Subcommittee on Consumer / Survivor Issues

June, 2002, Gaithersberg, MD

Sharon, Jon, Kevin, Paula, Juli, Maria Maceira, Sylvia

Staff: Chris, Paolo, Iris, Carole

Guests: Judi (NEC), Leah (NMHA)

Paolo for Bernie: Director’s Report: New Freedom Mental Health Commission: charge is to review the US mental health service delivery system, public and private, hold regional meetings to gather input. Late October: interim report, unmet needs, barriers, good community care models. Early June: recommendations, immediate improvements with existing resources. (Emphasis on quickly, a band-aid? Sylvia)

S2072, Corzine, Medicaid Intensive Community Mental Treatment Act (ACT, ...)

Ted Searles, new CMHS Deputy Director

Faith Dialogue meeting being planned: Hikmah Gardiner, Dianne Engster c/s leaders involved so far.

Carole Schauer received HHS Secretary’s Distinguished Service Award

Denver regional c/s meeting in the fall.

ADS (Discrimination and Stigma) Center: 1 800 540 0320

CMHS has sponsored around 120 c/s with scholarships to attend national conferences

Priscilla Ridgeway is working on a resilience and recovery white paper.

TA Centers will be refunded through a year from August.

KEN renamed: National Mental Health Information Center, .gov is still being debated. is another agency; is known, is being considered.

Some OEL staff in Homeless branch (the "KEN" staff), some to the SAMHSA level; Paolo, Iris, Carole, Chris are in the CMHS director’s office.

Future funding for Alternatives is not contingent on future funding of the TA Centers.

$5 million RFP out re Mental Health and Aging.

Five members of the NAC are now included: William Beardslee, Dept of Psychiatry, MA; Cynthia Wainscott, Donna Mayeux, LA, Josie Romero, CA; Karina Udall, MD, U of WA, Seattle. Goal is approximately one-half of the Subcommittee will be NAC members and since SOCSI can’t be longer than the full NAC, which is 12, it is likely that we will lose 3 c/s members when this is fully implemented.

Anna Marsh is CSAT Acting Director

ECT, jSOCSI's first fact-finding meeting

Linda Andre, Cindy Hopkins, Linda Logan

Andre: Janus study, gold standard of ECT research, has not been replicated, includes input from recipients. NIMH funds almost all of the ect research. Sackheim has gotten over $10 million. He is connected to a shock machine manufacturer, Mecta. He compares different kinds of ect, doesn’t question ect itself. Research samples not representative, comparable. Sackheim: the question of whether ect causes brain damage is uninteresting and unscientific. Consistent pattern of impairment among ect recipients when results of 2-day neurological tests compared - for instance 30 point IQ point loss.

SURE study: Degree of perceived benefit depended on when the question was asked (immediately after and later) and who was doing the asking.

APA: memory loss and cognitive impairment after ect should be investigated as to mood. (Implication that it is depression, not ect that has caused the problems.)

Cindy Hopkins:

TX: no ect for under 16; ect has to be consented; guardian can consent only in accord with wishes of incompetent person, if those wishes are known, requirement to consent to each and every administration of ect, judges can’t order etc, over 65 needs two more physician signatures and a demonstration of medical necessity.

Juli: Judge order ect on 89 year old woman to cure senility.

Summary: involve neurologists, collect and report data, involve neurologists, ensure choice

Autry walked in, looked at our room, and said "I like the set-up. It really works." Irene, our note taker, seconded how our attention to detail has made a difference. (I felt great about working so hard on our operational guidelines. S.)

Autry: three themes of administration: citizen-centered, results-oriented, market-driven; expects NFMHC to look at how criminal justice, homelessness presage worse outcomes; to look at continuum, including very young kids, older adults; HIV/AIDS. OneSAMHSA. Collaborations with other agencies. Recovery. Community-based. Faith-based. Continuum of care: linking housing and care. I questioned: He said we are looking to take the contingencies out. Tight budgets; mark-ups scheduled for late September. Expects NAC to be a resource for the NFMHC. SAMHSA strategic matrix revised to include "discrimination" instead of stigma alone. No discussions about discontinuing SOCSI, but indeed discussion about how we can best advise NAC and how NAC can best advise NFMHC. Autry: "I will recommend that any time consumers and survivors are involved in any SAMHSA activities, they make a report to SOCSI." Hopes NFMHC will adopt SAMHSA matrix. Recovery, social supports. Broader range of interventions. Evidence-based.

