Report of activities at Alternatives 2004 in Denver
by Howard D. Trachtman, scholarship recipient

I registered for the conference on Wednesday, October 13th.

That evening I attended the keynote by A. Kathryn Power, SAMHSA's Director of CMHS. I was looking forward to her presentation as I heard her speak a few months prior at NMHA's 2004 convention. Unfortunately, she had important personal matters to prepare for, so we watched a video tape in the reception room. The room has some chairs, and thanks to quick work by the Clearinghouse, there soon were enough chairs to view the video. She spoke about important work being done by consumers and how consumers and families should help drive the mental health system. I've since requested a copy of the video to show to consumer groups in Massachusetts.

Thursday morning I grabbed breakfast and caught a moving opening keynote by Peter Ashenden, director of the mental health empowerment project. Peter pretended to be nervous, but gave a moving morning talk. The theme of the presentation was Self-Determination: The time has come. He spoke about the President's New Freedom Commission and it's call to action. Self-help and peer-support were promoted. Peter had experienced stigma and discrimination. Others thought he could "just snap out of it" and he was asked to sign treatment plans to whcih he had zero input.

Self-determination requires systems change. An attitude that leads people to define goals for themselves and their ability to achieve those goals. The components of self-determination were discussed in detail: respect, choice, ownership and support. Michael Kennedy was quoted, "self-determination is what life is all about...the foundation of self-help." Dr. Ed Knight's 1993 research study was described. Values of respect were discussed: sharing a common bond, resepect for individual dignity, cultural diversity, governing and operating structure that demonstrates shared decision making, flexibility, integrity and confidentiality.

Factors in assessing outcomes and quality of services were presented. Cost, quality of life, confidence, spiritual change, hope, and perception change were described.

White paper rules were explained in great details. The following is a summary of themes: there must be informed choice, it must be recovery focused, it must be person-centered, do no harm, there must be free access to records and immediate access to documents without fees, it must be based on a sytem of trust, it must have a focus on cultural values, it must be knowledge-based, it must be based on a partnership, and there must be access to services regardless of ability to pay.

For a morning workshop, I chose "Poster Child: Is being a role model jeopardizing your recovery?" This was a highly interactive workshop. We talked a lot of role confusion by people working in the system. I found this very beneficial. We discussed how it may become difficult to access supports. Indeed, we learned about a consumer whose picture literally was on posters through a subway system as a role model of recovery ended up taking his own life probably due to difficulty in accessing supports. So called "super consumers" can become such by three main avenues: self-annointed, by peers, and by providers. Also, there can be a combination of those methods, such as in my own case. We talked about pitfalls of being a "super consumer". I brought up the fact that I could be easily "Googled" and outed and this was the basis for further discussion. There are also pitfalls in the dating scene that is complicated by this. Super consumers are also subject to peer-envy, provider-envy, and the complications of dual relationships. Some are even called "sell-outs" by their peers. Accessing support groups, especially for those with dual diagnoses, may require much travel to go somewhere where one wouldn't be recognized. One's future friends and acquaintances may very well run across print materials or see a video and come to the realization that a person is a consumer. That happened with the presenter's doorman in a condiminium he had purchased. Others may also change their view of a consumer. If one is working, peers may say you're not really a consumer and providers may claim one was simply misdiagnosed. Possible solution may include different WRAP plans for different situations and roles. An exit strategy should be in place in case one loses one's job one doesn't lose sense of self. Outside interests/hobbies are important as well as relationships with friends and family.

Our Thursday lunch speaker was Dr. Dan Fisher from the National Empowerment Center. He was the sole self-disclosing consumer on the Presidnet's New Freedom Commission. His two most important points were recovery (is possible/probable) and "nothing about us without us." He was interested in serving on many/(all) of the 15 subcommittees, but had to pick and choose where he would be most effective. He helped facilitate getting people to the table and bringing in the consumer voice. Consumers need to be heard as a credible source. Culture change is investigated. Systems change requires good ideas or new ideas. Self-determination was featured as important. The necessity of consumer-run programs was discussed. Hope was highlighted. A discussion on how can people recovery was begun. NEC's PACE (Personal Assistance in Community Existance) was presented as a useful model.

