NAMI Consumer Council to Host Consumer/Survivor Leadership Forum

Posted on August 29, 2003

In order to promote enhanced collaboration among elements of the consumer/survivor movement, the NAMI National Consumer Council is pleased to announce it will host a Round Table Forum of leaders from the consumer/survivor movement to work towards establishing a Consensus Partnership Platform for Change. This groundbreaking policy-centered event is planned to occur as soon as possible within the next 90 days in order to build on new opportunities presented by the recent release of the President’s New Freedom Commission Report.

Background:

There has never been a greater opportunity for consumers of mental health services (consumer/survivors) to come together and take leadership of a broad, recovery-oriented movement in the United States. However, important consensus development work among different elements of the consumer/survivor movement remains to be done. A recent example of deep divisions that remain in our movement is illustrated by recent events surrounding "Support Coalition International" (SCI). On August 16, 2003, members of the SCI and Mind Freedom (MF), began a fast to publicize their disagreement with prevailing scientific and medical consensus on the nature and treatment of mental disorders (mental illnesses).

Literally and symbolically, they have chosen to direct their protest to the U.S. Surgeon General, the American Psychiatric Association, and NAMI, The Nation’s Voice on Mental Illness—although in fact the fast represents a challenge to nearly all organizations and members of the mental health community, including the World Health Organization (WHO), President Bush’s New Freedom Commission on Mental Health, the National Institute of Mental Health (NIMH) and the U.S. Substance Abuse & Mental Health Services Administration (SAMHSA), as well as many consumer-led groups.

NAMI respects the right of SCI/MF and others to their views. In recent years, NAMI has sought to engage in ongoing dialogue with consumer/survivor leaders over not only those issues where we disagree, but also more importantly, areas of potential agreement and cooperation.

Consumer Leadership within NAMI:

NAMI has been and remains an organization committed to promoting consumer leadership. Eighteen years ago, NAMI recognized the importance of providing leadership opportunities for members living with mental illness and established the National Consumer Council. The NAMI National Consumer Council advances the activities and involvement of the consumer membership of NAMI at the local, state and national levels by facilitating active participation in advocacy, peer support, public education and governance of the NAMI organization. Three active subcommittees are Ethics; Restraint and Seclusion; and Education, Mentoring and Outreach. Today, consumer leaders constitute a full one-quarter of all NAMI Board members at all levels of the organization. In addition, consumer leadership is essential to NAMI’s policy, program, outreach and scientific activities.

The NAMI National Consumer Council acknowledges and is proud to work actively in support of the NAMI mission, which is "the eradication of mental illnesses and the improvement of the quality of life of all whose lives are affected by these disorders." This work focuses on activities and efforts to preserve the respect, dignity and human rights of mental health consumers.

Council members and other NAMI grassroots volunteer leaders living with mental illness dedicate themselves to empowering and educating mental health consumers to address their issues around care, treatment, services, mutual support and consumer rights through consumer initiatives in their communities. We work hard to maintain a productive and accountable National Consumer Council through literally thousands of volunteer hours of time and talent. The consumer movement within NAMI is incredibly rich in its experiences, leadership and diversity. NAMI members who happen to have a mental illness bring a plurality of opinions and perspectives to our organization. The NAMI National Consumer Council honors the diverse opinions of all members when providing input regarding support, education, advocacy and policy issues.

Leadership development opportunities are emerging as an important mechanism to help in the recovery process. Experiential knowledge is a common theme in both leadership and recovery, and NAMI provides those experiences.

For NAMI, recovery is a foundational principle and involvement in NAMI has become an important vehicle for recovery and a pathway towards wellness. A strengths-based approach, as well as a focus on consumer choice, are cornerstones of all NAMI initiatives, activities and efforts. In the past year alone, thousands of NAMI members living with mental illness have benefited from the various opportunities for leadership and recovery with the organization.

In addition to the National Consumer Council, specific NAMI initiatives developed to help the process of recovery include:

• Peer-to-Peer Recovery Education Course, a 9-week, illness management and wellness educational course taught by people in recovery, for people living with mental illness.
• In Our Own Voice, a public awareness project built around one-hour presentations by persons living with mental illness who talk personally about their own recovery and issues of treatment and medications, coping skills, hopes and dreams.
• NAMI C.A.R.E. (Consumers Advocating Recovery through Empowerment), a mutual self-help support group model.
• Provider Education Course, a 10-week initiative developed to raise awareness with mental health providers, sharing the perspective of the impact mental illness has on the family and the individual. A team, including a member living with mental illness, a family member of a person living with mental illness, and a consumer- or family member- provider, teaches the course.
• State-level Consumer Councils, similar in structure and purpose to the National Consumer Council, Consumer Councils at the State level may be established as the primary leadership development strategy for some state NAMI organizations.
• Office of Consumer Affairs, established one year ago to provide technical assistance to state organizations and local affiliates relevant to consumer inclusion, integration, and participation in all areas. This includes governance, advocacy, education, support, membership growth and leadership development. The National Consumer Council receives dedicated staff support for our work from NAMI OCA.

The Importance of Dialogue:

NAMI consumer leaders and members have had similar experiences and share concerns with other individuals and organizations within the consumer/survivor movement, even if we do not always agree with their ideological views or tactics. In this light, we are puzzled by the current SCI/MF protest, especially because it comes shortly after the release of the New Freedom Commission’s final report to the President—which has created new opportunities to seek changes in the mental health system. The NAMI National Consumer Council views these new opportunities as the dawn of a new era in which the development of consensus within the advocacy community will be of increasing importance.

For this to occur there must be genuine dialogue and respect for all elements of the national consumer/survivor movement. Sadly, however, for many years, NAMI members living with mental illness who are a large, diverse and growing component of this movement, have experienced unwarranted criticism and at times, outright derision from our peers in the consumer/survivor movement. It has been difficult to experience discrimination from others in the movement who point to the values of choice, self-determination and respect, yet have at times seemed unwilling to honor those values in communicating with NAMI members living with mental illness. It is our greatest hope that this chapter in our movement is coming to a close.

NAMI remains committed to ongoing, respectful dialogue with all individuals and organizations genuinely interested in promoting recovery and otherwise improving the lives of persons who confront schizophrenia, bipolar disorder (manic depression), major depression, severe anxiety disorders and other severe forms of mental disorder. Whether by providing support, education, advocacy, or leadership experiences, all levels of NAMI are working every day to improve conditions in society and to provide avenues for recovery. The NAMI Consumer Council is proud to be a respected, viable, integral part of the NAMI organization. Recovery is possible, and people no longer need be defined by their illness, but rather by the goals, hopes and dreams so vital to each of us.

We believe it is time for a sustained dialogue to identify how we will move ahead – together.

Marty Raaymakers, NAMI Michigan, Chair

Steve Miller, NAMI Iowa, Director

Veronica Macy, NAMI Indiana, Vice Chair

Eileen White, NAMI South Dakota, Member at Large

Jean Steele, NAMI Alaska, Member at Large

Richard Gray, NAMI Kansas, Member at Large