It was the late 1990s, and there was little published evidence on the efficacy of peer supports. Georgia’s Wendy Tiegreen had grown up in behavioral health… literally. Her father led a non-profit community mental health center, and she had seen the volunteer corps of people in recovery firsthand. These individuals understood the level of pain others were experiencing and were frequently providing informal supports. Wendy had heard of a couple of pockets of similar programs in New York, but that was about it.
Five years earlier, Bill Anthony and the psychiatric rehabilitation movement had declared the 1990s “the decade of recovery.” But, unfortunately, the concepts of “what’s strong, not what’s wrong” and peer supports had simply not made any material headway into mainstream mental health. In over 2,000 community mental health centers across the country, “recovery” was a word seldom used and peer support staff did not exist.
At the time, Wendy was one of the program leaders at the Department of Behavioral Health & Developmental Disabilities (DBHDD) which occupied the middle floors of the 2 Peachtree Street high rise in downtown Atlanta. Larry Fricks’ office was just down the hall. He was the director of the Office of Consumer Relations and Recovery and had helped co-found the Georgia Mental Health Consumer Network (GMHCN), which beginning in 1992 had since hosted one of the largest statewide annual conventions in the nation of people receiving mental health services.
From the beginning, GMHCN had surveyed its membership of “consumers” and publicized their annual top five objectives, with increased employment opportunities continuously holding the top spot. One of their most acclaimed successes nationally was supporting nearly 3,000 individuals in finding meaningful work in Georgia communities by the August 1999 convention.
It was also in 1999 that the Surgeon General’s Report on Mental Health was published. Another Georgia connection, Dr. David Satcher was also US Secretary of Health at the time and a founding director and senior advisor to the Morehouse School of Medicine in Atlanta. This key report was important for many reasons, but in particular, it introduced “self-help groups” and peer supports as an emerging evidence based practice and chronicled the history of the recovery movement.
Satcher and company described in detail the consumer movement of the 1970s and its protest of the indignities and abuses experienced in psychiatric inpatient facilities. They trace the history back to former patients Clifford Beers and Judi Chamberlin. In 1908, Beers wrote “A Mind That Found Itself” and ignited the first reform movement. In the 1960s, Chamberlin, with a similar asylum experience and motivated by the civil rights movement, became one of the primary leaders forming liberation organizations to advocate for increased self-determination and basic rights.
In 1978, Chamberlin wrote “On Our Own,” which the Surgeon General’s report referred to as a “benchmark in the history of the consumer movement.” It led to much more widespread understanding of the extra difficulties of experiencing mental health challenges and what services were really like. Over the next 20 plus years, Chamberlin was successful in raising the bar, with this inclusion in the 2000 report from the National Council on Disability, “Patient privileges, such as the ability to wear their own clothes, leave the confines of psychiatric facility, or receive visitors, should instead be regarded as basic rights.”
In the late 1990s, it would be several more years before SAMHSA would recognized peer support services and Consumer operated programs as evidence based practices, which they later did in 2002 and 2009, respectively. Meta Services was beginning to hire peers in Phoenix, Arizona and formulate key concepts around a recovery organization, but it would be a few years before the impact was known outside the Southwest, and the Company would not change its name to Recovery Innovations until 2005.
In this context, with the timing just right, Wendy Tiegreen and Larry Fricks joined forces with a mission to advance peer supports and recovery in Georgia. In 1999, they achieved a striking breakthrough, and successfully brokered with CMS (federal Medicaid) the first statewide provision of billable Peer Support Services. Their crystal clear and yet audacious goal was to build out the lived experience voice and in so doing to also expand and transform the thoughts and minds of administrators and policy makers, while creating a new employment niche for peer providers.
These Georgia innovators quickly realized that their victory would be short-lived without the necessary infrastructure, and over the course of the next 18 months, they led the construction of the curriculum and credentialing required for success. In December 2001, 35 individuals gradated in the first class of Certified Peer Specialists. Throughout this system redesign, the DBHDD team focused not only on peer supports but on what creates recovery and how to build environments conducive to recovery, as they saw these elements as crucial to a successful implementation.
15 years later, Georgia is a national leader with $20 million per year in utilization of services provided by Certified Peer Supports. They have continued to expand the model outside the original core focus, and these services now include peer respite, drop-in centers, wellness centers, and peer supported warm lines. Certified Peer Specialists also serve in administrative roles in addition to the traditional direct services roles. In 2009, Sherry Jenkins Tucker, the Executive Director of GMHCN, was awarded the Mental Health America Clifford Beers award, designated for a “mental health consumer whose service and leadership best… improve conditions for and attitudes toward people with mental health conditions.”
