Consumer Supporter News
November, 1999

• NCSTAC Launches National Voter Empowerment Campaign
• A Coalition Grows in the Nation's Capitol
• Community Living Succeeds in Oregon
• Consumer/Survivor Conferences Keep the Movement Focused
• NMHA Leads the Fight for Veterans' Mental Health
• New NMHA Values Embrace Cultural Competence
• NCSTAC Promotes Minorities and Women
• National Voter Empowerment Training Registration
• Consumer Involvement Survey

Get Out the Vote!:
NCSTAC Providing Assistance To Mental Health Consumers

By Ellen Alderton, NCSTAC Education Specialist

42 million individuals would constitute a tremendous voting block, and this is precisely how many American adults the National Institutes of Health estimate to be mental health consumers. The National Consumer Supporter Technical Assistance Center is now launching a nation-wide effort to get these consumers to the polls for the year 2,000 elections.

"We are excited and privileged to be spearheading this national initiative," says Catherine Huynh, NCSTAC project director. "So many mental health consumers are under the mistaken impression that they are not allowed to vote. We want to put out the message that voting is a constitutional right that we all share."

Many obstacles have lead to the virtual disenfranchisement of individuals with psychiatric diagnoses: Often, mental health consumers incorrectly believe that they are not allowed to vote. In reality, only those very few people who have specifically been deemed mentally incompetent by a court may not vote. Other consumers, even those currently living in mental institutions, may exercise their constitutional right to participate in elections.

NCSTAC will be offering various regional training programs around the country. At these programs, participants will learn how to train leaders in their own states in how to set up voter empowerment programs. The training programs will cover conducting research on registration rules in your home state, finding and registering consumers - including the homeless and the institutionalized, educating consumers about candidates and issues in a non-partisan manner, maintaining a registrant database, reminding consumers when the election date is approaching, and arranging for voters to get to the polls.

"Fortunately," says Ms. Huynh, "we will be able to offer some scholarships for leaders from consumer organizations to take part in these workshops. We plan the workshops to be 'train-the-trainer' scenarios, where the participants will go home and educate other leaders in how to run voter empower campaigns. We hope to reach as many people as possible in this way."

Originally, the Voter Empowerment Project started as a one-man crusade championed by Ken Steele of New York State. When newly-developed medications allowed Mr. Steele relief in his long-time struggle with schizophrenia, he became determined not only to participate as a full citizen in the American electoral process but also to assist other consumers to take part as well. In four years of running his program, Mr. Steele has registered over 27,000 mental health consumers in New York.

Participants of the National Voter Empowerment train-the-trainer workshops will receive a video chronicling Steele's story, together with other educational materials to share with their own trainees. Those interested either in taking part in the national train-the-trainer sessions or in learning how to launch voter outreach programs in their own areas should contact NCSTAC.

A Coalition Grows in the Nation's Capitol

by Ellen Alderton, NCSTAC Education Specialist

Forming a coalition of ten disparate groups with often widely varying agendas isn't easy, but this is exactly what NAMI DC and the DC Mental Health Consumers' League have set out to do. "I don't even want to say that this will be challenging," says NAMI DC Program Officer, Nancy Lee Head, "because that is so obvious."

According to Ms. Head, the coalition's single most important goal will be "to try to help people to move beyond their own personal issues to find a common agenda without losing their own identity and focus." That common agenda entails advocating together to address the fragmentation of mental health services and the other systemic needs for reform in the District of Columbia.

"We will need to educate ourselves about each other's agendas," says Head. "Those of us in NAMI and in the Consumers' League, for example, know very little about children's issues. But we will have to learn and be able to speak up on this issue so that we can support FASA (the Family Advocacy and Support Association) intelligently."

NAMI DC and the DC Mental Health Consumers' League are recipients of one of five mini-grants, each totaling eight thousand dollars, that have been awarded by NCSTAC for the 1999 fiscal year Coalitions for Community Care project. With their funding, NAMI DC and the DC Mental Health Consumers' League intend to expand a current coalition of six local mental health organizations to include four more groups.

The other four members of the current coalition are the Family Advocacy and Support Association, Friends of Saint Elizabeths Hospital, the Mental Health Association of the District of Columbia and Schizophrenics Anonymous. Additional groups that the coalition wishes to reach out to include newly-forming organizations in D.C.'s Latino community.

