Peers ‘who have been there’ guide recovery

From the Portland Tribune, July 14, 2011

Portland hospital at vanguard of national mental health movement

Henry Linebaugh, holds a knife he sleeps with because it makes him feel safe. Linebaugh is a former patient of the Oregon State Hospital in Portland and Salem who says peer counseling saved my life.

Henry Linebaugh, holds a knife he sleeps with because it makes him feel safe. Linebaugh is a former patient of the Oregon State Hospital in Portland and Salem who says peer counseling saved my life.

Loud music from the drug nest below Henry Linebaugh’s Northeast Portland apartment rattled his windows last Wednesday.

The 65-year-old Linebaugh, a former patient of the Oregon State Hospital, went downstairs and yelled at his neighbors before remembering what peer recovery specialist Scott Snedecor taught him.

“The noise made me crazy,” he recalls. “No, it didn’t make me crazy. I chose to lose control.”

Prior to his commitment, Linebaugh tried to hang himself three times at the state penitentiary, his 14-year home after a 1995 child-abuse conviction. Snedecor, a survivor of mental illness trained to serve as a fellow in arms to current hospital patients, is the only staff member who reached him, according to Linebaugh.

“I don’t believe the Salem hospital helped me a damn bit,” he says. “All they did was house me. When I got to Portland, Scott gave me hope. Him and his simple jokes. He knew what I was going through. He’d been there.”

The relationship between Snedecor and Linebaugh is at the center of a national movement to implement the peer-on-peer recovery model. Proponents of the peer counseling ideology say that survivors and sufferers of mental illness touch patients’ lives in ways that doctors and therapists cannot.

In other words: if you’ve been there, you understand.

Greg Roberts, superintendent of the Oregon State Hospital since August 2010, wants to create a department of 25 specialists like Snedecor, the first entire department of peer counselors in the country.

He appointed a department director last week, bringing a system depicted as lobotomy-happy grotesquerie in the 1975 film classic “One Flew Over the Cuckoo’s Nest,” to the modern edge.

Many Portlanders don’t know that the quiet gray building at Northeast Second Avenue and Wasco Street is home to nearly 100 patients battling mental illness. Oregon taxpayers mostly foot the hospital’s operating cost — $166,464 per patient last year, or $35 million per biennium drawn from the state’s general fund.

This is where Snedecor became the first peer specialist in the Oregon system. This is where change is happening.

“There’s nothing more powerful than a person saying to another person, ‘I made it. You can too,’ ” Roberts says.

No stranger to shambled bureaucracy, Roberts came to the Oregon job from his role heading New Jersey’s hospital system.

“He’s knows what to do. He’s not fooled by middlemen and bureaucracy,” says Jason Renaud, cofounder of the Mental Health Association of Portland.

Renaud and his colleagues at the organization campaigned against the Salem hospital after learning that the remains of more than 3,000 patients were kept there in a storage closet.

“Things are changing in Oregon, and that’s a good story to tell,” he says.

So much despair

Portland was the host city of the peer counseling ideology’s roots with the Insane Liberation Front, a group of ex-patients and advocates founded in 1969 by Tom Wittick, Dorothy Weiner and the legendary Howie “the Harp” Gelp. It was the first documented coalition in the crusade that’s sometimes called the C/S/X movement — C/S/X stands for Consumer/Survivor/Ex-patient.

“We know stuff the professionals don’t,” says Wittick, 61, who lives in Southwest Portland. “We don’t like people interpreting everything for us. Like, ‘Oh, you’re crazy and you should be in a halfway house.’ I don’t appreciate that.”

When Wittick was 26, he was diagnosed with schizophrenia and institutionalized. He believes his diabetes is the result of medications he didn’t want to take.

The state system is catching up to the peer revolution, but community mental health care in Oregon already sparkles with programs offering peer-delivered services. Portland Hearing Voices, Project Able and MindFreedom International are a few of the notables.

David Oaks, executive director of MindFreedom, advocates for patient choice in medications.

Oaks took his last dose in 1977 after five hospitalizations during his time as a student at Harvard. He was diagnosed with schizophrenia and bipolar disorder, forcibly drugged and ordered to sit in solitary confinement.

“There’s so much despair, and then you’re committed, and here are your choices: drug, drug, drug, drug or drug,” Oaks says.

Employing survivors of mental illness to treat peer sufferers is a cost-effective solution, according to Oaks.

“I call it a win-win-win situation,” he says. “You take someone who’s been through hell but isn’t necessarily degreed or licensed. You train them, and both the patient and the trainee are helped. Plus society gets to see the positive faces of people with psych labels.”

Jerry Weller, a specialist at the Portland hospital, is one survivor who believes he benefits from helping patients.

