Monday, December 5, 2022

Comments by Joe

Showing 99 of 99 comments.

  • My only experience with peer support is at the peer operated Wellness Centers (nee’ Self-Help Centers, nee’ Drop-in Centers) which my state claims are the loci of Wellness & Recovery. Sadly, the paid peer supporters too often treat us no differently then how we’ve been treated in day programs, hospitals, PHPs, and CMHCs. Peer supporters frequently emulate the models they have experienced as patients despite representations of considerable training. I had expected and hoped for better.

  • Perhaps malevolent. Should any NFP be cooperating in growing the market?

    Excerpted from the page of NAMI’s 2000 990 entitled, “Guidelines for the Relationship between NAMI and the Campaign’s Founding Sponsors” which included:

    II. Providers, health plans, and pharmaceutical companies want to grow their markets and to increase their share of the market.

    A. NAMI will cooperate with these entities to “grow the market” by making persons aware of the issues involving severe brain disorders, by giving professionals and providers the NAMI perspective, by bringing into treatment persons who are not being served, and by helping persons to adhere to their treatment plans.

    (Quotation marks were not added. They appeared in the original text.)

  • The point made about reaching out in times of crisis is well taken. I live in a stigma free county where the majority of towns declared themselves to be stigma free. We have a stigma free tree in a local park and a large catered stigma-free breakfast annually which few consumers attend. Two years ago, we had two groups of high school students who danced at a local mall in stigma free t-shirts. Despite all this putative progress, reaching out in a crisis can be both disheartening and painful when so many are already vulnerable and bereft of hope. Our county hospital, also stigma free, can have 25 psychiatric patients boarding at any given time. Our county’s MH System Review Committee doesn’t track ER boarding of less then 5 days. On the psychiatric units there are typically about 40 patients who can’t be discharged for want of supports and services in the community.

    My peers and I long into the system know what it is like to reach out. Too often where virtually all treatment is predicated on the Principles of Recovery & the Domains of Wellness actual treatment is typically limited to a medication adjustment, some extra therapy and/or a disheartening inpatient stay consisting of meds, beds and few desultory groups. (It is no surprise that we have a population which circles in and out of the county hospital.) The consequence of this system of “care” is that too many simply stop reaching out and take their lives through active or passive suicide.

    We can only hope that one day those who encourage reaching out actually try reaching out to the very system they tell others to reach out to. They should similarly consider the outcomes this system fosters. I recently asked the director of my state’s suicide prevention program what specific efforts were being made to focus on those most likely to commit suicide, ex. individuals recently hospitalized, those with a long history of a SMI. I was told no special effort was being made. Someone at the meeting did chime in that there were groups for consumers who had survived a suicide. I did follow this up given how many support groups for friends and families of those who had commuted suicide exist. There was exactly one group for survivors of suicide in a state of 9 million.

    Despite years of hopeful language, the suicide rate continues to grow despite initiatives including the National Strategy for Suicide Prevention, the population of persons on disability by virtue of a MI is exploding, the percentage of American’s with a SMI increases, and long standing morbidity and mortality (YPPL) issues impacting mental health consumers remain largely unaddressed how can MH organizations in good conscience be so sanguine about treatment and outcomes. Does their perceived organizational duty to get folks into the MH system trump the sad reality that too many fail to recover or live long enough for any chance at recovery?

    (Danny K, Kudos to you on putting principles first!)

  • I would be interested in what studies establish that “Peer-run organizations have been, and continue to be, leaders in providing cutting-edge, recovery-oriented mental health services and support ….” given that virtually every mental health clinic and provider organization has long asserted the same. (I did follow the links you provided.)

    Sadly, our local Wellness Centers (nee’ Self Help Centers, nee’ Drop In Centers) are peer run largely in name only and despite almost a decade of data collection they can’t provide any evidence that they apply the Principles of Recovery or foster recovery.

  • Based on the articles below do we have reason to be concerned about psychological ethics in addition to the psychiatric ethics? (This is just a sample of articles I found by psychologists.)

    From the Guardian – A psychological trap: making sense of Donald Trump’s life and personality
    From Shrink Tank – A Psychological Analysis of Donald Trump.
    From the Daily News – This is the fuel that drives the Donald Trump train, as explained by a forensic psychologist.
    From The Atlantic – The Mind of Donald Trump

    Are we to believe that only psychiatrists but no other mental health professionals including psychologists are never guilty of the many of the “… major ethical transgressions that have constituted an integral part of psychiatric practice for decades” or would this be wishful thinking? In addition, when it comes to psychopharmacology as an ethical violation consider this, “APA [American Psychological Association] Applauds Landmark Illinois Law Allowing Psychologists to Prescribe Medications.”

  • Where so many of us have received the “Prophecy of Doom” is it not surprising that it is asserted by a doomed mental health system. When will the “Prophecy of Doom” be applied to a mental health system which has long represented so much (Wellness, Recovery, True Community Integration, Person Centered Treatment, Evidence Based Practices, Improved Quality of Life, Overwhelmingly Favorable Outcomes, Trauma Informed Care, Integrated and Holistic Care, etc.) receive the “Prophecy of Doom?”

  • Since the author practices in Australia, it would be interesting to learn what effective alternatives would be readily available to Australians if antidepressant use were to be reduced by half. Since 2000 Australia’s rate of anti-depressant use has doubled and it is now the second highest in the OECD. Would Australians be able to access high quality non-medication treatment from a therapist well versed and successful in the treatment of depression?

  • I trust there are many here who know the solution to providing successful depression treatment sans the use of antidepressants. No doubt they wish to share this with those of us who have long suffered from depression and find that antidepressants with adjunctive medications offer little relief. Please let us know which modalities will be systemically delivered given the existing funding structure sans antidepressents. To do less is the stuff of symposia, conferences, colloquia, forums, task forces and the like which have led many to believe that my peers and I fail to achieve favorable outcomes in a system which has long afforded us us every resource and opportunity to achieve the best of outcomes.