CDC found that a good indicator of depression is asking only two questions: Have you felt sadness that won’t go away for longer than two weeks? Have you experienced enduring loss of enjoyment?

HIPAA will likely cover EAP’s.

Autry stayted through public comment, and then a few minutes after we proceeded to the next agenda item, goal-setting, ...

Curie dropped in: Systems need to be consumer-driven, listen to folks and what they need. We have moved from asylums, to group homes, to CSP, to now, the era of recovery, but he speaks as if recovery is contingent on treatment. I was not comfortable and had the sense that he and I would not define treatment in the same way.  Re "Sally’s" appointment, NAC hears many voices, an advisory board is a table of accountability, not to be afraid of divergent viewpoints, use testimony as a forum. Curie ex-officio to NFMHC, to develop input re Olmstead.  He seemed to me angry that the administration was considered to not support disability human rights issues, he noted the NFI, he was, and seemed, hurried, and he more spoke at us.

He acknowledged receipt of e-mails on SAMHSA's direction. Systems need to be consumer driven,  must ensure that consumers are at tables of influence in policy development, treatment, planning, recovery planning. Focused on what consumers need. If you listen to what people need, move system of mental health into era of recovery, moving out of just community support programs, recognizing mental illness as treatable disease plus community support, state hospital era, asylums (backward history), eras getting shorter because we're learning more. Era of Recovery is about consumers, taking charge of managing their own illness and affairs and life. As a system, we need to be facilitating that. Takes treatment and recovery/rehabilitation. Job, decent place to live, date on the weekends-a life. Need family life, need to be connected, to be part of a community. Consumers have informed us on that, and it's valuable to have the dialogue ongoing. Concern about CMHS National Advisory Board appointment of Dr. Sally Satel (who has written controversial stuff), many voices need to be heard. We cut ourselves off when we cut off any voices.   But anyone appointed should not be construed that what we are trying to do is in wholesale agreement, because we have divergent viewpoints on the

council. Divergent viewpoints must be heard at table of accountability (the Council). Dr. Satel extremely supportive of drop-in centers (Note: I'm told she means professionally directed drop-in centers when she supports this -there will be issues of psychiatric consumer/survivors. People need to ask her questions, need dialogue. Need to move more voices and more consumer voices to the table. More than one consumer voice, and SAMHSA has responsibility to have diversity of professional and consumer, state and local voices at table.  This will move the system forward and impact people with divergent viewpoint, move divergent viewpoints closer together. Raise bar of diversity to uncomfortable level.    President Bush has established MHC with diverse membership, controversy from all political stripes. Dan Fisher on MHC because he is a consumer, although he is also a psychiatrist. Urge connection with him, Mr. Curie appointed ex officio to the Commission to formulate an action plan for ADA and Olmstead to get life in the community. This Administration is not pro forced medication, has not yet been discussed. The Commission focus is to put forth an action plan of what the infrastructure of mental health should look like, not just treatment medical model, club house, vocational, housing. Need treatment to alleviate symptoms, everyone needs individualized approach.

Brock: How Subcommittee best advance? When will we have a chair? Curie: Have an opportunity to give input to the MHC as organized body, submit paper testimony to Commission. CMHS discussion with Dr. Arons, expectation of representation of consumer/survivor viewpoint on CMHS NAC, and also SAMHSA NAC clear consumer presence and viewpoint.

We talked a lot about how to be sure the NFMHC hears the c/s voice and made some plans to have a couple of teleconferences and how to focus for September and January.

NAC recommendations: building on ect presentation, to recommend data collection (we crafted language and I was helping on the flip chart and haven’t captured it) and to again recommend NAC endorsement of the NCD report.

Next SOCSI meeting September 3 - 4.

The meeting has adjourned and I’m sitting in our room while the waiter collects glasses and trash writing these final notes.

Sharon will be presenting our recommendations the to the NAC on Thursday.

At the Joint Councils meetings I picked up the draft SAMHSA strategic plan:

Vision: A place for everyone in the community
Mission: Improving the quality and availability of treatment and prevention services for substance abuse and mental illness.
ACE: Accountability, Capacity, Effectiveness

Also, the Evidence-Based Practices Toolkits, which have had non-transparent c/s involvement, have another $7 million dollars or so to award 4 Statewide centers and 10 implementation grants to disseminate the practices.

(To give me input for future SOCSI meetings, subscribe to Sylvia)