Notes: Washington D C: June 2000

National Mental Health Statistics Conference

National Summit

National Mental Health Association

These notes are *not* comprehensive. They include what I made note of:  what I heard at meetings, what I read in the paper and saw on the news, conversations I had. They are long, written in the order I became aware of the information and not reorganized. There are lots of URL's interspersed, the sort I send to iris, that I discovered during the meetings. I hope you'll check out some of them. I've exchanged my netcom account for DSL and no longer expect to access e mail or post notes when not at home. Instead I will keep a journal like this and send you its URL.

I read this on the plane to Washington:

SAMHSA Newsletter, Fall 1999 "There is a growing consensus that the role of violence ... has received too little attention. ... Instead of considering trauma as an independent and sometimes causative factor, treatment providers in the fields of mental health and substance abuse have traditionally focused on ameliorating the symptoms. ... Practitioners have frequently failed to recognize that symptoms such as emotional withdrawal, dissociation, or risk-taking may actually be mechanisms for coping with distress caused by trauma. ... Childhood sexual abuse may also contribute to later mental and addictive problems. ... The experience of trauma from trusted intimates, such as family members and friends, complicates ... prevention efforts." p 3. "Trauma victims ... may exhibit symptoms that ... 'very much mimic symptoms of schizophrenia or severe depression.' But a history of trauma, even painful feelings or behaviors relating to the experience, do not necessarily indicate that a woman has a pervasive, deep-seated mental disorder." p 6

Action?: Could we make abuse and trauma prevention a project we could all get behind? Could the various consumer/user/ex-patient/advocacy groups work towards this together?

National Mental Health Statistics Conference

People Who I've seen so far that you might know:

Linda Andre, Gayle Bluebird, Jean Campbell, Judi Chamberlin, Paolo del Vecchio, Kevin Fitts, Randy Hack, Katsumi Keniston, Ann Loder, Ruth Ralph, Susan Rogers, Andrea Stephenson

Quote on the cover of my hotel room Cup of Soup: "Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things connect" Chief Seattle, 1854

Notable: In his opening remarks, Bernie Arons used the phrase "people with psychiatric disability."

There is about to be a national media campaign stemming from the White House Conference on Mental Health. This summer there will be a Surgeon General's Report follow-up on how race and culture affect access and then a second report on the elderly.

Judi was the conference keynote kickoff and presented the ten findings of the NCD report. www.ncd.gov

Jean Campbell asked whether out-patient commitment was, in fact, *less* restrictive and noted that *less* must be from the viewpoint of the one being restricted, the patient, not the one doing the restricting, the provider.

There were many people presenting on using databases and the Internet, this is a data conference, and half a dozen speaking about Internet advocacy. We've come a very long way!   Katsumi demo'ed the Alaska Consumer Web and spoke compellingly of her personal experiences of exclusion as a minority.  Linda and Susan presented on the SGR ect campaign and Michael Allen and Tammy Seltzer talked about using lists and pages to combat opc, develop an Olmstead amicus brief, react quickly and effectively to legislative surprises, and how Bazelon has become more public and accountable because of the use of the Internet.  Susan distributed a printout from www.onenw.org/toolkit/modestproposal.htm describing a strategy for effective online networking.  People noted how much time e mail uses up.  I led a discussion about Technology and Advocacy, wanting to get some direction for our work here.  I heard a need for computers for consumers, Internet access where ISP calls are not free and local, and guidance in how to wade through web information and sites with unfriendly designs to find what one wants in an quick and easy way, web navigation and search tips.  An 800 number that either was an ISP or pointed to local ISP's was suggested (this is something KEN could do for us).   Problems were information glut and overload, hardware costs, phone costs, badly designed web sites.  While policy advocacy attracts, and we work together effectively on specific and immediate actions, it breaks down and there were not ideas of how to make the consumer movement work better overall. In summary, we want access now! And a friendly portal.

