So You Say You Want a Revolution?

Robert Nikkel, MSW
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It’s commonplace to hear that we need a big change—a revolution, if you will—to make “the system” recovery-oriented, to replace the tired old over-emphasis on a biological model and to replace it with a new more hopeful standard of care.  I know—I have used all these catchwords myself for the past several years.

I know too that there are great controversies and strongly held differences of opinion among us about whether significant change can happen and whether it will ultimately be grassroots or top-down.  I don’t pretend to know the answer to whether or how it may happen—though I suspect it will be some of each. But I can’t really accept that nothing will change and that I should go off and just pursue my hobby of taking photographs of the beauty in landscapes.  I do know I would keep up the grassroots re-education work of the Mad in America Continuing Education Project because this kind of field work is going to be essential to changing the standard of practice, no matter what the larger systems issue look like.

For the sake of argument and showing how a more top-down strategy would look, I will describe 5 C’s and how they would be essential elements of that strategy.

They are:

  • Commitment
  • Courage
  • Creativity
  • Capability
  • Care

Before going further, I would like to differentiate between the two largely separate systems of care in mental health — the private and the public.  Full disclosure requires me to admit that my professional experience has been primarily in the public system for about 35 years, 20 of them in administrative leadership roles at the state level.  Most instructive were my nearly six years as a state mental health and addictions commissioner in the early to mid-2000s.  Therefore, I will concentrate my thoughts and suggestions on the world of publicly funded programs—all the way from prevention and early intervention to state hospitals and everything in between.  For now I’m going to focus on what I know best and leave the private insurance and private pay world for another time.

The first thing to understand about public mental health and addictions is that the world is highly politicized with many competing and contradictory forces at work.  Much of the funding environment is concentrated on fiscal and public safety risks.  Just getting attention for mental health outside a major crisis is an achievement in itself. These forces operate at several levels—community mental health “authorities” with local elected officials often involved along with a myriad of advisory committees, councils and boards.  At the state level, the input is gathered again from relationships with community and hospital providers.  It is sometimes gathered from “consumer” councils and almost always from personal and professional relationships that condition everything that happens.

Ultimately, the state legislators make the key decisions with lobbyists and bureaucrats because the buck stops with them for funding their state’s services.  This all goes back historically to the veto by President Franklin Pierce of a land grant bill passed by both houses of Congress in1854 that would have established the federal government as the funder of state insane asylums—which is just a background topic for another time.  The important point is that, while federal Medicaid funds are a major, if not the major source of funding for community mental health services, the states must still pony up their own funds — usually around 60% — in order to get a share of the federal funds.

Now, it’s all a lot more complicated than this and there are other players (such as major metropolitan areas and relative newcomers like accountable care organizations that are totally distracted by demands to “integrate” mental health and health care services) and some federal initiatives (like the Murphy bill) that can create more dynamics, havoc and targets for change.

Two key characteristics of public mental health systems are these:

  1. The predominance of Medicaid funding  means that a good portion of the services are, by definition, based on the medical model.  And
  2. psychiatric medications are a major but hidden cost driver.  I’ve written elsewhere about the $200-300 million cost of psychiatric medications that were over and above the $500 million budget I had in a small state like Oregon.  The pharmaceutical lobby has convinced this legislature and most others to separate these funds from the rest of the Medicaid budget so that they are uncontrolled expenditures.

Our work is cut out for us.  This is not for the faint of heart or the totally inexperienced.

With all that as background, I can tell you that the first step in a process of pubic system change is Commitment.  There is an extraordinary amount of work that needs to be accomplished and there will be resistance of many kinds — the inertia of decades of the old model, professional and cultural resistance, political push back from the usual suspects in nice suits, layers of accumulated administrative procedures, and the indifference and stigma that accompany efforts at the legislative level.  And commitment will have to be developed with the expectation that whoever is the state’s mental health commissioner — ideally someone you’ve enlisted as a change agent — will not likely be there more than about 2 years later.  For example, when I left my position in 2008 and looked at the list of the 50 commissioners in 2011, only 3 were left who I’d worked with during my tenure.

The second C is Courage.  For obvious reasons, the shots will start being fired at the kinds of changes that will be needed.  All the accusations that we already hear will come out in megaphone style — you’re antipsychiatry, you’re anti-medication, you’re Scientologists, you’re tilting at windmills, you’re going to get fired and on and on.

