Summary of Dan's testimony the day before:

"My name is Daniel Fisher; I bring multiple perspectives to the commission. I am a person who has recovered from schizophrenia, a psychiatrist, advocate, and researcher.

"I would like to see this commission recommend the transformation of the mental health system to recovery-based services guided by hope, empowerment and maximal involvement of c/s/x's at the federal, state, and local levels in areas of policy, services, training, and research.

" A recovery-based system would embody the recovery principles which have emerged from research and are evidence based which include:

Self determination as articulated in the National Council on Disability Report (2000), "From Privileges to Rights." Which recommends working towards a voluntary community-based system and thus ending the use of force

"Community participation as mandated by the Olmstead Decision and as carried out by people being enabled to live and work outside of institutions.

"Protection of the rights of people labeled with mental illness.

"Consumer-run services and evaluation teams, peer support, self-help

"Understanding that these problems are more psychosocial than medical."

Caveat: these notes are impressionistic and spontaneous and subjective.

New Freedom Mental Health Commission
June 19/20 Ritz Carlton, Pentagon City

Three additional appointees:

Steve Mayberg, CA
Norwood Knight-Rider, OR
Mark Huang

SAMHSA in hosting the meeting and paying for the Commission out of its program budget

Charge: will meet at least six times, 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.

July 1: www.mentalhealthcommisson.gov - electronic input

Commission colors are blue and white.

Large! room, 4 x 7 x 4 x 7 seats at table with 7 staff along the sides. Among Commissioners, I see 4 people of color, 6 women, 11 men, 16 at the table.

Familiar faces: Howard Goldman, Rick Birkel (NAMI ED; there are about to update the web page), Ting Mintz, Judi Chamberlin, Joe Rogers (with written prepared testimony), Laurie Ahern.

Commissioner table name tents have first and last names only, no MD, PhD, state, organization, ...

C-Span is here, two cameras, and Judi and I were sitting right behind Howard as he presented the SGR. Maybe you’ll us <shrug>.

About 26 in the audience at 8 AM; closer to 50 by 11 when public comment started.

I can’t see all the name tags. I’ll note identifying characteristics if I can so you can match speakers to web bios.

Ken Moratsugi, Ass’t SG, introduced Howard Goldman who presented the SGR:

Howard: experience changes the nervous system as well as the nervous system (meds) affecting experience. There is, he emphasized and re-emphasized a material underpinning to mood and behavior. Choice, range of options. "The report does not talk about stigma without mentioning discrimination." (I don’t remember that from my reading <shrug>, and Moratsugi and Satcher almost exclusively talk about stigma, with a token mention of discrimination. S.) Promote recovery. Howard is editing a textbook on psychiatry for medical students and noted how he had added recover to the schizophrenia chapter. (At the break I asked him if he would like c/s reviewers, he shrugged me off at first, Joe was standing there and said I had a PhD, Howard added, and she’s smart, and then said he’d send me some chapters. S.) Outcomes need to be broadened and related to community membership. The SGR had much consumer input (Someone might like to let the Commissioners know about how the c/s community feels out our lack of input to the report and the dismissal of anecdote and first-hand experience as not scientific.) The report Howard described isn’t the same report that I remember reading a few years ago.

Anil G: asked for examples of robust, reasonable, and soft evidence based practices (ebp).

Howard: there’s a range of treatments; the initiative around "so-called" ebp’s does not mean to rule out emerging practices, it’s not one-size-fits-all. There’s an under-supply of scientifically recommended services.

Dan: ebp and research needed on how do people reintegrate into the community. Dan was collegial when he asked Howard a question, used medical jargon, cited a study, and Howard trumped that there’s lots of psychosocial research, there’s ACT research on consumer involvement, literature review needed, research must look at more than symptom reduction.

Yates: reserve to specialist, not (untrained) primary care.

Ginger :Lerner-Wren: judge, deficit of optimism, entry level patient has inadequate understanding of what they are getting or why.

Howard: consumer psycho-education is under-studied.

Style of all the questions is that they are paragraphs, and the answers are pages or chapters.

Report by October 29 on unmet needs, examples of community-based care that have succeeded.

