been in the independent living field since the early 1980s when she assumed the position of executive director of Stavros, Inc. a CIL in Massachusetts. She has conducted training in evaluation and management information systems in more than 80 CILs and has worked as a consultant with Statewide Independent Living Councils in Maine, New Hampshire, Rhode Island, Connecticut, Massachusetts and Florida. She holds a master's degree from the Heller School for Advanced Studies in Social Welfare at Brandeis University and has studied at McGill University in Montreal with North American leaders in school and community integration. Contact Information Granite State Independent Living References Perkins, Cindy. Board 101. Unpublished manuscript. Granite State Independent Living, 1999. (Contact GSIL for more information). Quinn, Daniel. Beyond Civilization: Humanity's Next Great Adventure. Harmony Books, 1999. Stone, Douglas, Bruce Patton and Sheila
Heen. Difficult Conversations: How to Discuss What Matters Most.
Viking Press, 1999. ©2000 ILRU Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred. ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and the National Council on Independent Living (NCIL), with funding from the Rehabilitation Services Administration. For additional copies of this document, contact ILRU at
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