[OCSC-news] OCSC-news Digest, Vol 3, Issue 1

Rick Snook dwellintheheart at yahoo.com
Fri Apr 11 14:31:18 PDT 2008 

A little while ago I had a chance to talk with Karl R. at my house- he's semi-retired from Oregon AMH- and brought up the hospital issue. He said, "Well, this seems to have way too much momentum for us to do anything about it at this point." I said,"You and I both know better. There is no possible excuse for this- the state has learned this lesson before." (Karl was instrumental in the downsizing and eventual closure of the state's large DD institution- "Fairview Hospital and Training Center". The same arguments were made. Some people just had to be kept in such a place. The court mandates require it. We can't serve these people in the community. You know the drill- it's the same now as then. Both Karl and I had a lot to do with proving all of these things wrong.) I said, "What did you think of when you heard about the Federal inspection fiasco at the Sate Hospital- Deja-Vu?" (the beginning of the end of Fairview was a federal inspection that ended up
 de-funding the institution for nearly a year, creating a major state funding crisis. I was at Fairview the week of the inspection and was sitting in a resident cafe building when Karl came in with the federal report and a big grin on his face.) Karl said, "Well, there may be some things creeping forward through the attorney general's office that could create a similar scenario soon."

A few things happened as a result of the Fairview closure other than the elimination of a great evil (believe me, Fairview was a great evil):
The people who came out into the community were served at rates far and above those available to people who had not been institutionalized. A back-log waitlist of 5000 disabled people (folks who had stayed in the community, many at least as disabled as those leaving Fairview were outraged. The waitlist was a dead end. The rate of people being added far outstripped the number of people leaving the list. The only way you could get new services was if every family member who could care for you died. Even then you couldn't get the level of services being given to the former Fairview residents.The waitlist people sued the state- called the "Staley Lawsuit"- and won; resulting in the "Staley Settlement". (I was instrumental in implementing the Staley Settlement when I created the first new self-directed supports brokerage to meet the demand for services- Inclusion Inc.)The settlement demanded that everyone be served- no exceptions- and that the mode of service
 was to be self-directed supports. (I'm sure that Karl had a hand in that, too- he's a really great guy). The waitlist was abolished. Down the road the bureaucracy found ways to limit the the self-directed elements of the program but it's still a national model for best practice. Real self-determination throws pies in the face of any and all bureaucracies. It is the true revolution that is needed in all social services. Still, it is now a fact that everyone in the state with a developmental disability has access to $9000 or more per year for services that they select through person centered planning. (No coincidence that Karl was a big part of creating Oregon's Mental Health Brokerage- Empowerment Initiatives- still the only program of it's kind in the country. But EI is extremely small, can only serve a small handful of people annually, the funding is precarious and amounts to a token gesture on the part of the state.)

Maybe the state's real nightmare is- what if the same thing happens in mental health? What if we demand self-directed services for all? What if we demand real parity?

A more important question in my mind is, "Why are we still so far behind as a consumer movement? Why are we still licking the crumbs from the table of social services?"

One answer is that we have a history of not working together effectively. Tell me if I'm wrong. I can see no other reason for us to be in the pathetic situation of being at least 20 years behind developmental disabilities advocates. (Oh, you can bring up stigma- certainly we are not seen in as warm and fuzzy a light as someone with a developmental disability- but again- how long are we going to blame others for where we're at. The challenge is not just at the doorstep of the State. The challenge is and has been at our own doorstep. We need to stop our petty squabbles and unite to demand self-determination and substantial access to support for everyone that has a mental health diagnosis. And we have to actively and aggressively work to change our public face. There is no excuse.

Years ago when I was first in therapy I learned and remembered the damage that was done to me in childhood and how that has effected my life. But I am 53 years old now and I am so past blaming my poor, ancient, 88 year old mom for my problems. I am responsible for making my life into what I want it to be. To the extent that I ruminate on my childhood as the cause of all my problems today I can not move forward. Responsibility, intention and determination are what I need to move forward.

Here we are stuck in a decrepit throw-back system that crumbles even as it tries to provide meager services to a few in need. It doesn't need fixing- it needs to be burned to the ground. In a recent meeting David Oaks used the term non-violent revolution. A revolution does not "tinker" with the old system.

