National Mental Health Statistics Conference

Washington, DC, May 28 - 31

Joint conference with State Block Grant meeting. Stats is at the Mayflower, a courtly hotel with long elegant lobby and inefficiently gracious floor plan. Weather is warm, muggy. After the flight (2:45 AM alarm; 5 PM registering at the hotel) With colleagues, I walked a mile to the Albert Einstein statue, wonderfully executed so that he looked rumply and inviting, and watched while a high school tour group surrounded him, sat in his lap, for a trip photo.

First familiar consumer/survivor faces: Ting Mintz, Randy Hack, Sharon Yokote, Kevin Fitts; Cindy Hopkins

Wednesday plenaries:

Berry named families before consumers, had invited Satel to present at another SAMHSA meeting this month.

Danforth has been promoted to a branch chief

Arons: accountability

Curie: administration is citizen-directed, results oriented, market-based; data drives dollars; to sustain recovery: jobs, housing, human connections; Curie is good at wrapping his own words and priorities around the SAMHSA mission (the head table - Manderscheid, Danforth, Berry, Arons - took notes of his key phrases as he spoke). There will be an emphasis on co-occurring disorders; spirituality is part of recovery; there will *not* be research (hence research will come from the biologically oriented institutes. S.)

I presented about the history and status of SOCSI. In the same session, Randy Hack described the HI cemetery restoration project. There were about 25 in the room and we were both well received.

Thursday

Stan Eichenauer, MSW Deputy Executive Director, President’s New Freedom Mental Health Commission. Institute of Medicine (IOM) Quality Chasm report: patients should be in charge of their own care. Association of m h administrators ACMHA) is doing the behavioral health implementation/recommendation. Ting Mintz is part of this.

Allen Daniels: IOM report

IOM: health care should be: safe, effective, patient-centered, timely, efficient, equitable.

10 rules: care needs to be based on continuous healing relationships, customized to patient need and value, patient is the source of control, knowledge is shared and information flows freely, decision making is evidence-based, safety is a system priority, transparency is necessary, needs are anticipated, waste is continuously decreased, cooperation among clinicians is a priority.

6 challenges, 4 environmental forces, ...

All flows from the experience of patients and communities. (Note that this does not say consumers and families, it says and communities lumping *all* the other stakeholders together). IOM template should also serve for behavioral health care.

We need to ask consumers what they actually want.

Ting: "survivor in recovery;" we are driven by passion; when we get to the table, the decisions have been made; Ting named the other c/s here at the conference including Jean Campbell, Mike H... , Jeanne Dumont, Paolo - none of whom I’ve yet seen.

Pamela Greenberg: can’t just have parity in name, but equitable access, ... (ignores coercion issue - I spoke with her after; she said no one before had pointed out to her that if it pays for force it isn’t parity, that the word voluntary is not being included in the parity legislation initiatives. <sigh> S.)

Linda Powell, OACMHA ED, oacmha@aol.com, introduced herself and we talked about the older adult agenda, where this new organization should be going, what it’s first steps might be. (I’m on the founding board and have not been active in the last year.)

Plenary: the future:

Richard Ries: "The mental health system should: consider subsidizing onsite psychiatrists in the addiction system; managed care selects for suicidality, and intensive case management has been so successful in keeping SMI persons out of the hospital; low psych / high addiction people now outnumber SMI patients in many mental inpatient settings; most addiction treatment centers do not have onsite psychiatrists; low psych/ high addiction patients with significant depression fall out of outpatient addiction treatment, and often end up in the most expensive level of mental health based treatment inpatient for acute services; onsite psychiatrist services have shown positive effects in addiction treatment (retention and outcomes)

cocaine and alcohol use are two of the four highest risk factors for a suicide attempt

Sharon Carpinello: evidence-based practices (ebp) to support recovery, put a face to recovery - slides and stories about recovery via ACT in New York. Campaign to roll out EBD’s include self help and peer support, and, since 9/11, ptsd. Number of NY State ACT teams is being doubled; ACT is the platform: case management/ treatment + family education + ... + .... Family education, nursing curricula, ... Focus on wellness. One voice is a whisper carried by the wind: many voices are the wind.

Daniel Thomas: Federal government has the authority to force the collection of data on race and ethnicity and linguistics. HHS has been inconsistent in this collection. Unequal Access: IOM looked at potential racial and ethnic disparities on health care outcomes and made some recommendations - 30 page executive summary of 600+ page report available through National Academy of Sciences and on the web. Disparities exist and are associated with the worst outcomes and death. Hence increase awareness that these disparities exist. 14 million Americans are not English-proficient and this inability creates a healthcare barrier. Managed care exaggerates/increases the disparity by disrupting community-based care and displacing culturally familiar providers. (Managed care organizations in North Carolina were excluding African-American physicians. ) Medical training has cultural bias embedded in the curriculum, ie African-Americans are non-compliant therefore exclude treatments that require ongoing compliance; or, African-American women with red hair are prostitutes.

Gail Hutchings, senior advisor to Curie, lead on homelessness and on bioterrorism. Fast track: future now means next week. Psychological impacts of fear, anthrax, bioterrorism. Money might be shifted from existing programs, people who need services, to need areas. Impact of bioterrorism threat on substance abuse. Only two states, CA and TX, have full time disaster planning people. Within 24 hours of 9/11, SAMHSA had sent $ 1 million to NY. Thompson: "we must follow our short term responses with long term commitments." Four planning/funding strategies from SAMHSA re terrorism: science to services; t a templates for terrorism responses, models; assessing the all-hazards plans; infrastructure development in states; site specific assistance.

