NAC C/S Subcommittee Notes - September, 00 and photos (slow load)

(I'm typing on the plane.)

National Advisory Council Subcommittee on Consumer/Survivor Issues

Public Law 102-321, July 10, 1992, established the CMHS NAC.   By law, it has nine appointed members from the health disciplines and three from the general public.    Terms are four years.  Its job is to review grants, contracts and cooperative agreements and to make recommendations about CMHS activities.  The Council is not a Board of Directors.  It does not run or direct CMHS, set policies or make decisions.   Subcommittees never have any legal standing on their own and their sole role is to expedite Council business by bringing advice, recommendations, etc. to the full Council.   The Council then may or may not accept these recommendations.  Council meetings may not be conducted in the absence of a Federal official, have most sessions open and public, minutes are FOIA available, run by Robert's Rules, usually meet in DC area, have an open public hearing as part of their meetings, have open committee meetings without public participation.  Members are Special Government Employees when they are attending and may not lobby but are private persons on their own time.  Councils are most effective when they focus on "the doable" and those matters most related to their expertise.  -- all this information from briefing materials we were provided.

September 6-7, 2000

Location: Doubletree Inn, Rockville MD, nearest hotel and walking distance to CMHS offices in the Parklawn Building.  Doubletree greets checking-in guests with a warm chocolate chip cookie.

Present: Jon Brock, Sylvia Caras, Carrie Kaufmann, Juli Lawrence, Donna Preston, Sharon Yokote, Maria Mar by phone, and Kevin Fitts by phone on day two.  Chair, Russell Pierce.  Frank Burgmann.  Paolo del Vecchio, Iris Hyman, Carole Schauer, Risa Fox.  Note taker: Kate Mulligan.  Logistics: Renee Woodland, KRA  Guest Maggie Schei-Lurie, Lainie ?, Juli's Mom

Anna Marsh, Acting  CMHS Deputy Director welcomed us and won me by saying that Judi Chamberlin's On Our Own changed her life.  Her remarks.

Paolo and Frank Burgmann, former NAC consumer member and chair of the Planning Group explained that the subcommittee concept was first presented to the NAC in May of 1998, that there were 15 organizations invited to be represented in the Planning Group which developed the nominations package and selection criteria and made the choices, that there were 100 applications.

Nelba Chavez came by to welcome us and say hello.  She will be retiring from SAMHSA by the beginning of next year.  There will be a SAMHSA Women's Conference, the third, in June, in Orlando.

Russell set a warm friendly tone, kept us focused and on task, elevated us with some wonderful quotes, relaxed us with humor.  We started with personal introductions and I was deeply moved by what people have been though and our resilience.  I was especially stuck by how many of us had been told that our recommended treatment was tobe placed, for the rest of our lives, in institutions!  And that are families didn't comply.  

We spent time working out operations, decided to follow the guidelines of the NAC itself, to use Robert's Rules (with consensus preferred), to use an e mail list somewhat (but Sharon doesn't have e mail yet and Russell doesn't have a home computer yet), minutes are taken by a professional note-taker and will be made available to you after subcommittee approval at the next meeting, meetings are open and public, clarified staff roles (and agreed to not over-burden <smile>), agreed to fill vacancies of unexpired terms by appointment, that members must wait two years after completion of a full three year term to reapply, that short-term members may reapply, selected by a double random method for three year terms: Kevin, Cindy, Juli; for two year terms, Carrie, Maria, Donna; for one year terms: Jon, Sylvia, Sharon, asked staff for time-line guidance about how to schedule the annual selection process and agreed that it would be done by teleconference, set our meetings to coincide with the NAC, to generally be the Tuesday/Wednesday preceding the Thursday/Friday NAC September, May and January meetings, to use a consent agenda for meetings and routine business, to set a quorum at 6.   The Chair has no vote.   At about 4:45 we turned our attention to possible recommendations to the NAC, brainstormed a big list, agreed that strategically we wanted our first suggestions to be endorsed, converged on recommending people-first language, amending the word "stigma," when used to be "discrimination and stigma" and recommending c/s research on the movement and on resilience.  You will read the exact wordings and more of the discussion when you see the minutes; I am highlighting what I can.  Jon Brock and Paolo worked together way overtime to get the wordings clear and to turn this into a printed document for presentation the next day to the NAC.  Russell used the phrases: "democratize public policy" "environments of difference", made the connections to civil rights.     Some of us went to dinner at a nearby Italian restaurant with huge portions of delicious food.

