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

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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

  2. 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

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  3. “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!

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    • Thanks so much for reading and commenting, Russerford. And I’m really glad to hear that your daughter had your support in resisting. There’s not much that is more frustrating than when ‘treatment’ ends up being so clearly at the root of the problem but the system is instead pushing more ‘treatment’ instead! – Sera

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    • 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.”

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      • Someone Else, It’s a valid point you make and part of what I was getting at when I parenthetically referred to the ‘evidence base’ being interpreted in the favor of who ever was paying for the study… Your story is one of many. There isn’t much I find more frustrating than hearing doctors say how a so-called antidepressant helped to ‘unmask’ someone’s ‘bipolar’ and so on… Really infuriating! -Sera

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        • Yes, I had antidepressant (fraudulently given as a “safe smoking cessation med”) withdrawal syndrome claimed to be bipolar. Then was made psychotic on a child’s dose, .5mg, of Risperdal. The antipsychotics are not truly “evidence based.”

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          • What happened to me seems quite typical, but is denied by the psychiatric community. I hope all the stories like mine start to invalidate the validity of the psychiatric industries’ supposed “evidence based medicine” at some point, especially given how many children in the US whose lives have been destroyed in the exact same manner.

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  5. 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

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    • Thanks so much for reading and commenting, Mackler. 😉 (And thanks for the shout out in your own article, which I did get a chance to read last night!) I’m thankful to know you and not just because you’re talking us up internationally, but because you’re out there internationally helping to change the world and challenge how people see things, too 😉 – Sera

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      • cool sera. you guys really have created something special up there in western mass. to me it would be so backward if they slashed your budget. i can only imagine that the budget-making (and budget-cutters) really don’t have a clue of the REAL value in what’s happening with the Western Mass RLC.

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  6. 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

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    • Thanks, so much Russ! An e-mail to Governor Baker sounds great. People have also been e-mailing the head of the House and Senate Ways and Means Committees and, more recently, the leadership for the Department of Mental Health, though it’s really hard to say what’s most helpful at this point!

      If you’re interested in e-mailing the others, the details are:

      Chair, House Ways & Means: Brian Dempsey – [email protected]
      Vice Chair, House Ways & Means: Stephen Kulik – [email protected]
      Assistant Vice Chair, House Ways & Means: Ben Swan – [email protected]

      Chair, Senate Ways & Means: Karen Spilka – [email protected]
      Vice Chair, Senate Ways & Means: Sal DiDomenico – [email protected]
      Assistance Vice Chair, House Ways & Means: Patricia Jehlen – [email protected]

      Acting Commissioner of the Department of Mental health: Joan Mikula – [email protected]

      Thanks!

      Sera

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  7. 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.

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  8. 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.

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    • Iring,

      We have played along in terms of coming up with questionnaires for, for example, the UMASS survey and promoting it around our community for people to fill out… which was quite a process (particularly the first part), and we also have our own survey that we use for outcomes for our peer respire, for instance that is fairly extensive (can view at the bottom of the page here http://www.scattergoodfoundation.org/innovideas/western-mass-recovery-learning-community-0#.VSnpjpMe1LM )… So, don’t get me wrong, we play along to a certain extent… But I simply CAN’T engage in research that takes advantage of or is invasive to people in our community. It would damage who we are and the relationships we have… it would damage the *real* outcomes we are achieving… and it would damage our integrity… so I just can’t do it.

      It’s just not worth reducing our real impact to ‘prove’ our worth on paper… So, our goal has always been to find the ways to play the game in ways that do not cross that line. It’s a challenge.

      -Sera

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  9. 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.

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    • Thanks, Darby. 🙂 I know there’s the beginnings of what you describe out there – but even people who’ve ‘been there’ in my experience (not all, but some) seem ready to give away aspects of integrity (not necessarily research integrity, but integrity around how we speak about/approach some of these issues) or pursue invasive approaches to research in the name of conducting research… But I’d love to be a part of really brainstorming how more research can be done in a way that’s infused by what we know to be true about what we’re trying to accomplish *and* our values that also reads as meaningful to the rest of the world. I know some people are doing or have done some of that, but it seems pretty rare at this point! Thank you, as always, for being one of the people who ‘gets it.’ 🙂 – Sera

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  10. 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.

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    • Hi markps2,

      Yes, as much as I’m critical of a lot of research I certainly appreciate research like Martin Harrow’s (and so many others, at this point) that offers evidence to support what you’re saying!

      Going back to the stories, we’ve also seen that evidence in people around us every day. There are certainly plenty of people who take psych drugs in our community and I’m not here to take that away from them if it’s their experience that it’s working for them, so I don’t want to give the impression that we’ve created a ‘drug free’ community of any sort… But at the same time, we’ve seen LOTS of people come off psych drugs in our community and come alive. And we’ve also brought in people like Elizabeth Kenny, Daniel Mackler and David Cohen to talk about the potential negative impacts (and how they can get painted as a problem within the person rather than a problem with the chemicals being put in the person) and ways to help people who want to to withdraw!

      It’s more than just the psych drugs, though… People are shut down, infantalized and taught their voice doesn’t matter all too often in the traditional system. More than anything, we’re about supporting people to have a voice and reclaim ownership over their own stories 🙂

      Thanks for reading and commenting,

      Sera

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  11. 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.

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    • Very good point, Joe! Unfortunately it does seem to be the way of things that peer-to-peer orgs and communities are asked to prove themselves more than anyone else… It’s a product of discrimination, I believe, because people automatically trust it less. Thanks for reading and commenting!

      Sera

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    • 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

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      • Steve,

        Agreed on all counts, though I will say there’s some risk on pushing too hard on people’s core belief systems while we’re in this particular fight. People cling to that sort of thing with quite a bit of ferocity more often than not… Though I’m all for fighting that battle in general and we try to do it on a daily basis 🙂

        -Sera

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        • I agree. People get upset about messing with their mythology, and that’s what this is really about – not science, but a mythological worldview where nothing upsetting is anybody’s fault and where magical medicines can make everything all better without anyone having to take any responsibility for changing anything. Your very existence challenges that mythology, and that’s probably the biggest reason your funds are first to go on the chopping block.

          I guess my thinking is that when they ask you about effectiveness, you raise the question, “Are you talking about quick symptom reduction, or long-term outcomes? Because where we make a difference is in the long-term.” I guess there is no politically correct way to do it, though. Maybe passing a copy or two of Anatomy around the statehouse is a prerequisite. But I think facility visits and stories from people who use your services are probably the best argument you have.

          — Steve

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  12. 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

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