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Health Affairs Highlights the Power of Peer Support

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NYAPRS Note: Don’t miss this terrific piece in one of the nation’s most prestigious journals of health policy thought and research.

 

Beyond Twelve Steps, Peer-Supported Mental Health Care

By Michele Cohen Marill  Health Affairs  June 2019

 

Like a ghost town of psychiatry’s past, the abandoned buildings on the old campus of Central State Hospital, in Milledgeville, Georgia, tell a story of pain and progress. Patients once arrived by train at the small Victorian-style depot (now being repurposed into a museum) and checked in at the Powell Building, which mimics a capitol with its white brick, stately columns, and black dome and cupola. When Cathy Wrighton worked there in admissions a couple of decades ago, she pushed open a heavy window seeking fresh air and heard patients screaming from the floors above.

 

The Powell Building faces a grassy quad with a pecan grove, lined on either side by red-brick buildings with white pillars and porches. The paint is peeling, windows are boarded up or agape with broken-out glass, but the grass stays neatly mowed. At its peak in the late 1950s, Central State Hospital—once called the Georgia Lunatic Asylum—housed more than 12,000 patients, making it the largest such facility in the world.

 

Its decay reflects the fundamental transformation of mental health care from institutional to community-based services. Georgia has been at the forefront of this change—as the state at the heart of the groundbreaking Supreme Court case, Olmstead v L.C., brought by two women with mental illness and developmental disabilities. In 1999 Olmstead established the right of people with disabilities to receive state-funded services in the community.1

 

In that same year Georgia became the first state to receive Medicaid reimbursement for services delivered by “peers,” or people who use their personal experience with mental illness to help others. The role of nonclinical peer support is now a core part of the behavioral health workforce nationally, as forty-eight states and the District of Columbia have or are developing a system of certifying peer specialists. Peers join care teams in varied settings, from emergency departments and crisis centers to community programs.

 

“Peer support is one of the many things put into place to give people lives of meaning and purpose,” says Sherry Jenkins Tucker, executive director of the Georgia Mental Health Consumer Network, which contracts with the state to provide training and testing for certified peer specialists.

 

It is a recovery-focused paradigm, one that starts with the presumption that each individual can live a full life, whatever challenges might arise. “It’s a hopeful perspective. Hope really is our stock in trade,” Tucker says. “I have lived hopeless and helpless in my adult life. It’s more disabling than any set of symptoms.”

 

Unlike twelve-step group-support programs such as Alcoholics Anonymous that rely on volunteers, peer programs are built on a set of professional competencies, ethical standards, and continuing education. Peer mentors assist people with practical matters, such as finding housing or adjusting to life outside an institution, and they share their own recovery stories to help people learn new coping skills. While the pay varies, they earn, on average, about $15 an hour.2

 

Building A Connection

At sixty-five, Cathy Wrighton has a lifetime of experiences that have given her an unflappable demeanor and unguarded candor. A thin woman with short-cropped white hair and wire-rimmed glasses, she speaks with a twang that fits right in with middle Georgia, even though she’s from North Carolina.

 

She has seen many sides of the mental health system. For years she self-medicated with alcohol and drugs before getting a diagnosis and treatment for major depressive disorder. After working in admissions at the old Central State campus, she became a substance abuse counselor in Georgia’s prison system. She has held other jobs—she was once a wiring technician—but now she shares her recovery skills with justice system–involved people facing mental health and substance abuse challenges.

 

Today she works as a peer mentor a couple of miles down the road from the decaying buildings of the old campus, in a modern, twenty-first-century incarnation of Central State. The newer facility, with a benign-looking front entry and high fences topped by concertina wire, provides forensic mental health care, treating people accused of crimes and found not guilty by reason of insanity or declared incompetent to stand trial.

 

Each day Wrighton maneuvers through the metal detectors and receives a key card to open the heavy locked doors. She walks into the day room, where people are playing cards or watching TV, and meets with her peers in a side conference room. If she visits and someone doesn’t feel like talking, she moves on. Having choice is an important part of the peer model.

