Subcommittee on Consumer/Survivor Issues

Bethesda, MD, January 23, 24

Brief anecdotal report

It’s very cold in Bethesda and several times I felt how slippery the ice was and I was glad I’d been advised to wear shoes that gripped. There’s a bit of snow on the ground, not yet melting despite the sunny day. And behind the hotel is a skating rink where I nostalgically watched a young man learning to skate backwards.

Brian Cooper, Irene Lynch, Kathy Muscari and Ron Thompson were observers, as well as CMHS interns. Ron made clear to me that he believed our committee work had no value. I made clear to him that I felt dissed and didn’t like the feeling. Bernie Arons heard the whole conversation <sigh>.

The Subcommittee members updated each other on what we’d each been doing since September, worked out more organizational issues, adopted a mission statement:

The mission of the Subcommittee on Consumer/Survivor Issues is to advise the CMHS/NAC on specific values, needs, issues and concerns from consumer/survivor perspectives and reflect best practices in providing that advice.

The Subcommittee decided, by a 4:3 vote, to not establish any policy for removing members who missed meetings. The Subcommittee decided to not schedule monthly teleconferences between regularly scheduled meetings. The Subcommittee will use the e mail list for information but is less interested in using e mail for discussions. The Subcommittee worked on developing the process for replacing members who rotate off the Subcommittee.

Minutes of the September meeting were approved and will be posted on the web. (URL to follow as soon as I know it). These notes will be anecdotal; subcommittee meetings are public and minutes, once approved, will be available.

Bernie Arons updated on CMHS activities including a language shift from KDA to PRNS: Programs of National and Regional Significance and enhanced Limited English Proficiency (LEP) requirements. He noted that in the current SAMHSA/CMHS authorization, 17% of the proposed budget consists of congressionally specified programs and activities and Member’s Projects.

There is a federal hiring freeze so the OEL position that Paolo used to hold won’t be filled ‘til the freeze is listed. There have been interviews; there may be more later. Anna Marsh is returning to her position as Director of Administrative Services. Camille Barry will be the next Deputy Director.

Peggy Clark, HCFA, and Mike English described the HCFA/CMHS interest in ACT. ACT promotion is a strategy to acquire HCFA/Medicaid funding in a coordinated package. HCFA/SAMHSA are developing what the key elements of ACT are and whether coercion is one of them. Mike said coercion is not a core element. No one discussed whether the insulation by the team of the patient from the community, from people and activities outside of mental health, whether this cocooning is a core element, though we did mention dependency. Both speakers were careful not to say PACT, though Betsy McDonnel-Herr several times spoke of PACT as the "gold standard" and was enthusiastic about the program’s benefits and features. Mike explained that the current initiative and the Lewin Group contract was to develop a funding mechanism for ACT but that didn’t mean endorsement of ACT. He also explained that since cost/benefit analysis is too expensive, they are proud to have developed an alternative, a budget simulation model. I noted that a funding mechanism would mean that services would follow those dollars (that this was in fact ACT support). I asked about the concerns I often read in e mails about the secrecy behind the HCFA/CMHS agenda (and I forgot to question how/why/who the NAMI TA Center was diverted from state networking to PACT development). Mike reacted strongly to the word "secrecy," and said all the information was available: it takes a FOIA request to see the Lewin contract, and the literature review, the first stage of the work, is "draft" and we could not see it but would be sent excerpts. I asked for on going report-outs and he went on to say how many projects he oversaw, how much work he and his staff had to do, did I understand how much time away from his work it would take to report, that he received 100 e mails a day and that was a lot for him, that he involved consumers more than anyone, NIMH didn’t, and NIMH’s budget significantly exceeds CMHS’ so where did it get him, and what do we consumers do for him/CMHS and what about the huge numbers of other consumers that I don’t represent.

