We’re in scary times. For so many reasons. Perhaps the industrialization of ‘peer work’ should rank fairly low on the scale of scary, but – at least for me – it’s up there.
An Industrialized Nation – A Sampling of the Questionable, the Concerning & the Downright Outrageous
Medicaid reimbursement of ‘peer’ support is already in place in several states, with more on the way. People in the so-called ‘recovery movement’ are fighting for it to spread, as if it were some great accomplishment and not something that will quite literally eviscerate all the most valuable elements of peer-to-peer support – all that makes it something different.
What do I mean, some of you may ask? Here’s but one example of many:
Now, I’m not much of a WRAP-ophile, but I do at least get that Mary Ellen Copeland and company worked hard to create a foundation of values upon which Wellness Recovery Action Planning (WRAP) firmly sits, including the importance of self-determination and ownership over any plan created. When I was in Maine, however, I noted in one community center’s newsletter that they were offering a WRAP group for which one could only sign up if they went through their Case Manager! Why? Because it needs to be in their ‘treatment plan’ for Medicaid reimbursement purposes, of course! So much for personal ownership.
Meanwhile, New Jersey reportedly aims to open the first so-called ‘peer’ respite house by way of Medicaid reimbursement with results that I suspect will be fairly devastating to all that is called ‘peer respite.’ And, even without Medicaid reimbursement, another so-called ‘peer’ respite already open in the country doesn’t allow people staying there to leave unless they’re with their case manager. (Forgive me all my ‘so-calleds.’ I’m at a linguistic loss for what else to do.) And yet, when some of us speak up and challenge the right of some of these groups to even claim that title of ‘peer respite’ (or other similar titles in similar situations) more often than not I hear “There’s lots of different ways to do it,” “We don’t all have to look the same,” or “A little bit better is still a step in the right direction, right?” But, at what point does a little bit better actually become a whole lot worse?
In other related news, massive insurance agency displays are popping up at the often not-so-alternative Alternatives conferences year after year and we now have an organization – the (supposedly) International Association of Peer Supporters (amusingly transitioned from NAPS to iNAPS after having recently self-proclaimed international status) that aims to speak for us. Yet, at least the original version of their proposed ‘national standards’ draft insultingly suggested mandatory ‘self-care plans’ for people in peer roles. (They say this was just a starting draft, and yet it was telling as to their own starting point.) When I attended a meeting on these standards held at last year’s Alternatives conference, one person there suggested, “the train has left the station,” on issues of Medicaid reimbursement and standardization of peer roles, as if we all needed to shut up and hop on board. I countered that our movement (at least the only one that I want any part in) has historically never shied away from the ‘fight’ or accepted forecasts of hopelessness. I asked where all that fight has gone and was met with silence.
And, of course, Certified Peer Specialist (CPS) trainings are sweeping the nation. Perhaps this wouldn’t be such a dismal trend if those trainings aimed to give people working in peer roles a solid foundation in values and the tools needed to avoid co-optation and truly understand the change for which they are working. Alas, instead, most of those trainings seem designed to assimilate people into mini mental health worker positions, and what’s scariest is that so many students seem so ready to be assimilated! Admittedly, I myself have participated in facilitating parts of the Massachusetts CPS program in hopes to further strengthen the change and de-mecalize the curriculum. Routinely, I have been responsible for offering a module on the history of our goes-by-many-names movement and when I do, I always bring in original copies of Madness Network News, Phoenix Rising, State and Mind, Dendron and so on from the 70’s, 80’s and 90’s. One time, a class member chastised me for the offensiveness of some of the material in those newspapers and magazines. Personally, I wonder where all the ‘offensive’ has gone?
The quiet – the willingness to be led into the night without protest… it is not serving us well.
And the ‘Professionals’ Profess…
Meanwhile, while those of us who actually identify with this movement continue our squabbling, in-fighting and lack of sense of true direction, there’s no end of ‘mental health professionals’ willing to define our mission for us.
Recently, someone forwarded me an article published by the Psychiatric Rehabilitation Journal in June of 2013 entitled, “A Demonstration Project Involving Peers as Providers of Evidence-Based, Supported Employment Services.” I wish I could sum it all up with my initial reaction (which was “Ugh.”), but I feel compelled to delve further. I also wish I could insert a whole copy of the article here, but it says very clearly on it, “This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.” I fear that posting it here would qualify as ‘disseminating broadly,’ (but hey, e-mail me if you – as an individual – would like a full copy!).
There are countless issues with this article, not the least of which is the oppressive usage of language like the ever-charming acronym, ‘SMI’ (standing in for ‘Serious Mental Illness,’ for those of you not in the know!), and the relentless reference to people as ‘consumers’ or ‘peers.’