Asian Commissioner: children

Adams: mess in children’s world, we think about sustaining, not recovery. (I gave her a card, offered adult c/s to be mentors, after all *we* are the examples of recovery.)

Yates: children, private, therapist

Ginger: good process

Members have gathered in small groups last night, and subcommittees will report this morning.

Discussion of that input:

Norwood ... , psychiatrists from OR: define terms, what is sed, spmi, even mi, strong and clear about social issues.

Mayberg: systems are about people; people-centered services, children, adult, older-adult, culture, diversity, co-occurring (including other health problems), trauma, ... plus systems issues, plus job, housing, education, ... plus access plus politics of evidence , prevention and early intervention, never lose sight of that this is about people

Yates: add human rights, patient rights

Hogan: we can’t do everything. His comments are very political, sound appeasing to me, and as if he doesn’t want the balance of existing structures and powers changed.

Judi started coughing. Commissioner Robert D, Eli Lilly, got up from his table and brought her water in the audience.

Mayberg: maybe establish an Advisory Panel.

Ginger: experts differ, we must hear all, not pre-select, my sense is she really represents fairness and inclusion

White-haired, white male, Henry: scientific evidence, consensus, have white papers with recommendations prepared, not further studies, ... My sense was a focus on not much changing.

Dan: The vocabulary seems to suggest that recovery follows treatment and this is not necessarily linear, nor cause and effect.

Commissioners will provide their areas of interest to form work groups. White papers might be commissioned.

Public Comment:

Johnson, substance issues

Oaks, not present

Chris Koyanagi, Bazelon: current systems are crisis oriented, more denying than providing care, evidence-based policies as well as ebp.

(Tom Olin is taking photos, wearing a PRESS badge)

Larry Plumlee:

I'm Larry Plumlee, a graduate of Johns Hopkins Medical School and formerly on the faculty there in the Dept. of Psychiatry and Behavioral Sciences.  I've worked in toxicology for the U.S.Public Health Service and EPA.  Today, I represent the Support Coalition International, a coalition of 100  groups of psychiatric  consumers and survivors.  We believe that consumers should have full disclosure about the risks of proposed psychiatric  treatments, and choice from a range of alternatives.  We want consumers to have informed consent, difficult as that may be to provide during a time of crisis.  Many of our members choose drugs, others do not. I'll read you a few abridged lines from Mad in America by Robert Whitaker that illustrate information which patients are not given.  In 1967, NIMH investigators reported, much to their surprise, the patients that had not been treated in hospitals with drugs "were less likely to be rehospitalized than those who received any of the three active phenothiazines."  Four years later, NIMH physicians were back with another disturbing finding.  Relapse rates rose in direct correlation to initial drug dosage, and the no-dosage group had by far the lowest relapse rate.  Only 7 percent of patients who weren't medicated at the start of the study relapsed, compared to 45 percent who were placed on neuroleptics, then withdrawn.  Today we know that the risk of neuroleptics includes significant structural brain change in the size and shape of the brain, as shown on MRI and CT scans.  Patients are not warned about this, and usually, not even about tardive dyskinesia and dystonia. The newer antidepressants of SSRI type carry a signifant likelihood that patients will be worse when they are stopped, and often when tapered, than they were before starting them.  Informed consent about this discontinuation syndrome is usually not being provided to the patient before these drugs are recommended.  So with both the antipsychotics and the antidepressants we see the mental health system recommending drugs which have serious long-term adverse effects which do not contribute to long term healing, and patients not being told about these effects.  It's no wonder that the psychiatric survivor movement is growing.  Thank you very much

Judi: civil rights struggle, disability rights struggle, even a separate m h commission, separates us, you are "about us, without us." You must prove to our community that you are relevant. Focus on services only isn’t good enough. Disconnect between mission and goals. You need to hear from experts who are c/s, disability rights, legal experts, community integration experts. Stigma is not the issue; discrimination is.

Justin Shuladay for Joe, NMHCSHC: Involuntary, coercion, most important issue. Choice, real informed consent. ECT, coercion is always present. OPC ill-advised. ACT is a mental health police force.   The statement was written and I would guess it has already been electronically circulated to you.  Coercion is always present around ECT because consents are not full or informed.

