With support from the Center for Mental Health Services (CMHS), the Bazelon Center for Mental Health Law hosted the second national advocacy forum for older adults with mental health disorders. It was held in Washington, D.C. on May 12 - 14, 2000. This report describes the advocacy forum and discusses the outcome of the meeting in relation to formation of a national older persons advocacy group. This group is intended to promote the welfare of older adults with mental disorders by increasing awareness of their unmet mental health needs and moving forward to overcome the inequities that have prevented substantial numbers of them from receiving the care that can improve the quality of their lives in their later years

Project Goals, Staffing and Design

The purpose of this second older adult advocacy forum was to complete the work begun at the first meeting, held in May 1998, also under the sponsorship of the Bazelon Center with funding from CMHS. The project was staffed from the outset by Robert Bernstein, executive director of the Bazelon Center, joined at the first meeting by Bazelon Center staff attorney Linda Priebe and Pamela Cohen, an independent mental health lawyer formerly on the Bazelon Center staff, and at the second forum, by Margeau Gilbert, the Bazelon Center's development director, and Ingrid Komar, the Bazelon Center's assistant director of development. Logistical support was provided by Marilyn Egerton and Karen Smith, of the Bazelon Center staff. Pamela Cohen again served as consultant for the May, 2000 meeting.

This forum was designed to give participants from the first forum an opportunity to follow though on their plans to establish a viable national consumer-based advocacy group focused on the needs of older persons with mental disorders and their families. It was also intended to provide an opportunity for participants to build consensus around decisions to be taken on the function and nature of the organization and to hear presentations from representatives of national consumer-based advocacy groups that have been successful in achieving their purposes.

The planning and implementation of the first forum was substantially carried out by the Bazelon Center with the assistance of a steering committee comprised of representatives of organizations concerned with aging and some consumers. Because the intent of the overall project is to launch a self-sustaining advocacy movement by older adults with mental disabilities themselves, the Bazelon Center assumed more of a support role for this second forum, for example, assisting with conference calls and handling meeting logistics. The agenda was developed by a steering committee made up of participants from the first meeting with chaired by John Piacitelli, of Washington State and with support and technical assistance from Tom Volkert, of the Southeastern Pennsylvania Mental Health Association. The members of this committee are identified in Appendix-A. Their planning was accomplished by phone and in one face-to-face two-day meeting in Philadelphia on February 5, 2000. It also involved a consultation visit on February 17, 2000, by two members of the planning committee (John Piacitelli and Trudy Persky) with Barbara Huff, director of the Federation of Families for Children's Mental Health—a similarly consumer-driven organization formed with the same goals on behalf of a different population—and with Carol Cober, of AARP. Every effort was made to ensure that the process was consumer-directed throughout.

Participants

Participants of this meeting included 25 individuals who had attended the first meeting and two consumers invited from the NCTAC project because of their participation in an ongoing federally funded project to address the training of primary care physicians in the identification and appropriate treatment and/or referral of older persons with symptoms of mental illness. Their participation provided an opportunity to increase minority consumer participation and to benefit from the experience of older adults in New York and Pennsylvania. Attendance required only submission of a simple affirmation of desire to attend the meeting. Four of the older adult consumers were accompanied and/or represented by family members or other caregivers.

Also in attendance were 14 representatives of various organizations dealing with mental health and aging issues.

Agenda

The forum took place at the Renaissance Hotel in Washington, D.C., from Friday, May 12, through Sunday morning, May 14, 2000. Thanks to CMHS' coverage of lodging for participants on Thursday night, the meeting began on Friday morning and the participants had a full two and a half days to accomplish their work.

The printed agenda, with the names of presenters or facilitators for each session, is contained in Appendix-C. The sessions on Friday and early Saturday morning were designed to remind the participants of the forum's purposes and offer background information about fundraising and organizational development. Summaries of these presentations and of the many comments by participants appear in the minutes, Appendix G.

The actual work of organizing began on Saturday afternoon, continuing during that evening and on Sunday morning. A number of issues relative to the purpose of the organization, its vision and mission, its funding and the principles and challenges of membership were raised by speakers and participants alike, resulting in serious discussion and productive deliberation. The participants divided into four groups, each headed by two consumers, to address issues and make recommendations for later action by the assembled consumers and caregivers. These groups were: 1) the Membership Committee, 2) the Vision and Mission Statement and Bylaws Committee, 3) the Fundraising Strategies Committee and 4) the Development Committee. Other consumer/caregiver participants sat with each group, observing the proceedings and responding to questions or providing advice at the request of the group.

Following the group meetings, a general assembly was held for presentation of recommendations by each work group and for discussion and voting by the participants as a whole. The committees' recommendations were as follows (see the minutes for highlights of the discussion):

Membership Committee
The committee recommended the following membership criteria for the new organization:

• general membership: open
• board of directors: controlled by consumers, with primary consumers having at least 2/3 of a vote and secondary consumers, 1/3
• definition of primary consumer: an older person (60+) who has been diagnosed with a mental disorder
• definition of a secondary consumer: a family member of any age who may be non-diagnosed but who has taken care of an older person with a mental disorder
• a technical professional advisory committee to provide needed consultation; its chair to be a non-voting member of the executive committee and the board of directors

Vision and Mission Statement and Bylaws Committee
In preparation for the conference, the steering committee had sent a survey to all participants about a Vision and Mission Statement and bylaws (Appendix-D). The rate of completed survey questionnaires returned was 100%. The compiled results (Appendix-E) ensured input from the entire group and helped to expedite decision-making on this issue.

