Life With Mental Illness

ABOUT 6 YEARS AGO, Joe Leber's life began to spiral downhill. The 56-year-old lived at home with his mother in Phoenixville, PA. Little by little, he began to withdraw from friends and activities he enjoyed in his spare time - even fishing, his favorite pastime.

When he was a teenager, he needed treatment for mental illness. After he received therapy and medication, he was able to function independently for 20 years. He was able to work in the food service industry and had been married.

In 2005, when Leber recognized he needed help, he sought treatment from a mental health professional. His therapist had experience with the recovery model in mental illness, an evidence-based philosophy and management approach that has yielded positive outcomes in the public sector of mental illness treatment for more than 2 decades. He recognized Leber's treatment plan could be augmented with community programs.

Intentional Friendships

A treatment goal for Leber - established collaboratively with his therapist - was to decrease his withdrawal and isolation, and return him to activities he enjoyed previously with others. His therapist was familiar with Compeer, a program administered in the region by the Mental Health Association of Southeastern Pennsylvania (MHASP), and wrote a referral for Leber to join the program.

Established more than 35 years ago in Rochester NY, Compeer has 80 affiliate programs across the U.S., Australia and Canada. The mission of the program is "to match mental illness consumers with volunteers in intentional friendships." The program is often referred to as "getting along with your life with a psychiatric diagnosis."

Program Requirements

About the same time Leber contacted the local Compeer program, Robbin Eicher of Wayne, PA, had just retired as a human resources director. His neighbor told him about the volunteer program at Compeer. He decided to find out if he met the criteria to become a "friend" volunteer.

"I knew people in the mental health field, and in my job I hired and trained many with mental illness and mental developmental disabilities," Eicher said.

To create matches in the Compeer program, the staff interviews the consumer and the volunteer separately. The volunteer provides references and must pass a criminal background check. Each volunteer who meet the criteria is matched with someone of the same gender who lives nearby.

"Matched Compeer friends commit to face-to face contact at least 4 hours every month, building their relationship for at least 1 year and keeping the Compeer staff informed regularly of the pair's activities," explained Rob Chisholm, CCP, certified Compeer professional and director of the program Leber utilized.

Since 1999, when Chisholm began the program, more than 260 recovering men and women have been matched in relationships with volunteers.

"Friendship wins over social isolation all the time," summarizing Compeer's success. Chisholm has been matched with a recovering person since 1991.

Good Match

It's been 5 years since Leber and Eicher were matched as Compeers, and both report the relationship continues to grow each year. The pair shares common interests and both agree they can be open with one another.

When Leber heard about the program, he decided to learn more about it.

"I decided I would take a chance when I was asked to meet Robbin," he recalled. "We were about the same age and enjoyed some the same activities - fishing, cars and browsing in book stores."

"Joe and I meet once or twice a month to do errands or maybe attend one of the Compeer-sponsored activities like picnics, bowling and pizza parties. We talk on the phone whenever one of has a need to talk," Eicher said.

"If Joe wants to talk about treatment issues, I don't advise him. I suggest he talk to his therapist or provide other resources," Eicher added.

In Search of a Definition

The Compeer program is an example of a recovery program that has sustained positive outcomes for 3 decades. Recovery, an important transformation in the lived experience of those with mental illness, is not new. Yet there remains confusion about what recovery is, not only among consumers, families, professionals and the public - but even with policymakers, healthcare providers and legislators at all government levels.

