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National Mental Health Association Conference Reflections

July 2, 2002

I can hardly believe the NMHA conference was almost a month ago and that I am only now able to share some of the people memories and what I felt were for me and us some significant trends. I also can't believe that Marc and I entirely had to forego the NAMI convention due to the lack of cooperation of my physical health. It was such a disappointment because we really wanted to connect with others trying so hard to change to face of NAMI for real and meet some KNOWHOW friends. I am not quite up to my usual more creative, insightful self, so most of these thoughts come from the required report that NMHA conference scholarship recipients needed to submit after attending. I will say the scholarship support was very generous and the Health Systems Research staff was great to work with.

It was inspiring to participate in sessions led by Joe Rogers and Susan Rogers about how to make our voices heard and effective ways for coalition building. Their obvious commitment to obtaining the best for us is evident in their words and actions and their energy is remarkable. Based upon the workshops that I attended, I reported the following promising practices:

Voter Empowerment Programs, which indicate to consumers that their voices can make a difference and that active constituency, are more likely to be heard by legislators. Voting is the great equalizer; everyone's vote counts the same. Obtained excellent resources from National Consumer Technical Assistance Center of the NMHA and made contact with Alyce Thrash of the Mental Health Planning Advisory Council of the State of Nevada who has implemented a voter empowerment program, that has registered 27,000 consumers.

Psychiatric Advanced Directives. There needs to be a widespread movement to inform consumers, lawyers, doctors, family members, and hospitals about the need for every consumer to develop a viable psychiatric advanced directive. I do not think that the importance of this document can be overstated. It would definitely help everyone when consumers preplan what they judge to be most helpful to their wellness if the occasion arises when we are not comfortable or "unable" to make decisions because of a psychiatric crisis or episode. I obtained very good resources for developing my own psychiatric advanced directive as well as information on training others. There are several good links following EFHM 's article on this topic. A group in California called Project Return: The Next Step has a very thorough form that they have developed after much research. Their number is (213) 250-1500 x19.

Consumer Providers. I truly feel that it makes a difference when consumers mentor other consumers. There is no substitute for the authenticity and credibility that consumer peer counselors, crisis workers, case managers, social workers, nurses, and physicians, bring to the treatment team. Training and educational opportunities for consumers need to be made more available. Sometimes, it seems that there is more stigma and discrimination within the mental health provider field about this issue than in the general public.

People Contacts. What I will remember most about the conference are the other consumers that I had the opportunity to connect with. Consumers are doing such needed, meaningful, inspiring work on behalf of others. I met many consumers who are such role models for us in society. Eight months ago I wasn't even aware that there was a consumer movement. Now I am an activist, educator, mutual support person, computer mentor, etc. While I do not agree with all the positions of the different factions in the consumer/survivor movement, even the most radical of us has made significant contributions in the areas of institutional abuses and human rights. All have helped me solidify my own stances on issues important to us. Several special persons made an impression on me. They weren't among the speaker consumers like Joe Rogers or Dan Fisher (who along with Laurie Ahern received the Clifford Beers Award during the Conference), or Mary Ellen Copeland, etc. They included Daniel Frey of the New York City Voices and special friend to the late Ken Steele, Shela Silverman of Contac, Melissa Downton of KEY Consumer Organization, Inc. in Indiana and my roommate for the conference, Lewis Andrews of the Los Angeles County Client Coalition and I have to admit my absolute favorite mental person of the conference Karena Bayruns of the Clearinghouse. She has been so helpful to EFHM from its inception and we appreciate all she does for everyone.

Recommendations. The CMHS asked for some specific recommendations from consumer scholarship participants: Continue funding effective Consumer Run Programs And Services. While Sally Satel and other conservative ideologues may view certain consumer activities as anti-psychiatry and not friendly to traditional treatment models, I believe that the CHMS needs to listen to what is working for consumers in achieving wellness and what alternatives allow us to contribute to our community and society.

Many of us hold that medical treatment, including medication is definitely part of a comprehensive wellness program. Treatment however is not synonymous with taking medicine and seeing a psychiatrist and therapist once a month. We need to have opportunities to develop our strengths in social interactions, vocational and educational areas, and choices, in housing, recreation, volunteering, and creative wellness alternative programs. These are the experiences that keep us well, enhance our potential, and positively impact on the quality of our lives. Sometimes results in these areas may be challenging to measure, but it is being done. I think that at times I could forego an appointment with my psychiatrist(one of those very special equal partner types) more readily than missing a weekly mutual support group, for example. Drop-in-centers today are not the Bingo and Snack Dispenser places they once were. They are hubs of consumers making a difference in their communities and in society. If you stop funding Community Action Grants, one of the consumer programs affected will be the On Our Own Drop-In-Center in Charlottesville, VA. They currently are trying to expand their transitional housing program for patients ready to be discharged from a state facility. If this option were not available, consumers would be kept in the hospital even when they are completely ready to be discharged but are unable to find a place to go. This program is entirely run by consumers.

Unrestricted Block Grants. I think that those in the mental health arena, consumers and non-consumer professionals and support persons need to be able to test ideas and be supported for new initiatives and thinking out of the box. Treatment resources are shrinking and we are becoming rule and regulation bound. Maintaining programs because they are either mandated or the ones that receive some type of funding often establish priorities. Not because they are the chosen by consumers as effective and respectful, Community needs differ widely. With assured and rigorous evaluation designs and meaningful outcome measures, I feel that mental health stakeholders can provide creative and efficient solutions. A significant t need area is how communities address individuals with mental illness who may be in crisis. One solution in our community would be to fund a psychiatric nurse position 24 hours a day in the local hospital's emergency department as well as several beds designated for psychiatric stabilization. A consumer directed crisis response program would be even better. And continue supporting the attendance of mental health consumers at all kinds of conferences.

I am going to get working on the Alternatives Scholarship Form ASAP.

Empowered Terry

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