The second day of the subcommittee overlapped with the first day of the NAC meeting and since Russell was there, I acted as Chair.  Bernie came to greet us and then went to the NAC meeting and we spent several hours receiving an orientation to CMHS in the context of DHHS and the three government branches that Paolo had organized for us.     Half a dozen CMHS staff explained their Divisions and their work.  

CMHS provides support for direct services, knowledge development to improve service quality, information exchange.  The subcommittee is to be the "eyes and ears" of CMHS.  CMHS has about 120 staff and it takes about two years for an idea to move from concept to implementation.   (About this time I became more sharply aware of how careful and strategic we would have to be in moving c/s issues and values forward and how patient.)  I learned a new acronym.  To match NASMHPD, there is NASSAD: National Ass'n of State Substance Abuse Directors.  Mike English explained the Knowledge Development Application (KDA) cycle - input, study, synthesize, disseminate, develop applications, action.  He gave examples of fostering jail diversions (he didn't say, but I thought, about mental health courts), and of increasing ACT programs until they are pervasive.  He suggested we give input about this through Paolo, but I suggest writing him directly and copying Paolo.  There is a Women and Violence initiative - contact  A national Hispanic mental health organization is forming.  Gilberto has been involved.  P&A reports an increase in law suits.  An exhaustive survey of self-help organizations is about to start.  Judi was credited again by Ingrid Goldstrom when she reported about the Statistics and Analysis Branch launching of the self-help survey that Judi first suggested to NIMH.  

We broke for lunch, reconvened in the lobby, were driven to Parklawn, went through Federal security and got a visitor's badge, and were led by Gilberto through corridors and down two floors to the conference room, large, comfortable decorated with adequate institutional colors and furniture.  There were 18 around the table include staff, and five in the audience plus the subcommittee, and more wandered in, including Laura Van Tosh at the very end.  Anna Marsh chaired; Bernie sat beside her.  Gilberto and Carrie spoke during Public Comment.  Gilberto noted that Contac has opened a Western States office, is doing outreach in the Western states, and is providing materials in Spanish.  Carrie spoke about a new Public Health Advocate organization.  Nelba spoke, said this would be her last meeting, was appreciated.  She noted the "needs of the mentally ill" that we have consumer-operated programs and ACT, reminded of the tobacco SG Report and here we are re smoking and left us wondering what our mental health SGR would have created a decade hence, she tied that to the WHO 2001 theme of mental health.  Then a break.  By now the NAC was demystified.   The group seemed collegial and relaxed.  Bernie made some comments about how when the NAC would schedule an issue for a presentation, it would also be, in advance, on the agenda of the subcommittee so that the c/s point of view would be part of the presentation.  (Since the subcommittee only meets for two days, it will be a challenge to balance the requests from CMHS with what we ourselves see as priorities and want to bring forward.)  The subcommittee was on the agenda, Russell described what we had done so far, expressed our appreciations to the NAC for our establishment and to the Planning Group for a job well done, and put forward our three recommendations.   Cynthia Wainscott (GA MHA) immediately noted that our first two recommendations had no cost and were easy to implement and that she was impressed with their "can do" quality and moved they be recommended.  She noted that she used the phrase "discrimination and prejudice," that legislators and media don't know what stigma means, ...     Bernie explained what stigma means, Russell asked me to explain more, I said briefly what I had written in the Real Shame essay and offered to send the URL to the NAC.  Anna said she had asked Bernie to explain person-first language and Carrie explained more to the group, the disability links, how funded researchers see us as our diagnosis, the discussion moved to training m h professionals, especially psychiatrists, how they resisted having People Who come to speak to them.  I noted that WY has hospital psychiatrists experience the process of restrains, the process of seclusion, offers the opportunity to experience 72 hour holds to the citizenry, and Carrie suggested that part of psychiatrist training, since they now have to keep signing off on seclusion and restraint, would be to experience it.  Anna reined in the discussion, the subcommittee will consider training and perhaps make some recommendations (I thought of requiring Principal Investigators to demonstrate some exposure to c/s values and experience) and the motion was repeated and voted to be adopted.  The discussion moved to the research/resilience proposal, and again, the NAC members gave us more than we'd suggested.  Josie noted that consumers must be in critical mass on committees, Cynthia noted these are really civil rights issues, someone suggested the subcommittee create a road show and present to the varying accreditation committees, Bernie mentioned CMHS had scheduled several professional:consumer dialogues (I thought that when the dialogues are discrete, as these have been, that the consumers don't have the time to bond and become a unified team and that a road show would be smoother and more effective and less easy to dismiss.), Eric Getka expanded our request to c/s at all levels of planning, evaluation, ...  They spoke of the need for data collection and Juli had already noted the lack of ect data so the way is paved to propose that ect stats be gathered.   (The exact wording of what they passed will be in their minutes which will be public after they approve them at their January meeting; I couldn't keep up;    by this time I have to say I was aghast.)  All this support was extraordinary.   And I realized what allies consumer/survivors have in people from other marginalized groups.  They immediately "got" that stigma was double-speak for discrimination.  And I credit Nelba Chavez with insisting on diversity at SAMHSA.   So  we are benefiting from that leadership.  I was so amazed at what happened and sorely missed that the subcommittee wasn't going to again today meet as a group.  I wanted us to debrief and dissect and reinforce what for me seemed like such an extraordinary success.  Anyhow, the NAC meeting adjourned 'til the next day, some of us walked back to the Doubletree, some waited for a ride, some went upstairs to see Paolo's office.  We will meet by teleconference to set the January agenda and to organize ourselves to give input for the now beginning next TA cycle.

