Forum on Self-Advocacy Among Older Adults
with Mental Health Needs

(Requisition Nos.- 97M02723601D; 98M00143801D)
Final Report
August 17, 1998

With support from the Center for Mental Health Services, on May 29-31, 1998 the Judge David L. Bazelon Center for Mental Health Law hosted the first national advocacy forum for older adults with mental health needs. This report describes the advocacy forum and discusses its recommendations and possible next steps to enhance the quality of life for older adult mental health care consumers.

I. Project Goals, Staffing and Design

• Identifying and describing exemplary advocacy strategies for older adult consumers of mental health services;
• Identifying gaps in existing advocacy systems for this population and those factors which have contributed to or hindered the development of grassroots advocacy;

• Exploring new advocacy approaches to meet the needs of older mental health care consumers; and
• Recommending short-term "next steps" and long-range strategies for addressing advocacy needs.

The project was staffed by Robert Bernstein, Executive Director of the Bazelon Center, and Linda Priebe, a Bazelon Center Senior Staff Attorney. Pamela Cohen, an independent mental health lawyer formerly employed by the Bazelon Center and by the American Association of Retired Person (AARP), served as a consultant. The project was conducted in collaboration with Carol Cober of AARP, as well as with a steering committee of experts in the field of mental health advocacy as it relates to older adults. The members of the steering committee are identified in Appendix A.

The forum was designed to give older adult mental health care consumers the opportunity to draw their own conclusions about advocacy needs and strategies at the national level. Accordingly, the project staff did not attempt to articulate at the outset exactly what the participants should accomplish, or what the aftermath of the forum might be. However, they hoped that the network of individuals created at the forum might lay the framework for visible national advocacy responsive to the needs of older adults with mental illness, and directed and articulated by the consumers themselves. This would be the first national consumer-centered effort dedicated to advocating exclusively on behalf of this growing and under-represented population.

II. Participants

Nominations for participation in the forum were solicited from seniors' groups and mental health advocacy organizations around the country. Individuals aged 60 years and over, who are or have been consumers of mental health services, were eligible to apply. A family member or caregiver could be designated as a representative for those individuals who were unable to speak for themselves. Potential participants were asked to submit an application in which they described the experience that they would bring to the forum and their thoughts on the advocacy needs of older adults with mental illnesses. Copies of the application for participation and accompanying cover letter are attached as Appendix B.

The Bazelon Center received approximately 90 applications for participation in the forum. The Bazelon Center and the Washington, D.C. Consumers League, an advocacy group of mental health care consumers, reviewed the applications and selected 31 participants from 27 states. Five of these individuals were accompanied and/ or represented by family members or other caregivers. The Consumers League and the Bazelon Center strove for the maximum possible ethnic, cultural and geographic diversity in selecting participants for the forum. The participants list (which also includes the names of speakers and other facilitators) is attached as Appendix C.

III. Agenda

The forum took place at the National 4H Center in Chevy Chase, Maryland from Friday evening, May 29, through Sunday morning, May 31, 1998. The written agenda, with the names of the facilitators for each session, is attached as Appendix D. (The one-woman play and farewell address that appear on the agenda were canceled due to illnesses.)

Friday evening was devoted to registration, a brief welcome, and a barbecue. The barbecue gave the participants an opportunity to meet and speak with their counterparts from across the country. In welcoming the participants, Robert Bernstein of the Bazelon Center emphasized that the discussions, recommendations, and results of the forum "belonged to" the consumers in attendance. The role of Dr. Bernstein and the other non-consumers present would be to provide information, help facilitate discussion, attend to logistics, and otherwise support the work of the participants.

Saturday was divided into three sessions. In the first session, participants discussed their concerns about the current state of mental health services for older adults. In the second session, six participants from different parts of the country shared advocacy strategies that have been effective for them in advocating for greater access to quality mental health services for older adults. In the final session, representatives of 9 national advocacy organizations, as identified in Appendix E, described how their groups could serve as resources for a consumer-center advocacy effort that might emerge from the forum. Saturday's activities culminated with a bus tour of Washington D.C. and an informal dinner.

