Oregon Summitt

Consumers seek unified voice at mental health conference
The issue of forced treatment vs. patient rights is a rallying point for more than 400 people who come to Portland to be heard
Sunday, August 29, 1999

By Erin Hoover Barnett of The Oregonian staff
This summer, Janelle Anderson lay alone in ankle and wrist restraints in an Oregon psychiatric hospital, knowing she didn't like being treated this way.
On Friday, Anderson joined more than 400 people who attended the National Summit of Mental Health Consumers and Survivors in Portland to speak up and speak out.
"I came for the survivors," said Anderson, who at 20 looks like a 1940s film star with clear blue eyes and blond hair in ringlets. "I do believe we need unity, but I believe we need people who have 'been there.' "

Violence and treatment • The rate of violence among people discharged from psychiatric facilities who did not abuse alcohol and illegal drugs was no different from that of their neighbors in the community. (The MacArthur Violence Risk Assessment Study, 1998; http://ness.sys.virginia.edu/macarthur/violence.html)
• Substance abuse tripled the rate of violence among the general population and increased the rate of violence by people discharged from psychiatric facilities by up to five times. (The MacArthur Study)
• Less than one-third of people with schizophrenia receive the appropriate dosage of anti-psychotic medications over the long term. (The Schizophrenia Patient Outcomes Research Team, or PORT, Johns Hopkins University, University of Maryland, 1998; www.medscape.com)
• African Americans with schizophrenia are almost twice as likely to be overmedicated with anti-psychotic medications than their Caucasian counterparts. And African Americans with schizophrenia are twice as likely to be denied medication for serious symptoms of depression than their Caucasian counterparts. (PORT study)
• Mental illness, including suicide, in 1990 accounted for more than 15 percent of the burden of disease in established market economies such as the United States. This exceeds the disease burden caused by all cancers. (The Global Burden of Disease study by the World Health Organization, the World Bank and Harvard University)
• The state of Oregon estimates that more than 17 percent of the state prison population has been diagnosed with chronic or severe mental illness.

People who have lived with mental illnesses have become activists, formed support groups and sat on mental health boards in cities and states for years. Some have joined with their family members in the 20-year-old National Alliance for the Mentally Ill.
But the four-day summit in Portland that ends today is an attempt by consumers of mental health services and those who have been in psychiatric institutions to create what they have lacked: their own unified national voice.
"For a long time, consumers and survivors have worked with other organizations," said Joseph A. Rogers, executive director of the National Mental Health Consumers' Self-Help Clearinghouse in Philadelphia, lead sponsor of the summit.
"But many of us think the time has now come for us to stand alone," said Rogers, who has bipolar disorder. "Quite simply, no one can represent us as well as we can represent ourselves."
The summit is happening amid discussions from kitchens to Congress about when a person with a mental illness and a propensity for violence should be forced into treatment or locked up in a psychiatric hospital.
Some at this weekend's summit want to broaden the discussion to ask "whether."
Forced medication or hospitalization is only one of the issues summit participants talked about. But it is a key rallying point for this emerging movement. And it may be the most difficult fight.
Fueled by a few high-profile cases of people with mental illnesses who have become violent -- such as the man who killed two police officers in the U.S. Capitol last year and another who opened fire at a Jewish community center in Los Angeles this month -- an "assertive treatment" model is gaining momentum. The Clinton administration in June endorsed Medicaid coverage for the model, which is used or being tried in 25 states. Discussions about adopting the model in Multnomah County took place this month.
The model includes reaching out to people who aren't getting treatment and providing long-term, fully integrated and individualized services. The National Alliance for the Mentally Ill says such programs "keep people from falling between the cracks."
Much about the model is widely praised. But some activists are wary of what they consider a heavy-handed approach, including home visits to deliver and watch people take their medication.
"Even those of us who are pretty pro-treatment are worried about the push toward involuntary treatment," Rogers said.
Among people with mental illnesses, opinions vary about the acceptability of outside influence over treatment.
Some support forced treatment the moment a person is a danger to himself or others. Others reject forced treatment, ever. But underlying those perspectives is a belief that people should get to choose how they deal with their illnesses, just as diabetics or heart patients do.
"I think that when we use force (to get someone into treatment), it is representative of a breakdown of something we should have been doing upfront to meet that person's needs," said Kevin Fitts.
Fitts is director of Oregon's Office of Consumer Technical Assistance, a Portland-based advocacy organization run by and for people with mental illnesses and a co-sponsor of this weekend's summit.
At 34, Fitts also has bipolar disorder. When he was 19, his parents committed him to Dammasch State Hospital. A few years later, struggling with drug and alcohol abuse and feeling suicidal, he returned on his own.

