Fighting for the RLCs Continued: Where’s the Evidence?

Sera Davidow
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It’s amazing the contortions we go through to prove our worth when under threat of budget cuts.

The Western Mass Recovery Learning Community (along with the five other RLCs across the state of Massachusetts) remains in jeopardy of a 50% slash to our budget that would go into effect July 1, 2015 should it come to pass. As noted in my previous post (Peer Supports Under Siege), the proposed reduction was introduced by Governor Charlie Baker in early March. However, there are many hoops to jump through and so we’ll remain in budget limbo for some time to come while the House and Senate draw up their own recommendations and then everyone comes together to make a final call.

Of course, we wouldn’t be the Western Mass RLC if we just stood idly by and waited. Instead, we’ve been talking to Representatives and Senators every chance we get. Representative Paul Mark had a powerful visit with people at our Greenfield Center a couple of weeks back. Representative Aaron Vega will visit our Holyoke Center on Monday, April 13 at approximately the same time that Representative Tricia Farley-Bouvier and Senator Ben Downing (and hopefully others!) will be headed to visit with our Pittsfield-based community.  Meanwhile, we’re in process of scheduling a visit to our Springfield Center with Representative Carlos Gonzalez. We took part in a rally at the State House on April 1. We’ve distributed two press releases, spoken to several reporters and have been successful in getting multiple articles published (Recovery Learning Communities Head to State House; Advocates for Western Mass Mental Health Program Protest Proposed Budget Cuts; Greenfield Mental Health Outreach Program Threatened by Statewide Cut) .

People want to know what supports we offer, where we’re based, and all the usual stuff.  Some – most, even – are satisfied with that. But, others also want to know the answer to questions that just aren’t so easy to answer in any real way. They’re asking questions like:

Are the supports we offer ‘evidence based?’

How much money are we saving?

Where’s the evidence we’re effective?

Evidence Based?:  So, yes, ‘peer-to-peer supports’ are considered to be evidence based, and given that RLCs are, at their roots, all about peer-to-peer supports, I guess that makes us ‘evidence based,’ too… at least by association. Really, there are tons of studies out there (see http://psresources.info/the-evidence) suggesting the positive impact of this type of work, but if I’m honest, I question the integrity of some of the peer supports being studied.

And what is ‘evidence based,’ really? I’m not sure it amounts to much more than a group of people who have enough money to pay researchers to interpret data (generally in their favor). That’s not to say that there is no value in research, but there is tons of privilege in being able to fund the process. So, as one might imagine, it’s the big, mainstream efforts that most commonly tend to achieve the grandest ‘evidenced based’ glory.

There’s another issue with ‘evidence based,’ and that’s the process by which much research is done. People who have been psychiatrically labeled have historically been taken advantage of by researchers in a myriad of ways. They’ve been ill informed of risks, and sometimes not given any real choice at all. At times, their desperation for help has been preyed upon.

Even more commonly, research methodology has been invasive which can break trust and accessibility of supports in a heartbeat. As such, the RLC has typically steered clear. We’ve prioritized the work and the people over the cost and status of evidence-based proof. So, all we can really do is extrapolate from research results performed in other peer-to-peer environments and the voluntary, survey-based feedback we have sought only after someone has received support and never in the heat of a ‘crisis’ situation.  (Though, in fairness, I should say that some of those voluntary, survey-based feedback processes have garnered some pretty impressive results.)

Cost Savings?: “How much money are we saving?” is, of course, the eternal (and infernal) question around every corner. However, I recall one particularly wise man at a conference in New Orleans last November pointing out that it may not be the best idea to set cost savings as the most important goal of all. He was concerned it set a bad precedent of forever equating the best care with the lowest cost. One has to wonder where that ends, since costs can only be reduced so low, and perhaps it may just be okay to get good with investing real money in our humanity and well being?

The truth is the RLC does save money. All signs (and a voluntary, survey-based study conducted by UMASS Medical) point to our supporting people to stay out of the hospital and get more invested in community and there’s just no way that doesn’t bring all sorts of savings (both monetary and otherwise) to bear. But can we prove it with in depth, double blind, statistically relevant, replicated studies? And, more importantly, can we prove the costs we’ve saved by contributing to people never landing in system—based services in the first place? (Something I wholeheartedly believe that we accomplish on a regular basis.) Not so much.