However, I’m going to step away from my generally preferred debate on language to some of the deeper issues that it represents. This article – offering results of a demonstration project where people who received psychiatric services were now also providing employment-related services under a particular model (Individual Placement and Support) – does indeed demonstrate something. However, what it demonstrates is nothing other than the fundamental lack of understanding and abuse of ‘peer’ roles that is running rampant throughout our nation.
First of all, this article (and the project before it) defines ‘peer provider’ as follows:
“Individuals who have achieved functional recoveries from a mental disorder, continue to receive mental health services themselves, and are employed by mental health programs to work alongside professionally prepared staff members.”
It goes on to offer a list of common tasks of such ‘peer providers’ the first two of which are “Case Manager aides” and “Community aides that connect hospitalized consumers to continuing outpatient services.” (I believe I’m due another, “Ugh,” right about now.)
I suppose it’s helpful to their study that they should have such free reign over how the role gets defined, and yet, it strikes me as problematic that the definition’s meaningfulness extends no further. At least, that’s how it strikes me if one is to assume that the intent in funding this ‘demonstration project’ included something other than spending money to uncover little more than imaginary implications.
In truth, ‘peer’ is defined more by the relationship between two people than it is based on qualities one holds unto one’s self. For example, I am currently sitting completely alone in a room at a desk in front of a computer. As I sit here so alone, I continue to independently possess the qualities of, say, having long hair. I also continue to be a person who knows how to type pretty fast and can even look away from the computer at someone who’s come in to speak to me whilst continuing to type. (It’s a pretty neat party trick.)
As I look up at my children’s pictures posted on a board above my monitor, I am reminded that I continue to be someone who has given birth, although I am only a mother in relation to my children. Similarly, although – as I sit here – I continue to be someone who has experienced forced hospitalization, taking psychiatric medication, diagnosis and so on, I am only a ‘peer’ in relation to others who have been through similar experiences (or to other mothers, or to other women who have had miscarriages, or to other people working in similar jobs, or to other movie lovers, or to other filmmakers, and so on and so forth). As I sit here, I cannot be ‘a peer’ otherwise undefined and unconnected. It just doesn’t work, and so the definition that ‘Kern Et Al’ have used for this paper falls flat on its face right from the start.
Furthermore, even if we were to accept some of that basic definition, why on earth should people need to “continue to receive mental health services” to qualify as ‘peer’? How does that relate to their ‘peer’hood? From where I sit, it only seems to identify the particular group of people involved as people who likely find mental health services helpful (or for whom they have been made mandatory in some way) which certainly excludes a large number of those actually working in true ‘peer’ roles. I also worry that it may speak to just how indoctrinated the people involved in this study may be to the system within which they are now working, though there isn’t actually enough information in the article to fully assess that concern.
But let’s keep going. In particular, this project seems to focus on only three people working in peer roles each of whom reportedly had a history of “SMI, ranged in age from 40 – 59 years, and had educational attainment ranging from 10th grade to 1 year of college.” Prior to being tested out in this new ‘employment specialist’ role, their jobs involved “assist[ing] with case management needs and to perform other assigned tasks which included assisting with group therapy sessions, gathering survey data and planning social events (e.g., birthday celebrations).” (It’s probably worth noting here that the only activities over which this description suggests they may have had full leadership are the deeply serious and meaningful social events such as birthday celebrations.)
For fear of losing every last reader who has even made it this far, I will jump ahead and summarize by saying that subsequent sections on the methodology of the project describe tasks associated with the new employment specialist role as including (among others), “progress notes for the consumers’ medical records,” “wake up calls,” benefits planning, relationship building with local employers, on-the-job support and cheer leading, and in some instances, “counseling on medication adherence.” (Not all of these are inherently contrary to ‘peer’ roles, but some of them – such as making notes in medical records or encouragement to take psychiatric drugs – speak to a level of power differential and voice over self-determination that are inconsistent with the mutuality that should exist in any role called ‘peer.’ That said, certainly, Ms. Susan Inman would approve of that last task, given what she wrote in her 2012 article, “How Peer Workers Can Hurt People With Mental Illnesses.”)
Most importantly, the write-up of the results of the project also contained the following gems:
“The peers were asked to ‘stretch’ into the demanding employment specialist role. They were challenged to transition from a role of case manager assistants to performing as employment specialists, a job of much greater complexity and rigor.”
“The peers expressed high levels of uncertainty about the priority of developing vocational skills as a core component of their current position…the first months of training required our team to work with the peers to help them understand the value of doing this work.”
