Peer Advocates Who Made Things Happen in Oregon

The 6^th chapter in the history of mental health in Oregon reviews what has happened here from the perspective of seven advocates who have made a difference in Oregon.  No history of this state’s mental health system would be complete without recognizing them.

I first want to acknowledge David Oaks’ critical role in founding MindFreedom International.  He has had an impact far beyond Oregon in standing up for the civil rights and dignity of anyone who becomes involved with mental health systems and opposes the use of coercion in that world.  He has challenged the belief that people who were diagnosed with schizophrenia and other psychiatric labels were incapable of understanding “what was wrong with them.”

Those unfamiliar with his story can learn about David at https://mindfreedom.org/about/brief-bio-oaks/david-w-oaks/

Dr Sue Estroff describes MindFreedom on their website:

“What MindFreedom is and does keeps the heart and soul of activism well nourished and focused.  I look to MindFreedom for information, perspective, and wisdom…”

This chapter pays tribute to peer advocates in Oregon by reviewing what they have accomplished so that others can be inspired by what they did.  All of the peer advocates in this history have demonstrated the power of confronting system challenges and prevailing over them enough to make things happen.  Each had a vision that should not be forgotten.

GARRETT SMITH

Garrett Smith can be considered the first leader of Oregon’s peer recovery movement.  His vision was that the mental health system should commit to recovery and be accountable to peers and not be imposed on them.

Garrett spent many years preparing for his effort in reforming mental health.  He was a product of Oregon and earned a Master’s degree in public administration from Pomona College in California.   During the 1960s, he worked in the Kennedy Administration and was acquainted with Eleanor Roosevelt, Danny Kaye, and others.  When he returned to Oregon he served as a land use planner and a professional potter on the coast.  For 10 of those years, he was addicted to alcohol and admitted several times to psychiatric hospitals.  After getting into recovery, he became the research assistant for a National Institute of Mental Health (NIMH) Dual Diagnosis Demonstration Project in Salem from 1987 to 1990.

During this time, the state of Oregon funded Mind Empowered Inc., (MEI) which was the dream of Jerry Wang who had been in and out of psychiatric hospitals for over 20 years. He told state staff and many others that he always ended up alone wasting his time in front of a TV not knowing what to do with his life. He began to realize that there was no program that addressed this kind of aimlessness, no program that could help people out of psychiatric hospital with the challenging tasks of everyday life: finding housing, managing money, learning to cook, and finding friends. So he applied for and received a state grant of $393,000. It funded 15 peer volunteers who served 60 others with supports that helped them do just that.

When Jerry was unable to continue serving as the executive director, Garrett was appointed to the position. In 1989, the state mental health division provided additional funding for a more comprehensive peer-operated program through MEI, a consumer-operated case management project.  The purpose of the Community Survival Program was to work with up to 35 state hospital patients who were considered the most difficult to discharge. The program gained national attention in a 1992 article co-authored by Garrett in Hospital and Community Psychiatry that described the program participants:

“The first 24 persons admitted to the program had a total of 265 admissions to state hospitals in Oregon and a lifetime average length of stay of about 1,335 days. Seven of the participants had lifetime length of stays of more than 2,000 days.”

MEI offered comprehensive peer case management, with better access to housing and supports, as well as a drop-in center in the downtown area of Portland.  Peers were trained as case managers because they knew from firsthand experience what it took to leave this troubled state hospital.  Being taught by peers how to live successfully in the community was the key to gaining hope.  Some early outcome measures showed dramatic signs of success.

The first six months of the program delivered on the early promise of success.  Only two of the first 24 participants returned to the state hospital.  This outcome was not necessarily expected given that this was an extremely challenging period for the participants who had to live in the community for a long time.  Plus the case coordinators were adjusting to the world of getting people out and helping them with cope with major changes in their lives.

MEI conducted two of the first peer-delivered programs of their kind in the US.  They laid the groundwork for Oregon’s peer recovery movement.

CORBETT MONICA

In 2006, Corbett asked to talk with the commissioner of mental health and addictions and told the story of how he had founded Dual Diagnosis Anonymous (DDA) in California.  Himself in recovery from both alcohol and mental health challenges, he had been taking some of his clients to regular Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) but they weren’t welcome when they tried to talk about their mental health challenges.  Twelve-step programs held highly structured meetings not well suited for people who were at times struggling with attention problems and sometimes feeling confused or fearful.  Some spoke of hearing voices or other unusual experiences.  AA or NA meeting leaders frequently called Corbett and said, “…don’t ever bring that guy back.”