 

She works with people who are within eighteen months of their scheduled release, and she asks them to set a goal for their life on the outside. One man wants to raise chickens, so Wrighton has been helping him research chicken coops. How big does it need to be? How much land would it take?

 

Sometimes he looks at the hospital’s greenhouse and imagines it as a chicken coop.

 

“Whatever goal they set is the goal they set. It doesn’t matter what it is. If he wants to be president, it doesn’t matter,” Wrighton says. “It’s the process of the steps they take that matters.”

 

She meets with social workers, and when the care team meets, she provides the peer perspective. But her focus is entirely on building relationships and supporting people in their transition from the institution to the community (which is often initially a supervised group home). Following the peer-based paradigm, she doesn’t refer to them as patients or even clients. She doesn’t read their medical files or ask about their diagnoses—or the criminal charges that brought them to Central State.

 

“It makes no difference,” Wrighton says. “It’s just the connection, right then and there. Whatever they tell us is what we go by.”

 

Georgia’s forensic peer-mentoring program is one of the newest segments of a broad peer-support system. More than 2,500 peer specialists have received certification in Georgia. Some work in hospital emergency departments, supporting people who have survived an overdose or faced a mental health crisis. Others provide services through the Georgia Mental Health Consumer Network or the Department of Veterans Affairs.

 

Forensic peer mentors work with “returning citizens”—people involved with the judicial system who have a diagnosed mental illness (and often also a history of substance abuse) and are making a transition to the community after incarceration. They engage with peers at five state prisons, six day reporting centers, and three mental health treatment courts around the state. Of the 850 people who have been through the forensic mentoring program since it began in 2015, one was rearrested, and another had parole or probation revoked, according to the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD). There were no new convictions. By contrast, about 23 percent of Georgia inmates identified with a mental health condition are reconvicted within three years of being released, according to the Georgia Department of Corrections.

 

A Consumer Movement

Peer support emerged from the mental health consumer movement, a civil-rights push by “psychiatric survivors” that began in the 1970s. Psychiatric maltreatment burst into public view with the 1975 movie One Flew Over the Cuckoo’s Nest, but Judi Chamberlin’s real-life story had a deeper impact on the movement itself. Chamberlin voluntarily entered a psychiatric hospital for treatment of depression in 1966 and was distressed to discover she had lost all control, including the right to leave. She spent the next five months going in and out of six psychiatric hospitals—sometimes by choice, sometimes against her wishes—until she found help from a patient-centered program in Vancouver.

 

She became a core member of the Mental Patients Liberation Front, and in 1978 she wrote an influential book titled On Our Own: Patient-Controlled Alternatives to the Mental Health System.3 Her message: Patients should have a role in shaping their own treatment.

 

Twelve years later, thirty people seeking that greater voice gathered in an Atlanta suburb and formed the Georgia Mental Health Consumer Network (GMHCN). “It started with a humble advocacy perspective,” says Tucker, who joined the organization about five years later. “But it didn’t take long to realize we needed to do some other thing besides just advocacy.”

 

GMHCN began holding conferences for mental health consumers and established a twelve-step program called Double Trouble in Recovery for people with a psychiatric diagnosis and substance abuse issues.

 

By 1999 the group had grown and gained enough stature to represent the consumer voice with the state. Larry Fricks, a cofounder of GMHCN, had become the director of the Office of Consumer Relations in what was then the Georgia Division of Mental Health (DMH, now the DBHDD). He collaborated with Wendy Tiegreen, a DMH program director, to integrate peer support into mental health services.

 

Moving patients from hospitals to the community presented a huge challenge—but it wasn’t the only one. A state audit released in February 1999 raised concerns about the delivery of care in community-based programs.4 Patients at community mental health centers attended day-long programs every weekday that the audit found were “primarily diversional activities with little therapeutic value.” While such programs evolved as an alternative to hospitalization, they virtually guaranteed that the participants could not work or otherwise lead an independent life.