The 46-year-old ex-combat veteran is diagnosed with bipolar disorder. His worst memories of Desert Shield and Desert Storm, he shares, are the charred bodies everywhere and burnt limbs that dropped when he moved the corpses.

“I’m not the same since I came back,” he says. “Being around sick people reminds me to take my medication and keep structure in my life so I don’t end up here.”

Guiding peers

Peer relationships like the bond between Weller and his patients or Snedecor and Linebaugh are the buzz of the psychiatric industry, and the movement is gaining recognition.

Gina Nikkel, a major supporter of Oaks and a power player in the Portland world of mental health care, was appointed in late June to the directorship of the National Foundation for Excellence in Mental Health. Nickel wants the foundation to generate research supporting the success of peer services.

“I think the peer model is absolutely crucial for a huge number of reasons,” she says. “First of all, it works.”

According to Marsha Linehan, the founder of dialectical behavioral therapy, peer counseling can only be viable if backed by research like the science Nickel hopes to produce.

Linehan came out as a survivor in early June, telling friends, family and professionals about her suicide attempts. Her disclosure was detailed June 23 in The New York Times.

“If the state wants to provide evidence-based treatment, then the training and competence required in research studies should also be required by the state,” Linehan says. “Otherwise, it’s like saying we know brain surgery is effective, so we’ll have peer counselors provide it.”

But compassion is simple.

“My goal is to bond with people,” says Snedecor, the only peer recovery specialist at the Portland hospital. “I’m here to help guide them through this place and get them out.”

Snedecor tries to meet regularly with all of the patients at the hospital, but he admits that he’s stretched thin. Roberts’ plan to create a department of peers is the right idea, he says.

“You can only do so much when your paycheck comes from the state,” he says. “I can’t go to everyone’s treatment meetings. If someone’s yelling and screaming, maybe I can’t work with that person. I don’t have time, really, to spin my wheels here.”

Snedecor’s own struggle with mental illness is his motivation for helping others. He was committed to the Dammasch State Hospital in Wilsonville twice, when he was 19 and 26. His diagnoses were schizophrenia and bipolar disorder.

“It makes him my brother,” says Raymond Suell, a 40-year-old from Texas living at the Portland hospital. “We’ve had some of the same treatment.”

Suell’s hands shake when he describes his past on the streets. “I was cold. My pants were wet. I didn’t know where to go. I was depressed. Do you know what that’s like?”

Snedecor does. “I’ve been messed up all kinds of ways,” he says. “I’d go lie down in my room all day to try to escape. I’d go to the beach and instead of enjoying it I’d go lie down in my room. It was horrible.”

Clay Woodward of Southeast Portland, another patient in the group that Snedecor leads on community outings every week, claims Snedecor doesn’t take the time to talk with him.

“I don’t know his name. I didn’t know he’s dealt with mental health issues,” says Woodward. “All I know is he takes me on these escapades. But I guess that’s better than living in some cockroach motel.”

A man of his word

Snedecor created the peer specialist position in 2003. A social work veteran, he approached hospital administrators with the idea and was hired part-time at first.

“I’m the pilot program for Salem,” he says.

The Salem hospital was once a house of terror, according to many patients. Woodward’s brother Greg, who was committed there in the ’80s, remembers the handcuffs.

“They would put me in cuffs and take me places. I don’t think they talked to me ever,” he says.

The Salem campus is where 22-year-old client Matthew Kirby works as the facilitator of the Consumer Council, what he calls “the patient political body.”

He submitted a proposal to Roberts last November, asking him to amplify patient voice in the hospital. Roberts created the Consumer Representation Workgroup, headed by Kirby.

“I was skeptical at first but completely impressed by his rhetoric,” says Kirby. “As it turns out, he’s a man of his word.”

Kirby and Roberts walked side by side through downtown Portland this May in a parade hosted by the National Alliance on Mental Illness.

Granted conditional release in 2009, Kirby is still waiting at the hospital for a bed to become available in a group home.

Comfortless waiting is a component of many patients’ experiences. Becky Demarest, 51, who also lives at the Salem hospital, just went through training to become a peer specialist, and though she loves her work, she longs to be free.

“What I miss most is the stars in the sky,” Demarest says. “I miss being able to see the streets and the mountains and cars.”

But Linebaugh, living alone in his one-bedroom unit, wishes he weren’t a member of the real world.

The medications he takes don’t seem to help. He tries to calculate his dosage: 12 to 15 pills twice a day, he thinks.

“You’re the first person I’ve talked to in six weeks,” he says quietly. “I sleep with a knife. It’s comforting. I’m so tired of life, and the nights get long. I rock back and forth.”

He holds his arms close to his torso and demonstrates his anxious midnight tic.

Phone calls from Snedecor and occasional dinners with him, Linebaugh says, are his anchor.

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