"MORE RESEARCH NEEDED": REPRESENTATION AND SUSTAINABILITY IN PEER-RUN ORGANIZATIONS

This blog post refers to an article recently published in Psychiatric Services: "Leadership and Characteristics of Nonprofit Mental Health Peer-Run Organizations Nationwide."

This paper represents one of the first published manuscripts out of the 2012 National Survey of Peer-Run Organizations, the data-set collected as part of my doctoral dissertation. The analyses hinge on two central ideas:

1) That peer-run organizations are much like any community-based non-profits, with the particular characteristic of being  controlled by people with lived experience of the mental health system.

2) That there are observable differences in their operations when divided into two groups representing those under complete control by people with lived experience vs. those with a greater mix of people with lived experience and others on the board. The former are referred to as "peer-controlled", and the latter, "peer-directed." 

The first idea is important because across all sectors of social movements, non-profit corporations support social change through the infrastructure provided by formal entities to conduct their activities.

The second is of interest in relation to the first because it attempts to address the highly contentious issue of representation in social movements. It begs the question: Are goals related to representational politics more important than goal-attainment on specific issues?

Is there, in fact, a trade-off in goals related to representation and outcomes at all? 

The results  of examining different specific characteristics of these organizations lead us to arrive at the following conclusions, which are really a jumping off point for another hypothesis:

"peer-controlled organizations, on average, were younger, were less likely to be incorporated nonprofits, and had fewer paid staff compared with peer-directed organizations"

and

"peer-controlled organizations seemed to be a more emergent form of peer-run organizations...Because these data are cross-sectional, we cannot draw a firm conclusion on whether this impression is due to the organizations' shorter life span or whether these organizations evolve into peer-directed organizations".

Most of you reading have worked in or with peer-run organizations across the country -- perhaps even over several decades -- and hopefully read the article with some examples in mind: an organization that is entirely controlled by people with lived experience, and is younger and less formal than another organization you know that is well-funded, has existed for many years, and relies on more hierarchical management approaches and a board with a lower percentage of board members with lived experience. Maybe you have seen or documented one of these organizations changing over time on these characteristics. And perhaps, either through your own research or observation, you have a sense of which organization (between the two, or between two time-points) is "more effective" in some way that is meaningful to communities, service-users, or workers. 

The questions I am interested in going forward are:

1) What is the purpose of these organizations in facilitating "social change"? How does it vary by sociopolitical context or geography and demographics? 

2) Given that purpose, what is the best organizational form to achieve it and how do we support that financially and politically going forward? 

During my final dissertation defense, I threw out the question that maybe the complications potentially incited by financing (particularly Medicaid) are not worth any comprises to advocacy and support, and that all of these "programs" and "organizations" would serve society better as unfunded, informal, grassroots "groups." Sometimes in science you have to think about questions that challenge your own assumptions and therefore, your own survival.

I do believe that these organizations are important in social change because working with other people on these issues (individually or as a movement) is not only work, it's hard work, and that regardless of history or social/health status or identity, people should be paid for work -- not only because it changes other people's lives when you have the resources to "work hard", but because it changes our own, and through that, it changes society.