Action?: Create a coalition of consumers, families, and policy advocates for an unmet need initiative for computers and Internet access. We would need to explain how this program would have a total systems impact. If Gore is elected we would have a good chance of success. A vendor I chatted with suggested convening consumers for input on what data People Who wanted from management information systems. Judi made the parallel to our involvement in research where our voice has gone from nil to strong.

Jean Campbell noted her research goal of ensuring that consumers are included in the administration, design, implementation and analysis of all projects during her COSP presentation. She will make her presentation available at the COSP site www.cstprogram.org

CMHS hosted a consumer caucus: Russell Pierce, Nebraska, is the new consumer appointee on the CMHS National Advisory Council. While transporting in handcuffs is restraint, it is not included in the new restraint and seclusion regulations. (Is this an advocacy issue to bring forward? In Santa Cruz, where I live, the only pscyh input ward requires handcuffs when police transport.). Laura van Tosh asked Paolo several political and strategy questions and then left. CMHS will hold a Regional Meeting for consumers in AZ, CA, HI, NV, and the Pacific Islands, in August, in San Francisco. There are five new fora on KEN www.mentalhealth.org : Older Adults, Consumer/Survivor, Children and Adolescents, Employment, and Rights. Carole Schauer from CMHS will participate regularly in the Rights forum.  Health and Human Services is proactive re Olmstead implementation and is urging states for plans to move people out of institutions. Contact your own PAIMI contractor to help this process accelerate. Paul Stavis who holds the TAC chair at George Washington University spoke on "A new form of contractual advance directive: 'The Nexum'" (I apologize; I didn't have the strength to go and listen. I hope someone will provide a copy of this. I wonder how he addresses the decisionally-impaired signing a binding contract.)

"News accounts of drug studies often focus much more on the benefits than the risks of medicines and may provide readers with a distorted picture as a result, researchers said." Wall Street Journal, June 1, 2000, B2

Suggested outcomes questions: What helps? What hurts?

There is a rising suicide rate in Australia for young adults.

AZ is beginning to ask recovery questions along with the Consumer Survey

Action: CMHS wants full Internet implementation for mental health centers. People Who should be sure that as this project starts, that the drop-ins and providers are also wired and there is e mail and web access for us too.

Alert: In mid-June, the NAMI web site will have forms for feedback on encounters and will develop this material for outcomes standards. They are willing to take the Consumer Survey outcome model.

Resources have been allocated for the MHSIP Regional Groups for the rest of 2000 and for 2001. www.psychwatch.com is providing online employment related resources for professionals and students. I suggested that since some m h jobs are now asking for consumer experience he make that an area that site visitors could search for. He didn't seem to understand what I was saying. Anyone want to pursue this?

There's a news bit today about rewiring the brains of those who've had strokes by immobilizing the working side of the body so that the immobile side is forced to come into use. Large mobility increases, even on people whose strokes were years ago. If we have brain diseases, is there an analog to the brains of People Who?

Implementation of HIPAA (Health Insurance Portability Accountability Act) is establishing standard national identifiers and data standards. www.wpc_edi.com www.cdc.gov/nchs/otheract/phdsc/phdsc.htm To participate in the discussion, mail listserv@list.nih.gov the message subscribe ph-consortium-l <your name> Public health and research need to speak with one voice

Globally there is a high level of interest in mental health in the world health area (7 April is World Health Day; 2001 is mental health; 2001 World Health Report is on m h; 2001 World Health Assembly in on m h; US SGR, ...)

Carrie Kaufmann: Supported employment works - careers not jobs, work is a core value, abilities before deficits. Segregated enclaves for smi are declining in popularity in young adults. Outpatient services and self-management will replace day treatment. We are in a telecosm. We are having to refight the language battle.  People under 25 face better outcomes for managing psychiatric disabilities.

Randy Hack provided an overview/introduction to the consumer movement and consumer values.

The federal work force is graying. Only five percent of employees are under 29.

2001 is the 50th anniversary of this Statistics conference and the 25th anniversary of MHSIP. Theme suggestions and celebration ideas are invited. rmanders@samhsa.gov

Carf  Rehabilitation Accreditation Commission www.carf.org

According to Patricia Schroeder, in the 50's/60's, birth control research was funded by an heiress married to a man with mental illness and she didn't want to reproduce his illness. Source: TV, June 3

One evening there was an extraordinary hail and rain storm that doused, and cooled down, DC.