Consumer/Survivor Caucus

CMHS: Paolo del Vecchio, Iris Hyman, Carole Schauer, Neal Brown; Katsumi, AK; Jean Campbell, MO and COSP; Sheryl, TN; Sharon, HI; Randy, HI; Vickie Cousins; Kevin, OR; Corrinna, PA and NMHCSHC; Carolyn, KY; Jim Simbeck, SD; Jeanne Dumont, Georgia, AR; Ting Mintz, Andrea Cooke, plus eight more women and two men. I could tell from the name tags that many were here for the block grant section of this conference.

Community Action Grants: Leadership Academy one year grants; ID MA VA NC NJ HI MI

Region V meeting was held in Chicago recently. Region VIII is planned in Denver at the end of the summer. All conference scholarship money is now in one contract with a focus on national meetings. Quarterly paper consumer affairs bulletin will now be only email, consumer affairs e-news, no email subscription information provided, call

1 800 789 2647 or send your email address to cmarshal@samhsa.gov.

5 x 5 - 5 % of state mental health funding to consumer operated services by 2005. Started in ACMHA. Kevin Fitts, Ting Mintz, Laura Van Tosh are key consumers involved.

TWIIA (Ticket to Work): 40% of social security rolls are people diagnosed with mental illnesses. Committee, public meetings, next is 22 - 24 August, Ritz Hotel, Pentagon City, DC.

Friday

Town Hall, wrap-up

The session was to be very structured, a moderator, note-taker, and two listeners from the perspectives of children, state and community. The discussion was to be around four themes. I had asked Ron to speak, and was first recognized and I questioned the process itself: I more or less said –

I see a contradiction between two of the ideas I heard this week, between evidence-based practices and patient-centered treatment. Science is about discarding a hypothesis when there is one disproving instance. So an evidence-based approach is not science. The evidence-based research, well, any research, tends to find what it is looking for, and the evidence-based research is looking for provider-defined results, – which may be very different from patient goals. And the anecdotal input from consumers and survivors has not been collected and if we have forced it forward, our stories have too often been discarded as outlier, exceptions, not credible. For instance, (and here I mentioned neuroleptic weight gain, that one might prefer hearing voices to morbid obesity, and ect brain damage overlooked) ... So I suggest, instead of evidence-based practices, how about narrative based practices, a real patient-centered system where the patient sets the wellness goal.

Another consumer, Gene Deegan, stepped up immediately, had prepared remarks expanding on this same theme.

We were drawn back to structure.

Katsumi was promised she could speak later.

But the very first recognized speaker: "my comments don’t fit into the given paradigm" and she was encouraged to proceed, and she too addressed how to make programs consumer-centered.

The moderator again aimed us back to the structure, asked remarks to be recommendations.

Gene interrupted and recommended PAR (participatory action research).

The moderator and Ron conferred again about focus. The facilitator moved around the room.

The next speaker returned to consumer focus.

Next, a family member, emphasizing family involvement, focus on children, funding Federation of Families

Facilitator: working together

Randy Hack: other health concerns

Re data and planning working together (theme of the morning), make data user-friendly

Utah planning council chair commented, is a consumer.

Katusmi: AK not getting fair share of pie

Sharon: how know that are comments are really used in planning, why is public input confidential

Joyce Berry closed the conference, and again put families before consumers <sigh>.   Stressed again what I heard from many that under Administrator Charles Curie, SAMHSA now has defined written priorities and principles to shape its efforts.

Major conclusions, on an overhead, developed by Ron Manderscheid (really a summary of comments input - some I copied from the overhead; some I edited, paraphrased)

1. How to orient EBP’s to reflect a consumer centered focus and individual needs, narrative oriented practices through consumer experiences.

2. How to drive planning from a consumer perspective, e.g. need answers at the consumers’ fingertips: How to make better use of technology.

3. How to increase focus on children’s and families’ concerns?

4. How to increase focus on primary healthcare needs of consumers, eg, screening, etc.

5. Low income families are reluctant to engage in services; need to increase input from this perspective.

6. How to have statistics be part of everything? Develop a common language, glossary

7. All voices need to be reflected in planning and quality improvement; this implies working together.

8. Need more USA Today style data bytes - SG report a model, put a face on data.

9. State legislators need to know what is working and what can be saved by better services.

10. Need a better meeting of micro life and macro concepts: data and planning need to touch individual lives.

11. Need to address regional disparities and intergroup disparities, eg, applying for SAMHSA grants

12. Require states to gather feedback after receiving their block grant report conclusions about improvements.

13. Statistics, data, feedback all needs to be coordinated and transparent.

14. Need to bridge data, planning, consumers, families; implies much better tools for collaboration and relationships.

15. Need to be able to sue data wisely and how to question it. How to turn data into information.

16. Need a plan for the individual child and for the family; systemic change.

17. Need to incorporate well-being and resiliency into all of our paradigms.

18. How to take presentations back to any State Planning Council.

19. Develop training for consumers and families on the use of statistics and federal data.

20. Issue is workforce development: CMHS needs to work with colleges and universities on embedding real recovery philosophy into curriculum.

21. Must reduce discrimination.

22. Highest priority must be working together.

23. Interaction with other systems like housing, transportation, education, invite people from these fields.

Input for turning this into an action agenda to akeme@samhsa.gov, jmorrow@samhsa.gov, cc jberry@samhsa.gov, ronmanders@samhsa.gov

www.peoplewho.org