20 Concrete Steps to Achieving System Change

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Last year I watched how Kevin Fitts achieved a major victory for peers in Oregon.  He did something that went beyond well-founded criticism of the mental health system.  He succeeded in getting $6 million over two years in order to create four peer respite programs in four areas of the state.  The Oregon Mental Health Consumers Association, a nonprofit 501c3 for which Kevin works as their lobbyist, was the author of the Peer Respite Bill.  This success was the result of a sophisticated approach to system change and achieved by the initiative of Kevin’s work with state legislators as a person with lived experience.

It led me to think about what could happen if many more than one could work in concert using what I have learned from Kevin’s remarkable efforts, as well as what I have learned from my years working within the system, dealing with program and policy changes, budgets and working with the state legislature and local elected officials and policy makers.

Seated among others at a town hall meeting, an older adult white woman raises her handI believe that with the initiation of the highly touted 988 crisis call number system change it is even more critical to advocate now more than ever.  Rob Wipond, Keris Myrick, Shelby Towe, and others have called attention to the likely violations of civil rights with this new way of handling crises, which is under way in all communities in the United States.  The medical paradigm of the system is not changing.  In fact it will be reinforced.  I believe it will result in more people being started on psychiatric drugs, being told they have chemical imbalances for which the medications are the answer, and that they will need to take these in order to stay stable.  (Those who choose to use medications should be fully informed of how they are supposed to help, the risks involved, and the likely benefits, for short, mid- and long-term use.)

To minimize these kinds of results will require the kind of sophisticated advocacy we saw in Oregon this past year.  I offer the following 20 suggestions for advocates who want to get something done and not just vent their quite justifiable criticisms of the way mental health services have been organized historically and are still structured, delivered, and reinforced by 988.  The timing will give us a perfect opportunity if we take it.