  • While there is merit in remaining hopeful that long overdue systemic change will occur there is also merit in remaining realistic. We have gone through numerous putatively transformative eras only to find that little changed. I’m reminded that it has been twenty three years since “Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s” was published. The biggest subsequent change was that providers and programs which once asserted evidence based treatment and the application of best practices now claimed that all treatment was predicated on Recovery. Subsequently all treatment was predicated on Recovery and Wellness.

    When will our mental health system be able to evidence no small portion of the endless change it claims? A system unaccountable to those it serves rarely serves them well nor does it allow for the systemic change it represents.

  • Not surprising from “Panel Calls for Depression Screenings During and After Pregnancy” which appeared in the January 26, 2016 NY Times, “The only state that requires screening, New Jersey, has had mixed results because too few treatment options have been available.” [I emphasize “…. mixed results because too few treatment options have been available.”]

    I continue to wonder what outcomes persons screened positive for depression experience given the nature, timing, extent and quality of available treatment. In 2004 I contacted TeenScreen. My inquiry included a request for information about treatment outcomes for those screened positive for depression. Their reply included, “We do not at this time have any data to show what happens to these youth once they are engaged in treatment.”

    In general, do post screening outcomes for individuals who engage in treatment reflect those found in Minnesota’s “2014 Health Care Quality Report” on page 158 or Ed Pigott’s analysis of STAR*D? If so, do many of the individuals screened positive for depression experience little more then a label when the pain of depression can be so great?

  • Long into the era of screening students for depression I wonder if any studies have been done to support the effectiveness of screening. Specifically, what is the nature, timing, and extent of the treatment adolescents screened positive receive and what are the short and long term outcomes.

    After all, in a system where the usual treatment for depression is typically marginal at best and outcomes can be quite poor does screening result in little more then the burden a label can ensure?

  • The pity is that for so many of us medication is largely treatment in its entirety. Get lucky and perhaps you can see a therapist. Get really lucky and you get to see a therapist who is actually skilled in treating your particular issue.

    Exactly where is the list of therapists who will provide quality services and can establish a history of fostering favorable outcomes? After all, where it is asserted that “… psychiatry is something fundamentally flawed and rotten” shouldn’t persons be able to readily access psychological alternatives to medications or are the alternatives to medication available for the lucky few?

  • Where are my peers and I long into the mental health system to see the change that has long been promised? We have lived through successive eras where change was to have occurred but little changed. There was the Era of Psychosocial Rehabilitation, then Evidence Based Practices, Best Practices, Recovery and now Wellness & Recovery. Each era was supported by no end of scholarly and popular articles, campaigns, conferences, trainings and the like but what changed was largely our medications and what we were called, i.e. patient, then recipient, client, and consumer.

    The campaigners are right in that we have a “… broken, inadequate, outmoded mental health system” despite the “… progress made over the past 20 years.” The words have long been there for real mental health change but the deeds rarely were. A mental health system which represents change so often but fails to evidence it creates fertile ground for misguided legislation like the Murphy Bill.

  • Can you point to resources which would direct individuals suffering from depression to highly skilled professionals who will provide non-medication based treatment without regard to an individual’s resources? Specificity, would be important.

    For most in my county of one million getting anti-depressants and anti-psychotics adjunctively is relatively easy in the public mental health system. Getting treatment from a professional skilled in the treatment of depression without medication can be challenging and is too often impossible. (Even is one if able to see any therapist medication is considered to be a essential to the treatment of depression.)

    If individuals suffering from depression are to avoid the “psychiatric monster” they must be able to access existing alternatives.

  • NAMI and MHA have not cornered the market on anosognosia. In fact, the mental health system is so replete with well believed misrepresentations that one has to wonder if anosognosia is institutional. Let’s see … all mental health programs without exception are predicated on the Principles of Recovery and the Domains of Wellness, alternatives to medication are readily available, services and supports are offered on demand if one just reaches out, peer programs are always better and more sensitive to the needs of consumers, outcomes are predominantly favorable, mental illnesses are significantly more treatable then many other illnesses, mental illnesses are just like diabetes, every mental illness initiative is successful, each new medication is safer and more effective, training, conferences, webinars, seminars, colloquia, forums and the like are evidence of systemic transformation. It goes on an on. To the extent that those who make the representations believe them certainly evidences the lack of insight that is anosognosia.

    The pity is that so many believe what is glibly represented. The message is hopeful where the reality can be so very grim. My peers and I long into the mental health system are left to suffer the added burden of failing to recover when so much is putatively available to us. We know better and have the insight to appreciate that salesman’s puffery is rarely reality. It still hurts.

  • I wonder how a system which largely ignores trauma and too often traumatizes those who look to it for help can ever be responsive to ACEs. Can any amount of training for existing staff and practitioners result in change that is long overdue?

    The National Council is having a webinar on August 31, “‘Trauma-Informed Care Systems Implementation.” Is a webinar alone sufficient for any organization achieve a transformational paradigm shift? Is it even enough to provide the impetus for change? From the National Council’s announcement, “Participants will learn the principles of a trauma-informed care approach and the critical elements involved in implementing and leading this type of transformational change within an organization.”

  • “Psychotherapy is the real item. We must get back to it.” Of course, it is only the real item if one can access a therapist who has the skills, abilities, motivation and commitment to make a difference otherwise it is little better and no less damaging in its own way then medication, ECT and the like. Where medication and ECT were (are) promoted as alternatives superior to therapy how can we now insure that persons who seek out therapy find it to be an effective alternative to medication and ECT?