What are we going to do to change the status-quo? This is our fight. The outcome is on our shoulders. 

We know what we need to do.

love to all, without reservation,

Rick



"Human salvation lies in the hands of the creatively maladjusted." -  
Martin Luther King, Jr.

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Today's Topics:

   1. Street Roots publishes article about OCSC launch! (David Oaks)


----------------------------------------------------------------------

Message: 1
Date: Thu, 10 Apr 2008 15:20:24 -0700
From: David Oaks <oaks at mindfreedom.org>
Subject: [OCSC-news] Street Roots publishes article about OCSC launch!
To: ocsc-news at intenex.net
Message-ID: <39A132C6-27BC-4D9E-9232-D25CD39BC8E2 at mindfreedom.org>
Content-Type: text/plain; charset=US-ASCII; delsp=yes; format=flowed



Hi OCSC News list!

The below article in the new Street Roots (available all over  
Portland, Oregon) is all about the launch of the Oregon Mental Health  
Consumer/Psychiatric Survivor Coalition (OCSC). The teleconference  
launching the first board is 22 April 2008.

Please print this out and photocopy for those NOT on the Internet!  
Help them hear about the OCSC launch!!

For more info about the new "OCSC" see links at the BOTTOM. By the  
way, I'm emailing this to the OCSC-News list. There is also an OCSC- 
Talk list for discussion. On there we are talking about organizing,  
exchanging introductions and news, and posting info about the  
upcoming launch. If you are not on the OCSC talk list and wish to be,  
you can sign up here:

http://www.intenex.net/lists/listinfo/ocsc-talk

~~~~~~~~~~~

Published in _Street Roots_ newspaper, Portland, Oregon, USA:

4 April 4 2008 -- News

New mental health coalition organizes survivors for reform

By Mara Grunbaum, Staff Writer

As far as David Oaks is concerned, it's no coincidence that "One Flew  
Over the Cuckoo's Nest," Ken Kesey's novel about the dark side of the  
psychiatric system, takes place in Oregon. Forty-six years after the  
book's publication, Oaks - who was himself institutionalized and  
involuntarily medicated in the 1970s - has serious reservations about  
Oregon's public mental health system. He isn't the only one with  
concerns, but the state, he says, isn't listening.

Oaks heads up MindFreedom Oregon, a Eugene-based advocacy group whose  
several hundred members are mostly "mental health consumers and  
psychiatric survivors" - people who partake in mental health  
services, and people who feel the psychiatric system has harmed them.

"We are an extremely disempowered constituency," Oaks said, despite  
the fact that more people now have psychiatric diagnoses than ever  
before. Oaks contends that decisions affecting mental health  
consumers are made without adequate input from those who will be  
affected most. For example, he said, instead of letting politicians  
argue over how to best help the homeless population, "Let's hear from  
homeless and ex-homeless people who've been through the mental health  
system about what helps them."

In 2007, the McKenzie River Foundation granted MindFreedom $8,000 to  
set up the Oregon Consumer/Survivor Coalition. The coalition, which  
officially kicks off April 22, will unite 14 consumer/survivor groups  
statewide. Oaks and other members of the coalition's steering  
committee hope that by banding together, they can consult with  
thousands of mental health consumers across Oregon and push for  
reforms that people using the system actually want.

The Oregon Department of Human Services treats between 70,000 and  
75,000 people with mental health issues each year, and they're  
currently meeting less than half the need for publicly-funded  
services, according Addictions and Mental Health Division Deputy  
Assistant Director Madeline Olson.

The state used to fund an Office of Consumer/Survivor Technical  
Assistance (OCTA), whose small staff served as a liaison between  
mental health consumers and the government, kept track of programs  
statewide, and provided technical assistance to consumer/survivor  
groups looking to expand their services. The office's director,  
Rollin Shelton - who says he received public psychiatric services in  
California in the 1980s - advised state committees on consumer  
concerns and regularly helped inform decisions on mental health  
programs. When a revenue shortfall forced the state to make budget  
cutbacks in 2003, OCTA was one casualty, and Oregon has not paid for  
a comparable entity since.

The consumer perspective is important, Olson said, and DHS has  
supported several attempts to reestablish an office like OCTA, but  
each failed to win funding from the legislature.

"There are never sufficient revenues in this state to fund everything  
that people need, let alone everything that people would like," Olson  
said. She cited the $458 million project to replace the aging Oregon  
State Hospital as one thing that has taken precedence over funding a  
consumer affairs office. "There's a lot of value in a dedicated  
office, but if I had to trade between continuing to treat people in a  
building that was built in 1883 or building that office, I would  
elect to have a safer treatment space for those people."

Oaks isn't convinced. If the state can find nearly half a billion  
dollars to build new institutions, he said, they should be able to  
devote some money to an organized consumer voice.

Shelton, the former OCTA director, is now the executive director of  
Mental Health America of Oregon/PeerLinc Oregon, which provides  
training and technical assistance to people with mental health issues  
and consumer/survivor groups. He is also on the new coalition's  
steering committee.

Without statewide coordination, Shelton said, the mental health  
system operates in many "different little fiefdoms." While some  
counties improve mental health services, others are still "in the  
dark ages," and little information is shared between them. "As a  
result, folks all over the state are again and again and again in the  
position of having to reinvent a wheel that someone else has already  
invented," he said.

The Oregon Consumer/Survivor Coalition will represent a wide variety  
of viewpoints, Shelton explained, from those who vehemently oppose  
chemical treatment of mental health issues to "folks who believe with  
equal strength of conviction that without their psychiatric  
medication, they'd be lost."

Oregon has taken some steps to include the mental health consumer  
perspective in its decision making. A senate bill passed in 2007  
requires at least one fifth of the members of any government-formed  
mental health advisory group to be consumers of mental health  
services. Olson also said that DHS has added staff at the state  
hospitals who are trained to respond to consumer concerns. "I think  
we've tried to compensate," she said, athough "it's not quite the  
same thing as having an everyday voice at the state," which OCTA  
provided.

The level of consumer representation at the state is "still sort of a  
token," said Amy Zulich of Empowerment Initiatives, another Portland  
group involved in the coalition. Empowerment Initiatives gives 25  
individuals a year grants of $3000, which they use as part of a self- 
directed mental health plan. Grant recipients might spend the money  
on clothes, art supplies, or a personal skills coach, depending on  
what they determine would help them reach their goals.

Zulich hopes the coalition can give mental health consumers wider  
access to these "brokerage" programs and other community tools.  
Shelton would like to expand peer-delivered services, where people  
who have experienced mental health issues are paid to assist others  
facing similar challenges. Oaks wants to put an end to involuntary  
psychiatric treatment, which is court-ordered for about 800 adults  
every year. All three advocates emphasize that what they really want  
is to hear from as wide a range as possible of mental health  
consumers and to bring those voices into the public process.

"Nothing about us without us," Oaks stressed. "If we're talking about  
mental health.. Let's have people who've been at the sharp end of the  
needle. Let's have them at the table."

- end -

Street Roots, which is published every two weeks, has been Portland,  
Oregon's flagship publication addressing homelessness and poverty  
since 1998.

You may submit a letter to the editor of _Street Roots_ here:  
info at streetroots.org

ORIGINAL online article and info about Street Roots click here:

http://www.streetroots.org/past_issues/2008/04_01/ 
news_mental_health.shtml

The article is also online here:

http://www.mindfreedom.org/campaign/media/mf/street-roots-ocsc

YOU are invited to support and become involved in the Oregon Consumer/ 
Survivor Coalition (OCSC)!

INFO about OCSC:

http://www.mindfreedom.org/as/act/us/or/ocsc

INQUIRIES: You may e-mail questions or comments about OCSC to: Mark  
at mfisher88 at msn.com

E-LISTS: You may sign up for an OCSC News list, OCSC Talk list, or  
both, here:

http://www.mindfreedom.org/as/act/us/or/ocsc/ocsc-lists

PLEASE FORWARD this important news to all appropriate places on and  
off the Internet. 



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End of OCSC-news Digest, Vol 3, Issue 1
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