 

Fricks was on an advisory board for the pending Surgeon General’s report on mental health, and he knew that Surgeon General David Satcher would be calling for a new approach to care. The report would include an emphasis on recovery and a section on the consumer movement, including the role of consumers as paid staff.5

 

Fricks and Tiegreen convinced the Centers for Medicare and Medicaid Services (CMS) to reimburse for peer-based services; the approval came about five months before the release of the Surgeon General’s report. Georgia created the first system of certification for peer specialists in 2001, and in 2007 CMS issued a letter with guidance on peer-support services to encourage other states to follow that model.6

 

Peer-support providers—defined as “self-identified consumers who are in recovery from mental illness and/or substance use disorders”—should receive training and certification based on state requirements, CMS said in the letter. They should be supervised by a “competent mental health professional,” and their services should be part of a comprehensive plan of care.

 

Gena Garner, who now directs the peer-mentoring program for the consumer network, became one of the first peer-support workers in Georgia. She and two other peer-support providers entered locked units in the imposing buildings of Central State Hospital after the Olmstead decision, with the challenge of helping people prepare for life on the outside.

 

It was like encountering dozens of Rip Van Winkles at once. Some of the patients, living at Central State as long as fifteen years, had never used a cell phone or television remote control. They had no idea how to seek a job. Garner broke it all down into small steps. “We would teach people how to count money,” she says. “We would start from the very basics if they want a job. Do you have an ID? Social Security card?”

 

Simple moments became transformative, such as an outing to see Christmas lights and have hot chocolate. Mental health clinicians are ethically prohibited from building social bonds with their patients, but peers offer a personal connection. Garner was initially told not to share her story of recovery, but that is now a core part of peer support.

 

“I have not seen a single thing that has impacted public-sector mental health globally more than peer support,” says Tiegreen, who is now director of Medicaid Coordination and Health System Innovation at the DBHDD. “There’s not been a single thing that has changed things more than just that concept of recovery and hope.”

 

Fitting In The Continuum Of Care

The rise of peer support is a bright spot in an otherwise strained behavioral health system.

 

The rise of peer support is a bright spot in an otherwise strained behavioral health system. By 2030 the nation will have a shortage of 5,500–9,050 psychiatrists, depending on assumptions about demand, according to a 2018 analysis by the Health Resources and Services Administration (HRSA).7

 

But the problem isn’t evenly distributed. Some states actually have a surplus of psychiatrists, while others have a deeper shortage. HRSA projects shortages in most states for other behavioral health workers, including psychologists, social workers, and addiction counselors.

 

By definition, peer-support providers are nonclinical, so they can’t fill the gap of other mental health professionals. But increasingly, peer specialists work in programs designed to avert crises. For example, the Georgia Mental Health Consumer Network runs a 24/7 warmline, offering people phone support—a way to connect with someone with lived experience who can provide encouragement, resources, or just an empathetic ear. If it is a mental health emergency, peer-support providers can transfer them to a crisis hotline or contact mobile crisis services.

 

“Within the continuum of care, we’re seeing more prevention and early intervention,” says Brian Hepburn, executive director of the National Association of State Mental Health Directors.

 

Most clinicians embrace the new paradigm. The American Psychiatric Association issued a position statement in 2018, calling peer support “an essential component of recovery-oriented systems of care.”8 The Substance Abuse and Mental Health Services Administration (SAMHSA) funds peer-based recovery programs and statewide consumer networks, and even declares on its website, “Peer Support Recovery Is the Future of Behavioral Health.”9

 

Research points to the benefits of peer support, although it can be hard to quantify the impact. A 2013 systematic review of eleven randomized controlled studies, published in Cochrane Database of Systematic Reviews, concluded that “employing past or present consumers of mental health services as providers of mental health services achieves psychosocial, mental health symptom and service use outcomes that are no better or worse than those achieved by professional staff in providing care.” The researchers from Monash University, in Melbourne, Australia, noted two studies showed “a small but significant reduction in crisis or emergency service.”10

 

A somewhat broader literature review in 2014 found that while studies “demonstrated promising outcomes, research is still needed to show their effectiveness with greater confidence.”11

 

Evidence continues to accrue. A 2018 study randomized seventy-six patients at Yale-New Haven Psychiatric Hospital who had severe mood or psychotic disorders and at least two hospitalizations in the past eighteen months. Those who received peer mentoring went an average of 270 days without readmission, compared with 135 days for the control group with standard care.12