At some point I was need to prepare for the workshop, "Seclusion and Restraints 2004: Is there a better way?" I had to get PowerPoint presentations ready as we had a working LCD projector and screen. I was the moderator, and was joined by my fellow panel members. Nan Stromberg, RN from Massachusetts Department of Mental Health filled in for Kevin Huckshorn, RN from NASMHPD and gave a history and background of R/S initiatives. Professor Wanda Mohr covered the harmful effects of R/S. Gayle Bluebird, RN showed how comfort rooms can be effectively deployed, and Pamela Trammell told everyone how Taylor Hardin Secure Medical Facility (a forensic hospital) was extemely successful in their efforts and employed almost zero restraint and seclusion. We budget time to take questions, but realized afterwards that we should have presented a 3 hour institute instead, there was that much material to share with the audience.

Immediately after our R/S workshop Pamela Trammel and myself rushed over to another hotel to participate in a movement to organize consumers nationally. As moderator of NO-INFLUENCE, a listserv devoted to influencing government, business, or professional organizations, I was able to make a brief presentation.

That night I attended a caucus on Entreprenuership. I am very excited about opportunities for consumers to become business owners. The organizer, Can Truong, runs Enterprise People, a business incubator in Madison, Wisconsin. Aside for the presentation, there was plenty of networking happening. I have a proposal for a business incubator in Massachusetts which is available upon request.

Friday morning I prepared for another workshop I was helping present. The executive director of Consumer Quality Initiatives, Jonathan Delman, my employer was doing a workshop entitled "Consumer-Directed Research to Achieve a Consumer-Directed Mental Health System". Mr. Delman did much of the presenting, but I was able to describe my role at CQI and the benefits of working for a consumer-run organization. The audience had good questions and the workshop was a success. We all learned a lot from others doing similar work in other states.

The plenary lunch on Friday didn't have much content to learn from, but many people were recognized for their work in advocacy and we all had an opportunity to remember advocates who have passed away.

The afternoon workshop I chose was on warmlines and was conducted by Lyette Peraza, director of the Friendship Line in Los Angeles. I'm a warmline operator and helped secure funding for four warmlines in my area. I learned a lot about listening skills and the process for hiring new operators. We learned a bit about obtaining funding and the operations part of running the warmline. Important points to consider around hiring include: person needs to be a consumer, person needs to admit to being a consumer, stability on part of prospective operator, person is upbeat and sociable, person's handwriting is legible, person has transportation, and person can benefit from the experience. Reasons why the warmline will be successful include: hours of operation thought through carefully - when traditional services are not available, peer supporters chosen for human qualities, callers treated as equals and with respect, organizational leadership, training - callers feeling supported by peers, staff diverse and culturally competent, team members have sense of pride, and staff work in a friendly enviornment.

My next workshop was called "Measuring Outcomes Related to Recovery" by Ed Knight and Anita Miller. I was very interested in this topic due to my work at CQI and M-POWER. We learned of a new instrument called the CROS used for comparing and contrasting consumers perceptions of themselves with those of providers and a "very important person" in their life. This instrument has been validated through a long process. This reminded me of the C-CERF (consumer version of the current evaluation of risk and functioning) I helped design for Massachusetts' Mental Health Authority.

I also started to attend a workshop called "Spirituality as a Vital Aspect of a Holistic Reovery Model" but it wasn't as described and I felt uncomfortable and left.

Saturday morning I listened to the general session on Consumer-Operated Service Program Multisite Research Initiative. I was interested in this as it was directly related to my work. It was a very technical presentation, and difficult to summarize.

I chose to attend a workshop entitled "Maintaining Your Sanity While Trying to Advocate from Within the System". This was interested, but hard to quantify lessons learned.

Our luncheon session was panel on stigma and discrimination. I was interested due to Massachusetts' role in the Elimination of Barriers Initiative. I don't have lengthy notes from this discussion.

I next went to a institute called on implementing the Recommendations of the New Freedom Commission. Unfortunately, Dr. Fisher wasn't there to present, and like many others I left the institute early. Then I went to "The Power of State-wide Consumer-Run Organizations". A group of presenters reinforced my confidence in consumer-run organizations like M-POWER.

I spent the rest of the conference networking. Sometimes I find that I can learn more from other consumers than from a long presentation in a workshop format. I organized a large dinner group of people interested in restraint and seclusion and other friends. This was very successful.