My Evolving View of Mental Health Work

I worked continuously in the rehabilitation part of the public mental health system from 1968 through 2012. Until nearly the end, I was proud of the work I did, with colleagues of all sorts. I always strived for a big-picture perspective, to understand my work in context, and there were lots of challenges and knotty dilemmas built in. Mostly, they made the work more interesting and, ultimately, fulfilling, until late in the game.

A great many things conspired to pull me out of that comfortable place, but the most critical were peers and the research on medications, the latter as reported by Robert Whitaker. These combined with my own involuntary career into residential services, created by a reorganization of services in Massachusetts. This is a summary of what I came to understand:

• We have been seduced into believing that medications, anti-psychotic, anti-depressive, mood stabilizing and anti-anxiety, were the primary answer to the needs of people identified with a psychiatric disabling condition. How often had I heard from the people I was being paid to support that the medications made them feel awful, and that they didn’t really help all that much? And how often did I dismiss these concerns as misguided? Whitaker’s revelations about the research around these medications, their lack of efficacy long-term, their rebound effects, their often permanent physiological damage to the neural systems they were purported to bring back into balance, took a while to sink in, with all their miserable implications. Once embedded in residential services, I found mine to be the lone voice maintaining that medications were over-emphasized, and were at least not the only answer. Even that message seemed to have little impact.
• The residential system, which came to dominate community mental health in the form of Community Based Flexible Supports, had irredeemable structural defects that led to nightmarish consequences. I can only explain this through a series of digressions:
  • When in 2009, the governor’s 9-C cuts let to the closure of all but one kind of day service, and threw me into residential services, I took comfort in the fact that CBFS was to be built on principles of rehabilitation and recovery. It seemed that the custodial residential system would be reformed. I was mistaken. The basic principles of the former system were simply overlaid by a bizarre misreading of Medicaid rehabilitation option regulations.

    The system was still based on the notion that people with psychiatric disabilities were fundamentally incompetent to make the most basic life decisions, and needed a comprehensive level of care indefinitely. Wrap-around services was the benign-sounding term for this. It effectively continued the insult that people in recovery endured when they were first hospitalized and diagnosed. Staff with little experience or training were deployed as their partners. That, in itself, didn’t need to be such a bad thing. Unfortunately, the message these staff received was that they were in charge of the people in their care by virtue of their superior judgement and life skills. Their mandate was to keep their charges out of trouble and make sure they took their medications as prescribed.

  • The Medicaid Rehab. Option system was purported to be based on rehabilitation and recovery principles, but, as I pointed out in a proposal that ultimately proved fatal to my career, it only pays lip service to being strengths based. It is built on the identification and remediation of deficits, as it is applied in the context of CBFS. It was in fact such a poor fit that it came to be seen as a paperwork burden that was irrelevant to the work at hand. It was enforced in destructive micro-detail by an embittered state workforce that had experienced massive layoffs of their colleagues.
  • Risk aversion extended to a variety of institutional restrictions, most critically by the grotesque overuse of representative payeeship, Rogers guardianship (designed to force medication compliance) and full guardianship.
  • Two enlightened elements, peer support and employment and career assistance, were under-resourced and seen as peripheral to the mission. Leadership of the outreach teams were largely ignorant of both types of services. Leaders of these service areas within the provider agencies often had little policy influence. DMH managers shared a similar orientation.
• I heard Whitaker speak at the 2012 MassPRA conference, but it wasn’t until later, when I read his book and studied the research he cites there, that the enormity of his findings changed my outlook. My futile bleating that medications weren’t always the answer seemed so weak: what if the medications had exacerbated the illness itself, and interfered with the natural recovery process? What did that say about my career?

I concluded that what I had seen a an unnecessarily restrictive and often counter-productive system of care was actually far worse. It could be seen as fundamentally destructive. Stan Connors, my sometime supervisor at Bay Cove Human Services and its CEO for some years, used to say that we should only be satisfied with our services if we could feel good about a member of our own family receiving them. I had often felt that we felt short of that standard, but now I was feeling that if a member of my family had a psychiatric condition that was potentially disabling, I would help them avoid entry into the public mental health system at all costs. No medication…find another way, somehow.

The only thing I know of that is currently available is the system of peer support anchored by the Recovery Learning Communities. These minimally funded centers and community groups embody a glimmer of hope for people diagnosed with serious mental illnesses, especially to the extent that they represent the means to avoid entry into the larger system, or even escape from it. They are built on the old notion, now a radical idea again, that people with such conditions want the same things in life as everybody else, and that perhaps what might work for them are the kinds of things that help the un-diagnosed cope with life’s myriad challenges. A network of supportive relationships based on mutuality and trust rather than loss of control and compliance, and the support of basic skills that could help manage stress, lead to employment, participate in family activities, and fulfill creative desires.

Apparently our Governor and his team recognized the fundamental strength of such a system and the threat it could pose to the established system. In his budget they proposed to cut state funding for the services in half, ostensibly in order to save $1.7 million statewide, out of a budget of more than $750 million for mental health services. This will effectively remove the competition from the field of play; no more alternative to CBFS. Despite everything we’ve learned, or should have learned, from research, from emerging peer leaders, the Governor is determined to drag us several steps further back.

I will leave it to the six Recovery Learning Community providers to describe the remarkable things they’ve achieved in the past few years; they can do a better job than I could. I will only say that, knowing what we know, we can’t let this stand. We have to build support for these peer-run centers and help them to supplant and ultimately replace the existing system.

It’s in the science. It’s in our hearts.