His reaction was definitely not one I was anticipating: he looked disgusted, ready to spit. It was 2010, and I had just been blown away at the NAMI Arizona annual conference by Phil Pangrazio’s keynote. Phil is President and CEO of the Arizona Bridge to Independent Living (ABIL). Phil, himself disabled, oversees $30 million in a wide array of programs designed to empower people with disabilities to achieve or maintain independent lifestyles within the community.
After his keynote, I was excited to share with him the work we had accomplished in the Phoenix area, boasting five distinct Peer Run Organizations and an award-winning youth program, MyLife. We were moving from voice to leadership and from participation to action. We were providing meaningful roles at the table, and 2010 Arizona continues to stand in contrast to large parts of the country where peer roles are seen as a liability, still limited to janitorial or administrative functions, or seen only as a marketing tool.
Troubled by the disapproval I observed on Phil’s face as I described these programs, I asked for his feedback, and he explained in one word: “tokenism.”
Phil went on to say that in the disability field, the leaders are disabled. Unlike mental health, where clinical professionals and administrators invite “consumers” to the table, in his world, individuals with disabilities run the table, and the culture and outcomes are dramatically different. Those who have battled through discrimination are painfully familiar with the stages: exclusion, segregation, integration/tokenism, and ultimately inclusion.
Mental health activists like Judi Chamberlin, who originally lit up the field with “nothing about us without us,” borrowed these important slogans from the disability field. Some have attributed their usage and lessons to the anti-apartheid struggle. In the US, we have our first African-American president, but no NFL black coaches were hired in 2013.
Two years after my “ah-ha” moment with Phil, Arizona Governor Jan Brewer restored $39 million in funding for individuals with Serious Mental Illness (SMI) who did not qualify for Medicaid. Up until 2010, the Arnold v. Arizona Department of Health Services (ADHS) lawsuit demanded parity for individuals who had been determined SMI. However, the recession and deep budget cuts required the state legislature to eliminate most of these services (counseling, case management, brand medication, transportation, inpatient care, etc.) in exchange for generic medications and crisis services only.
While these cuts were in place, the Regional Behavioral Health Authority (RBHA) at Magellan Health Services tracked the outcomes for the nearly 7,000 individuals to assess the impact of these severe reductions in services. About 10-15% struggled significantly during this time period. These individuals were receiving the most intensive services, such as Assertive Community Treatment, Court-Ordered Treatment, and staffed residential services. However, to Magellan’s surprise, the majority of individuals faired at least as well or better over the two interim years, despite the drastic reduction in Medicaid services.
Based on these results, the RBHA team approached the state with the idea to do something different, to use the new funding in Maricopa County for a different kind of system, with certified peer specialists and family support roles as key components. ADHS responded positively, stating that this was not only permissible, but expected, and that RBHAs had the flexibility to propose their own plans, such as Magellan’s Toward a Peer Driven System of Care.
First, Magellan dramatically increased the funding for Peer and Family Run Organizations (CHEEERS, STAR, Visions of Hope, Hope Lives, Recovery Empowerment Network, and Family Involvement Center); however, they knew that these key agencies touched fewer than 10% of the total population with Serious Mental Illness in any given year.
The vast majority of services in the RBHA system were delivered through case management clinics operated by four organizations: CHOICES, Southwest Network, People of Color Network, and Partners in Recovery. These agencies operate 21 clinics and employ over a thousand case managers and medical management staff. Each site employed at least one Peer Mentor and one Family Mentor prior to 2012, but in large clinics with client populations ranging from 500 to 1,500, mentors could not make a significant impact.
The RBHA team vowed not to implement a veneer-like program that could be easily removed. Instead, they used the metaphor of making bread…peers would be “baked” into the recovery programs themselves. Could the team in fact change the nature of the service delivery system through the power of peers? Magellan decided to partner with ADHS and use the restored funding to kill tokenism. Hundreds of peer and family roles were planned and would be filled in the primary case management and medical management system. Trained peers would work as equal members of the team.
At the NAMI Utah conference a few weeks ago, Sally Spencer-Thomas, executive director of the Carson J. Spencer Foundation, spoke in her keynote about suicide prevention. She used a metaphor about water as it transforms into ice. Right up until the freezing point, one cannot discern with the naked eye what is about to happen; however, at the last moment, a few tell-tale crystals appear, and then a cataclysmic change occurs. The fluid instantly becomes a solid. It’s a miraculous event.