So Corbett created Dual Diagnosis Anonymous with some additional steps:

“Admitting that we had a mental illness: accepting that we also had alcohol and drug problems; a willingness to accept help; a willingness to accept help for both; understanding the risks and benefits of psychiatric drugs; coming to believe that when our own efforts were combined with the help of others in the fellowship of DDA, and God, as we understood Him, would develop addiction free life styles; and in following the DDA Recovery Program for our own well-being, we found ourselves helping others.”

Contrary to one of AA’s traditions prohibiting the acceptance of any outside funds, Corbett agreed to take $50,000 in state funds and was told to “go out there and start 30 meetings and see what you can do.”  He put 80,000 miles on his green Toyota Prius in a year and started meetings in almost every county in Oregon.  There was a clear need for a peer-developed and peer-driven self-help approach for people struggling with both problems and who were marginalized and stigmatized.

There were three issues that had to be resolved early on.  The first was that in contrast to the other 12-step program meetings which rarely allowed for discussion of unrelated issues, DDA featured “cross talk,” which allowed discussion of topics other than the 12 steps.  The second difference from AA and NA was that members were often taking psychiatric medications, something that other programs opposed.  Rather than taking a position one way or the other, DDA did not encourage members to start or stop taking them.  The third issue was that a member who had not stopped using alcohol or other drugs completely was still allowed to begin attending meetings.  What was required was a sincere desire to stop.

Corbett’s founding of DDA has been a powerful resource for people who would otherwise be without the supports they need for their recovery from mental health problems and substance use.  The most powerful ingredient in DDA’s magic was the sense of total acceptance and a feeling of finally belonging somewhere.  Because there was an immediate demand, its budget grew from $50,000 to $300,000 before Corbett’s untimely death in 2014 from wartime exposure to Agent Orange.

DOYAL SMITH

Before Corbett Monica passed away, he named Doyal Smith as the new executive director of Dual Diagnosis Anonymous.  Doyal made changes that have dramatically increased funding to nearly $1 million.  In addition to the many in-person meetings he started, he expanded DDA’s national and international presence with meetings online during the pandemic.  In another departure from the other self-help “Anonymous” traditions, Doyal encouraged members, with their permission, to speak out about their experience with DDA to increase its visibility and reduce stigma.  While doing this, DDA has also strictly adhered to protecting confidentiality unless otherwise waived.

Doyal’s path has been an unlikely story leading him to be the executive director of a nonprofit organization.  He grew up in north Portland, a neighborhood where his family was deeply involved in drug sales and other illegal activities.  Diagnosed with ADHD and medicated in first grade, he experienced violence and psychological trauma at home.  When he was 9, he ran away—desperate to escape the chaos.  He learned to drive when he was 14 in a stolen car being chased by Portland police.  He escaped by tumbling down a hill, sustaining a concussion, and barely making it to his parents’ house.

By 19, he had become a late-stage addict, caught in a cycle of methamphetamine use, delinquency, criminality and despair.  He ran away again—this time into the arms of a life of crime with arrests, hospitalizations, and admissions to psychiatric wards.  In 1993 he was homeless, emaciated and lying on a bench near downtown Portland. He had become a product of his environment—a living reminder that children often mirror where they lived.  When fleeing didn’t bring peace, he contemplated suicide—but this time, at that bench, he decided to get into recovery.  Instead of choosing vengeance, he chose survival. He has been sober and clean for 32 years.

Now there are almost 60 in-person and 15 online DDA meetings.  There are meetings in prisons and a high school.  He has created many new activities such as monthly “Fellowship Gatherings” and social events, some of which have attracted over 150 DDA members.  There are picnics, bowling events, and a campout with 50 members.  An unexpected result of the online meetings is that there are members from as far away as Chicago, New York, and even St. Petersburg, Russia.  DDA has meetings in many other states and countries first starting in London.  And the DDA Handbook has been translated to German, Italian and Spanish.  The website now has had nearly 400,000 visits along with a lively chat room.