Sunday morning was devoted to a discussion among and lead by consumers of "next steps." Two sessions, facilitated by one of the participants, were entitled "Where Do We Go From Here?" and "How Shall We Get There?" The morning was followed by a working lunch and a brief wrap-up session.

IV. Feedback

The feedback that the Bazelon Center received from the forum was overwhelmingly positive. At the wrap-up session on Sunday, many participants made comments that indicated their positive reactions to the weekend's activities. These comments included the following:

• "I don't know what I'm going to do when I get home, but I'm going to do something."
• "A national organization is being formed today."
• "I'm going home with so many different ideas, feelings and energies in my heart and mind."
• "I'm a better person for having come here."
• "I've learned how to smile since I've been here."

The Bazelon Center also received positive written feedback in the form of evaluations and follow-up letters, copies of which are attached as Appendix F. A few criticisms were limited to issues involving travel arrangements (a storm disrupted air travel home from the conference), the meeting facility, time constraints, and the inherent difficulty of keeping the discussions focused on specific issues. Many more comments reflected the commitment and optimism which the participants derived from the forum. These comments included the following:

• "The energy created by the weaving of minds into a tapestry that is taking shape will become a banner."
• "The energy and positive movement toward some long range coalition made me believe that we will be able to develop a united voice for older adults who have mental disorders."
• "To see my mother empowered in an interpersonal and systemic way was truly a gift to me. So, I thank you for giving her the opportunity to learn, to speak and to risk seeking the best possible care for people."

V. Results and Recommendations

By all accounts, the forum was successful in linking consumer-advocates who are committed to improving mental health services for older adults. Therefore, the results of the forum can be seen on two levels: in the participants' exchange of ideas about advocacy needs and strategies, and in their commitment to use the forum as the foundation for a new national advocacy group.

A. Advocacy Needs and Strategies

The minutes of the forum, attached as Appendix G, describe in detail the information and ideas that the participants shared, as well as the recommendations that they made, on a broad array of issues. Below is a brief summary of the group's recommendations as they pertain to the questions that emerged as central to the meeting: (1) What are the gaps in existing advocacy systems for older adults with mental health needs? and (2) What advocacy strategies might best be used to fill those gaps?

1. Gaps in Existing Advocacy Systems

The participants discussed a wide range of barriers that currently prevent older adults from receiving necessary mental health and other supportive services. They then voted on the three issues that they would most like to see an advocacy group address at the national level. The top three priorities were:

• Educating the public in order to debunk myths about older adults with mental health needs;
• Educating older adult mental health consumers about how they can help both themselves and their peers; and
• Encouraging peer support groups for older adults with mental health needs.

Other potential efforts that the group considered important, in order of the number of votes that they received, were:

• Educating mental health care providers;
• Improving access to services;
• Conducting legislative education and advocacy;
• Addressing housing and employment issues related to independent living;
• Improving access, oversight and referral mechanisms under managed care;
• Achieving parity and increased insurance coverage of mental health services;
• Improving access to advocates;
• Specializing mental health services to meet the particular needs of older adults;
• Improving conditions in nursing homes and other institutions;
• Bridging the generation gap between older mental health care consumers and their younger counterparts;
• Increasing respite opportunities for caregivers;
• Addressing issues specific to rural areas;
• Improving transportation services;
• Encouraging volunteer opportunities for older adults with mental illnesses;
• Improving guardianship systems;
• Controlling the influence of pharmaceutical companies on access to care;
• Giving consumers a greater voice in their care;
• Increasing consumer involvement in their own lives;
• Addressing problems inherent in involuntary treatment; and
• Promoting programs to prevent suicide among older adults.