    Finding a therapist who can make a difference should not be the consequence of the fortuitous intersection of finances, location, modality, practitioner skills and abilities, patient needs and wants, the existence of a therapeutic relationship, etc. For so many this intersection never occurs and the alternative to medication is no alternative at all.

  • CBT can be part of the solution were it not so challenging to find a therapist who actually practices CBT. I went through this as did another family member and of all the therapists who claimed to utilize CBT not a one actually utilized this approach. Treatment was rarely more then that which the therapist found to be most comfortable, convenient and least taxing for him or her.

    Where we are often told that medication is not effective or is unsafe it should also be remembered that non-medication alternatives skillfully delivered are too rarely available.

  • 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.

  • I’m glad you were able to find the supports you needed in the community. I have not been so fortunate despite having tried both self-help groups and psychotherapy over many years.

    The choices I referred to are all outside psychiatry. I should have made this clearer.

  • One can only wonder what wholesale transformation must occur to allow all those who currently look to medications as treatment have other choices. I wonder. Where will skilled mental health providers of all stripes come from? How can we ensure that these providers are the ones who can help make a difference in the lives of those they assist? How will we make certain that all will have access to the help they need when they need it? When will a broad system of services and supports necessary to foster recovery & wellness exist?

    I’ve long known that the numerous medications I’ve taken for depression don’t work. (Not surprising to anyone who follows MIA.) Consequently, it has been recommended to that I consider ECT as other therapeutic modalities of any significance are not available to me. For many of us a system which allows for actual choices other then the “choice of medication” or ECT in the case of depression will come too late. The pity for all is that a system that broadly affords a “focus on what caused the patient’s problems and how to cope with them in the future” is some time away. What will happen till then when so many need this focus now?

  • “This promise [of psychiatric drugs] has become so deeply imbedded in our present day human experience that nothing will stop this demand within the present order of things.” Excellent point in an excellent article. In fact, the existing trend suggests that things may get considerably worse before, and if, they get any better. A 2010 article in the The American Journal of Psychiatry, “National Trends in Outpatient Psychotherapy” included the following based on the 2007 Medical Expenditure Panel Surveys: Between 1998 and 2007 the use of only psychotropic medication as treatment increased from 44.1% and to 57.4%. During the same time the use of psychotherapy alone decreased from 15.9% to 10.5% and the number of annual psychotherapy visits declined from 9.7 to 7.9.

    Where treatment is anything and everything and outcomes are largely irrelevant the economics of the current mental health system requires that treatment be primarily medication based. Sadly, so little has changed long into the Era of Recovery when so had been promised. As a consumer is reported to have said, “I was a patient, a recipient, a client, and then a consumer but the only thing that changed was my medication.”

  • Locally, one needs only look at the contracted services budget for our community mental health centers and it is not surprising that medication trumps any other modality. The popular message is reach out and receive treatment; however, the impact of limited resources on the nature, timing and extent of the treatment provided in the face of ever expanding service demand is ignored. Consequently, the emphasis is strictly on access and process (the McDonald’s numbers: “How many did you serve?”). The priority is serving the most individuals at the lowest possible cost so the dominate modality is medication management at the cost of a quarterly fifteen minute visit. The actual cost of medication is irrelevant as it typically covered by Medicaid, Medicare Part D, or private insurance.

    Until outcomes and as well as all costs associated with failing to provide people with the help they need and want when they require it are considered significant nothing will change. The growth in the number of individuals on disability by mental illnesses strongly suggests that the current medication paradigm simply isn’t working long into the Era of Wellness & Recovery.

    Oh, not too long ago I attended a presentation at our largest community mental health center which serves 20,000 annually. One slide said so much, “Medication is the Foundation for Recovery.”

  • I needn’t remind anyone that depression hurts. That the long term effects of nitrous oxide [and ketamine] are unknown doesn’t mean that informed individuals should not be given access. After all, many of us have taken and continue to take SSRIs for depression under long standing representation that each new anti-depressant was more effective. (For readers of MIA, it is no secret that this claim has not survived critical scrutiny where treatment predicated on these medications was supposed to be “evidence based” and representing “best practices.”) Like I said, depression hurts, and given this I trust many individuals will do anything if only to make the pain subside briefly where for so many one, two or three anti-depressants and an antipsychotic adjunctively continues to be treatment in its entirety.

  • While it is hard to argue against the utility of recovery stories I often feel stories by those who have yet to achieve recovery are given short shrift. There is something to learn from all consumers. Of the 850 people added daily to the Social Security Disability rolls due to mental health reasons when and in what forum will they be afforded the opportunity to tell their stories? Shouldn’t there be a place for first person narratives consistent with the need for the system to be “gutted and rebuilt”?

  • A compelling argument with which I wholeheartedly agree but (and this is no small matter) I suffer from depression; it hurts. I had previously looked into ketamine infusions. If not for the cost I would have signed up in a New York minute. Does it matter if it works or doesn’t? Not really. After all, for many years I took multiple anti-depressants despite the knowledge that they were little better then placebos. Antidepressants were and are the treatment I can access.

    This was covered was reported in MIA’s In the News section, “Strong Placebo Response to Antidepressants Forms Even Before Drug Trials Start.” I’m willing to settle for similar with ketamine. I’ve simply been through so many antidepressants that I long ago ceased experiencing the placebo response which was better then no response at all. Still I am willing to put some belief in the hope that ketamine might lessen the pain. It doesn’t matter if the impact is organic or placebo I’ll accept either.

    Several months ago I weaned myself off multiple antidepressants and things did not get better or worse. I had expected the same. This, of course, meant that I no longer was accessing the treatment afforded me i.e. medication management. Yesterday, I decided to go back on antidepressants and was swabbed for the Genesight test. I want to believe that this approach will produce favorable results where all my trials of antidepressants frequently at dosages well above those approved by the FDA did nothing. If the choice was there I would have preferred the ketamine rather then diving back into the sea of antidepressants.