I took Amtrak to Boston for the weekend to visit my sister who just moved there and talked colors schemes and moved furniture. A nice break <smile>.

At the train station I woman spoke to me: "I've just gotten out of the hospital - see my id bracelet - they gave me meds to take with food - I have no money for food.."

National Summit 100 - 200 gathered for the Summit recap of last year's work. A webcast of Sally Zinman's keynote, notes of what presenters and comments, and other material will be reported out at www.mhselfhelp.org and I will only comment on a small part of the day. Technology was woven throughout; we need to use the Internet to match the opposition's funding; The Clearinghouse has a tech handout; MHASP has a tech staff expert; it delighted me to see the tech pervasiveness and the acknowledgment of the work we've seeded here.

summit.jpg (181577 bytes)

Sally Zinman: Consider how People Who having jobs in they system changed "the movement." CT: client-empowerment outreach teams. NAMI scapegoats us for society's violence in order to pass forced treatment laws. We are now, quoting King, "unified and focused."

Yvette Sangster: integrate our parallel community into the larger community

Ed Knight: the "inner terror" of his experiences; how cognitive reframing helps; there are organizers and dis-organizers - don't disagree with the dis-organizers be friendly.

Marie Verna: We are creating a National Consumer Organization; National Desk so that we are who to call for input.

Bob Bernstein: Homelessness is not a symptom of schizophrenia; it's a symptom of neglect. Kendra's Law has polluted the entire mental health service system.

Justin Dart: (Susan Rogers will be putting all his remarks on the web.) "No forced treatment ever." Empowerment society - real rights for all. "Love empowers a thousand times more than any drug." "The community of people with psychiatric disabilities and psychiatric survivors is by far the largest part of the disability community."

Clarke Ross: NAMI receives its pharmaceutical dollars through a foundation and then distributes it to its projects. (I think the foundation does not have a public disclosure obligation and this is the way the NAMI policy to not disclose sources of support is implemented. S.)

Bernie: CMHS is planning more mini-grants. These are smaller amounts and have a simplified application process.

One of the People Who present is developing his web site: www.shoppingmallpc.com and would like folks to visit.

New York City Voices: A Consumer Journal for Mental Health Advocacy - editors@newyorkcityvoices.com

Voice Lessons Consulting: dedicated to enhancing consumer voice within the Medicaid Mental Health System  -- Mjadwisiak@aol.com

"The pharmaceutical industry is the most successful industry in the world." They are strong and well-financed. Sen Bob Dorgan, D, ND. C-Span

National Mental Health Association

The woman next to me at the Legislative Briefing was wearing perfume and I became very irritable and reacted strongly to some things I heard that I didn't much like. It was interesting to me to watch my calmness disappear when exposed to this allergen, and I learned a lesson about self-management -- I left the room <smile>. NMHA's new government lobbyist Ralph Ibsen spoke about "the mentally ill" and "loved ones" and I felt betrayed. Others were aware of the gaffes and I've been promised he will be better oriented to the issues of People Who before he starts lobbying for us. I had a long talk with Rhonda Bruckner about setting an NMHA Older Adult action agenda, and she patiently listened to me crankiness about what Ibsen had said. He was invited to the Consumer Caucus, but didn't come.