Third, this kind of system change will require Creativity to design a credible plan.  The plan should look something like this:  The state mental health department will take control of the budget for psychiatric drugs and reduce the unnecessary and unproductive use of these drugs.  The plan would commit to improving outcomes like reducing inpatient costs, improving functional outcomes — people doing better with work, school and social lives — all quite measurable.  In order to do this, a large portion of estimated medication cost savings would be reinvested in things that work — peer supports, housing, improved psychosocial interventions that have unbiased research to support their effectiveness.  To sweeten the pot, the plan could offer up a portion of the cost savings from reduced medication use to meet other state budget needs.

Opportunities will present themselves for change — a major budget crisis is one of the best because it gives one an open window to airing out the fiscal costs of business as usual.  As I noted above, the cost of the psychiatric drugs themselves is a major cost driver.  It would be critical at the outset to have an accurate assessment of the costs of psychiatric medications, whether they Medicaid funds or other funds.  To get there may require using public information request procedures — that’s what they are there for.   And then to point out that all the available research shows that outcomes are worse when people are on multiple drugs at high dosages for long periods of time.

The budget cycle is one that requires a careful analysis of these kinds of costs and then a viable budget proposal that has to be vetted at several levels.  The plan must take into account how all the other funds are allocated — do they go to providers directly or are there layers of intermediaries like local government, accountable care organizations or hospitals or combinations of all these?  Who are the players who will be in a position to implement changes?  The more that all the potential partners are involved and the fewer surprises involved, the better.

A creative plan will look at all the types of funding available (state General Fund, Medicaid, local funding if any, grants, etc.) and understand where there is flexibility and where there isn’t.   As noted already, a key feature of a plan will be to reduce the wasteful funding of psychiatric drugs and not lose the funds (at least all of them) to budget deficits that the state has to make up for because of poorer revenue forecasts or whatever drives budget problems.  Part of the plan must be to specify which non-drug services and supports are needed as more humane and cost effective alternatives to the current paradigm of care.  Many of these services may already be in place, some may need to be created.  All of these considerations must be woven into a coherent program and budget proposal.

This leads to the fourth C — Capability.  What I’ve described in terms of insider processes will require real knowledge, skills and abilities.  Good intentions and abstractions are fine but won’t complete this kind of work.  Technical skills in writing proposals, doing fiscal analysis, and being able to explain the plan in largely layman’s terms are required.  A resource that is often overlooked but might make all the difference is that of people who have worked in the system but who are no longer bound to it — retirees are often wasted resources.  Many of us had our hands (and sometimes our minds) tied and still want to make a difference.  We can serve as consultants, drafters of budget and program proposals, critical reviewers, and networkers with key players still working in the system.  Many of us know how to do such distasteful things as writing policies and administrative rules.  These will all be necessary parts of an inside systems change.  One other essential capability will be to find and engage partners in the process – progressive psychiatrists, mental health administrators who have begun to understand the need for better outcomes, really good budget analysts, peers and other advocates for change, service providers who can speak to the need for more services as alternatives to over-medicating people, and a few legislators who can champion a challenging political battle.

Finally, the process must be managed with Careful attention to the risks involved.  Whatever plan is created to assist with the reduction in use of psychiatric medications has to be crafted with great care and attention to the risks in drug withdrawal or reduction protocols, informed consent procedures, fearless critical incident reporting and analysis, and data collection for evaluating progress.  Acknowledging the risks up front is important even as the risks of continuing business as usual is highlighted as part of the need to change.  We already know that the risks we’re taking now in terms of human suffering and poor outcomes and out-of-control costs outweigh the risks we would be assuming.  Ultimately, a retooling of the system is going to require careful attention to training and educating existing and new staff.

Maybe this is discouraging to contemplate.  Maybe grassroots is the better option, but this initial shot at what’s involved in organizational system change is intended to jump-start a conversation about what is likely to be involved.  I would invite any and all comments to what I’ve outlined.

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21 COMMENTS

  1. Did you used to head the Oregon State Hospital? http://www.oregonstatehospital.net

    What are your comments on the issues of patients being murdered and spied on at the facility and even subjected to military police tactics?