Doyal’s remarkable leadership means that DDA has led thousands to regain their lives in recovery.  Members think of themselves as people, not their diagnoses, and many now say, “DDA is the future” and speak of how their involvement with DDA has saved their lives.

DAVID ROMPREY

David Romprey was outspoken.  Once, when a state official who was proudly describing the newest residential facility as having 16 beds, he stopped him and said, “Wait. Do you think we’re laying around prostrate all the time?”  He was often heard saying, “Let my people go.”  David Oaks saw him as a “dynamic hero” for the mental health advocacy movement in Oregon.  He stood solidly for the principle that peers should be able to choose the lives they wanted and not be “guided” or controlled by mental health professionals.  He actively promoted peer supports, consumer choice, and self-determination by speaking fearlessly and powerfully.

He prepared for leadership after being confined for two years of involuntary treatment at Oregon State Hospital.  But shortly after being discharged in 1991 he attended his first advocacy conference at the University of Oregon.  He returned to college and gained a B.S. degree in Management and Communication in 1996.

He gained access to organizations and institutions using his experience of what it was like to be a patient.  An important venue for his voice was his longtime membership on the state consumer advisory council.  He worked with the Oregon Health and Science University (OHSU) psychiatric training center for them to seek a better understanding of people with lived experience.  He helped create OHSU’s Center on Self Determination to train not only psychiatrists but also nurses and other professionals in a far different manner than they had been taught.

He provided input into many other initiatives, like the state’s new integrated electronic client medical records and database.  He gave written testimony to the Oregon Legislature’s Joint Committee on Oregon State Hospital Patient Care.  He took leadership roles with the Oregon Consumer/Survivors Coalition, the Oregon Peer Response Network, and the Oregon Competitive Employment Project Leadership Council. David worked for many other organizations which included Marion County Mental Health, the Mid Valley Behavioral Healthcare Network, Greater Oregon Behavioral Health, Inc., the Association of Oregon Community Mental Health Programs, MindFreedom International, and the National Empowerment Center.  He testified in person on peer empowerment to Governor Ted Kulongoski’s Mental Health Task Force and was an advisor to the director of Oregon’s Addictions and Mental Health Division

In 2008, he was asked to be co-leader for the Addictions and Mental Health Division’s Wellness Initiative to increase the quality of health and to extend lifespans for Oregonians diagnosed with major mental challenges.  Here he spoke about the need for better health for everyone, not just those who were in the system.

He had just been hired for leadership of the new Peer Bridgers Program at Oregon State Hospital to assist people who were having a hard time getting out when he died unexpectedly at the age of 42.  He was pulling out of his driveway on his first day of work.  It is ironic, given his leadership in the state wellness initiative, that he passed away at such an early age resulting from his family’s vulnerability to heart disease.

He will always be remembered as a leader in so many advocacy activities, and in particular for his part in developing a crisis line for rural Oregon which was named for him, the David Romprey Warmline.

BECKIE CHILD

Beckie Child is one of the first Oregon peer advocates to earn a PhD in the mental health field.  Her encounters with the mental health system were shaped in part by being homeless three times and hospitalized more than 40 times.  Few professionals would have predicted she would achieve academic success and contribute to the knowledge base of the mental health systems in Oregon and beyond, but that is what she did.  Dr. Child is well-known in Oregon as well as nationally for her work in Oneida County, New York, for her systems change initiatives.  She was named Mental Health Advocate of the Year by the Mental Health Association of Portland in 2019.

Prior to and during her graduate school involvement she was very involved in Oregon’s attempts at systems change by her membership and leadership in state activities and federal initiatives.  She served many years as executive director and board president of Mental Health America of Oregon.  She was appointed to the Oregon State Hospital Advisory Board, on which she served for nine years.  Her work for the state included coordinating the Adult Mental Health and Addictions Services for Trauma Informed Oregon (TIO).  On a national level, she provided leadership to the Peerlink National Technical Assistance Center and trainings on how trauma activates physiological responses along with practical steps to gain more control over these responses.

Before completing her PhD, she taught as an MSW at Portland State University and she is now on the faculty of Utica University, the only recovery-oriented social work program in the United States.  Her doctoral dissertation was entitled “Health Literacy Needs of People Diagnosed with Mental Illness,” an indicator of her passion for training people with mental health challenges to be able to talk about their medical needs and their use of psychiatric medications.  She has worked in two state mental health systems and has authored and co-authored many peer-reviewed articles on a variety of subjects.

