FYI, see below for a report of a CMHS-funded older adult consumer meeting. Plans
are underway to hold a second forum.
Forum on Self-Advocacy Among Older Adults with Mental Health Needs
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
The purpose of the older adults advocacy forum was to explore how the quality of life
of older adults with mental health needs might be substantially improved through consumer
advocacy. This was to be accomplished by:
and describing exemplary advocacy strategies for older adult consumers of mental health
ÿ Identifying gaps in existing advocacy
systems for this population and those factors which have contributed to or hindered the
development of grassroots advocacy;
ÿ Exploring new advocacy approaches to meet
the needs of older mental health care consumers; and
ÿ 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
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.
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.
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:
don't know what I'm going to do when I get home, but I'm going to do something."
national organization is being formed today."
going home with so many different ideas, feelings and energies in my heart and mind."
a better person for having come here."
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:
energy created by the weaving of minds into a tapestry that is taking shape will become a
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."
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:
the public in order to debunk myths about older adults with mental health needs;
older adult mental health consumers about how they can help both themselves and their
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:
mental health care providers;
access to services;
legislative education and advocacy;
housing and employment issues related to independent living;
access, oversight and referral mechanisms under managed care;
parity and increased insurance coverage of mental health services;
access to advocates;
mental health services to meet the particular needs of older adults;
conditions in nursing homes and other institutions;
the generation gap between older mental health care consumers and their younger
respite opportunities for caregivers;
issues specific to rural areas;
volunteer opportunities for older adults with mental illnesses;
the influence of pharmaceutical companies on access to care;
consumers a greater voice in their care;
consumer involvement in their own lives;
problems inherent in involuntary treatment; and
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:
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;
the availability of services through public education;
up volunteer-based telephone information lines;
law enforcement officers about mental illness in the context of jail diversion programs;
public information campaigns at nursing homes, senior centers and other locations to help
dispel myths surrounding aging and mental illness;
older adults with mental illnesses to work alongside people who do not have mental
older adult mental health care consumers through the internet.
B. Structure of Emerging Advocacy
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:
older adults programs in national mental health organizations, and mental health programs
in elders organizations;
that people with mental illnesses should receive the same range of services as people with
developmental disabilities, with a similar emphasis on independent living;
peer support groups;
for older adult specialists in policy-making at all levels of government;
funding sources at all levels;
for the rights to refuse and to choose both treatments and providers;
against the rise in both inpatient and outpatient involuntary commitment;
public education through conferences and meetings; and
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:
recovery for all;
consumer choice at all levels;
wellness, not illness;
equitable funding for older adult services;
that services are specifically tailored to individual needs, and not bundled;
community-based care and the least restrictive alternatives;
community membership and community outreach; and
education and advocacy by consumers.
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:
the group's mission statement;
future meetings; and
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.
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.
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.