  1. Define the goal and the target for making the change and at what level (i.e. federal, state, or local). Start by developing a concept for change.  For example, how do you want real informed consent to change?  The concept at this earliest stage should be as brief as possible, something that is clear and does not try to cover all the details of what you will come up with later. An example of a concept for informed consent would be:  “Most people who take psychiatric medications are not provided with complete information about these drugs.”
  2. Try floating the concept as a trial balloon with a few people familiar with the process of moving these kinds of things along.  If you have a connection with a potentially interested legislator or two who you trust, those might be excellent people to consider.  If they react in shock or lack of interest, you know you have your work cut out for you.
  3. Where would you want to establish it?  Would it be a regulatory change, a state law, a federal or state policy, a contract provision or what?  It’s probably obvious that the higher the level of government or practice or contract level change you are seeking, the more challenging and time-consuming your efforts will be.  You have to be prepared for this.  Start getting more specific language about what the change or changes will be.  The process of creating it should be collaborative.  It should be facilitated by a person skilled in interpersonal relations, organizing, and handling group dynamics.  It should be someone who knows enough about the issue to recognize when your language is as complete as it can be without trying to solve every problem.  Pay attention to words—obviously avoid stigmatizing terms like SPMI, chronic mental illness, and anosognosia unless they are somehow still required in existing statutes or regulations and you can’t change them in this one advocacy effort.
  4. How do you want to affect down-to-earth changes like practice standards or an increase in funding for peer supports?  This could be at public and/or private targets and by working with national organizations such as mental health commissioners or the National Association of State Mental Health Program Directors.  These organizations should be approached via their medical directors or others in administrative positions to accept the language, promulgate it among members, and develop or accept training outlines developed by qualified medical providers.  Other organizations include the National Association of Social Workers, the American Psychological Association, the American Counselors Association, and the National Association of Community Health Centers.  Most of these national organizations have state organizations and these are often most important to engage with in advocating for changes in state laws and county contract requirements.
  5. Who do you need to engage in “sponsoring” the law or rule or policy change?  If it’s a law, you need a sympathetic legislator to understand what you are trying to do and get an initial “read” from them about what they think is realistic and what they can seriously consider supporting.  The same kind of thing applies if it’s a rule or policy—you need an administrator or manager as high up in the local or state government system as you can get to understand and help with what’s realistic.  In most states, this would be the behavioral health director, who is normally also the state mental health commissioner.  These individuals have authority in making statewide changes, although turnover is high—the average commissioner lasts about 2 years or less.  It is a politically sensitive position and there is usually reluctance to go out on a limb and jeopardize their tenure by taking unpopular stands.  Counties have community mental health directors to consider, but these organizations do not have the authority of the state leadership.  A change in federal policies or statutes would be the most difficult and time-consuming to achieve.
  6. Don’t let other issues distract the process, like mandates for masks, requirements for Covid vaccinations, etc.  Whatever one’s personal concerns may be in these kinds of situations, expanding the initiative will itself create enough controversy and opposition without adding more.  This will also confuse those who have the authority or willingness to work with you on changes.
  7. Anticipate who will oppose it—physicians and psychiatrists, insurance corporations, many public and private policy directors, various bureaucrats, and the professional organizations already listed above.  For example, corporate and other groups with lobbyists (particularly the pharmaceutical industry) have great influence on elected officials.  Legislators and candidates for office often get some funding directly as well as through Political Action Committees.  Their ideas about mental health are usually based on the belief, based on the medical paradigm, that there are chemical causes of mental health problems and that the medications restore the balance missing.  This will come up repeatedly in many ways.
  8. Prepare ethical and science-based positions to support your proposed changes.  Again, using the example of informed consent in suggestion 1, counter-arguments would bring up the fairness of supporting people’s right to choose.  Cite independent researchers, and innovative programs should be referenced.  It is extremely important to present them in plain language and not in a technical or academic way.
  9. Prepare solid information on the risks of the change.  Changes almost always involve some degree of risk.  One risk will be to deal with opposition from organizations and individuals who are seen as authorities.  This is usually politically sensitive and therefore presents a kind of paradigm shift that does not come comfortably to elected officials.
  10. Identify authorities who would be willing to submit briefs or provide testimony.  It is unlikely to get this kind of testimony written by well-known programs or researchers themselves; however, it is always possible to ask them and surprising the amount of the time they will give it.  The worst that can happen is they are not available or just don’t respond.
  11. It makes a lot of sense to draft testimony that speaks to the change you are trying to make and submit it to people who are more well-known at whatever level you are working on.  State and local experts are best.  Peers can also be a powerful force and could include some who have worked on crafting the bill or policy or clinical change.
  12. Assess the costs of your change or changes and who or what kind of funding would pay for them.  Assess the savings that could come, to whom, and when they could be expected.  Identify the benefits, such as reducing the costs of medications.  In Oregon, the cost of all Medicaid-funded psychiatric drugs was provided within a few days using a Freedom of Information Act (FOIA request).
  13. Engage other advocates—peers, families, advocate attorneys, prescribers who would be supportive.  Many will hopefully be involved in discussions and even a work group. In any event, develop a strategy team and then a strategy for who will be key advocates for the changes.  Create agreement on the strategy and ways to work out disagreements, confusion, changes in the process as you go along.  Do not let personality conflicts or other divergences from all of the above create tension.  Opponents will play these to their advantage.
  14. Figure out how to deal with issues related to involuntary treatment.  This is one of the most challenging, legally perplexing, and politically difficult.  Obviously, by definition, these individuals do not have a choice.  Getting legal advice is critical here.  Choice is almost always limited in state prisons, local jails, state hospitals, youth authorities, nursing homes, and child welfare settings.  It is well-known that forced treatment and psychiatric drugs are far too often used to control behavior in the present moment but then continued far beyond.  A principle should be that choice should always be respected, and honest information should be given to people and families involved with the mental health system.
  15. Figure out what resources would be used to educate prescribers.  This is another critical issue because many if not most prescribers really don’t know enough to do a good job.  Figure out how to get medical education resources like medical schools, CME resources as incentives, and FDA “Medication Guides.”  Ideally a department of psychiatry at your state’s medical school could be enlisted to help.  Having that kind of authoritative and respected source would be an incredible resource.  Developing CME credits is extremely challenging if attempted outside those familiar with the process.
  16. Determine timelines for implementation.  If you leave these out or they are indeterminate, it is likely nothing will change.  Identify when and how changes will be monitored and enforced and do not leave these issues out of the statutory or other regulatory changes you are seeking.  It will be a challenge even then to enforce them but remember Saul Alinsky’s admonition—one of the most radical things you can do is to make the system follow its own rules.
  17. Create a public information strategy—what’s needed to get broad support and “change the conversation.”
  18. Draft the bill or policy change you want based on all of the above.  Unless you have people with these skills already on board, you will likely need at least some consultation from people familiar with this process to make it credible.  Decide who is best to testify at hearings and work on preparing testimony for hearings.
  19. If adjustments are needed, which they sometimes will be, assign this to the strategy group who will then do whatever checking with proponents of the change is advisable.
  20. Do not let this take forever because timeframes usually have limits, such as the end of a legislative session.  Be sure to learn what the timelines are for the decision makers who are involved.

