Some stuff from Street Roots and the Oregon Consumer/ Survivor Coalition:
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
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
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.”
My 2 cents:
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.
Our path is the path of liberation.