In its discussion (see minutes), the committee proposed several changes to the draft vision statement circulated in the survey, and proposed the following vision statement, incorporating those changes:

All older persons—regardless of race, gender, creed, color, ethnic origin, sexual orientation, language, disability or age—who have or are at risk of developing mental disorders should have available to them and their family caregivers specialized services which are readily accessible and provided in the least restrictive environment and which maintain their individual independent functioning and ensure self-determination, choice and right to refuse treatment.

The group also proposed changes to the draft mission statement, which were incorporated in the recommended mission statement presented to the full group:

To bring together concerned persons to develop accessible, affordable and age appropriate mental health services.

Fundraising Strategies Committee
The committee began with four assumptions establishing the premise that the organization will exist and will actively seek funding. It then walked deliberately through important principles of fundraising and explored a number of concrete ideas and specific suggestions, spelled out in the minutes. The result was a list of actions recommended by the committee:

1. Outreach to corporate, government, religious and fraternal groups
2. Apply for a Community Action Grant
3. Take a stab at Federal funding as seed money, $150,000 per year.
4. Contact GE and find out about the corporate giving model used.
5. Encourage members to pick one corporate structure and use a model format and then approach various corporate sources (consider new companies resulting from mergers).
6. Look for an "angel" who wants to set up an endowment.
7. Approach people for bequests.
8. Coordinate corporate outreach through a central administrative structure.
9. Use this same outreach for religious groups.
10. Consider special mailings and soliciting funds on a particular holiday: July 4 or Father's Day (e.g., the Kansas NAMI Valentines Day outreach). Claim a day for our own outreach.
11. Network fundraising in coalition with others, even though we are independent.
12. Obtain training on fundraising and grant-writing activities.
13. TAKE ACTION NOW.

Development Committee
The committee on development of the organization offered a lengthy list of recommendations of actions to be taken immediately:

1. Support coalition-building
   • Regional (based on current representation at meeting)
   • National Associations: NAMI, AARP, NMHA, NCOA
   • Governmental: State Units on Aging, Area Agencies on Aging, State, County and Local Offices of Mental Health, Substance Abuse, Developmental Disabilities
   • Churches and religious and fraternal organizations
   • Interested individuals of all ages
2. Activities the national organization can address in immediate future.
   • Public education
     • Develop state and local development packet
     • Publish newsletter and brochure for this group
     • Use public TV, radio and newspapers to inform public about organization
     • Seek funding for professional training programs
     • Use public service announcements
     • Campaign to increase understanding of mental health and aging
     • Develop a website
   • Take steps to hire staff soon.
   • Establish a speakers bureau
   • Develop plan for recruiting members
   • Seek funding for training program, national office and staff, 8---number
   • Develop a plan for advocacy for
     • Increase funding minimum to 10% for mental health services for older adults
     • Transportation $
     • Improve health, mental health and social service systems
     • Programs responsive to older adults
     • Mobile services/outreach to personal residences and community places, restaurants/malls/boarding homes
     • Specialized services
     • Alcohol and drug abuse programs for older adults
     • Parity—CHMOs
     • Coordination and communication between agencies
     • Streamline admissions/system

Actions Taken by the Full Group

The committees' recommendations and the proposed bylaws were presented to and, after much deliberation, unanimously accepted by all of the participants, meeting in plenary sessions on Saturday and Sunday morning (see Appendix-F). The group also heard comments and suggestions from Willard Mays, representing the National Coalition on Mental Health and Aging, who invited the new organization to join the coalition, and Todd Ringlestein, president of the Older Adult Division of the National Association of State Mental Health Program Directors, who extended an invitation for members to attend the division's annual meeting.

Following discussion of the issue of affiliation raised by Mr. Mays, the decision was made to form an inclusive, independent advocacy organization dedicated to improvement in the delivery of mental health services to older persons with mental disorders. In contrast to other mental health consumer or family advocacy groups, this organization reflects the belief that the involvement of consumers together with family caregivers and proven advocates from both the aging and mental health service sectors is necessary to maintain continuity of membership and to increase recognition of the unmet mental health needs of older adults.

The deliberations on Sunday concluded with the nomination and unanimous approval of a slate of officers reflecting the representation of consumers and advocates, as follows:

President:	John Piacitelli
First Vice President:	Hikmah Gardiner
Second Vice President:	Barbara Blitz
Correspondence Secretary:	Barbara Brooks
Recording Secretary:	Janet Stiles
Treasurer:	Pat Goodrich
Assistant Treasurer:	Louise Bouta
Sylvia Caras agreed be the liaison to the adult consumer advocacy organizations

Finally, the participants chose a name for the new organization: American Older Adult Mental Health Consumer Association (AOAMHCA).

Conclusion

The forum was judged a success because it resulted in accomplishment of its stated purpose: The creation of an inclusive national mental health consumer organization for older adults with the potential of providing consumer input for local, state and national programs for older mental health recipients. The forum also identified potential sources of funding to support the new entity's efforts and made specific plans for reaching out and recruiting new members and for collaborating with existing organizations and coalitions to ensure that problems of older adults with mental disorders are addressed within their activities.

For more information, about AOAMHCA, contact John Piacitelli.

List of Appendices

Appendix-A: Planning Committee Members

Appendix-B: Participant List

Appendix-C: Forum Agenda

Appendix-D: Vision, Mission Statement and Bylaws Survey

Appendix-E: Survey Results

Appendix-F: Bylaws and Resolutions

Appendix-G: Compiled Minutes of Forum

For a copy of appendices A-E, contact John Piacitelli, jdpia@flashcom.net.