These suggestions are offered without claiming they cover every possible effort to make system changes.  But they are an attempt to give advocates a head start and ideas for steps that otherwise may not have been readily available.  System change is never simple, nor is every system changeable.  Many will and should continue to raise objections to reforming what can be viewed as a hopelessly flawed world of mental health.  But the kind of changes led by Kevin Fitts and his allies are going to offer choices where there have too rarely not been choices before.  That seems to be a bedrock principle to me.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

35 COMMENTS

  1. 2 Concrete Steps to Achieving System Change:

    1. Prosecute the government issued license holders of the mental health system in International Court for Crimes Against Humanity, drugging, using their license to tell someone that they are “mentally ill”, and everything else.

    2. Prohibit our government from licensing psychotherapists. And where there are such sessions occurring with minors, enforce mandatory reporting as it was intended. Anytime a child shows up for therapy it has to be reported to Child Protective Services so that there can be court oversight, and follow up reports have to be made, and the therapist has to try to get to the care takers and report, or report that he cannot.

    Joshua

  2. The nature of a totalitarian system is that it is impervious to transformational change, and allows only cosmetic changes, which are trumpeted as major breakthroughs. The “mental health” apparatus is such a totalitarian system. In the above article we’re basically talking about rearranging the deck chairs on the psychiatric Titanic, which needs to find its iceberg asap.

    And WTF?:

    Don’t let other issues distract the process, like mandates for masks, requirements for Covid vaccinations, etc. ?

    Someone who purports to oppose the mh system would even isuggest that anti-MH activists should support such forced totalitarian nonsense???

    To-tal-i-tar-i-an. Get to know the word folks, you’ll be needing it more and more.

  3. This is basic strategy for leveraging beaurocratic systems and very good advice. Often those systems ate impervious to change due to vested interests and inertia so I would advice also looking at direct action campaign strategy and movement building strategy. A good place to start is Strategy and Soul by Daniel Hunter. I used some of his techniques very effectively in a Campaign a few years ago.

    http://www.strategyandsoul.org/Strategy_%26_Soul/Home.html

  4. I don’t mind this list of ideas, but I wish the tone of it had instead also expressed two things that feel absent…

    1) More empathy for expressing frustration
    People are not “just venting” and it feels a bit disparaging and patronizing to frame it that way. This is real suffering we’re seeing from the end users.

    2) Validating that advocates, at least as an ideal, shouldn’t be the ones forced into doing this work
    This is a complex and nuanced point. On the one hand, I acknowledge the oppressive reality in front of us. But I also don’t accept it. I am tired of narratives that frame everything as the advocate’s responsibility, versus also calling out others and systems that SHOULD be helping these efforts. Even if the harsh short-term reality is that they aren’t doing the work and are forcing the advocates to do it instead. Acknowledging that injustice felt absent from this article.

    It feels very telling that this article was written by a within-system, licensed professional, government official white male. There’s a characteristic talking down to tone that is so typical from people in such roles.

    I am so sick of hearing what I, the abused and neglected service user, need to do “differently” or “better” to get attention. Even if it’s arguably effective, it still on another level feels insulting and disrespectful.

    Where is the empowerment to come TO ME and EMPOWER ME, versus this shaming-feeling article about why I need to change. While certainly not intended, it feels shaming and victim-blaming.

    That’s why I’m highlighting the two points above. To be clear, note how I’m not trying to disagree with the practicality of the article.

    Often the thing most lacking here is SUPPORT and CAPACITY BUILDING.

