Monday, October 27, 2008

Barriers to Trauma-Informed Mental Health Systems: Beliefs and Medical Necessity

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One of the challenges for implementing a trauma-informed system is an issue of etiology – that is, the etiology of mental illness.

I know: debating cause of mental illness is not very helpful, especially when I just want peer support. Debating cause isn’t helpful when I am trying to learn how to work again, or trying to get up enough courage to go to the gym full of strangers, or stop hating myself. But I’m afraid that we will have to share uneasy proximity to the question because it is the often unspoken decision people have already made about what causes mental illness that has created so many broken state mental health systems. What we believe about the illness informs the services the system provides.

So, if I believe that mental illness is caused be a chemical imbalance, then the role of the system will be driven by treatment services with their emphasis on medication therapy. It fits nicely into the medical model. It is easy to bill Medicaid based on the criteria for medical necessity. And the theory has done good work by some of us to counter stigma by “normalizing” the experience of distressing thoughts feelings, behaviors (read “symptoms”) by making it all a medical thing: same-as-having-diabetes.

It’s not. The cornerstone of chemical imbalance theory is medication compliance. And if you aren’t compliant, then you must be defiant. I think as survivors whose needs are multi-faceted and complex, we know the terrible consequences of either “choice.” This compliance/defiance dynamic is the birthplace of sanctuary trauma. This is one of the reasons why we started talking trauma-informed systems of care in the first place.

I was recently in a training that involved many case managers. The trainer was attempting to talk about self-directed recovery – and creating ways for such to take place in program environments. Everyone was in agreement about the importance of choice, self-advocacy, self-determination, etc. I don’t think anyone present would say that they did not believe in recovery…

But as I listened, I started hearing how these terms were being re-defined to fit the system these practitioners were working in. What I realized - again, is that each of us defines recovery in the context of our individual belief systems: If I am bought in to the idea that people with mental illness can’t know what they need until their brain chemistry gets its influx of right chemicals through the proper medications, then I’m more likely to re-define personal responsibility and choice in the context of: “Consumers in our program can choose to take their medications -- or not; come to group on time -- or not; stay awake during day program -- or not; attend to their personal (shudder) hygiene -- or not. Forget that the group I have to go to at the mental health center is beyond boring, has nothing to do with my life, and is required if I want to stay on my SSD Benefits – since people like me can’t work. (You told me.) Forget that my personal hygiene habits you want to change so badly are the best defense I know right now against losing any more autonomy.

The choice to comply or defy is no choice at all. These “choices” did not return me to personhood. In that system, my struggle wasn’t even my own: My illness gradually ceased to be about what brought me into services in the first place, and more and more about my response to those services. The harder the system tried to get me to comply, the bigger my acts of defiance. The bigger my acts of defiance, the greater the force used to subdue me. The greater the force needed to subdue me, the more violent my defiance...and so on, and on and on….layer after layer of violence. Who wins? There were times when I walked toward suicide because it seemed to be the only, final, recourse to self (soul) preservation. This is a description of a violent mental health system operating in the “best interest” of its patients.

What recourse do any of us have – patient and provider – to stop the cycle of violence that is the hallmark of mental health services operating out of a really bad re-interpretation of recovery principles and values (summed up in the Consensus Statement on Recovery)? What meaning can peer support have when it is so often reworked to mean, I use my personal story of recovery to explain to you that it was only when I accepted that I was mentally ill and started taking my medication that I got better (read, “So it’s my job to convince you to be compliant.”)

Medicaid reimbursable peer support services are extremely vulnerable to this type of co-optation. But in creating dialogue with other peers in the realm of trauma we create a distinct support role. When we discuss with our colleagues those messages, and policies and standard operating procedures that we know from our own experience are soul-killing, then we are valuable contributors in the recovery of the system, and allies to those who want to create change, too. I see our role in creating a trauma-informed system as one in which we hold room for the human experience context as opposed to medical necessity.

Trauma. The word opens a door we never had before. It begs system self-examination. It necessarily requires a different tone of voice, a quietness that wasn’t there before when all we had was mental illness, brain disease. There is in the word trauma the reality of event, an implied relationship now between speaker and listener. We have always shaped our human communities out of shared events, beliefs and the history of ourselves transmitted through storytelling. We know our kin and kind because this. Take away shared event, you create “us” and “them.

So, what holds us back? As Peer Supporters? It has something to do with those @#$! expectations about how we are supposed to respond to our own trauma experience...I think there is a real role in the listener-storyteller relationship based on the wisdom suffering teaches all human beings. We have a right to that self-knowledge. More later.

1 comment:

Anonymous said...

Thank you,
you helped me define what I am seeing as P erson in receovery
working as a Peer Specialist,
specifically how we will lose our recovery if we allow others to define it.