Community Living Succeeds in Oregon

by Cecilia Vergaretti, Executive Director, MHA of Oregon

Earlier this year, the Mental Health Association of Oregon won an $8,000 mini-grant as part of NCSTAC's Coalitions for Community Care initiative. The grant proposal came out of a decision to bring the PACT model (Program of Assertive Community Treatment) of treatment to Oregon. While the principles of Assertive Community Treatment are seen by some to increase the empowerment of consumers and the flexibility of service providers, the Mental Health Association of Oregon has concerns about the coercive elements of PACT.

In November, the Oregon Office of Mental Health Services is sponsoring a conference to focus on a variety of existing treatment models. Our project will look to build upon the momentum of this conference and will work to build consensus about the concept of Successful Community Living and about what consumers think are the best ways to achieve this goal.

A guiding principle of the Mental Health Association of Oregon is that people who use mental health services must enjoy the maximum possible control over the services they receive. Accordingly, the first step in this project will be to create a Consumer Advisory Committee which will guide the project. Once this committee is developed, other groups (family members, providers, representatives of managed care and community mental health programs) will be invited to the table to begin consensus- building.

We believe this project will help put the spotlight on what works best for consumers in the least coercive fashion. Ultimately, we hope that the consensus-building process will help us pull together a coalition of folks who will be able to convince the State Office of Mental Health Services, local mental health providers, and the state legislature that Successful Community Living is possible with the right types of adequately funded services.

Consumer/Survivor Conferences Keep the Movement Focused

by Brian Coopper, NMHA Director of Consumer Advocacy

Three recent gatherings of recipients and survivors of mental health services have served to keep both the national and international mental health consumer/survivor movements energized. The first was the National Summit of Mental Health Consumers and Survivors, held August 26-29 in Portland, Oregon. Just one week later, the 1999 World Congress of the World Federation for Mental Health (WFMH) in Santiago, Chile was the gathering point for the World Network of Users and Survivors of Psychiatry. Finally, the annual Alternatives conference took place in Houston, Texas from October 20 through the 24th.

Both meetings were very successful. At the Summit, over 450 consumers and survivors met to develop consensus on a series of 12 platform "planks." Sponsored by the National Mental Health Consumers' Self-Help Clearinghouse, this meeting involved a lot of hard work by all of the participants. The feeling of camaraderie and sharing that evolved made participation at the Summit a truly moving event for virtually everybody who was there. Many thanks to Joseph Rogers and Marie Verna of the Clearinghouse for having the vision and organization to bring us together in this very productive Summit. The reports from the platform planks are still being finalized but should be available soon through www.mhselfhelp.org

At the World Congress of the WFMH in Santiago, 14 consumer/survivors from the United States on scholarship from the U.S. Center for Mental Health Services joined with users and survivors from other countries to attend this biennial conference. (Note: The term "consumer" is used in North America and Australia, but most other regions of the world employ the term "user.")

Attendees met every day at lunch time and developed action plans for formalizing the organization of the World Network of Users and Survivors of Psychiatry (WNUSP). An Interim Committee was created, and Maria Mar (mariamar@neteze.com) was elected as the representative for North America. Enough money was collected from the attendees to cover the dues for two years to the WFMH, so the WNUSP will be a voting member at the next World Congress in 2001 in Vancouver, British Columbia. A final report is expected later this year that consolidates the individual reports of each of the scholarship recipients, and the intent is to post that report on the Internet as well.

Also of note from the World Congress in Chile: Sylvia Caras, psychiatric survivor and webmaster of www.peoplewho.net, was elected to the Board of Directors of the WFMH. Congratulations, Sylvia!

Another meeting in the U.S. this fall capped off the work of consumers and survivors from the Summit and the World Congress. Houston, Texas saw the last Alternatives conference of the millennium. Sponsored by the Consumer Organization and Networking Technical Assistance Center (www.contac.org), it was aptly named, too: "The New Millennium: Looking Backward, Moving Forward." 1999 has certainly been a big year for the focusing of consumer/survivor involvement on both the national and international levels, and 2000 promises nothing less!

NMHA Leads the Fight for Veterans' Mental Health

by Frances Andrew, Assistant Director of Legislative Affairs

NMHA is seriously concerned about the Veterans Administration's failure to adequately address the medical needs of the 650,000 veterans who have a chronic mental illness. Unfortunately, many of these veterans are unable to receive the mental health and substance abuse treatment that they need and deserve due to the recent restructuring of the Veteran's Health Administration (VHA). This year, due to our efforts, the House has approved a $18.3 billion veterans' health program, and the Senate has approved a $19 billion program (both were increased $1.7 billion from last year).