    Apologies if this comment comes off as harsh. I can own that I’m being defensive in part because I’ve spent two years advocating, getting retraumatized and abused, and I despite any narrative that hints at me doing outreach to them wrong, versus them being oppressors and abusers.

    Maybe put another way – the people in charge shouldn’t be making it THIS hard. And part of my advocacy is a demand to be worked with rather than wholly catered to.

  5. Put another way, the amount of work you’re proposing here would take a full-time staff of maybe 6-12 people or more. Many of the blog readers here are any or all of the following…

    1) Poor
    2) Unpaid
    3) Discapacitated by their condition(s)
    4) Under-resourced in general

    I would love to be able to hire quality legal aides, write concise and heavily researched position briefs, perform full cost analyses, etc.

    Where is the time, energy, and money for such work going to come from? These tips are, in general, not bad suggestions. But without capacity I’m just not really sure what to do with this post.

    And, like I said somewhat angrily in my other post, it gets tiring as an advocate to have this level of work asked or demanded of us with zero financial or social aid of any kind. That’s why it felt so insulting and tone-deaf to read from my end as a grassroots activist.

    It also may be that I’m not a good target audience for this post and that’s valid.

  6. A position of “Anti” anything, from the get go creates an averserial, “us vs. them” false dichotomy. It failed with the war on drugs (became about locking up people cycles) it failed with the war on poverty, established ghettos and harm zones, and it has been and is failing with the war against psychiatry. I fully relate to those who have been victimized, addicted, and put on a path towards the ovens, because it is happening To Me. Our object should not to make enemies of people, who probably got into psychiatry to either help themselves or others Initially, INSTEAD we should provide Real, Rational, and Compassionate paths for those professionals to become our Allies. The First Step Is To Recognize, People are not the uniforms they wear or the titles they earn, they are first and formost Fellow Human Beings, and as such in default position from the start as a natural ally. If we go down the Anti-Psychiatry path, what we fear and fight, will rule and destroy us, its feeding a cycle of trauma, which is the basis of most of the problems in our Civilization.

    • I generally agree with your sentiments, however, I have noted there are times in one’s life where the other party is simply not interested in collaboration. This is particularly the case when there are substantial power differentials and/or when there are financial conflicts of interest. I am afraid to me that psychiatry has reached the point where both of those issues have made them impervious to logic and compassion as a profession, even if individuals are capable of seeing the damage psychiatry has done and want to change it. The latter deserve to be reached out to and asked for specific actions that would be supportive, but the former are safe enough with their power to simply deny reality and keep on with the “theories” that have made them so much money and given them so much control over the industry and their “mentally ill” charges. Bob Whitaker himself has always been open to discussion regarding his findings, and has appeared with psychiatric industry luminaries to “debate” the issues at hand. The result is almost always the same – they don’t debate, but they attack and undermine and lie and manipulate their way into defending psychiatry’s entrenched position. They can’t AFFORD to face reality. How is one supposed to collaborate with that?

  7. Thank you Bob for an excellent summary of working within the system for change. Our advocacy group National Coalition for MH Recovery plans to highlight these points.However, we equally need outside the system advocacy. We need to go directly to the the lay public, exposing the numerous lies made by mainstream psychiatry such as the chemical imbalance myth, the limited effectiveness and danger of medication, the need for alternatives to coercion and confinement etc. we will propose alternatives at the Alternatives Conference 2022, Nov 2,3,4. Go to http://www.NCMHR.org

  8. What if Abraham didn’t just go to Sodom to rescue Lot and His Family? What if Abraham bought a lot, next door to Lot, and brought all of his tribal buddies with him from out of the “rural areas”, started a farmers coop and promoted food as medicine and loving committed relationships more profitable than orgasms or inebriation? Plus, additional still drank whine and broke bread? LOL!

  9. This does feel shaming and victim blaming. I can’t even speak about my history without the very real fear of attack and, like Rachel, I’m in hiding. When I could barely walk, i moved to a different state because I wasnt safe where i was. I did this completely on my own. As far as what we want, there are laws already in place that get broken on a daily basis; some of these were laid out in the article about attorney Elizabeth Rich and her fight against unjust commitments. What stood out for me most in that article is that the judges, attorneys, doctors etc involved in these cases break the law on a regular basis and don’t even think about it. Can we start with: please stop breaking the law? But these people (the ones in power) literally laugh when the UN says forced psychiatry is a violation of human rights. If a person in my situation says it, they’re just going to laugh louder.