I remembered when I first read NAC minutes I counted the number of time Joel Slack's comments were noted and the number of times "consumer" was mentioned - not many.    These minutes will be very different <grin>. 

I'm sitting on the floor of the Dallas airport, plugged into a wall electric outlet, waiting for a plane repair/replacement.  Yesterday evening I was feeling very cranky and pressured and after arranging and typing my notes I felt much better.  I realized that having too many disorganized to-do things reminded me of a time when I was high, had lots of ideas, and couldn't get anything finished.  The connection to the old memory was the cause of the overly pressured need to get caught up.   And making that connection may make the trigger less potent.

I was stuck this week by the use of the word "real," - the Surgeon General says mental illness is real, I say our shame is real, a tv commentator spoke of the Survivor and other voyeur shows as "real reality" and what came to the forefront in my mind was the Buddhist idea that this is all illusion.

American provided a replacement plane; we arrived in San Jose three hours late.   My seat mate has recorded some Star Trek issues on a CD and is watching them on his large screen laptop with noise reduction headphones.  He has an extra jack and invited me to plug in later.  I am grinning.  His invitation seems such a modern statement.  I am going to type for a while and watch his screen without sound.

Friday the NAC looked at juvenile concerns.  There were about 30 in the audience, lots of CMHS staff, and 20 at the conference table, including 11 NAC members.  There is a significant overlap of risk factors between mental illness and delinquency.   Russell asked what were the resiliency factors.  90% of youth reception/diagnostic centers and youth residential treatment facilities offer psycho-pharmaceutical medication.    (Source Mental Health, US 2000)  See materials at   They also heard a presentation on promotion and prevention and considered convening a national work group.   AU is the leader in this area.  Prevention is defined as an intervention that prevents onset, and can be expanded to include prevention of relapse, prevention of a co-morbid condition, delay of onset.  Now in LA, they are delaying onset by medicating pre-schizophrenic youth.  They are thinking of first year college pre-interventions.  I felt uncomfortable during the discussion.  I think we need to clarify what we are preventing and Russell spoke to this.  Cultural factors of language, attitude, family can be preventive.  For some cultures, "acculturation and assimilation is dangerous to our mental health."   Managed care preventive interventions:    One presenter referred to something as "a little loony;" one council member described "a schizophrenic" management style. 

NAC May, 2000 minutes: Coming - supplement to the SGR: Mental Health: Race, Ethnicity and Culture.  Asian American Pacific Islander initiative.  100,000 children under age four who are medicated for AHD but not treated by child psychiatrists.    Vermont is the only state developing a system for early childhood by linking domestic violence, substance abuse, mental health, and early childhood services into state and community planning.  Mike English: ACT is an exemplary practice, "implementation of PACT in Berkeley, where the consensus-building engagement process has become a way of doing business" ... PACT model for Hispanic-Americans in WY

Once approved, NAC minutes should be at KEN.

CMHS May 9 2000 Director's Report does not list any consumer meetings in the short list of audiences Bernie addressed.  (I know he speaks to consumer/survivor meetings, but the report writer didn't think to highlight any.  S.)

June 99 NAC minutes reflect Public Comment from Joe Rogers, Larry Belcher, Dan Fisher, Laura Van Tosh

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