With the restructuring of the VHA, the number of inpatient psychiatric beds has been cut drastically, as the VA attempts to shift towards more outpatient care. We are particularly concerned that dollars saved by eliminating beds from inpatient psychiatric facilities are not being redirected to maintain capacity and to serve veterans with mental illness in the community; this is a breach of the Public Law 104-262.

Currently, there is no indication that the twenty-two regional Veteran's Integrated Service Networks (VISN's) are compensating for the lack of inpatient care with either adequate alternative care settings or community-based services for veterans with mental illness. Between FY96 and FY97 alone, these cuts totaled $64 million. As a result of these cuts, 15,000-30,000 veterans with serious mental illness are not receiving the services that they need.

The VHA lacks the tracking system to be able to assess the effects of discharging seriously mentally ill veterans from inpatient and long-term care beds. In addition, the VHA has not produced thorough outcome measures for mental healthcare, nor for Post Traumatic Stress Disorder, since the regional VISN system was implemented in 1995.

Frighteningly, less than 40% of community-based outpatient clinics offer even basic mental health services, and over 2/3 of the VHA's facilities do not have case management services. Case management is essential for mentally ill veterans because of the lack of financial and family support within this demographic group. In addition, many members of this group need continued attention because they suffer from the dual diagnoses of mental illness and substance abuse. NMHA is taking the necessary steps on the federal level to end the poor treatment of veterans with mental illnesses.

NMHA has been successful in getting our own mental health legislative provisions in the House and Senate Appropriations bills. These provisions would allow more community-based outpatient clinics, expansion of case management, and would require each VISN director to produce a report regarding the redistribution of those dollars which were saved by the decrease in inpatient psychiatric beds in VA hospitals. The community-based outpatient clinics would be modeled after the Intensive Psychiatric Community Care which is already in use and proven to be cost effective.

Both the House and Senate committees are urging the VA to provide case management for veterans who are diagnosed as chronically mentally ill similar to those case management programs financed in the public mental health systems (particularly in New Jersey, Kentucky, and Iowa). NMHA is still trying to get $64 million appropriated for case management programs.

Both the House and the Senate bills have language in them requesting a comprehensive report which should include the number of patients receiving treatment for mental illnesses at each medical center. We were also successful in including specific improvements to several VISN's which had little to offer mentally ill veterans. Finally, the House language has a provision which requires the VISN's to increase the availability of the latest psychotropic medications for mentally ill veterans.

We have been urging legislators not to forget the men and women to whom our Nation owes a great debt. Veterans have risked their lives to protect our country and values; and their sacrifice has left us with a moral obligation to provide the best care available.

NMHA applauds several members of Congress, especially Senators Ted Stevens, Robert Byrd, Christopher Bond, Tom Harkin, John Rockefeller, Jon Kyl, Olympia Snowe and Representatives Bill Young, James Walsh, Marcy Kaptur, Alan Mollohan, Rodney Frelinguysen, Anne Meagher Northup, Carrie Meek, John Sununu, David Price and David Hobson for their overwhelming support in the fight for better mental health treatment for veterans. For further information, please contact Frances Andrew at (703) 838-7530 or by e-mail at fandrew@nmha.org.

New NMHA Values Embrace Cultural Competence

by Judy Leaver, NMHA Vice-President for Constituency Building

The National Mental Health Association has launched a multi-year initiative to increase the organization's cultural competence at the national, state and local levels. A task force on diversity was convened by the NMHA Board of Directors in 1998, and it has produced a Cultural Competency Planning guide to assist Mental Health Associations (MHA's) throughout the country.

This effort is driven by the reality of rapidly changing demographics that require nonprofit groups to move aggressively to reflect the communities they serve. Organizations that fail to do so risk becoming irrelevant. This means that boards, volunteers and staff should be representative of diverse groups in their communities.

The NMHA task force determined that cultural competence more inclusively reflects the goals of the organization than does diversity. NMHA's statement of cultural competence includes race, ethnicity, religion, sexual orientation, gender, social groups and disabilities. As the organization moves toward its goal of cultural competence, NMHA values demand that consumer/survivors be significantly represented on boards, staff and in volunteer pools of MHA's, making real the phrase "nothing about us without us."