An NMHA tradition is their Media Awards luncheon. Many of the awardees revealed that they had personal experience with mental illness, occasionally themselves, more often as a family member. So we have our work cut out to try to educate about different ways to look at what they themselves have experienced. Daryl Perch, Hartford Courant editorialist has a daughter Robin, now 30, who had a breakdown when 17. Amy Nutt, Newark Star_Ledger, "is bipolar" and was helped, overall, by etc. Abigail Trafford, Washington Post, had a mother who died in her mid 50's after a long time "off" and a brother with autism and mental retardation. They showed clips of the winning stories. One was a hidden camera subduing an inpatient woman. It was too familiar and I asked the person sitting next to me to hold my hand for a while until I could put the memories away. There was a workshop afterward with some of the writers and I suggested using shame and discrimination and prejudice and complimented the people first language some used and asked them to stop characterizing my experience as "suffering" and to not write about "the homeless" and "the mentally ill." A consumer in the audience contradicted, said I was detouring the meeting, and that "words don't matter." <gulp>. One reporter had been invited to a provider "internship" where she shadowed staff for several days as they did their job. I think we could work out how to do this at a consumer-operated program and we might be able to reframe some perspectives. The reporters said that the word "consumer" is jargon, not understood, and that to reach the general public we should say something like "people with mental illness."

There's good material on www.uiowa.edu/~lhpdc/work/States/ - Comprehensive Person-Centered State Work Incentive Initiatives: A Resource Center for Developing & Implementing Medicaid Buy In Programs and Related Employment Initiatives for Persons with Disabilities.

There were exhibitor displays, mostly literature, and one from a VR related organization that gave away a yoyo that I couldn't make work. It seemed an apt example of rehab services. http://rsvp.icdi.wvu.edu from benefits to employment _ about SSI/SSDI, ...

I attended an advocacy primer: you need the coalition - organize around one bill/issue; get to know your legislators as individuals, get to know them well, and their staff; things happen in the halls, you need to be there; have available an issue white paper with accurate data and citations, a bullet page, a press release. Establish a 501 c 4 PAC connected to your 501 c 3 to pay the administrative costs of political activity. Do People Who need a PAC? Is this something we should do? www.clpi.org "Politics is the most efficient means to social change."

Coalition building via interest based negotiation. Use not a project director but a facilitator who maintains neutrality, confidentiality, safety, and stakeholder ownership.

Bob Hiltner, CO, attended the BU Internet Train the Trainers two years ago and is designing a web site. He showed me the careful and comprehensive plan he has created.

Lots of material from NIMH, and I think People Who might do well to get better connected there: www.nimh.nih.gov    See - www.nimh.gov/publist/puborder.cfm - I took a few of the little booklets home and haven't yet reviewed them. I'm interested in how they differ from what CMHS produces, since people I know are better connected to CMHS. In his remarks, Steve Hyman walled off science in a way that sounded to me arrogant _ he said he doesn't ask consumers about molecular biology, for instance, and separated the general public from the academic scientific members and the bureaucratic government members of the advisory council. NIMH research is shifting direction to functional assessments _ work and school rather than symptom reduction. "Why ask questions just because we can answer them?" NIMH Townhall meeting: Suicide is the 9th cause of death in developed countries. In US, 90% of suicides have a previous mental or substance disorder. Purchase of firearms is highly related to subsequent suicide. Clinical tries have excluded suicidal subjects. Suicide Research Consortium. Mental health is on a roll. "When behavior improved, outcomes from behavior therapy or medication are the same." Richard Nakamura’s grandfather suicided and his father had bipolar disorder.

www.sanonymous.org is the web site of an NMHA project Schizophrenics Anonymous. There is also a chat at www.schizophrenia.com Six recovery steps: forgive self and others, reject misconceptions, acknowledge spiritual values, make other affirmative efforts.

United Way won't fund if "advocacy" is in a mission, so change the language to "education" and "support." Vision Councils are the newest management paradigm. Funding is issue based. Non_profits are encouraged to merge into larger units. Mike English, CMHS, talks about himself in the third person. He advises to describe research in language the customer understands. Community consensus is needed to enact new practices. www.ncstac.org - web site for NMHA consumer-supporter grant. NAMI is using theirs to spread PACT. Someone called it the Program for Aggressive Coercive Treatment.

About 35 attended the consumer caucus. I was impressed overall with the number of consumers at the conference, maybe 60 (there were 30 scholarship recipients).

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One of the exhibits was an experimental implant to treat clinical depression. Cyberonics is the manufacturer, probably www.cyberonics.com .

I'm finishing this aloft, flying home to California.