California Information Management Conference
April 19 - 20, Universal City, CA

Sylvia Caras, PhD

Waiting in the A line to board Southwest for Burbank, I chatted with a travel industry representative concerned about industry ethics, that agencies weren't honoring conference booking agreements with hotels, were booking where they wished.

Across the street is Universal Studios and City Walk and I walked over, didn't pay the $60 admission, did walk through noise and color and food and shops to sample this taste of the film industry. It was April 19, Ben & Jerry's free ice cream day, but Universal had said no, no freebies.

My hotel reservation had been made but not a conference registration so I had an inked in name tag, felt a bit overlooked. Breakfast was breads, cream cheese, butter, berry yogurt, bars, coffee and tea. The meeting started right on time, 250 registered, 30% more than last year, 4 consumer and four family scholarships. Goodwin (CIMH) - MHSA dollars for co-occurring, alcohol and drug programs.

A speaker used the phrase "incentivize," spoke of standards out in draft for defining an electronic health record (EHR).

Ron Manderscheid was the second keynoter and I could barely type fast enough. He spoke of a "vehicle for positive change," noted that it takes 17 years from research to local implementation, that 70% of mental health encounters occur in primary care settings, consumers and families are the core, the foot soldiers of transformation, in 10 years a third of the current mental health staff will have left the field, evidence based practices are undefined, and suggested looking at how to create wrap around community collaboratives.

Mayberg: MHSA is not intended to augment county systems. Probably a year before any IT money will flow. Caution about expectations - 75% range over past three years of what would have been MHSA income.

Refkowitz: the big three - cultural competency, recovery and resilience, how do the clients rate what we've done. Consulted clients about what they want from the IT MHSA money - iPods, cellphones, my own apartment with an ISP and a computer - all so I can be like everyone else, reach out to the world, … and to not have to repeat over and over my medical history, a smart card …

I asked ahead if I could have 3 minutes to speak about MHSA. I drafted this on my laptop, timed it to be sure it was not excessive, purchased a day of internet access, emailed this to my yahoo account, went to the hotel business center, logged on, and printed out these remarks. It was pretty easy to draft given Delphine's work and my rehearsals last week in Los Angeles (I do not like to speak extemporaneously.) I said:

My name is Sylvia Caras.

I'm a person with a psychiatric disability, board chair of the Santa Cruz Client Action Network and board chair of CA Protection and Advocacy.

We all know, here in California, that there is an ongoing tension between policies that are progressive and those that are regressive.

The Mental Health Services Act was voted in as a progressive step forward, part of a transformative mandate from the New Freedom Commission Report.

Two weeks ago, our Department of Mental Health announced a regressive implementation, that Prop 63 funds would be used for forced treatment, involuntary, unconsented interventions.

Protection and Advocacy is outraged. Clients feel betrayed. The trust has been damaged. How can we safely work in coalition and community with secondary stakeholders if we become voiceless? It is not collaboration to ignore the client community.

Our mandate of no increase in involuntary services has been overridden. We join the rallying cry of all people with disabilities - nothing about us without us - no forced treatment. Not one more penny.

The Department is now saying that they haven't yet decided - I say expanded unchosen services shouldn't even be considered. Voluntary services chosen and directed by the client is a principled, ethical, recovery-oriented value. There must be no increase in forced treatment in California.

Data is not value neutral and neither is software. You too are players in this change. Force is failure, and yes, this is your issue too.

My understanding is that Orange, Los Angeles and Yolo are the counties wanting a more authoritarian involuntary system. Please watch your county's plan. The Act mandates 30 days for comment and a local mental health board public hearing. Make sure your plan is what you, and I, voted for.

Refkowitz urged clients to get involved especially in counties urging 1421 funding from MHSA, and assured that his county would only implement the county's will after input and deliberation. He would like to use MHSA monies to get clients off conservatorships. I spoke to him later. He said Carla Jacobs and allies have been coming in large numbers to the stakeholder meetings. CNMHC needs to get more consumers there! I’ve also been in touch with active democrats in Orange County and giving them a heads up to review the plan when it is published. Orange’s PlanToPlan asks for $636,415. Their web site is http://www.ochealthinfo.com/prop63/

I spoke with Steve Mayberg about the clients' damaged trust. He agrees, didn't say how he would be trying to mend that rift. He wants to allow MHSA funds to be spent to get people out of IMD's, for instance, to a lower level of care, or back to their communities. Similarly for people in state hospitals. So he says that would be using MHSA monies for involuntary. And that's why he is consulting attorney's. What he said sounded reasonable but I feel skeptical, want to make sure we are careful here about what is meant.

Steve said that there are four counties pushing 1421: Orange, Los Angeles, Yolo, and Nevada.

He also distanced himself from the O&A appointments - it's the Governor's office, they are still interviewing, Maria had submitted a number of names.

I visited with Paul Cummins at the evening reception. We were very much at cross purposes, not hearing each other at all. He said he liked to help and I asked him what he thought he was doing when he helped. "I don’t think; I just act." So I asked what he felt when he helped. "I don’t feel; I just act." You like to analyze; I help! He was outraged that I noted that his use of worst-case individual scenarios, his roommate’s troubles, was rhetoric. He turned his back on me in disgust: "You called my roommate rhetoric. You called my roommate rhetoric."

I sure didn’t do that very well and have no idea how to have done that any better.

 

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