I am a consumer of mental health services. I am also a licensed social worker. I am a professional. I’ve done supervisory, engagement services, and also worked as a mental health therapist in diverse settings. I’ve been apart of the peer movement in mental health reform in New York State, across the greater tri-state, and established a culture of progressive reform in systems of care across the United States.

I was out there, OK! I’ve done advocacy work and I’ve protested. I’ve ‘blocked’ admissions to psychiatric facilities akin the folks over at MindFreedom International and other ‘radical’ organisations which promote the eradication of psychiatry from mental health care. As an indirect, perhaps, even, direct result of my work for the Westchester county government in New York, many of the ‘peer’ programmes which exist today have come into being under my watch and because of the work I’ve done to levy and green light funding. I have indeed seen fruits of our labour in the movement birth services which have helped countless people experience growth, recovery, and generally a better quality of life. 

I have also seen movement change and transform. I’m going to even hazard to say it has stalled. So many of us peers have been co-opted by the medical and psychiatric industry. There are people in the state government who were more interested in social control through regulation and backchanneling of money than healing the sick and unhealthy. In this state alone, the very presence of peers with so-called ‘lived experience‘ has become the new ‘in’. Some might even call us peers the new hot commodity of the mental health system. The money stream is now funnelling its support from the state government and its shadowy benefactors. The truth is quite simple and axiomatic at the root of it. Reform movements taking money from the government also take with them baggage. Some call this baggage red tape, but as I said, the truth is a little darker than over-regulation. We peers have become part of a standing reserve.

We have been co-opted. We have lost our voice and in turn lost our power!

I ran a peer programme in a large mental health agency for its tenure and from its inception. In the beginning, we had all sorts of loose regulations on how the programme funds or ‘service dollars’ could be used to benefit clients in need of extra assistance. The money allotted for our programme was generally decided among us peers at team meetings.

Well, oh so very slowly, and at first covertly, these rules for how money could be spent changed. They became more strict, rigid, and quite frankly, extremely difficult to even use during the provision of care for our clients. And, like clockwork, as we peer gained more visibility and worth to mental health agencies, akin to the agency I worked for other programmes too became corrupted by the system as the government stepped in.

By the time we realised what was happening the government pushed peers in various nonsensical directions. Beginning with blurring boundaries and roles so peers would fill gaps in staffing from turnover to the credentialing through the Academy of Peer Services, the covert shadowy changes to our function became so blatantly obvious that they could no longer be ignored.

Unfortunately, like most shifts in power, by the time things are that visible it is almost impossible to fight back.

Here is a deal. You must be asking: Why would the government do such a thing? Why change service and the entire piece of the mental health picture that is helping folks and alter it unrecognisable until it breaks? The answer is depressingly simple and as obvious as the changes circulating around the system. Medicaid reimbursement and money.  The rules around Medicaid service and reimbursement.

Peers need to be ‘certified peer specialists’ to justify the work and state spending on the mental health system. This means peers have to go through a specialised training through the Academy of Peer Services, which costs money to fund, develop and organise under the very same medical model that was so harmful and so antithetical to the very concept of a peer. We have become legitimatised through our oppressor, albeit figurative, but very very real to folks that were harmed by the medicalisation of mental health.

Since the driving force in so many mental health agencies like mine in New York State and those serving the mental health system already have Medicaid, this was a must to keep money in the pocket of the state by simply creating a new standard for peers to practice. This standard though is not rooted in serving clients better. Underneath it all, this was about money and keeping peers contained within the very model that under-served them and even victimised them.

So, let’s be real about our situation as peers. The moment our situation went from bad to worse we should have responded and pushed back! Now, in order to practice our craft, we have to conform to a way of doing things that aren’t very peer-oriented limits our potential to be true advocates providing mutual support. 

What we need moving forward is to teach others how to make sense of our experiences. All of them. From our own lived experience to our experience working as peers. We need to create new ways of seeing, thinking, and doing what we do and our work as peers. In New York State, practising IPS (individual placement and support) is not a requirement. In fact, in most agencies in New York, it’s not even practised. This is where the problem takes on a whole new dimension and density. Every discipline intersecting the mental health system, whether it is social work or psychiatry, has a code of ethics. A way of practising that sets it apart from other disciplines. We must establish this code and niche so our interventions are not only carried out effectively but also credited to our field of inquiry.

Without including IPS, or similar interventions as a standard of practice for the peer, what really are we doing differently as peer specialists? In the end, I’ve seen peers doing the jobs of case managers, therapists, and filling in other treatment gaps in the system.  Instead, they are getting paid less and doing more.

Until peers adopt a code of ethics, and have a way of practising that sets them apart from others, it will always be more of the same, undercutting the consumer, and benefiting the agency pocketing surplus money without providing authentic peer services.

As peers, without authentic voices, no matter how loud we chant, or how many people we advocate for, we are not real peers in the sense of the word. And without practising true mutual support, and having the backing of our government to do so, our voices and ability to shape change will be lost forever. So, no matter what you think a peer is, whether that be having lived experience or just be discriminated against because of a stigmatised illness, remember, this battle for equal partnership in the fight isn’t over yet.

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An earlier version of this article was first published in Mental Health Affairs.

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Image credit: Freepik

Sabrina Johnson LMSW is based in New York.