  • We can only hope that practitioners will internalize and act on the information presented. Sadly, taking a course, attending colloquium or a conference are often used to buttress the assertion that what is being practiced is consistent with the information presented. I wish I had a dollar for every time a provider agency asserted that training alone is evidence that significant even transformational change has occurred in practice.

    Locally, our state hospital went through over a decade where several full time university faculty members conducted countless trainings to improve staff skills. The conclusion of the university’s department chair included, “The more things change the more they stay the same” and “Things that are being offered to the patients who live there have not changed.” The state agency which runs the facility continues to assert staff training is evidence of wholesale change at this institution.

    I hope that the Mad in America Continuing Education Project makes a difference where so many other efforts effected only the veneer of change.

  • I wish I could see how another conference no matter how noble its intent or committed its participants will make a significant difference to those of us who look to the public mental health system. We’ve long experienced the language of change and the promise of change. We have yet to experience the substantive actions which yield change.

  • Too often in the press the assertion is made that a suicide is the consequence of simply not seeking treatment because of stigma or one’s discontinuing his or her medication, “If only he or she had reached out….,” “If only he or she had not ceased taking his or her medication.” I doubt any reporter will ask, “If treatment with antidepressants is so effective how could Robin Williams have taken his life?”

  • I’m reminded that last week Medicare announced that it would pay for Assurex’s Genesight test for people with depression. Assurex claims that it measures and analyzes important genomic variants affecting the metabolism and response to behavioral health medications in individual patients.

    While my peers and I suffering from depression might never expect to receive the oft cited non-medication therapies which promote recovery at our community mental health centers we can easily get antidepressants, antipsychotics adjunctively and now genetic tests at little or no cost. So lets see CBT, nah. DBT, simply not available. Mindfulness, what? Genesight’s test, easy despite it costing between $2000 and $2500. I’ve been told by the community mental health center that all I need do is make an appointment.

  • In a system which speaks endlessly about fostering recovery pre-mature mortality and morbidity runs counter to the message that “Treatment is Effective and People Recover.” The face of mental illness can’t be a peer who is dead or ill if the overarching goal is to get folks to reach out to a system which often evidences its most pernicious weaknesses when an individual is in crisis.

    The grim truth is that many who have taken their lives are well aware of what it means to reach out and don’t reach out again based on earlier experiences.

  • Yes, Oy. Then consider how in community replication this approach would work. I doubt even the nominal improvement over the control group would hold true. After all, fidelity to any practice model has never been the hallmark of the mental health system.

    For those of us who spent anytime in the children’s system it is not hard to imagine the intervention group faring worse then the control group in practice.

  • Oops, I meant to write “Hi Seth” yet typed “Hi Jeff.”

    CEPP is covered here,, and the 2009 settlement is to be found here, In FY 2014 NJ was to have placed 95% of individuals within four months of being placed on CEPP status. I wouldn’t know if Gloria is on CEPP status.

    I wish I knew the duration a group home is required to hold a bed. Curious … what did NJ mental health advocacy organizations and individuals who hold themselves out as advocates have to to say or offer to do with respect to Gloria’s plight?

  • Hi Jeff,

    I just wanted to point out the the assault issue at Trenton precedes 2010. Didn’t see mention of Cotton.

    Sadly, Gloria X like so many at NJ’s state psychiatric hospitals may come to face a persistent problem which was have been addressed by NJ’s 2009 Olmstead settlement, i.e. timely placement of individuals on Conditional Extension Pending Placement status. It appears that NJ has long failed to meet the 4 month placement metric once an individual is placed on CEPP status. There was plenty of press coverage on the settlement …. no coverage on the state’s failure to realize that which was promised.

    Gloria X deserved so much better. Afterall, NJ promised as much system wide in February 2006, “To this end, it is the Division’s [DMHS] policy to ensured that consumers and families receive a system of recovery-oriented services and resources that promote wellness, an improved quality of life and true community inclusion.” Since her placement at Trenton she has experienced only the antithesis of this at an institution directly operated by the very agency which made the representation.


  • I’m not surprised you found it challenging to find a reporter who is willing to go outside the mental health comfort zone which largely is limited to anti-stigma activities, celebrations, walks, new initiatives, positive first and second person narratives, favorable and cursory reporting on prevention and treatment which eschews consideration of the nature, timing, extent or the effectiveness of the treatments or the services available. Afterall, New Jersey claims itself to be in the forefront of Wellness, Recovery, Community Integration, etc.

    I hope you find some consolation in knowing that your success in getting a reporter to cover Gloria X should be considered a triumph. I believe only two reporters regularly cover significant issues in New Jersey’s mental health system, Sue Livio of the Star-Ledger and Maiken Scott of WHYY. Trenton has largely had a free ride since a copy editor titled an article about a fire at Trenton Psychiatric Hospital “Roasted Nuts.” There was much coverage about the article’s title but nothing about the long standing problems at Trenton. (It is telling that any mention of Trenton is usually in connection with its founding by Dorothea Dix. Never is the “work” of Dr. Henry Cotton cited.) Trenton has long been known as New Jersey’s most violent IMD when it comes to patient on patient assaults with major injury, i.e. an injury which requires hospitalization.

  • I seriously doubt a revolution is on its way. After all, we just went through an era where many providers and state mental health agencies asserted no less then wholesale transformation. Earlier eras promised best practices, evidence best practices and treatment predicated on the principles of recovery and wellness without evidencing material change.

    When someone can provide empirical evidence that the revolution is here I’ll believe it. Until then I can only believe “what is” rather then “what is hoped for.”