    Some of the patients were killed with drugs, like Chris Crawford (drugged during incidents of retaliation by staff, when he reported crime of staff) and Moisez Perez.

    http://www.statesmanjournal.com/story/news/politics/2014/12/19/family-man-dead-osh-threatens-sue/20661279/

    I sent you an email once as you were the administrator of the place and you did respond, but the state covered up all the incidents I reported, targeted me while not saving the security video and audio mentioned, setting me up to look psychotic. To prove I’m truly ill, surely they have the security video and audio showing these events never took place? Or did they destroy it to hide all the events I went through?

    http://www.oregonstatehospital.net/d/emailreply_june13th2008_reoshstaffbehavingbadly_fromdhsadminrobertnikkel.pdf

    They didn’t want to get caught covering up crime with the states lack of liability insurance. And the scandals if publically exposed, would have resulted in all the staff losing their jobs and the facility would have been shut down. A new facility was built, wasting $400 million in tax payers dollars.

    I’ve faced murder attempts and 7+ years of violent abuse from the state, torture, surveillance, and set ups by these guys.

    BTW: drug wise, they use them more like weapons. Psychiatrists, being weapons of the state, prescribe drugs to tranquilize and damage citizens, to make them disabled, immobile, and unable to fight the staff back for abuse. There’s some patients who appear to be fully functional early on yet spend 20+ years in this place, drugged to death, or killed through other misconduct (suffocations, physical assaults from staff during seclusion and restraint, etc).

  2. “…to replace the tired old over-emphasis on a biological model and to replace it with a new more hopeful standard of care…”

    Sir, the “biological model” of psychiatry is far more destructive than merely being tired, old, and overemphasized, or whatever other euphemisms you care to call it.

  3. “a major budget crisis is one of the best because it gives one an open window to airing out the fiscal costs of business as usual”

    Except when politicians are paid off to create this crisis and the money is shamelessly taken away from the 99% and funneled into the hands of corporations, including pharma. Which created a double bind since poverty and chronic stress cause more so-called “mental illness” which is scary and has to be drugged. I’m starting to think the revolution has to be of a different kind and not only limited to psychiatry.

    • “I’m starting to think the revolution has to be of a different kind and not only limited to psychiatry.” I completely agree, B. The US has seemingly been taken over by the central bankers and corporations our founding fathers warned us of …

      “If the American people ever allow private banks to control the issue of their currency, first by inflation, then by deflation, the banks and corporations that will grow up around them will deprive the people of all property until their children wake up homeless on the continent their Fathers conquered….”

      Robert, as to, “all the available research shows that outcomes are worse when people are on multiple drugs at high dosages for long periods of time.” Robert Whitaker’s research points out that the ADRs and withdrawal effects of the ADHD drugs and antidepressants have been frequently misdiagnosed, according to the DSM-IV-TR (but not now according to the DSM5) as bipolar, especially in children, in the US.

      And drugs.com points out conclusively that the antipsychotics / neuroleptics, the supposed gold standard “cure” of schizophrenia and bipolar, cause the symptoms of schizophrenia, especially when combined with other drugs, or used in combination.

      “Agents with anticholinergic properties (e.g., sedating antihistamines; antispasmodics; neuroleptics; phenothiazines; skeletal muscle relaxants; tricyclic antidepressants; disopyramide) may have additive effects when used in combination. Excessive parasympatholytic effects may result in paralytic ileus, hyperthermia, heat stroke, and the anticholinergic intoxication syndrome. Peripheral symptoms of intoxication commonly include mydriasis, blurred vision, flushed face, fever, dry skin and mucous membranes, tachycardia, urinary retention, and constipation. Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

      And I know from personal experience that a grown healthy adult who had the adverse withdrawal effects of a “safe smoking cessation med” / dangerous antidepressant misdiagnosed as “bipolar,” “paranoid schizophrenia,” and “depression caused by self” by unethical doctors with ulterior motives. That a child’s dose of Risperdal, .5mg, can cause psychosis / hallucinations within two weeks of being inappropriately put on a neuroleptic, recorded in my medical records as a “Foul up.” And this “Foul up” was covered up with staggering amounts of drugs by subsequent psychiatrists who wanted to cover up the “dirty little secret” realities of the entire psychiatric industry. This means the pharmaceutical industry recommended child’s dose of the antipsychotics are not actually safe for children.

      The bottom line is the DSM concisely describes the iatrogenic illnesses CAUSED by the psych meds, but it does NOT describe accurately any “genetic” illnesses.

