New mental health coalition organizes survivors for reform
Source: Street Roots, Portland, Oregon, USA
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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.”