It got me to thinking, “What is the ‘last moment’ at which a behavioral healthcare culture is transformed by the power of peers?” At 40 degrees, water is cold, but not frozen. That change only occurs at 32 degrees. Similarly, transformation in the behavioral healthcare system does not happen when only 10% of staff are peers. Lori Ashcraft has taught for many years that the critical threshold is 25%. When one in four staff are individuals with lived experience and expertise, the organization hits a tipping point and it becomes something different. Anything less is tokenism.
Earlier this year, I had a long breakfast with CHOICES Network CEO Ron Smith, a leading administrator in the Arizona system for over 30 years, and whose organization was central to the ADHS/Magellan initiative. He described a totally transformed system, and I was mesmerized as he told me about the difference in his teams, their outcomes, and how they were making it work. He talked about his refusal to create a second-class tier of employees (either through expectations or compensation).
Ron explained that his organization had one personnel approach for both traditional staff and the hundreds of new peer and family roles. If someone sleeps with a client or steals from the organization, their policy states that the employee is terminated, regardless of role; beyond that, they have learned to incorporate a lot of grace into their approach. A psychiatric nurse who doesn’t show for work the first day has typically been terminated in the past, but they learned that someone who has not worked for five years and struggled with anxiety might need a different approach. Ron described using full-time to part-time more frequently when problems occur, and taking advantage of family leave. They are also seeing significant reductions in turnover.
The two of us had worked together since 2009 and I was a little stunned by what I heard. Ron beamed as he talked about the difference in approach as these teams were melding together, and I asked him how he had learned so much, so fast. His answer was immediate: the recovery training by Lori Ashcraft and Recovery Innovations. Recovery Innovations trained all new Certified Peer Specialists, but more importantly, all CHOICES managers and executives who would be responsible for this new workforce.
While the 2010 Arizona system led the nation in many ways, peers touched relatively few individuals compared to the 21,000 total served with Serious Mental Illness. In the first year of the “Towards a Peer Driven System of Care” initiative, more than 700 peers touched more than 15,000 individuals. Peers weren’t cleaning toilets or shuffling papers. They were billing as wellness coaches, peer supports specialists, crisis navigators, case managers, supervisors, managers, and even a few CEOs. In short, peers were changing lives. The 25% threshold was breached and the system underwent a cataclysmic shift.
I grew up in Nashville, Tennessee, where the Cumberland River snakes through the city. I’m not sure anyone ever attempts to swim across anymore. Wading out into those waters would be pretty precarious, but I remember seeing my father’s pictures from the 1950s when the water would freeze over, and people would just walk and/or drive across. At the 25% level, organizations become something different, ones that hear the voices and value the lived experiences of peers, and that foundation creates solid footing, just like solid ice, for the path to recovery.
This month, the American Association of Suicidology contemplates by-law changes as they grapple with the best way to formally acknowledge and invite suicide attempt survivors into the field. Until two years ago, there was generally only token representation, but I believe we underestimate the impact such a change would achieve. Recently, someone commented online, “I have long felt that the word of [suicide] survivors/sufferers is considered somehow suspect by many medical professionals. So long as that is so, or perceived to be so, there will be a silencing fear.” When peers are a central part of an organization, it can be the difference between walking on ice or sinking into the water.
Judi Chamberlin was fond of saying, “End psychiatric oppression by Tuesday.” I do not believe there are easy answers, but I believe the path is before us. When we breach the 25% threshold, something magical happens (see “Magic of Peer Voice”). Ask yourself, in whatever company, team, board, or meeting you lead, are there at least one in four (in addition to the policy makers, administrators, clinicians, family members, etc.) who are bringing actual lived experience and expertise? If you answer “Yes,” fantastic. You’re on the path. If you answer “No,” then enact change. Embrace 25%. As Nelson Mandela said, “It always seems impossible ‘till it’s done.”
*Note: David would like to acknowledge key contributions from Lori Ashcraft and Carol Coussons de Reyes. Special thanks are also extended on the “Magic of Peer Voice” slide deck for input received from Lori, Larry Fricks, Gene Johnson and Eduardo Vega.