“The program required a high tolerance for medically excused absenteeism resulting from the peers’ physical or mental health problems and appointments with their doctors and therapists.”
“Peers pose training challenges given the kinds of complex and varied skills necessary to function as a competent employment specialist.”
Now, I don’t know much about this whole ‘Individual Placement and Support’ (IPS) approach to employment. Perhaps it’s better than employment programs that focus solely on the ever popular five F’s (food, flowers, filth, filing and folding) that get forced down people’s throats as if the whole wide world of career options shrunk upon diagnosis. But, here’s what I do know:
- A job doesn’t become a ‘peer’ role just because you will it or name it so. Peer-to-peer work is more about how two (or more) people relate to one another, and less about one person’s identity. The jobs described in this project are decidedly and without question NOT ‘peer’ roles.
- It’s highly suspect that the article mentions in at least two places how much time was needed to convince the people involved in this project that they should be doing the employment specialist work. Perhaps they, too, knew in their heart of hearts that the work was not a fit.
- People who have been given psychiatric diagnoses do NOT necessarily require a ‘high tolerance for medically excused absenteeism.’ I work with about 30 people who offer some aspect of peer-to-peer support and who have been psychiatrically diagnosed at some point in their lives. Although we experience the same issues with reliability that any workplace does, overall, we do not have any unusual needs for tolerance of lateness or illness. The last person to take a lengthy leave of absence was me in 2011. I had a baby. We called it maternity leave.
- From all that I have read, the ‘employment specialist’ position doesn’t come even close to matching the “complexity and rigor” required in some of the roles we employ through the Western Mass Recovery Learning Community. In particular, people working at our ‘peer’ respite (Afiya), often work 12.25 hours at a time with people experiencing intense levels of distress and who may come to the house with a variety of needs, hopes and concerns.
- People who have been diagnosed and received services in the mental health system do not inherently require more training (unless, of course, they have been drugged into submission by a system that so often prioritizes numbing people into an artificial sense of ‘safety’ over personal agency). In fact, people who have ‘professional’ degrees or who have worked for a long time in the mental health system are often much harder to train for all the unlearning they have to do.
The Western Mass RLC is not the only place doing good work. It is simply my closest place of reference. People are doing good work that fits the values of peer-to-peer support in many places across the country (though not nearly enough). But that work is being under-documented or missed entirely in favor of these sorts of projects that can’t serve to prove anything because they’re not even starting from the right place.
A Personal Message
To the authors of this article (Robert S. Kern, Shirley M. Glynn, Deborah R. Becker, Robert E. Drake, Wendi Tovey, Roberto Zarate, Luana R. Turner, Kellie M. Smith, Sharon S. Mitchell, Alex Kopelowicz, Robert P. Liberman) and all others like it:
Unfortunately, if you start with the belief that ‘peers’ are only the people you identify who fit in a small box and are hired within your vision, of course your results will suggest limitations. But make no mistake: The limitations you find are the limitations of YOUR vision, and not of a whole community of people who inevitably are complex with multiple talents, gifts and strengths themselves and aside from (as well as sometimes because of) the challenges they have faced past, present or future.
And what of the people already working as ‘employment specialists’ under the IPS model who have also been diagnosed, but dare not reveal their personal experience? I’m sure they, too, exist, but again your vision limits the space they might ever have to feel safe to share that with you.
Your article accomplishes little more than to perpetuate ideas that people who have been labeled with “Serious Mental Illnesses” are limited not only intellectually but in their basic human potential. I personally urge you to look beyond the controlled studies within your immediate sights, and out to the wide world of personal stories that offer more power and hope than your “measured degree of optimism” could ever touch.
I know that some of you don’t believe in peer-to-peer work at all. In my own local community, we’ve dropped the word ‘peer’ altogether for some of the reasons you might be inclined to cite. But we’ve hung on to the values and to the belief in the power of creating space for people to connect and move through very difficult places.
Ultimately, I do believe that some of us are doing very important work, but we need to find more ways to speak out against those activities that serve to do little more than move us further away from relating to one another on a genuinely human level. This is true whether we’re talking about distortions that are born within our own so-called movement or from the so-called professionals publishing in journals that surely won’t give us the same editorial voice.
Somehow, we need to decide: What exactly is it that we’re all trying to accomplish? I’m not sure too many in the ‘peer’ industrialized nation could offer much clarity on that. But, we better get clear and fast, because others aren’t waiting around for us to decide. If we’re going to be heard, we’d do best to sharpen our ‘tools’ for the fight.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.