In our recent blog, Origins of Peer Support for Individuals with Mental Illness, we discussed how the value of peers in support of the mentally ill has been recognized for a very long time, but its popularity varied since its first reported use in France in the 1800s. The voices of those with serious mental illness were finally being heard, helping change attitudes from professional protectiveness to “Nothing about us without us.” In this section we will discuss the more recent history of peers in the United States and how the growth of peer support varied between different countries.
As more people embraced the concept of recovery, some were successful in achieving independence. It became clear that they had something unique to offer others who were just beginning the journey to recovery. So began the revival of “peer support.” A concept new to mental health care, peers had already been part of other aspects of medical care in areas such as cancer and HIV treatment. Alcoholics Anonymous is founded on the principle of someone who has “been there,” helping someone become sober. Indeed, the term “recovery” was borrowed from the addiction community.
Substance Abuse and Mental Health Services Administration (SAMHSA) has defined a peer worker as “a person who uses his or her lived experience of recovery from mental illness and/or substance use disorder, plus skills learned in formal training (evidence-based interventions, such as Wellness Recovery Action Plan, Seeking Safety, Cognitive Behavior Therapy, Motivational Interviewing), to deliver services in behavioral health settings to promote mind–body recovery and resilience.”
The unique contribution of lived experiences presented a challenge for providers who were trained to reduce symptoms and improve functionality. Few providers were skilled at helping people with serious mental illnesses “achieve meaningful lives” or integrate the patient’s wants and desires into treatment plans. Setting aside the restrictiveness that was widespread in healthcare during this time, many practitioners made the argument that mental illness was different than other illnesses when it came to patient input. Practitioners believed that in the case of the mentally ill, the very organ needed to make rational decisions about treatment, the brain, was the one affected by the disease. The argument went something like, “a diabetic can make good decisions about her disease but can someone with schizophrenia?”
Another event that contributed to the empowerment of the mentally ill was the creation of the National Alliance for the Mentally Ill (NAMI) in 1980 (Geller, 2000). By the mid-1980s, NAMI and its affiliates were already making an impact on public policy.
The American recovery movement was greatly influenced by psychiatric rehabilitation. The goal of psychiatric rehabilitation was to help people overcome functional limitations due to their illnesses. While this may seem completely rational to anyone in the United States healthcare system, the perspective is a bit different from other countries. Mary O’Hagen (2009) is a New Zealander with lived experience who has written on the topic of recovery. Her view of the American recovery process is summarized here:
“Recovery at that time was most often portrayed as an intensely personal journey; coming from America’s strong cultural context of Christianity and individualism, it seemed almost like a form of secular salvation. At the same time, some people in the user/survivor movement in America were starting to talk recovery. Their purpose did not arise so much from an assumption of personal deficit as from an assertion of their right to self-determination.”
“Recovery” was not as much about “fixing what was wrong” as it was about taking control of one’s life. Shery Mead (2016), another writer with lived experience described it as follows:
“Becoming a chronic mental patient was an insidious process. I was so tired and so discouraged. In hospital settings, I got messages like you know you need to be here, it’s for your own good etc. It was tempting to buy into the diagnostic system; then having something wrong with me would somehow justify what I had been feeling. And it just happens so fast. Before you know it, they’ve defined your life, your “goals,” and your friends. They’ve told you what to expect, and they’ve taught you to comply.”
Like the United States, New Zealand’s recovery experience was influenced by that country’s cultural history. New Zealand has been a world leader in overcoming its colonialist history especially in relation to its indigenous people, the Maori. The Maori have become integral to all aspects of life in New Zealand including the recovery movement. Unlike the United States, where much of the recovery movement evolved from the psychiatric rehabilitation area, recovery in New Zealand arose from a community and social grass roots movements, often in the Maori community, with little involvement from the traditional psychiatric community. It was characterized by a greater emphasis on the social aspects of recovery. In fact, O’Hagan (2002) wrote that the term “recovery” almost didn’t make it into the vocabulary of the recovery movement of New Zealand at all. The only reason it did was because no one could come up with a better term. Rather than change the name, they chose to redefine it to fit more closely with New Zealand ethos and culture. As O’Hagan (2002) summarized,
“Some people had other concerns about recovery that went deeper than semantics: first, that recovery is an import from America; second, the Americans, in emphasizing recovery as an individual process, have seemed to overlook that it is a social process as well; and third, that recovery in America evolved out of psychiatric rehabilitation and was perhaps driven more by professionals than by service users.”
In another article, O’Hagan (2009) summarized a major difference between the recovery community in New Zealand and the professional provider community:
“In comparison to a century or more ago, people seek many more answers to human problems from state-authorized professionals and services. In some respects, this has been of benefit. But dependence on deficits-oriented professionals and services, with their reputed monopoly on expertise has disabled communities and individuals. Traditionally, and in some ways unwittingly, the mental health system has perpetuated its power, resources and beliefs about madness by keeping people stuck in services.”
This view sparked a “service user vs mental health professional” philosophy in New Zealand and to a lesser extent in the United States. Opinions by professional mental health providers were discounted, even ridiculed as out of touch and attempting to maintain a controlling relationship with people who were often experiencing independence for the first time. This “them vs us” attitude has calmed over the years due to both sides listening to the other but it’s impact can still be felt.
In our next installment of this series, we will discuss how different views of the peer movement still resonate but because of several critical public policy initiatives, peers started becoming aligned with mainstream healthcare.
A look back on the rest of the peer support series:
Wednesday, February 01 | Human Services,EHR Solutions and Operations,Interoperability,Value-based Care
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Wednesday, January 25 | Thought Leadership,Post-Acute Care,Value-based Care
From workforce issues to value-based reimbursement models and legislative & regulatory change, there is plenty for hospice and home care agencies to keep an eye on in 2023. The National Association of Home Care & Hospice (NAHC) President Bill Dombi discusses the trends of the new year and offers his expert advice on how to navigate the coming months.More