Today, Wendy Tiegreen is the “Medicaid expert for Peer Support” guru, having consulted with 37 states to adopt and implement peer supports as a Medicaid billable service. She has provided technical assistance through CMS, SAMHSA, NASMPHD and the National Association of State Legislators, and averages two to three state visits per year. And… she is not resting on her laurels. Georgia is continuing to expand the application of peer support, with young adult, formal addiction, co-occurring disorders and trauma informed care tracks. Now, she’s turning her attention to extra credentials for health coaching and prevention, as peer supports becomes approved for a whole health approach.
See Link: Georgia’s Community Behavioral Health Provider Manual which, within, defines the state’s various Peer Support services.
After their success in Georgia, Larry Fricks partnered with Ike Powell and launched the Appalachian Consulting Group (ACG), received a SAMHSA Lifetime Achievement Voice Award and became an integrated care and recovery leader with the National Council for Behavioral Health, appearing on the Today Show in 2008 after his story was included in the book “Strong in the Broken Places.” Last month, Larry gave the keynote at the 25 year celebration of the GMHCN annual conference and reviewed the success, from grassroots to national innovation and from pioneering certified peer specialists to documentation of reduced hospital admissions and crisis costs.
See Link: SAMHSA-HRSA Center for Integrated Health Solutions, operated by the National Council for Beahvioral Health (Larry Fricks is the Deputy Director)
Almost 20 years later, the published evidence of peer supports has grown but we still have a long way to go in building the rigorous research required to take the program to scale.
To be fair though, I would argue that the same could be said for traditional mental health programs (counseling, case management, medical management, etc.) During the recession, from 2010 to 2012, my team at a large health plan closely tracked 6,000 individuals with serious mental illness who lost access to the core services described above and the vast majority experienced little change or fared slightly better in their two year absence (the algorithm included over 15 key indicators including community outcomes and costs).
If we used the world happiness scale as our index instead, the existing infrastructure of traditional mental health services would be strongly challenged on every core metric:
- Income per person
- Social supports and connectedness
- Health life expectancy
- Freedom to make life choices
80 to 85% of those with serious mental illness are unemployed. A significant number live alone, and don’t have someone to talk to about their problems or go out to dinner with on a Friday night. The years of potential life lost as a result of heart disease, diabetes, COPD, suicide and accidental deaths puts them on par with individuals in lower income countries. And, finally, we are seeing a call for increased assisted outpatient treatment (AOT), a euphemism for court-ordered and mandated outpatient care.
By contrast, it’s self-evident that hiring people with lived experience and providing them training as Certified Peer Supports would positively impact several of the happiness core metrics.
So, again, where are we with the evidence on peer support?
Wendy and I had a conversation with leadership from the National Institute of Mental Health recently to review the work completed to date and request funding be targeted at more rigorous outcomes research going forward.
Over the last 20 years, Wendy has compiled and maintained a quick guide to peer supports outcomes and credibility, and she believes much of this work has been very good, but we need more work and that is very challenging when the resources to date have required stringing together funding from occasional grants.
I was working in the Georgia behavioral health system in the late 1990s and remember what it felt like as these dynamics came together. Like today, there was resistance and many naysayers, but Wendy, Larry and countless others made tremendous breakthroughs, in large part because of the pioneers before them who had made it possible.
It just feels similar now in that we as a nation are poised to make the same kind of full scale advances to peer supports and recovery that Georgia and Arizona did in the late 1990s and early 2000s. When the White House takes notice, I think maybe something special is occurring.
Earlier this year, Symplur participated in a White House workshop which was focused on engaging participants as partners in research. Symplur is an analytics and big data company interested in the intersection of social media and healthcare. After discussions with Obama administration officials, they went back and began “building on the effort of many to strengthen the voices in healthcare that are too often ignored.”
For those of us in behavioral healthcare, the word “patients” is off-putting, but the essence of Symplur’s findings are that healthcare conferences don’t value the input of individuals who receive services. Only 1 in 100 influencers is a patient, and the depressing statistic has been stagnant since 2013. On the question of evidence for the approach, the Symplur team concludes, “The inherent value and profit of partnering with patients for healthcare conferences should at this point be self-evident.”
Last Thursday was a watershed moment at the White House, which has been the host of upteen mental health summits. This one was the last in a series on Making Health Care Better, with previous sessions addressing diabetes and heart disease, and this one focused on suicide prevention. And, for the first time, a panel was explicitly brought together to focus on the value of lived experience (see picture at beginning of blog).
Dr. John Draper moderated the discussion and introduced pioneers who came out of the closet even prior to the late 1990s when Wendy and Larry began their work . These leaders included Heidi Bryan, Leah Harris and DeQuincy Lezine, the latter a psychologist who leads the newly founded lived experience division for the American Association of Suicidology.
He concluded his opening remarks with the question, “Looking for evidence?”
And, as he scanned the panel of peer leaders, his answer, “Look here.”