  4. Robert Nikkel – When nothing much can changed because of entrenched interests and the bad models of treatment and evaluation prevailing, I believe that the budget overhaul sets the best of what to aim at and shore up into focus, too. But I’m sorry to find that just my experiences managing small business concerns was enough for us to think a like, since you got see the doors open in places that I had to pay to stay locked up. Meanwhile none of the treatment was appropriate, or is it better to say it was all misguide or what should I say after starting to get somewhere helping myself? Again, you at least got some say in how all the doctors and their little helpers you administrated for did their jobs, somewhat. I had to learn everything they were supposed to know to tell to do and the whole of everything the told me to do that was wrong just get them to let me get other stupid answers to any questions that were also still things for me to research by myself later on. Good luck getting any of these people to so much as question their images of themselves on your watch. I notice they never have customer service windows at their hospitals for returns or refunds on mental services that weren’t ever going to be worth a damn.
    Predictably, as the usual way staff operate in those environments readily shows. Please stick a pin into these blind faith healers faith in what they sell.

    • I wish I had been more enlightened and aggressive during my commissioner days (2003-2008). I like the idea of customer service windows at the state hospital; but really, we need to find a way to get the entire hospital system to be customer service oriented. A huge huge challenge to change cultures.

  5. Bob thanks for writing this piece and for describing a top-down strategy from your experience in health administration leadership and management. I know where you’re coming from as I have qualifications in administration management and am a systems thinker. I have often led teams of volunteers, students and people in communities, from the grassroots, but nothing from the top down. As a development worker I tended to move on to other grassroots initiatives. However I know that someone has to be up there at the top, leading. I have no problem with that.

    But I do believe that real change in mental health services and a paradigm shift in the psychiatric system will come from the grassroots, with help from those at the top. It does has to be the psychiatric survivors and mental health service users who are the main protagonists. I am absolutely convinced of this. My life experience up to this point, 62 years young, of being a mental patient, a mother and a psychiatric survivor, tells me it can be no other way.

    I’m not advocating for a forceful manoeuvre or a taking over the asylum type of action although at times I may feel like doing so. Because of the injustice of it all. For I didn’t like being forcibly drugged against my will in the 1970’s, the 1980’s and then more recently coerced into swallowing the pills in 2002. I had to taper and get off the drugs under my own steam. And have helped family members do the same even right up to the present day. For nothing much has changed and in fact in some ways it’s got worse. Polypharmacy and multi drug cocktails tying people in to a coercive system.

    I got involved in mental health activism because of the peer support movement in America which we heard about in Scotland, 2005, and it persuaded me to start up Peer Support Fife in 2008. However I soon realised that the government had indeed hijacked the recovery agenda for their own ends and to get folk off welfare benefits because here in the UK over 40% of people on welfare benefits were those with mental health issues. So it was a money thing. Which is understandable. But to me it was annoying that the peer movement was more of an employability tool than a civil rights affair. If I’d known that then I wouldn’t have got involved.

    Now I’m up to my neck in it, as a writer, activist and human rights campaigner. It started off with peer support. That is the irony. Although at heart I’ve always been a grassroots community worker, with people, alongside, not much money, social action, living in a council house (social rented accommodation). Scotland is a socialist country at the roots so it has always been possible for me to remain grassroots, not owning much in the way of possessions, and still have a “good” life, food to eat, varied activities, not losing out on anything.

    In conclusion, it has to be a grassroots uprising, a movement of people who have been at the sharp edge, had their rights taken away, been silenced. Because we were there and experienced it. You can’t know what it’s like until it’s happened to you. Therefore that gives us the right to lead and to set the agendas. With the support of people at the top, people who have led from the top down. There is a place for everyone in the movement for change. But the leaders will come from the grassroots and the collaboration, negotiation, adaptations, will come from the top down. Or that is how I see it anyway.

    • Chris, thank you very much for your thoughtful comment. I like the way you put it–real change will come from grassroots and can at least be supported by those at the top with, as you say, collaboration, negotiations and adaptations. I don’t pretend to know all the answers about how to do this. My blog was an attempt to stimulate this kind of conversation and appreciate your point of view very much.

  6. Here’s a way to simplify the problem. Slay the Dragon of Psychiatry.

    Psychiatry is like a great dragon. It cannot be “changed” or “tamed” or “reformed” or even “revolutionized.” It must simply be slain.

    Do you think that Hobbits, Elves, Dwarves and the people of Laketown would have been safer with a top-down or grassroots approach to Smaug?

    Do you think that World War II would have ended if Churchill had joined sides with Chamberlain and sought a top-down or grassroots approach to Hitler?

    Enough of the lies. Slay the dragon of psychiatry.

  7. Bob, Thanks for this piece. I liked how you laid out the challenges. I think one of the toughest parts of this plan will be to prevent the state from redistributing the savings of a more humane and effective mental health system. And the savings may not be easy to calculate in the first place. For instance, how does one calculate the ‘future’ savings of an effective early intervention program like Soteria?