  • Last year my county with a population of 900,000 actively sought recovery stories. Troubling is that not a single recovery story was collected where provider agencies, hospitals, advisory councils and advocacy organizations claim all treatment is predicated on the principles of recovery. The collaborative effort subsequently settled for what they could collect, i.e. stories of what recovery might look like. Tragically, at the same time our recovery speaker committed suicide.

    Those who seek to collect recovery stories would be well served by considering the impact on those who fail to recover where our mental health system now claims foster recovery as its dominant paradigm and outcome. Perhaps, more can be learned from stories of individuals who fail to recover in a mental health system where the number of individuals on disability continues to grow apace.

  • Excellent coverage. Rob, what do those who promote screening say about outcomes for those “screened” positive for mental illnesses? In 2004, I requested information from TeenScreen on outcomes for those “identified” as having a mental illness and who subsequently received treatment. In return TeenScreen send me considerable literature but absolutely nothing on outcomes.

    Sadly, the following would not surprise those of us who spent any time in the adolescent mental health system: “Adolescent Psychiatric Hospitalization and Mortality, Distress Levels, and Educational Attainment: Follow-up After 11 and 20 Years,” (Short URL)

  • I can’t imagine a world without antidepressants. After all, the question when it comes to depression is typically, “Are you receiving treatment?” rather then “Are you receiving effective treatment?” That antidepressants have so little effect no longer seems to matter for taking an antidepressant answers the first question without addressing the second. Where process (you are receiving treatment) remains the essential metric rather the performance (outcomes reflecting effective treatment) in a mental health system beset by limited resources it’s just cheaper and easier for antidepressants to constitute treatment.

    The pity for those of us who suffer from depression is that all too often we now take not one antidepressant but two. Some of us also take one or more medications adjunctively, ex Lamictal, Neurontin, Abilify. The solution for the lack of effectiveness of one medication, the first anti-depressant, is ironically more medications of dubious value. Go figure.

  • Ted, All excellent points and more is this pity. I feel there is less evidence of a real movement than at an earlier time. While the language is there the reality is no less grim. If I was forced to look for the evidence of a movement in my metro area it would be limited to what is represented by provider agencies and putatively peer run organizations. When I’ve asked friends in the system about the movement I either get a quizzical expression or “Do you mean NAMI?”

    The problem with the movement is that for most of us it is about us without us. Ironically the very refrain we’ve heard so often about the mental health system itself.

  • As the years go by I find it harder to believe that the system will be “fixed” anytime in the foreseeable future. We have been through various points where there was to have been no less then systemic improvement of our nation’s mental health system. For example, in 2003 the President’s New Freedom Commission on Mental Health shared the united opinion that our mental health system was in “shambles.” What followed were countless activities on the federal and state level which were to have led to a system of care predicated on fostering the domains of wellness and evidencing the principles of recovery. Conferences, colloquia, trainings, webinars, presentations, PSA’s, changes in language, pronouncements, new organizations, tag lines, task forces, workgroups that once again failed to lead to meaningful systemic change.

    Consider the Mental Health Transformation State Incentive Grants which totaled more then $100 million between 2005 to 2010. The grantee states failed to achieve the very transformation that the grants were to have facilitated. There were plenty of activities as evidenced by the “Transformation Tracker” but too few actually made a difference. (In fact, the “Transformation Tracker” was taken down shortly after the grants were completed.) The grantee states even failed the proof of concept when it came to creating more recovery enhancing environments.

    Then there was was the 10 by 10 Campaign which was supposed to reduce the premature mortality of mental health consumers by ten years in ten years. It is now almost seven years past the campaigns original announcement. There have been some integrated health grants but well into its ten year “effort” there is no evidence that consumer years of potential life lost have decreased. It is telling that the original campaign and the original promise broaden in response to coverage by NPR’s Maiken Scott and the effort became 10 by 10 Wellness Campaign. Then it simply disappeared under the rubric of SAMHSA’s Wellness efforts. (The original 10 by 10 Report from 2007:

    If the past is prologue I fear there may only be localized bright spots and the systemic change necessary for a fixed system will continue to be an aspirational goal. In ten years will there be empirical evidence that our mental health system has changed for the better that Robert Whitaker could quantify? I wonder ….

  • The public and the press have glommed on to other claims without question, ex. medications are always safe and effective, new medications are always safer and more effective, the difference between being symptomatic and not is a function of medication compliance, the dominate outcome for treated mental illness is recovery. Those who find utility in promoting the 49.5% statistic will no doubt use it to their advantage.

  • The sad irony is that those of us suffering from depression and the public at large have been told ad nauseum that the recovery rate for treated depression is 80%. The presumption is that those who fail to recover are simply not taking prescribed medications. The fact that many of us take antidepressants knowing they are little or no better then placebos says much about the nature, timing, and extent of the treatments available to us.

    I’d trade my antidepressants for the therapies that are so often the subject of conferences, webinars, seminars and the like (ex. CBT, DBT) but neither is on the menu. The transformation of our mental health system which would allow the widespread use modalities other then medications may be an aspirational goal that has not and may never be achieved …. but this could be the depression talking.

  • Any prohibition on discussing and/or reporting on suicides insures that the public is denied all the facts when it comes to suicide. What is all too common becomes nothing more then an outlier in a mental health system which putatively affords every opportunity and resource to achieve wellness and recovery.

    “Attrition” by suicide or premature mortality has rarely been more then a source of lamentation in our mental health system. It should be a call to a meaningful, measurable action.

  • Until there is performance accountability I see little chance for change. It is long past due that MH providers of all stripes cease representing broadly that which they can evidence narrowly, anecdotally or not at all.

    The story of Susie or Billie or a recovery speaker is hardly evidence that Wellness or Recovery are a provider’s predominate clinical, functional, and personal outcomes nor is it evidence of systemic change or that treatment is appropriate or evidence based.

    As the saying goes, “If it can’t be measured it isn’t going to happen.”