Resources • Office of Consumer Technical Assistance, a nonprofit resource organization run by and for Oregonians living with mental illness. Publishes guide to resources around the state, 503-231-3052. (www.orocta.org)
• Mental Health Association of Oregon, housed in the Oregon Advocacy Center, Portland, 800-452-1694. (National Mental Health Association, Alexandria, Va., 703-684-7722; www.NMHA.org)
• National Alliance for the Mentally Ill-Oregon, 800-343-6264. (National Alliance for the Mentally Ill, Arlington, Va., 800-950-6264; www.nami.org)
• Office of Mental Health Services, Oregon Department of Human Resources, 503-945-9700. (http://omhs.mhd.hr.state.or.us/)
• Project Equality, a Salem-based advocacy group for people on the Oregon Health Plan or Medicaid. Part of the Oregon Health Action Campaign, 800-789-1599.
• Support Coalition International, a Eugene consumer-survivor advocacy group, 541-345-9106. (www.MindFreedom.org)

Now Fitts manages his illness without medication. He runs to channel his energy. He talks with friends or a therapist when he needs to.
Many in the mental health community understand the need for choice.
"A person ought to be in control of what happens to their body," said Dr. Lawrence Hipshman. Hipshman is director of medical services and clinical standards for Unity Inc., the merger of three community mental health programs in Multnomah County.
"Again and again, people will adhere to their treatment regimen better when they feel they're doing something they want to do," Hipshman said.
Participants in this weekend's summit hope to close the conference today with a unified statement about forced treatment. They also hope to reach consensus in such areas as culturally appropriate treatment for ethnic or racial minorities; ways to combat stigma; health insurance coverage; and political organizing.
Portland was chosen for the conference for logistical reasons, such as getting the focus away from the East Coast. It was also in recognition of Oregon's history of grass-roots activism on mental health issues.
In the 1970s, a group of Oregonians formed the Insane Liberation Front. A man called Howie the Harp was a key figure in the Oregon movement.
In 1988, The Mind Empowered Inc. became the first publicly funded advocacy group run by people with mental illnesses in Oregon. Now the state Office of Mental Health Services has an advisory council, and half of the members are people who are mentally ill, their advocates or relatives. The state authorized funding to start the Office of Consumer Technical Assistance, Fitts' organization, last year.
People came from across the country to attend this weekend's summit.
Yolanda McCall came from Philadelphia "to be empowered and to learn more about different people's struggles and their survival."
McCall, 44, lives with a form of schizophrenia and works for a program for people who are homeless, involved in substance abuse and mentally ill.
Nancy Yazzie came from the Ft. Apache Indian Reservation in Arizona to learn more about support services for mental illness. "We don't get much help from the community," said Yazzie, 58.
Janelle Anderson hopes to leave the summit knowing she has affected this movement -- and her own healing. Feeling suicidal, she committed herself to the Eastern Oregon Psychiatric Center in Pendleton in May.
When she became upset and alarmed a nurse, she offered to swallow some calming medication. But she said the nurse refused. Anderson looked up and saw the nurse with the syringe. Angry, she bit one of the workers who was holding her down. She was placed in restraints for three hours.
Now she has her first criminal charge as an adult -- fourth-degree assault.
She hopes she can interrupt what can become a relentless dance with the system. She says what she needs is love -- not forced injections and restraints.

You can reach Erin Hoover Barnett at 503-294-5011 or by e-mail at ehbarnett@news.oregonian.com

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