Carter Center Symposium on Mental Health Policy:
Because I would need to travel on election day and would miss watching the early evening returns in California, I was reluctant to accept the invitation to this meeting. I decided I should not turn down the opportunity to be here; little did I know I would have more than my fill of watching election returns <smile>.
This conference may have been timed for the day after our election to include strategizing how to work with a new administration. Not. At last year's roll out here of the Surgeon General's m h report the report had been delayed. Also this year, the special report on minorities is delayed, will not be out this week.
The environment at the Carter Center is gracious, muted, collegial, helpful. Busses to and from the hotel, volunteers dressed in red and white vests with umbrellas to shield us from this morning's rain. The chapel where the meeting is held hold 250, is full.
People Who here that I've seen: Russell Pierce (also a rapporteur), Kinike Walker Bermudez (also a presenter), Jacki McKinney, Celia Brown (also a facilitator), Laura Van Tosh, Jay Centifani, Susan Rogers. Laura and Russell were on this Symposium Advisory Panel. I met Gloria Walker, new NAMI board member.
Dr Satcher presented Mrs Carter with the Surgeon General's Medallion. He said millions of children could benefit from treatment, that there is a national suicide prevention strategy coming, that, to my comment, no we couldn't only say discrimination, we needed to help people understand what the word stigma means. But after several people privately agreed with my point about language (www.peoplewho.org/readingroom/caras.stigma.htm) including HHS Deputy Assistant Secretary Delores Parron who connected me to the OCR person implementing Olmstead, and a Community Psychiatrist in Birmingham including People Who in her teaching and training. She and I talked about asking for CMHS help to develop a training module.
During the Q&A, a psychiatrist asked how to handle the anti-psychiatry momentum - it turned out when he spoke later that he was referring to Internet pages that suggest Ritalinizing black babies is a form of eugenics and thus blacks do not trust psychiatrists -- and a Nami member asked how to ensure that only the "appropriate people" testify to Congress - she was allluding to the Congressional Ritalin hearing at which Peter Breggin and others like-minded testified.
Nelba Chavez urged the audience to push beyond the medical model to the holistic.
Mike English is the coordinator of the report that will be coming out and noted the challenge of integrating scientific evidence-based material with the ethnic historical and cultural material, that the upcoming report would be sterile and lacking if only science. (This might be a wedge in which to help him understand about the culture of the c/s movement and how that too needs to be included. S.)
Steven Lopez emphasized the importance of family involvement
Stanley Sue noted how important was shame and loss of face.
Q&A: Asked but not answered, what are the risk factors? the protective factors?
I chatted with a representative from the AADA - she said no, their members don't identify with the c/s movement, that people can recover from anxiety, manage it cognitively and/or with medication.
Alan Pouissant: "suicide is a form or violence" (for me, suicide seemed like a kindness, a sweet and gentle ending to pain I could not endure - the pain was perhaps the violence, but not the try at ending it. S.)
Hotel rooms now charge between .75 and $1.00 for a local call, and sometimes additionally by the minute. I bought a $25.00 net2phone calling card, thinking that perhaps first dialing their free 800 number might be a saving, and certainly a convenience to not need coins. So I tried it for the first time, called Laura Ciprotti, talked perhaps 7 minutes, hung up, decided to call the 800 number again to find out my card balance, was delighted to fund out my balance was now $25.38. I was very tempted to call Laura back and talk some more <grin>.
Today, Thursday morning, the room is half full.
Carl Bell: African Americans and Chinese don't need the same levels of neuroleptics
David Takeuchi: People Who lose place, lose a place to belong
Kinike: language: person-first, shame, discrimination, Nothing About Us Without Us, Platinum rule: treat others as *they* want to be treated
Mohatt: no longer a market for master's level psychologists; rural could use less specialists, more generalists
Nakamura: the disparities of diagnosis and treatment are not because of various prevalences; they are because of various degrees of access. Findings of this new report not yet finished.
I identified myself to Paul Fink, former APA head, and suggested shifting vocabulary to talk about discrimination. "You people are treated like lepers." So we need to talk about stigma. You (that's plural, not me particularly) "present badly because of your illness." We need to keep hospitals because community services have not been put in place. Actually, he said, it's not discrimination, it's prejudice and that is a more accessible concept.
Hernandez: and when you talk about language, don't forget the deaf. Advance directives are choice. Nothing About Us Without Us.
Lillie-Blanton: use the media to get out the message
Ro: tell your personal story; develop trusted relationships; work with the pharmaceutical companies
Mike English: listening has become a key CMHS quality; people speak best on their own behalf; CMHS is *not* one of the respected messengers; focus on opportunities and solutions; flexible to change strategy when better ideas are suggested; giving consumers and families their own voice; working with how HCFA finances; in order to be partners you have to give up your prerogatives and share power.
Q&A: NIMH is developing out reach partners in each state to disseminate information without using the Internet.
Work Groups, Report Out and miscellany: (the charge to the six work groups was to develop suggestions for themselves and for the SG about m h for ethnic minorities and the report that will be coming out)
American Psychiatric Nurses Association is moving into a DC area building with NAMI.
Habitat for Humanity is has a initiative to build houses with people with psychiatric disabilities.
I was asked if we use the concept of "least restrictive treatment" in our c/s advocacy work. The suggestion was that that phrase might be more well known and the concept palatable.
A suggestion made by Cynthia Wainscott was a National Listening Project, to talk to consumers and families about the lacks and needs of ethnic minorities for m h services.
I spoke with Carl Bell who says the scientology web pages are having a negative impact of how much black families will medicate their ADHD-diagnosed kids, ... He said no, he wasn't talking about other anti-psychiatry like David Oaks, that he's talked to David and David listens! But he was saying how come no Ritalin for African-Americans; no ECT - that those in white suburbs use those best practices, but that African-Americans are scared away by what they are finding on the web.
A managed care exec in my work group suggested a Medicaid treatment team protocol. I said PACT? Oh, no he said. Later I talked to him in the main room. On the table in front of him, a NAMI brief case. Again, I said PACT? Oh no that's not funded, well, ... I felt he was being totally totally deceitful.
Friday - Sunday
I'm in Florida. My nephew's wedding is at a club near Pompano Beach, and I am staying there, where there are no tv's and bad radio reception. I am election result deprived!. I read the local paper and found out lots and lots about Florida election irregularities. Ann Loder lives near by and we had a nice telephone visit. I'll be home Monday night and will post this on Tuesday.