  • Jonathan an excellent piece! Where hospitalization is usually associated with an intensity of care and specialization not available in the community inpatient psychiatric hospitalization is associated with little more then beds, meds, and a desultory milieu. If anyone ever questions why consumers fail to reach out when in crisis they should consider what it is like on an inpatient psychiatric unit when one hurts. Not unexpectedly many consumers don’t reach out again and afforded no other options are no longer with us.

  • The continuing tragedy is how little is done for those who reach out when suicide is being considered. Locally, this often means police outreach, hours to days sitting in the ER, and some time in the cold comfort of a locked psychiatric unit. (My county’s mental health system review committee doesn’t even track ER boarding of less then five days.)

    I fear co-morbidities and premature mortality among mental health consumers is of little concern to society at large and “attrition” has never been cause for action in the mental health system. It is telling that The Surgeon General’s Call to Action to Prevent Suicide (1999) and the National Strategy to Prevent Suicide (2000) were followed a decade later by a higher suicide rate. Words alone are never enough but they are often all that is provided.

  • Hi Ron,

    While the studies on NEC’s website have long been cited to support the reality that recovery is possible they don’t establish that many are receiving supports and services in an environment which fosters recovery. The broader evidence as related in MIA is that more and more of us are ending up on disability.

    The Mental Health Transformation- State Incentive Grants was a 5-year Federal grant program designed to help States transform their mental health programs into ones that are more effective and that better promote recovery and resiliency. The August 2011 evaluation report is telling,

    Were the grants able to create more recovery-enhancing environments? POC [Proof of Concept] studies were designed to focus on areas in which grantees thought they could effect changes. Limitations of this study were that the intervention fidelity and “dose” were not measured and therefore not statistically controlled. The results from these studies indicated the answer to this question is no. (Executive Summary, page 5, para. 2.)


  • Any discussion of recovery should include consideration of whether recovery based systems exist. I think not. It’s over 20 years since Anthony’s article (“Recovery from mental illness. The guiding vision of the mental health service system in the 1990s”) and it appears that recovery is evidenced largely as the stuff of conferences, colloquia, webinars, work groups, seminars, trainings, task forces, and publications. The term has been rendered a meaningless adjective to be added to the name of any initiative or program.

    We’ve been here before. Who can forget that when psychosocial rehabilitation was in vogue everything was predicated on psychosocial rehabilitation. The same was true for the eras of best practices and evidence based practices. Why should it be any different for the Era of Recovery and increasingly the Era of Wellness and Recovery? (see Abuse #1)

    At best recovery based systems are an aspirational goal. At worst it is merely puffery. Sadly, that which is represented broadly is evidenced narrowly, anecdotally or not at all and creates the impression that individuals who fail to recover have failed a system which putatively affords us every opportunity and resource to recover. Afterall, everything is predicated on supporting recovery ….. or not.

  • “My son attended a two year hospital run day program and I vividly remember how the professionals on staff dealt with the subject of hallucinations: To avoid having the patients talk about them. Needless to say, that program is still thriving because not many are getting well. I guess that’s the point of the program (she cynically remarked).”

    Been there, done that albeit for no longer then 90 days and never having suffered hallucinations. It is best to think of these programs sans evidence to the contrary as valuing compliant, complacent, chronic mental patients for they yield the greatest revenue with the least problems.

    Paradoxically at one day program putatively predicated on Recovery & Wellness we were all required to attend a presentation on Recovery which included this slide, “Medication is the Foundation of Recovery.” It is hard to imagine a program like this dealing in any other way with with fears, hallucinations or any of life’s challenges or seek to foster personal goals and aspirations. To do so would impart skills which accrue to the individual rather then benefit the program.

  • In reading Dr. Dawson’s response I am reminded of the words of Albert Einstein, “Few people are capable of expressing with equanimity opinions which differ from the prejudices of their social environment.” Psychiatrists can be inordinately passionate about their institutional beliefs. Just ask anyone who has had the temerity to question a psychiatrist.

  • The paradox of AOT is that individuals who actively seek treatment can rarely access that treatment which makes a difference. An ever growing population of individuals on disability by virtue of mental illnesses evidences this stark reality. AOT is only treatment when treatment is both everything and nothing and individual rights, goals, needs, and dignity mean little.

    I fear an “enhanced mental health program” in deed is wishful thinking. (We all remember the optimism subsequent to the passage of Proposition 63 in 2004.) Where there seems nary a program that doesn’t represent a comprehensive array of services and supports under the rubric of Wellness & Recovery the words and deeds fail to intersect. Instead we often see a system that evidences the united opinion of the President Bush’s New Freedom Commission on Mental Health “in shambles.”

  • “From my perspective it is pretend representation.” While I’ve never been placed in a situation where I needed representation I fear I’ve heard the same from those who have actually needed it. The sad consistency when it comes to mental health is pretend, i.e. legal representation, pretend inpatient rights and to the extent that too few of us can access the comprehensive, evidence based care advertised we are left too often with pretend treatment. Hardly the way to address issues which are all too real.

    Thank you for all you do.

  • Ted, I agree that in the short term psychotropics can be useful. I appreciate that you mention that few can actually access psychosocial interventions. This results in medication being not just a tool but the only tool.

    The irony is that so many agencies routinely represent recovery based care, care predicated on the domains of wellness, evidence based practices, and best practices, under the general heading of consumer choice, respect and empowerment. Unless all of the aforementioned can be measured in milligrams of medications we are left with no more then the Potemkin Village words and meds can create.


  • Excellent including the questions you posed. I fear we are far away from the time when new psychotropics are not automatically greeted with the notion that they are safer and/or more effective when they bring little or nothing to the table except added expense.

    Curious. Where did the notion that a trial of but six weeks was of sufficient duration? After all, we are often told that we will have to take one or more psychotropics for a lifetime?