Show Me the Evidence: That brings me to the last question: Where is the evidence that the RLC is effective? (That’s kind of like ‘Where’s the beef’ for those of you who can remember back that far.) Well, it’s with the people, silly!

In 2012, during the process of finishing up our first RLC film, ‘Beyond the Medical Model,’ I got some invaluable advice from Gail Hornstein (Professor of Psychology at Mount Holyoke College) that I hope I never forget. We’d used the term (since removed) ‘anecdotal evidence’ in the film in reference to people’s stories, and she essentially advised us to give up that term for good. She pointed out that people’s stories ARE evidence. They’re different, but not lesser (and often better) than quantitative analysis. She suggested we stop downgrading the proof in people’s stories by referring to them as ‘anecdotal.’ She was right, and so we did.

The truth is that when you’re not obsessing over numbers, documentation and accumulating ‘evidence,’ you have the time to build real relationships and trust. And, when you build real relationships and trust, then people will tend to give of their stories pretty freely when the opportunity arises. No complex scientific process required.

It’s amazing the contortions we find ourselves going through to prove our worth when threatened with budget cuts… even though the evidence has been right there in front of us all along.  We can argue numbers and scientific interpretations all day and night, but it’s hard to argue with evidence like someone straight up saying, ‘The RLC saved my life.” It’s even harder when there’s many someones all saying the same thing.

Please take a few minutes (okay, 8, to be exact) to check out (and share!) this short RLC video produced by our very own Evan Goodchild (with contributions from many in our community).

The RLC saves lives. How do we know? Just watch.  (And after you’ve watched, please don’t forget to contact Massachusetts legislators to advocate for our survival!)

 

33 COMMENTS

  1. This is a great article, very well written Sera. During my time with the Western Mass RLC, I have seen the impact this work has had on so many lives, it is really hard to quantify. While the data we have collected has been overwhelmingly positive, I agree that the real “evidence” is the people themselves, and the stories that they share. – Andy Beresky

  2. “There’s another issue with ‘evidence based,’ and that’s the process by which much research is done. People who have been psychiatrically labeled have historically been taken advantage of by researchers in a myriad of ways. They’ve been ill informed of risks, and sometimes not given any real choice at all. At times, their desperation for help has been preyed upon.”

    Excellent point, Sera. I believe this was part of a local hospital’s attempt to coerce my daughter into having ECT for her “treatment resistant mania”. Just prior to this she consented to having some psychiatric students observe her. The attending psychiatrist was a strong proponent of ECT, he was quickly pushing this as necessary (rather than stopping or at least greatly lowering the neuroleptic med that was causing akathisia–which staff would not acknowledge), and even said to her menacingly at one point, “You WILL have ECT!” I think he saw her as a great “subject” for study, since she is intelligent and articulate and might present a nice “before-after” picture of success for his students. Hey, what would be the harm of a few fried brain cells–she had plenty to spare! And if she turned out to be one of the unlucky ones…”Oh well, it was ‘clinically indicated’…We tried our best!”

    Fortunately, while in a desperate state (exacerbated by their ham-handed “treatment”) she resisted this pressure (with our support) and her mania subsided after they finally discontinued the offending medication.

    Nice article, Sera. Thanks!

    • Sera, best wishes to your organization, I know you do good work.

      As to, “There’s another issue with ‘evidence based,’ and that’s the process by which much research is done. People who have been psychiatrically labeled have historically been taken advantage of by researchers in a myriad of ways. They’ve been ill informed of risks, and sometimes not given any real choice at all. At times, their desperation for help has been preyed upon.”

      And I guess I’m questioning the actual medical proof the antipsychotics are “evidence based,” and should actually be claimed to be the “gold standard” treatment for psychosis at all. Since they can, in fact, cause the symptoms of psychosis themselves, and the psychiatrists seem completely ignorant of this fact. From drugs.com:

      “neuroleptics … may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

      The antipsychotics themselves can actually cause the schizophrenia symptoms. And I have not found proof on the internet that most schizophrenia / bipolar may not, in fact, be due to doctors misdiagnosing people as psychotic, then creating the central symptoms of neuroleptic induced anticholinergic intoxication syndrome. That’s what happened to me.

      I hope this proof the antipsychotics can also cause psychosis may help you in pointing out the flaws in what is considered “evidence based medicine.”