On May 11, 2011, the Substance Abuse and Mental Health Services Administration, (SAMHSA) issued the unified, working definition of recovery: "Recovery is a process of change whereby individuals work to improve their own health and wellness and to live a meaningful life in a community of their choice while striving to achieve their full potential."¹

The need for standardization of the definition and principles of recovery, according to SAMSHA, is to "assure access to recovery-oriented services for those who need it, as well as reimbursement to providers." SAMSHA is directed by Congress "to target effectively substance abuse and mental health services to the people most in need."²

At the same time SAMSHA issued the working definition of recovery, it released amended principles of recovery, which now include the following characteristics:

• person-driven;

• occurs via many pathways;

• is holistic;

• is supported by peers;

• is supported through relationships;

• is culturally-based and influenced;

• is supported by addressing trauma;

• involves individual, family, and community strengths and responsibility;

• is based on respect; and

• emerges from hope.¹

The SAMSHA recovery update also emphasized there is no set time requirement for recovery, stating recovery is recognized as an "individual process whereby each person's journey of recovery is unique and whereby each person in recovery chooses supports ranging from clinical treatment to peer services that facilitate recovery."¹

Recovery's Roots

In 1993, William Anthony, PhD, executive director of the Center for Psychiatric Rehabilitation at Boston University, stated, "The seeds of the recovery vision [of mental illness] were sown in the aftermath of the era of deinstitutionalization in the 1960s and 1970s. The concept of recovery, while quite common in the field of physical illness and disability, has received little or no attention in practice and research with people who have severe and persistent mental illness."

Anthony compared patients with spinal cord injuries who recover, but are not cured, to patients with mental illness who he believed could recover with a new approach to management of their symptoms and behaviors.³ Since Anthony described his concept of recovery in mental illness, critics have assailed his explanation of recovery, saying it is an old concept, a fad with very few consumers improving their lives - and, further, giving them false hope mental illness can be cured.⁴

Seminal Research

Anthony and other colleagues who early on supported the recovery process in mental illness were encouraged when a number of research studies conducted in the U.S and other countries reported patients with chronic mental illness, specifically schizophrenia, improved when recovery models of care were implemented.

In 1987, Courtney Harding, PhD, an investigator for the National Institute of Mental Health (NIMH), published two long-term companion studies of patients with schizophrenia treated in state hospitals in Vermont and Maine. At the Vermont hospital, 269 patients were selected for the study. All had been hospitalized for more than 5 years; some of the most severe had regressed to speaking in animal-like sounds. This group was involved in an innovative model rehabilitation program, with community supports already in place. The goal for these patients was to promote self-sufficiency and continuity of care.

At the Maine hospital, 269 patients received the standard care for patients with schizophrenia at the time.

Harding's criteria for recovery had four components:

1. having a social life indistinguishable from your neighbor;

2. holding a job for pay or volunteering;

3. being symptom-free; and

4. being off medication.

In the Vermont group, those studied had a 62 percent to 72 percent improvement of symptoms. Half of the cohort had met all four of Harding's criteria; the other half, three out of the four. The patients at the Maine hospital, where there was no significant change in treatment, showed improvement in their symptoms, although the change was not as great as those patients in the Vermont study.^4,5

Harding's research findings indicated rehabilitation, self-sufficiency and community integration promoted significant improvement and recovery rather than traditional treatment models of maintenance, medications and stabilization.

It should be noted Harding's criteria for recovery included the individual being able to discontinue medication. This is not a criterion for recovery programs, generally speaking. The critical piece regarding medication use in recovery programs is it is a shared decision between the consumer and the clinician. Some consumers are on psychotropic medications, others are not and others may be at times, along with other interventions.

Surgeon General's Report

The one point about recovery in mental illness that consumers, clinicians and mental health experts agree upon is the impetus for the movement was largely due to the growing organization of consumer and family organizations at the grass-roots level.

"Mental Health: A Report of the Surgeon General," was a landmark 1999 release with SAMSHA and NIMH named as the primary investigators. A principal finding: "Organizations representing consumer and family members, though divergent in their historical origins, origins and philosophy, have developed important overlapping goals: overcoming stigma, preventing discrimination, promoting self-help groups and promoting recovery from mental illness."⁶

The report also emphasized that on a systems level, the consumer movement, led primarily by ex-patients and survivors of the mental health system pre-deinstitutionalization, had "substantially influenced mental health policy to tailor services to consumer needs. This influence is described by consumers and researchers as 'empowerment.' A concept from the social sciences, empowerment has come to be defined by researchers as 'gaining control over one's life in influencing the organizational and societal structures in which one lives.'"⁶

Empowerment remains the cornerstone of the recovery movement in mental illness today in the U.S. and other countries.