Paul Siefert: IAPSRS, helping live in the community, evidence-based research hasn’t caught up with the current practices in the field.

Ron Thompson: narrow view of mandate, include these experts too: Whitaker, Bambaugh, ...

Linda Andre: Not getting c/s input is bad medicine

Ben Seineke: not present

Jon Avery: it’s all brain disorders, integrated system of care, health care denied because we don’t like some diagnoses, (I think he wants substance included, and he presents substance abuse and addictive disorder a brain disorder.)

Valerie Foud: not present

Barbara Huff: FCMH (Commissioner Adams is a member) All children and families deserve a full range of services so that kids stay at home, in school, out of trouble. "My own daughter medicated anorexia and depression with cocaine and then sold cocaine to support the habit."

John Piacatelli: OACMHA, older adults, suicide rate highest of any age group, dementia is a mental disorder, give us special attention, give us a proportional share of the funding and specialized services, include older consumers.

Laurie Ahearn: human side, great responsibility, you are dealing with people’s lives, people can recover, when people are in another reality because this one is to painful to be in ... Re: ebp. Our lives are the evidence.

Marsha Martin, AIDS, listen to those who have had the experience, act as if you have the new freedom to do things differently. Deinstitutionalize our system of care. (This person is a c/s ally. I had some reading this will contact her.) Rx for change. Participation from all those involved.

Bob Lieberman: kids, OR, psychiatric tx residential program for adolescents.

Brandon Durst: ADD and dyslexia dx,

Valerie Four: personality disorder, borderline disorder.  Families know early signs of these disorders.  Work with us.  Talk to the families.   Include us.  Calculate the burden on families.

Sign-up list was cut-off at these.

(What I learned about good testimony: provide credential, make few points, attach to particular Commissioner or particular Commission charge or vocabulary. Brief and clear. Personalize, but just a little, and carefully.)

Then, added was: Rick Birkel: (how did NAMI get to be the closing commenter?)  Organize a two part report that addresses all the needs and is transparent.  We all agree we would like a broad array of services.  Include how to people direct their own recovery, access protections.  Difficult reality that there are a group of people who have difficulty - how do people with brain-limiting cognition make market place choices?  (This was noted in private conversations as a NAMI rephrasing, an attempt to come to center.  I think we need to deconstruct the assumption that not choosing treatment is a sign of brain limitations, cognition limitations.  That's very dangerous ground.  S.)

Next Commission meeting July 17, 18, 19 DC area.

Representatives of the Commission will take testimony at Alternatives in Atlanta.  (That's supposed to mean more than Dan.   Maybe they could all be encouraged to come and stay.)

Overheard: the make up of the Commission could have been a lot worse and that Curie worked  hard to get as much balance as it has and as much varied representation as it has.

Overheard:  The Commission has been instructed to NOT make any recommendation about forced treatment or involuntary outpatient commitment.   The forces for coercion are too strong.  My sense was that the restriction was driven by TAC.

Mike Hogan promised Judi and others to meet with c/s after this session ends.   Judi invited me to come too.  Present were Hogan, Dan, Laurie, Judi, Joe, Larry Plumlee and me.  Hogan noted that the Commission and the movement have different jobs and that consumers would have substantive participation.  It was suggested that we phrase things so that they affirm programs and services we like, rather than disaffirming, say coercion.  Judi emphasized the NCD report.  (I suggested that Dan create a panel of c/s to review the draft report, comment, if necessary write a minority report.  Hogan seemed to like that idea and if c/s write a minority report to release at the same time as the Commission report, we will get the same media coverage.    Since coercion is our pivot issue (as well as TAC's and NAMI's), if it isn't addressed, ...  I also suggested that if we present recommendations from the IOM position of person-centered care, you rule out force automatically, since force is a care failure and can't be construed as person-centered even for someone with impaired brain cognition.  I think Hogan heard me.  I said how do CMS get to pay for ACT which gets implemented as PACT which is operationalized as involuntary.  Hogan said that was financing and this Commission was about policy.  I said financing was the implementation of policy.  He didn't reply.  Yes, yes, follow the money.   S.)

www.peoplewho.org