  3. great article, sera. it would be a disaster if the western mass RLC had this budget cut. i consider the western mass RLC a flagship community — one that does so much good on so many levels to so many people. i share about your work all over the world — as an example of what can be, and what can happen when people come together with strong common values and actually live them. the evidence i have is not in numbers and figures, it’s in getting to know the people involved, feeling the passion, and realizing that a whole new way is possible.
    daniel

  4. Sera, I checked out the video above (well done!), as well as the web site, and just sent off a supportive email to Governor Baker. I know it’s HIS budget and he won’t actually be voting on it, but since I don’t live in Mass I didn’t know what else to do. If you have any suggestions about who else to send it to, please let me know.

    Russ

  5. Many thanks for this eye opening article. I will never forget the warm welcomes I received from community members at both the Springfield and Holyoke RLC’s, when I was at one of the lowest points in my life. I was encouraged to see how many of us pulled together to speak with our state reps and senators in Boston about the budget cuts. Our community keeps people alive. We are the evidence because we are here.

  6. I have great admiration for what you do at Western Mass RLC. I also share your skepticism over much of what’s considered ‘evidence-based’. But you do realise you’re shooting yourselves in the foot quite a lot (and unnecessarily so), by not supporting yourselves with independent research (quantitative, qualitative, mixed methods – whatever, just something), right? People tell stories that say ‘psychiatric medications saved my life’ or ‘Alcoholics Anonymous saved my life’ or ‘ECT saved my life’ as well. You need more than that. I genuinely mean this from a place of respect, but you must understand this, if you or any other ‘peer’ support service model wants to stay viable and needs governmental funding. I hope you win this battle in the short term with the passion and support of the people who have worked for you, have received your services, and otherwise believe in you. But in the long-term, please reconsider your aversion to ‘playing the game’ and being able to show, undeniably, that your services do what your funders probably are expecting from you. Welcome to the nonprofit industrial complex, I suppose.

  7. Sera, Thanks for writing about one of my favorite ridiculous ideas, “evidenced-based.” As an evaluator by profession, I think it is important for us to ask “whose evidence?” and “evidence of what?” when people throw this silly phrase around. Researchers (and the people who pay them) can make data say pretty much anything they like, so who paid for and conducted the research that is being cited as “evidence” is a key question. Also, exactly what did they set out to prove? There’s probably evidence that forced drugging and community treatment orders lower hospitalization rates, but that in no way proves that forced drugging and keeping people under surveillance is a good thing. If survivor/ researchers had the opportunity to set the research agenda, develop outcome measures for liberation,and were funded to conduct research, maybe we could start talking about evidence.

  8. A human brain (with the ability to reason) is better than a drugged brain in the long term outcome most of the time.
    People who are drugged can’t take care of themselves , can’t solve problems on their own.
    Mommy and Daddy need to be needed, so some parents like the drugging of their children to stay the King and Queen of the family.

  9. RLC shouldn’t be held to a higher evidentiary standard then that traditionally applied to mental health provider agencies, i.e. the narrative for one or two individuals. I have yet to run across a provider agency which can empirically evidence what they represent. When I ask for the same I find that the only evidence is the tale of an adult whose name is usually in the diminutive, ex. the story of Susie or Billy.

    • The good retort to this is to ask, “What is the evidence that the standard approach leads to better outcomes or saves money?” The trick that the mainstream employs is to focus on “symptom reduction” rather than long-term outcomes. There is basically NO evidence that psych drugs improve outcomes (and increasing evidence that it makes them worse) and plenty that peer support does improve those outcomes. Maybe give out some copies of Anatomy for them to read.

      Perhaps in addition to defending your own program’s value, it’s time to discredit “business as usual” as one of the biggest wastes of money in the State budget!

      — Steve

  10. Sera,

    I wrote to each of the legislators you listed. I hope it helps.

    Although, I can appreciate any legislator who wants spend taxpayer money wisely, I have to say that this constant call (enduring mantra) for “evidence-based” treatment is getting kinda old. It’s not as though the conventional method has earned a right to some kind of monopoly.

    Programs that involve peer-support; building relationships; re-integration into the community – all these things make sense, and they work. They work because of the way we’re wired-up. We need to feel appreciated; supported; encouraged (labeled and non-labeled). Dare I say, we need to feel ‘loved’?

    Love heals.
    Do we need more evidence?
    Are we supposed to stop using this technique until it’s deemed “evidence-based?”
    I hope not.

    Recovery centers need to prove their “evidenced-based”; conventional psychiatry, not so much…

    I feel like I’m in ‘Alice in Wonderland’.

    Duane