Diversity is imbedded in the goal of cultural competence, but it is just one component. Accepting and understanding differences in customs, mores and patterns of thinking in other cultures are tangible ways in which diversity is valued. NMHA and its affiliates are working toward becoming a system that responds to the unique needs of populations whose cultures are different from that which is currently dominant or mainstream in America.

Mainstream America will very shortly look quite different than it does now, providing the major impetus for organizations and systems to become culturally competent. For example, Asian and Pacific Islanders are the fastest growing segment of the United States population and will reach 12 million by the year 2000. In 2005, ethnic minorities will account for 47% of the nation's population. 85% of those entering the work force will be women, people of color and immigrants. Non-Latino whites, presently 75% of all Americans, will shrink to a bare majority by 2050.

What can nonprofit agencies do to become culturally competent? A useful place to begin is an organizational assessment of current cultural competence. The NMHA Cultural Competency Planning Guide includes both a survey and a competence curriculum for use in evaluating any organization's current status.

The next important step is the development of a values statement on cultural competence. Ongoing discussion regarding individual and agency values will help shape a workable statement. There are many published examples of such statements that the TA Center can provide for interested groups.

NMHA has adapted fourteen guiding principles from the Center for Mental Health Services to provide a context for becoming more culturally competent. These principles undergird our organizational goals and recommendations and also provide a framework for what to advocate for in a culturally competent service system.

Over the next three years, NMHA will provide regular trainings on cultural competence to assist MHA's to prepare them for this new requirement in the reaffiliation process beginning in 2002. Any interested consumer supporter organization may obtain a free copy of the Cultural Competency Planning Guide by contacting Tracie Turner at 703-838-7554 or by e-mail at tturner@nmha.org.

NCSTAC Promotes Minorities and Women

by Catherine Huynh, NCSTAC Director

There is ample evidence that cultural differences among ethnic minorities inhibit access to mental health care. Cultural barriers common to many ethnic groups include language barriers, a cultural heritage which makes use of different treatment methods, and systemic prejudices manifested by health professionals. In addition, each ethnic group encounters system barriers unique to their culture. Successful treatment of minorities with mental health problems depends upon an understanding of the consumer's sociocultural setting.

Women with mental illness also face a range of treatment barriers that the current service system does not have the capacity to address. Traditionally, service providers overlook women's responsibilities to home and children, including planning for pregnancy, pre-natal care, impacts of psychotropic drugs during pregnancy and following childbirth, parental rights, child placement in foster or related types of care, basic parenting skills, and unplanned parental psychiatric hospitalization experiences. These particular needs and concerns affect women's ability to seek mental health treatment.

Consumer supporter organizations must change mental health services to increase service utilization by women and to accommodate individuals from diverse cultures. These are difficult tasks that require hard work, dedication, and a commitment to organizational transformation, yet these changes are necessary in order to elicit the most effective responses and outcomes. The National Consumer Supporter Technical Assistance Center seeks applicants for start-up grants of $5,000 to go to ten consumer supporter organizations to address cultural competence issues in mental health care for ethnic minorities and women. Successful proposals will form local, regional, or statewide coalitions with service providers and/or agencies with diverse groups of mental health stakeholders to address these issues. In turn, these sites will become study sites.

Additional information and application forms are available on-line at www.nmha.org/ncstac or by contacting the TA Center at (800) 969-6642 or by email at consumerta@nmha.org.

Applications must be received by Friday, January 14th, 2000.

National Voter Empowerment Training Registration

If you are interested in promoting voter empowerment, either by providing further training or by registering and educating voters, please answer the questions below and send your responses Beth Schaar at consumerta@nmha.org or, by fax, at (703) 684-5968.

1) Name and address of your consumer supporter organization. Your title within the organization:

2) Why are you interested in training consumer supporter groups in voter empowerment
or
why are you interested in launching a voter outreach campaign?

3) Describe your plans to work in cooperation with other consumer supporter organizations.

4) Describe your organizational capacity. Do you have a computer to house a registrant database? How much staff can you devote to this project?

Consumer Involvement Survey

Promoting consumer involvement…

NCSTAC is gathering information for a special publication on consumer involvement. Please help us by sharing your stories:

How have you tried to increase consumer involvement in your organization?

What strategies have you found particularly successful?

What problems have you encountered?

Please forward your comments to Beth Schaar at consumerta@nmha.org or, by fax, at (703) 684-5968.