 

Peer mentoring can boost both physical and mental health—and, in fact, peer programs have integrated “whole health” management. Emory University researchers conducted a randomized study of the Health and Recovery Peer program, a peer-led self-management program for general medical conditions. Four hundred participants were recruited from community mental health clinics; they had serious mental illness and at least one chronic medical condition. Patients who received peer mentoring reported greater improvements in their health-related quality of life, for both physical and mental health.13

 

“[Peer support] has been an exciting development in mental health,” says lead author Benjamin Druss, professor and Rosalynn Carter Chair in Mental Health at the Rollins School of Public Health at Emory University, in Atlanta. “I would challenge health systems to think about what comparable [medical] models would look like.”

 

Focus On Recovery

The brown bungalow with a wide front porch looks like just any other house in the neighborhood north of Main Street in Cartersville, a small city, 140 miles from Central State in the foothills of the Blue Ridge Mountains in north Georgia. But to the people who stay here weekly or visit for daily activities, this Peer Support Wellness and Respite Center is a haven.

 

“This is my family,” says Eric Schultz, thirty-nine, who has come on a Saturday to hang out, watch TV, and talk with his friends.

 

“This is my safe place. This is where I can be myself,” says Lynne Smith, sixty-one, who spent much of her life in psychiatric hospitals or group homes.

Coming to this center helps keep them on track, coping with anxiety and other emotions that can trigger a downward spiral. The Georgia Mental Health Consumer Network runs five centers throughout the state, supported by about $2 million annually in state money and federal block grant funds. They represent a realization of the dream of the mental health consumer movement. After first having an “proactive” interview with a staff person—an introductory conversation that establishes a relationship during a period of wellness—people with mental health challenges can stay here for up to seven nights within a thirty-day period.

 

Peers run the respite center. No clinicians visit. No one has medical files. No one discusses a diagnosis. Participants cannot be referred to the center; they must come on their own. Visitors sign in at a small desk in the foyer and can stay in one of three rooms. They can sleep as late as they wish, stay up as long as they want. Kitchen cabinets are stocked with snacks. There are no mealtimes. They receive $70 for groceries and a trip to the grocery store, and they prepare their own food.

 

Days are filled with activities ranging from Double Trouble in Recovery meetings to art projects or “wellness walks.” The walls are covered in positive messages: Attitude is everything. Every day is a gift. Accepting hardships as the pathway to peace.

 

Each peer writes a WRAP—Wellness Recovery Action Plan of coping skills. To counteract tense or negative feelings, the WRAP might remind someone to take a walk or listen to music or work a crossword puzzle.

 

Being surrounded by positive messages of recovery, connecting with people who have lived through similar episodes—sometimes that is enough to pull people back from the brink of a mental health crisis. Smith remembers the first time she was hospitalized—at Central State Hospital—when she was just seven years old. She had tried to kill herself. She was diagnosed with schizophrenia and later rediagnosed with bipolar disorder, anxiety and panic disorder, and posttraumatic stress disorder (PTSD).

 

She lives on her own, across the street from the respite center. She has gone four years without being hospitalized. “I am proof that recovery is possible,” she says.

 

People with a history of mental health and substance abuse often have fraught relationships with family and friends. The respite center gives them connection without judgment. “We do everything with respect,” says Roslind Hayes, statewide coordinator of the respite centers.

 

Advocates for peer support push back against a system that views people with mental illness as incompetent to make decisions for themselves.

 

Advocates for peer support say that they are not anti-psychiatry. Many have personally benefited from treatment, and peers at the respite center say they continue to see psychiatrists and psychologists—or even have occasional stints in a hospital. But they push back against a system that views people with mental illness as incompetent to make decisions for themselves.