  • I wonder if granted a writ and achieving a favorable ruling would consumers subsequently be able to access timely, competent, and vigorous legal representation at the local level? Sadly, having a right and exercising it are often quite different in the mental health system.

    As you note, “… they can use the public defender and almost certainly be committed …”

  • I’m reminded that virtually every program or practitioner asserts that all treatment is evidence based. Absent consideration of the Dutch First Episode study is it now more appropriate to assert that all treatment is based on the evidence we prefer?

    For too many psychiatrists patients have simply become maws for meds. Unfortunately, for too many patients meds alone will continue to be treatment in its entirety where so many needs and challenges can’t simply be addressed by medications alone.

  • I wonder how many individuals have the ability to access CBT.

    My county’s public mental health system serves over 40,000 annually and the menu is limited to meds, beds (the hospital), crisis intervention, limited individual therapy, the day programs, and the sheltered workshop. Specific treatment modalities are rarely mentioned, off the menu alternatives are never mentioned and getting any treatment at all is challenging.

  • I doubt the many individuals who could benefit will be able to access cognitive therapy from a practitioner skilled in this approach. I and others have found that practitioners who represent their adherence to this approach often fail to do so.

    Sadly, in a system where everything is considered evidence based, person centered, best practices treatment what one gets is usually quite different from what is needed or represented.

  • How sad to find that Justina has been placed at the Wayside Youth and Family Support Network. Residential treatment outcomes are disappointing and it is common for children in out of home placement to never recover from the trauma of being placed outside of the home.

    Of course, those who provided Justina’s “treatment” at BCH and now at Wayside Youth and Family Support Network need not concern themselves with outcomes and how children fare in adulthood.

  • To the extent that the Housing First model has not universally replaced the continuum of care or staircase models I have little doubt that treatment engagement either mandated or prescribed continues to be a barrier to housing for many.

    The use of leverage is a hallmark of our mental health system despite all “consumers” being putatively empowered. I can’t count the number of times I have heard the following said to a “consumer”: “If you don’t (fill in) we will (fill in something punative).”

  • An inpatient psychiatric unit is the last place one could possibly expect a medical diagnosis. After all, any illness is assumed to be no more then symptomatic of an underlying mental illness. As Albert Maslow said, “If the only tool you have is a hammer, you tend to see every problem as a nail.”

    I can only imagine what the future holds for Justina. Those who were hospitalized and/or placed in residential treatment as adolescents often carry the trauma of the experience into adulthood and the burden of the Prophecy of Doom, “You have been too sick for too long to get any better.”

    Adolescents who have been hospitalized tend to have futures which are a far cry from their peers. Ironic given that we are told the when a mental illness is identified and treated early in life the outcomes are overwhelmingly favorable. Sadly, this study found found otherwise. Adolescent Psychiatric Hospitalization and Mortality, Distress Levels, and Educational Attainment Follow-up After 11 and 20 Years,

  • It continues to disappoint that so much emphasis is placed on assisted outpatient treatment (a/k/a involuntary outpatient treatment) when individuals who actively seek treatment so often fail to receive that care which makes a difference. For too long the assumption has been that the mental health system works and that the vast majority of those receiving treatment receive the services they need and achieve favorable clinical and functional outcomes. This is magical thinking when it lacks empirical support.

    I fear the mental health system will never cease to confuse process (treatment) with performance (outcomes). Units of service or the number of individuals served might be fine for fast food restaurants but not for a mental health system which represents services and outcomes reflecting wellness and recovery. The burgeoning population of individuals on disability by virtue of mental illnesses is telling.

  • Where the phrase “evidence based” is so frequently used in connection psychotropics it is long past due that all trial data be released. After all, how can one claim that a medication based treatment is evidence based when essential data is withheld and not subject to the broadest possible scrutiny?

  • Rarely does a change in terminology foster systemic change or lessen stigma.

    I was a patient then a recipient then a client then a consumer putatively then a person in recovery. I lived through the eras of psychosocial rehabilitation, evidence based practices, best practices, recovery and now Wellness & Recovery. The only thing that changed was my medication which was always “safer and more effective.”

  • Excellent highly informative post. Ironically, Vice President Joe Biden’s speech before yesterday’s forum marking the 50th anniversary of the signing of the Community Mental Health Act included the following according to the AP:

    He said science is on the verge of “astounding discoveries” that could change how society cares for those with mental illness. “It’s truly amazing what we don’t know and it’s truly amazing what we might learn,” Biden said during a kickoff of the two-day forum at the Kennedy presidential library. “Imagine when we are able to identify the biomarkers for mental illness.” (Source: Joe Biden Anticipates ‘Remarkable Changes’ For Treatment Of Mental Illness,

  • In fact, the program I cited won an award.

    I just wish that programs of all stripes wouldn’t broadly represent outcomes that are evidenced narrowly. The community at large is left with impression that consumers afforded every opportunity and resource for success generally fail. (This is similar to when we failed our medications which were always safer and more effective.)

  • Too rarely are the outcomes fostered by mental health programs given the slightest consideration. Wayne should be congratulated for considering the outcomes for this program, possible causes, and remedies. And it made me think back ….

    In 2006 I attended a presentation given by two representatives of an employment program for consumers. I asked about outcomes. I was presented with the usual annecdotes, “Let us tell you about Billy ……” but pressed on as I sought information on outcomes as a whole.

    After several months this program which had received almost $3 million to date provided the following:

    # of consumers who received direct services: 871
    # of consumers who got jobs (includes full-time, part-time, volunteer): 307
    # of consumers who stopped receiving SSD/I because of employment: 14
    # of consumers who were still working at 3 month follow-up: 242

    It was never made clear how many individuals were actually working full or part time at competitive wages. That fourteen individuals had likely met the SGA standard ($860 monthly in 2006) at some point was cold comfort where 871 consumers had invested themselves in this program.