Two rumors are circulating about who might be appointed SAMHSA director: 1) Laurie Flynn, who is going to direct a children and adolescent project at Columbia, and 2) Joyce Berry who is currently a CMHS division director.

Ron Manderscheid gave an organized and balanced presentation and made suggestions for c/s participation in a variety of initiatives. The meeting notes will capture his presentation, and the other two presentations today on the new federal parity implementation rules (which permit mental health non-coverage for non-compliance) and on Olmstead implementation.

Brian Cooper and Irene Lynch spoke at public comment and a summary of Alicia Lucksted’s Lesbian, Gay, Bi, and Transgendered Consumers’ Project was handed out.

Discussion of recommendations and next steps

The Subcommittee could not agree on a recommendation for guidelines defining who qualifies to serve as a consumer on boards and commissions, didn't feel that guidelines were necessary. The proposed draft was voted down. The Subcommittee recommended better data collection about civil commitment and Medicaid and the establishment of a central collection point for recovery literature. The Subcommittee emphasized the importance of cultural and language sensitivity.

Cultural competence: skills and abilities to communicate and negotiate in an environment of difference.

I think some of the clashes with CMHS, around Walk the Walk, what the Surgeon General’s Report said, ... is that CMHS picks what they consider expert consumers to participate and assume that they are given expert guidance, even though it is from one’s persons vantage point.  This is how they select professional participants.  But I see my role as a representative, needing to gather input and disseminate results and I expect other selected consumers to be that, representatives. It would be useful to be more overt in the expectations.

Next Subcommittee meeting May 20, 21

National Advisory Council

NAC minutes are posted on KEN. My own notes follow.

Visitors: Brian Cooper, Irene Lynch, Gilberto Romero, Ron Thompson, Laura VanTosh

Collapsing funded programs into one PRNS line item provides budgeting flexibility.

A question was asked about over-medication of minority children. Bernie said research showed opposite, that minority children are less treated (medicated) than white.

Another physician noted that there is no evidence that too many kids are medicated, it just makes good media. Shaffer noted there is a big problem with off-label use of generic drugs and no pharmaceutical industry profit incentive to research the new treatment uses.

All week I’ve been aware of many around me coughing and sneezing with bad winter colds, starting with the man in the seat just behind me on the plane here. Now I’ve caught one too.

Minorities are scared of two groups, shrinks and cops: they can both put you away.

The Surgeon General’s Report on Racial and Ethnic Disparities in Mental Health is due out in February. It has been delayed because, though the science is present, the context was missing.

Cultural competence: skills and abilities to operate in an environment of difference. More than just diversity. Cultural competence emphasizes context and individuality which helps People Who be seen as more than a DSM code. Suggest partnering with primary care providers, who provide 70% of m h services. Carve-in.

Gilberto contrasted narrative, anecdote, story, with science-based input.

Also consider cultural displacement and generational issues

The NAC commended CONTAC for their cultural reach from Appalachia to the southwest.

Russell selectively summarized the Subcommittee proceedings and the recommendations were approved. They expanded the centralized recovery library to include a cultural competence materials library. They also commented on how hard it is to define coercion, the difficulties of accurate data collection in that area, ...

Americans spend over four hours a day watching TV.

Guida. Youth have a suspicion of mental health services and a low regard fo m h professionals. Www.nostigma.org

The Surgeon General’s Conference on Children’s Mental Health developed four principles and eight goals to "promote the recognition of mental health as an essential part of child health."

KEN is hiring a communication consultant to be a liaison between KEN and CMHS to make sure that all the project information and news is posted.

KEN is considering renaming itself.

Subjects suggested for emphasis at the next NAC meeting:

seclusion and restraint; racial and ethnic disparities; co-occurring disorders, streamlining the grant process, community integration.

I misread my itinerary and arrived at the airport two hours late.   I was able to get on other flights and am finishing this report somewhere over Illinois.  I get confused and afraid when I see myself making mistakes like that.   Right now I'm a weary traveler.