    • Absolutely Kate!

      The author signed off on his orders with a MSW next to his name. He knows the problem but he himself cannot change anything because he is compensated to be the problem…

      The performances are obvious and insulting, Robert. Please do these steps yourself and then tell us how it goes.

      -anotherone (making changes without a masters in social work)

  10. Having devoted 40+ years of my life to this struggle for respect and freedom for those of us labelled mentally ill I am beyond an either/or approach. I like to work on three fronts at the same time. I promote as many alternatives as the system will stand, such as peer-run respites, advance directives, peer-run state advocacy(such as On Our sown of Maryland), person-driven planning Warmlines etc through the National Coalition of MH Recovery and the Alternatives Conference and at the same time work towards deeper cultural change by connecting our struggle with the struggle of other oppressed groups through intersectionality such as the disability community by NCMHR’s membership in the National Disability Alliance for Mental Health, NDLA and the BIPOC and LGBTQ + communities. II also work within the system as a psychiatrist on the fringes of the system by my practice of open Dialogue and a developer of emotional CPR or eCPR. We need many avenues for change but we need to respect each other on the process. I have seen many positive changes in these 40 years but I know we have many miles to go before we are closer to a just and carrying society,

  11. The NY Times is doing a series of editorials addressing “the mental health crisis”. Here is a recent article:
    https://www.nytimes.com/2022/10/04/opinion/us-mental-health-community-centers.html?smid=url-share

    I think it would be helpful if various thought leaders — people with credentials and with experential and academic knowledge of the scope of the problem, including contributors to MIA, Inner Compass, etc.– were to respond to some of these articles and contest some of the “accepted facts” that the arguments within these pieces rely upon…such as the “fact” that evidence based treatments like antipsychotics are part of the solution.

    I have made many comments contesting the ideas put forth in these opinion pieces, but i get ignored or told i dont know what im talking about. To most of the readers, I’m just a wayward, non compliant former patient who lacks insight.

    The comment section is currently down due to technical problems. I wonder about that, but maybe I’m paranoid.

    • I actually do believe I’m being blocked from commenting on this NY Times mes article. I’m still getting the message that comments are disabled due to “technical difficulties”; meanwhile, the number of comments has gone from 200 to more than 400. Someone is being allowed to comment!

  12. Can someone with a phd, an msw, an md, and a publication history please write to the New York Times and call them out for publishing hate speech in their comments section?

    https://www.nytimes.com/2022/10/04/magazine/parental-care-ethics.html#commentsContainer&permid=120766656:120782377

    What theyve published here is certainly enough to make a vulnerable person suicidal. This is not a matter of free speech, as the majority of my comments were not approved. This is a matter of the NY Times continuing to uphold already many times debunked/disproven ideas put forth by the reigning psychiatric establishment. Even within the column itself, there is problematic language. A letter writer asks “The Ethicist” what should be done about her mother who has “undiagnosed mental illness”. “The Ethicist” does not question, but accepts the letter writer’s notion as fact ( oh sure, undiagnosed mental illness, that’s a real thing. So not only have we accepted now that mental illness is a real thing, but undiagnosed mental illness, also real. Anyone can accuse anyone else of having undiagnosed mental illness. This gets scarier when you see the comment section which is full of advice to the letter writer that she should contact The police, Adult Protective Services Etc. Have the mother forcibly removed from her home, locked up and forced medicated.)

    The comments section contins more ideas, including:

    “Borderlines” are all manipulative liars.

    Bring back the asylums.

    Some people should be put down, just like we do animals (except that most difficult animals are deserving of a second chance)

    Advice to send the police into the home of an elderly woman who has committed the crime of living in a way her daughter disapproves of.

    “The crazy person does not get to be in charge”,

    I could go on. As a “borderline mental patient” i dont have the authority to impress upon the NY Times or anyone else that this is hate speech.

    Don’t the people who have been most grievously harmed by this system, and who continue to be threatened, silenced, and attacked when they try to speak up for themselves and speak of the reality of the mental health system, deserve allies? Will someone speak for us?

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