2. Potential Advocacy Strategies

Many of the forum's participants were members of successful consumer-based advocacy efforts in their own states. The forum provided participants with both formal and informal opportunities to share these experiences. Below is a list of some of the strategies that the participants thought might be useful for advocacy at the national level:

• Establishing a consumer-centered national advocacy group that would work alone and in coalition with other organizations to improve the lives of older adults with mental health needs;
• Publicizing the availability of services through public education;
• Setting up volunteer-based telephone information lines;
• Educating law enforcement officers about mental illness in the context of jail diversion programs;
• Conducting public information campaigns at nursing homes, senior centers and other locations to help dispel myths surrounding aging and mental illness;
• Encouraging older adults with mental illnesses to work alongside people who do not have mental illnesses; and
• Linking older adult mental health care consumers through the internet.

B. Structure of Emerging Advocacy Group

The participants voted overwhelmingly to start a new consumer-based advocacy organization for older adults with mental health needs. The group's initial assessment of the organization's goals included the following:

• Improving older adults programs in national mental health organizations, and mental health programs in elders organizations;
• Ensuring that people with mental illnesses should receive the same range of services as people with developmental disabilities, with a similar emphasis on independent living;
• Encouraging peer support groups;
• Advocating for older adult specialists in policy-making at all levels of government;
• Developing funding sources at all levels;
• Advocating for the rights to refuse and to choose both treatments and providers;
• Advocating against the rise in both inpatient and outpatient involuntary commitment;
• Conducting public education through conferences and meetings; and
• Promoting community-based alternatives to institutionalization.

The participants began to draft a mission statement for their new organization. The preliminary draft states that the group will:

Advocate to expand and improve the mental health of older adults with mental illness, using the following principles:

Twenty-three of the participants volunteered to serve on a steering committee for the new advocacy group. The steering committee was divided into the following three subcommittees, with the following tasks:

1. Refining the group's mission statement;
2. Planning future meetings; and
3. Researching advocacy needs and strategies to help guide the group.

The names of the steering committee members, and their subcommittee assignments, can be found in minutes of the forum, which are attached as Appendix G.

VI. Next Steps

With the support of the National Self-Help Clearinghouse, a phone conference of the Planning Committee was held on August 6, 1998. Pam Cohen provided assistance and took responsibility for minute-taking, although the intent is that the consumer members, themselves, will assume these duties in the future. The goals of this conference call were to establish plans for meetings of the group dealing with the mission statement and goals, and the group dealing researching advocacy strategies. Consistent with the discussion on the final day of the Forum, the planning group also began work on plans for a steering committee meeting, in which the overall membership would review and build on the work of these three subcommittees and chart out its longer-range activities. Minutes of the meeting of the Planning Committee are presented in Appendix H.

VII. Conclusions

The forum on self-advocacy among older adults with mental illnesses affirmed that primary consumers, themselves, strongly feel a sense of unmet need and an absence of national advocacy fully representing their particular interests. The meeting and subsequent activities also affirmed the untapped interest, talent and capacities of older adults to advocate around their own mental health needs.

In order to foster the sort of national consumer movement among older adults with mental illness that would be justified by their concerns and their growing numbers, the group will need support, at least in the short-term. Many older adults with persistent, serious mental illness --some represented among the participants in this forum-- have no background in grassroots organizing and few, if any, financial resources beyond public benefits. Many others are isolated within dependent care settings such as nursing homes and board and care facilities. In the absence of outreach, they have few mechanisms by which to communicate their needs, except through their health care providers.

All have been the victims not only of mental disability, but of stigma, neglect, and patronization. As an advocacy effort, they are vulnerable to being swallowed up by competing interests and to having their needs watered-down to accommodate the mainstream. Older adults such as those participating in this forum don't lack the ability, but they do lack the basic tools necessary to mobilize an advocacy movement that is built on the values of self-definition and self-determination. Clearly, the work of the participants in this forum might serve as a foundation upon which such an advocacy movement can be built.

List of Appendices

A. Members of the Steering Committee

B. Application for participation and cover letter

C. Participant List

D. Agenda

E. National advocacy organizations presenting

F. Evaluation form and cover letter

G. Minutes of Forum

H. Minutes of the meeting of the Planning Committee