A lesson she shares is this:

“I have this recurring thought—people who are using services need this information more than the people providing services.  As someone who has experienced trauma and had my trauma activated more times than I can count, knowing that the responses I am having are neurobiological and not so much evidence of my own weirdness is comforting and helps me be a little kinder towards me.”

Beckie also found success in the Oregon state legislature. One of her proudest accomplishments was getting a bill passed that guaranteed Oregon State Hospital patients the right to access fresh air. At least four other states added that to their patients’ rights, too. This bill has affected thousands of people. Beckie says she smiles when she goes to visit people in the hospital and hears staff tell people that it’s time for their “fresh air” break. The staff and the people who are incarcerated in the hospital don’t know that she was the person who helped bring this break to pass.

LAURA VAN TOSH

Oregon was very fortunate to have Laura Van Tosh here for six years from 2009 to 2015.  She had seen it all, going from being on a teenage psych unit in Texas and experiencing several rounds of homelessness to working at the state mental health office in Maryland.  From there she served the National Association of State Mental Health Program Directors as a consumer affairs and policy advisor.  Later she was hired by Andy Philips, the superintendent of Western Hospital in the state of Washington as a patient advocate and policy advisor, reporting directly to him with an office next to his.

A critical experience was her contact with Howie the Harp, Judi Chamberlin, and Dr. Dan Fisher.  The perspective gained from this framed everything she has done as a peer advocate.  As she described in her interview with Robert Whitaker in 2022, it was a huge relief when she discovered the consumer movement.  When she came to Oregon, she brought a wealth of experience with advocacy and policy as well as her personal exposure to homelessness and forced treatment.  She knew the trauma, both physical and emotional, of being in psychiatric hospitals.  She had experienced the evils of psychiatric hospitals. She said, “Every single hospital I was in was involuntary.”

She began in Oregon by working in the Peer Bridgers program at Oregon State Hospital.  This program’s inspiration was the consumer case management program and, like that project, it was assigned some of the most difficult-to-discharge patients.  Once again it demonstrated the power of peers doing things that professionals could not.  Laura had learned the ins and outs of what life was like in the hospitals because she had been in all of them against her will.  She understood that recovery was something best learned from the patients themselves.  Laura’s resilience was a tremendous model for all patients.

She moved on from her work in the state hospital to a job at the state office of mental health and addictions, and then to a community mental health managed care organization in central and eastern Oregon, Greater Oregon Behavioral Health, Inc.  This required driving back and forth two hours each way and she showed her ability to engage with rural Oregon, a far different geographic and cultural environment than where she had formerly worked.

In 2013 she was asked by the state hospital leadership to write a planning paper, “The Oregon State Hospital Journey to Recovery” as the state prepared to open a long overdue state hospital in Salem.  The state was under pressure from the federal Department of Justice to provide a civil rights mandate to improve conditions at the new institution.  Her well-researched report responded to the state’s intention to shift its focus towards a recovery orientation as one way of responding to the DOJ’s mandates.   She wrote:

“Treatment teams are the driving force for patient education and basic clinical management.  Team members, to one degree or another, are familiar with the concept of recovery.  Most, however, are not ‘recovery-oriented’ and need education about the values of recovery and skills enhancement to provide services within a recovery construct.  Recommendation: Treatment teams should be immersed in the recovery nomenclature and philosophy in order to apply the principles to their everyday environment and with the people they serve.”

This paper provided the framework for a new start and evidenced her policy and hands-on perspective for how the new hospital should be created.  Only a person like Laura, with her resilience, values, and skills could have provided Oregon with a new perspective.  If only Laura had been here longer, she might have ensured a better peer orientation to the new hospital.

LESSONS

• We must keep the histories of peer advocates alive, lest they be forgotten for their part in making the recovery model a vision for system change.
• All of the people in Oregon described here were at one time considered “hopeless cases,” but each demonstrated the power of resilience in reclaiming their own lives—and helping many others do the same.
• By holding to their values, using their own experiences, and collaborating with others going through the same things, advocates can make changes possible, even in systems that often seem like a lost cause.