  • Unfortunately, all the words create the impression that not only does the system believe in recovery but it is the dominate outcome. There are plenty of conferences, colloquia, seminars, webinars, trainings, and forums about recovery, a demand for professional speakers to speak about their personal recovery, recovery story collection efforts, and the use of the term “recovery” in the description of programs, report titles, taglines, and initiatives.

    When it comes to Recovery the system has achieved all that words alone can foster.

  • “Instead, the entire system is fraught with the infantilization of the client.”

    I’ve found that mental health programs too often insure inclusion and easy client management by approaching the entire population as if all members had the same needs, weaknesses, and faced the same challenges as the lowest functioning individual in each domain. This is an effective approach for inventory but never for people unless the end goal is an “chronic mental patient”: childlike, conforming, complacent, and compliant.

    The paradox is that the same programs typically assert that they are at the forefront of implementing the Principles of Recovery. Sadly, assertions and reality can be quite different and outcomes too often reflect the later rather the the former. The ever growing population of individuals on disability by virtue of a mental illness is the consequence.

  • I hope that podcasts of the presentations will be made available at no cost. The continuing kick in the head for those of us long into the mental health system is that our limited incomes rarely allow us to attend the conferences, colloquia, seminars and the like that showcase what can be done. Instead we are left to experience the consequences of long standing attitudes and approaches.

  • Duane, Thanks but I see no evidence of the systemic change with was to come about subsequent to Anthony’s 1993 work, “Recovery from Mental Illness: The Guiding Vision of the Mental Health
    Service System in the 1990s.

    Many mental groups collect recovery stories. Sadly in the face of an ever increasing population of individuals on disability by virtue of mental illnesses, what is represented broadly, Recovery and Recovery based systems, can only be evidenced anecdotally and so narrowly.


  • Where our mental health system fails to create environments which foster recovery it is ironic that so much effort goes into collecting stories of recovery, “… recovery stories to kick off a “National Dialogue about Recovery and Hope.'” Perhaps it is their rarity which makes them so special and that is both troubling and real.

    I would much prefer some evidence that our mental health system is undergoing the transformation which was to have led to “The Era of Recovery.” If anyone can provide this evidence I would greatly appreciate it.

  • It would be interesting to learn which recovery services are actually being brought to scale and how their implementation and impact are being evidenced. I ask this in light of the fact that the Mental Health Transformation – State Incentive Block Grants were to lead to recovery enhancing environments. Despite over 1,500 transformational activities the final report includes,

    Were the grants able to create more recovery-enhancing environments? POC [Proof of Concept] studies were designed to focus on areas in which grantees thought they could effect changes. Limitations of this study were that the intervention fidelity and “dose” were not measured and therefore not statistically controlled. The results from these studies indicated the answer to this question is no. (Executive Summary, page 5, para. 2.)

    I’ve found that virtually every provider agency now asserts that services are predicated on and outcomes reflect the Principles of Recovery. Sadly, when asked to evidence the same they can do little more then fumfer or resort to an anecdote. (Increasingly provider agencies assert that services and outcomes reflect both the Domains of Wellness and the Principles of Recovery.)

    I had hoped for better in 1992 when Anthony’s, “Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s,” was published. I now fear that recovery services exist so rarely and are represented so widely that the expression is rendered mere shibboleth. It didn’t have to be this way but in the mental health system change is often represented broadly when it can be evidenced narrowly, anecdotally, or not at all.

    As Dr. Fisher wisely observes, “The time is short, and too many of our brothers and sisters are suffering.”

  • What is particularly troubling as one who suffers from depression is that I and so many of my peers find that our treatment continues to be primarily or exclusively medication despite Kirsch’s paper in Plos Medicine and more recently Piggot’s analysis of the STAR-D. I know with each medication change or addition I will be taking an antidepressant or adjunctive medication which affords me on average a two point reduction over a placebo on the HAM-D. (Of course, I have taken Paxil.)

    While government can seek redress how are my peers and I to be made whole? Afterall, we took the antidepressants and adjunctives we were told would significantly decrease our depressive symptoms but too rarely did we enjoy the promised relief. This involved a significant opportunity cost where the medical model prolonged our suffering and served as a barrier to accessing and/or receiving treatment which might have make a difference, ex. CBT.

    We too were defrauded by “the dirty little secret” but we just don’t matter.

  • In today’s Boston Globe on-line Dr. Steven E. Hyman is quoted as saying,”There has been enormous progress in making drugs safer and more tolerable. [But effectiveness has not improved substantially.] We’ve reached a fairly unsatisfactory place in the treatment of these devastating illnesses.” I wonder if the assertion that there has been enormous progress in making drugs safer and more tolerable can be supported empirically. (The conclusion of the BJP editorial refers to risk-benefit profile.)

    Interview in its entirety:

  • Proof of actual change might lie in NAMI’s reconciling its two messages. The first is that treatment in our nation’s mental health system is quite effective. The second is that the mental health system functions poorly which is the experience of too many consumers. The first can’t be true if the second one isn’t and NAMI gives our nation’s mental health system a grade of D.

    The first message doubtless encourages NAMI’s funding constituency but at the expense of its consumer constituency which it has long marginalized.

  • What remains disheartening is that the press has devoted so little coverage to the plight of those who were prescribed antipsychotics (on and off label, primarily and adjunctively), developed metabolic syndrome and failed to seek redress. Where consumers are supposedly empowered it is telling that relatively few have sought damages. No doubt, pharmaceutical firms benefit greatly from sales to those unlikely to litigate.

    Vioxx settlements on behalf of individuals came to $4.85 billion. Can the settlements with individual plaintiffs who have taken antipsychotics and claimed injury compare?