Recovery Pioneer

Mary Ellen Copeland, PhD, MS, MA, is a pioneer in mental health recovery. But that is not how she always saw herself.

"Not so many years ago, I was Mary Ellen Copeland, manic depressive. Because I had the label, my family was told not to expect much of me. I learned not to expect much of me. I became dependent on the mental health system to maintain - at best - a minimal lifestyle and I never thought about the future," Copeland told ADVANCE in 2004. "Now I see myself through a different lens that is Mary Ellen Copeland, educator, mother, wife and woman."⁷

Convinced self-help strategies were a major component in the management of psychiatric illness, Copeland turned to publishing books and resources that provide guidance to people with mental illness disabilities, victims of abuse and other psychiatric traumas. The author credits her own long-term recovery to many of the coping strategies she learned from others who had similar difficulties.

In 1996, Copeland published the Wellness Recovery Action Plan (WRAP), a leading resource for self-management in mental illness. Recognized as an evidence-based practice in recovery, WRAP is a model program used in many programs in this country and worldwide.

WRAP program components include:

• wellness toolbox;

• daily maintenance plan;

• identification of triggers;

• identification of personal warning signs;

• awareness when things are breaking down;

• creation of a crisis plan (advance directives in treatment plan); and

• creation of a post-crisis plan.

Copeland explained, "WRAP is really a simplistic process. The individual looks at his resources - wellness tools - and then determines what he has to do to keep himself well."

WRAP programs can be implemented on a one-to one basis, in peer-group settings and within communities. To be successful, the WRAP program must be implemented in an environment of safety and choice. There must not be any pressure on the consumer, according to Joan Kenerson King, MSN, RN, CNS, a transformation consultant for public health systems.

King, who has worked with the WRAP model for almost 15 years, added a caveat to recovery programs: "If any recovery model is to work, the care must be consumer-friendly and family-centered."

Passionate Consumer, National Leader

At age 19, Joseph Rogers was diagnosed with paranoid schizophrenia and told he couldn't hold a job. Admissions to state and local mental hospitals were frequent. He joined the homeless population.

However, when he learned his diagnosis was bipolar disorder, and received treatment and a place to stay at a YMCA near Philadelphia, Rogers' world started to improve. Eventually, he was hired as an outreach worker at MHASP, then a small outreach agency with only a dozen staff members.

It didn't take Rogers long to recognize he had found what would become his life's work. In 1984, under the MHASP auspices and with federal funding, he founded Project Share, which became an umbrella organization for programs for essential services such as peer support, drop-in centers, housing, homeless outreach, mentoring and job training. In 1997, Rogers was appointed executive director of MHASP, where he set up more than two dozen consumer-run programs, organized the first national consumer conference and advocated successfully with others for the closure of state hospitals.

Rogers currently serves as MHASP's chief advocacy officer. He is now working on a pilot program, Consumer Recovery Investment Funds for Self-Directed Care (CRIF SDC) in Delaware County, Pennsylvania. In the program, mental health consumers with the support of a MHASP peer coach choose how they want to spend their recovery funds - such as education, housing, etc.

Miles to Go

Recovery in mental illness has become reality for many consumers for more than 25 years. Many individuals have been empowered to direct their personal care. However, many still have never heard of recovery.

Until the stigma of mental illness is reduced, many people who need care won't receive it and the public will maintain its stereotyping of mental illness. Advocacy in recovery translates into neighbors, family members, friends, co-workers and those in high-profile positions being open with the public and letting people see the lived experience of mental illness: a mother treated for anxiety cares for her children effectively; a physician with a history of depression treats his patients competently; and neighbors with other diagnoses are responsible citizens of their communities.

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Kay Bensing is senior staff nurse consultant at ADVANCE. The author has completed a disclosure form and reports no relationships relevant to the content of this article.