    In a perfect world, the monies saved by catching individuals before they become chronically institutionalized and ‘helpless’ for life would be redistributed to help those who have been in the system for a long time. Many resources have to allocated on continuing to help individuals who have been chronically harmed through over medication and institutionalization.

    The other challenge not alluded to in this plan is the resistance of family members who are very strident and vocally opposed to change. Family members are terrified that their family member may have a crisis. Many were on hand to witness horrific experiences when a loved one tried to unsuccessfully taper off one or more medications. Many family members are suffering from secondary trauma that has not been dealt with for years and years. Their trauma has been cemented over with years of indoctrination and ‘peer support’ from pseudo consumer organizations. When an individual has a crisis, the entire family has a crisis but the mythology that is used to provide consolation for the families in crisis only reinforces the disease model which creates a circular trap for the entire family.

    It is also painful for family members to acknowledge the horrific long term side effects of over medication. Many loved ones who suffer from cognitive and physical impairment from long term neuroleptics use may get little to no family support, let alone from the system for the effects of their poisoning. There may be a population of individuals that can never be safely weaned off high doses of multiple medications due to structural changes to the brain. Most of this hasn’t been researched. This plan should call for more research into this area.

    Regardless of what the research tells us (if massive, voluntary withdrawal studies ever get funded) people deserve social inclusion and every sanctuary that society can offer, especially if they are victims of psychiatric harm and abuse.

    • madmom, thank you, I think you’re pointing to many of the significant obstacles to the kind of system change I was trying to describe from a former “insiders” perspective in state and local government. I really like the way you frame the experience of family members who haven’t gotten real help for their loved ones, and instead have been treated to a mythology that reinforces the disease model.

  8. What an awesome write-up and simplified overview of how these things work… as a layperson I catch glimpses, but never having worked in government don’t really have a clue to the larger picture like you describe so well, what factors come into play and how complicated it is.

    I thought ‘Gore’ when reading the above, and crazy fun Tipper. What a different world/country/mental health care and other system we would have if our fascist Supreme Court at the time had not intervened in our democratic process to assign the presidency to George W.

    Maybe some day we will have a new opportunity to progress, but I – in my limited view admittedly – only see years and years more of a fight to stop atrocities from occurring (more war, the elimination of social security, etc.) and the fascist trend this country has been on.

    Let’s hope for more leverage from the 2016 upcoming election. The alternative is incredibly frightening, to anyone who understands abuses that go on, are going on.

    Targeted individuals, innocent people being tortured… to name one little one.

    • Molly, thanks for reading and commenting. My goal here was simply to open a window into how things at state and local organizational levels tend to work. I’m not terribly optimistic but there are some who want to work from within the system and maybe this will be of some help in thinking through the issues and dynamics.

  9. Hi, Bob!

    This is a great overview of the complex political machinations that drive decision making in healthcare. It is notable that patient outcomes are a very low priority, with saving money and “public safety” (as perceived by those in power, of course) at the top of the priority list. While the kind of changes you suggest can happen, there is and will continue to be no political will to do so until and unless the masses rise up and demand these changes. At the moment, the foxes are guarding the henhouse and enjoying their delectable easy meals and aren’t going to give up their dominance without a very big fight. And politicians don’t engage in that kind of fight unless their election to office depends on it.

    So let’s get the grassroots going and make some noise! We know that these changes can happen, but we have to show that the danger of going against the pharmaceutical lobby pales in comparison to the danger of going against the citizens of the nation.

    — Steve

  10. I sometimes wish they would ship us all off to an island where we can be resort to just being people amongst other people. The simple truth is the mentally ill are the most reliable scapegoat in a country who’s political propaganda depends on a fear mongering and having someone to oppress. Our inability to fight back has made us a perfect target, creating a profitable and politically motivated distraction (albeit distasteful). I don’t know when I stopped being a person, but I am tired of it. I don’t want to be ashamed of a system that should be more concerned with how morally repugnant profiting and demeaning a group they have deliberately robbed of protection and less concerned with the fact that my thinking is a bit more sideways than theirs. They go on and on about their invented levels of violence, but while I fit their definition of seriously mentally ill, I couldn’t live with myself and make the choices they have made. Also, You should consider a creative option like survival discussions or presentations. Psychiatric survivors know exactly what it’s like to live with mental illness, and we are particularly adept at offering solutions to living with and learning to understand the way mental illness works.