 

In Georgia, changing the system to allow for greater independence has been slow and difficult. The US Department of Justice launched an investigation after a 2007 series in the Atlanta Journal-Constitution detailed troubling deaths and “a pattern of neglect, abuse, and poor medical care” in the state’s seven psychiatric hospitals.14 The investigation found unnecessary confinement and inadequate care that violated federal law and patients’ constitutional rights.15 Through settlements in 2009 and 2010, the State of Georgia agreed to create an extensive system of community services, including peer support, for people with mental illness or developmental disabilities.16

 

It felt a bit like a reverberation from the past. A 1959 Atlanta Constitution article describing horrific conditions at what was then Milledgeville State Hospital led to a shake-up in Georgia’s mental health system.17 The hospital, renamed Central State in 1967, reduced its patient population, and Georgia began opening smaller regional psychiatric hospitals in 1968. The Central State Hospital Redevelopment Authority now seeks buyers with innovative ideas to repurpose vacant buildings and land on the old campus, which once encompassed 2,000 acres.18

 

As of June 2018 the state had only 1,110 adult psychiatric patients in public hospitals; 628 of them were in forensic units.19 Georgia maintains community support teams, crisis service centers, and crisis respite apartments, among other community services. In addition to the Peer Wellness and Respite Centers, it funds twenty-three peer-run addiction recovery support centers.

 

“We want to move from a crisis-driven system to a recovery-focused system,” says Tony Sanchez, director of the DBHDD Office of Recovery Transformation.

 

A New Language Of Recovery

The peer-support message of hope and strength reshapes the conversation around mental health. But creating a new workforce comes with challenges.

Each state sets its own criteria for peer specialist training and certification. The Government Accountability Office studied programs in six states and, in a 2018 report, cited six leading practices for certifying peer specialists: systematic screening of applicants; conducting core training in person; incorporating physical health and wellness into training or continuing education; preparing organizations to use peers effectively; requiring continuing education; and engaging peers in the leadership and development of certification programs.20

 

Some states have wrestled with these issues. In California thousands of peer-support workers follow a patchwork of rules set by county governments. A bill is now moving through the state legislature to set up a statewide program. Former Gov. Jerry Brown vetoed a similar bill over cost concerns, but Gov. Gavin Newsom is expected to sign the current version.

 

The California Department of Health Care Services has been reluctant to create a new system of certification, says Sally Zinman, executive director of the California Association of Peer Run Programs. “We’re talking about peers doing unique things that nobody else can do except peers. I don’t think they understand that,” she says. “I don’t think they see it as the value it is.”

 

Mental Health America (MHA), a national advocacy organization, launched a program of national certification in 2017, geared toward peer specialists who already have state certification. MHA hopes that a national program will encourage private insurers and Medicare to reimburse for peer support.

 

“We believe peer support is really powerful, and as many people as could benefit should have access to it,” says Kelly Davis, director of Peer Advocacy, Support, and Services at MHA.

 

Beyond certification, the concepts of peer support have already altered the language of mental health treatment. Numerous organizations, from SAMHSA to the American Psychological Association, have set recovery as the goal for people with serious mental illness.

 

That contrasts with the darker days of psychiatry, when some people were considered incurable and were locked up for the remainder of their lives. Central State Hospital has six cemeteries with unmarked graves. About 25,000 people were buried on the grounds over its history.17

 

Every year the Georgia Consumer Council, an organization of peers, holds a commemoration at Central State and lays a wreath in a cemetery. People often come to pay their respects privately as well. On a recent visit, Cathy Wrighton and Gena Garner stood in a clearing in the woods under a blanket of steel-gray clouds and felt the weight of the past. Rusted iron markers seemed to protrude haphazardly across the ground, some of them hammered so far into the hard earth that only a few rounded inches showed.

 

Once, these were neat, numbered rows. But the metal stakes toppled or got in the way of lawn mowers, and maintenance workers uprooted hundreds of markers. Even in death, the people sent to Central State Hospital were pushed aside and tossed away.

 

That’s why Wrighton feels dedicated to her work as a forensic peer mentor, helping people who have been incarcerated or hospitalized for years return to the community. “I see them going where I am,” she says. “Working, living life. Enjoying life. Not coming to an end like this.”

 

NOTES

 

https://www.healthaffairs.org/doi/10.1377/hlthaff.2019.00503