If I’d Known Then
What I Know Now

Robert Nikkel, MSW
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Please note: If you are a state mental health commissioner, this blog could be hazardous to your continued tenure.

Recently at a neighborhood Fourth of July celebration, I talked with several people who live in nearby residential “treatment” homes. They almost all had tardive dyskinesia and most looked as if their emotions were so dampened down that they sat staring at the street in front of them, only incidentally aware of the sparklers and firecrackers. And all but one looked like they were well on their way to a prolonged case of “chronic mental illness”.

It made me think about how my efforts as a state mental health commissioner for 6 years had promoted these kinds of lives. I believed our projects were examples of the progressive steps we had taken in deinstitutionalizing the lives of people with significant mental health challenges. Most were probably started on the medications while spending about 10 days in our local acute psychiatric units and every time they had “breakthrough symptoms”, their med dosage was ratcheted up or they were started on an additional one to “stabilize them.” At least they weren’t homeless or in prison.

So if I’d known then what I think I know now about our overuse of psychiatric medications (and all the words we were using to dehumanize people and their experiences: see my earlier blog at madinamerica.com and this Foundation’s website “The Words We Use”), what would I have done differently? Was my occasional reference to recovery hollow?

Once I get beyond my increasing regrets and start trying to imagine steps I could have taken, here’s what I would do.

CEU’s for Professionals

I would start by setting up discussion groups as in-service training for psychiatrists, nurse practitioners, mental health therapists and advocates to go through Anatomy of an Epidemic chapter by chapter to promote a basic understanding of the issues raised by a careful review of research literature. I would arrange for Continuing Education Units for those with requirements for maintaining licenses and certifications. And I would work with colleges and universities to grant academic credit to those who participate. Should these educational activities be folded into state administrative rules for licensing and approving programs? Probably, though it raises issues of safety and power and control. These steps could be encouraged by the openness of the conversations. Since most states are grappling with how to integrate health services, the discussion groups would be available to primary care physicians who, in fact, prescribe the majority of anti-depressants and anti-anxiety meds. I would bring Bob Whitaker out to Oregon again to talk, just like the recent NAMI annual convention.

Truly Informed Consent

The same kinds of information sharing would be extended to people who are “in the system” as well as to families, schools, child welfare agencies and jails and prisons. This step would be frightening to everyone except some people with “lived experience” and to parents and foster parents of far too many children and adolescents being fed a steady diet of atypical anti-psychotics, anti-depressants and attention deficit medications. The fact that these activities are likely to be felt as threatening suggests that we probably aren’t taking informed consent all that seriously. Our lip service should be replaced by a healthy discussion of the risks and benefits, both short-term and long-term, by far less reliance on meds, by methods for assuring that changes are gradual and by careful consideration of alternatives. More on that later.

Medicaid and Finance Reforms

Any of these changes would by necessity be accompanied by changes in administrative and financial arrangements. One would be to establish evaluation tools to monitor changes in prescribing patterns at the practitioner level as well as on aggregate clinical outcomes. It would review short-term as well as long-term outcomes along with short-term safety standards. And yes, this would require the allocation or reallocation of funds for the additional investment in developing and implementing these metrics.

Financially, most of our healthcare system in the public sector is based on Medicaid law and the federal approval of state plans. The centerpiece is “medical necessity” which is quite limiting when it comes to enhancing funding for alternatives to psychiatric medication. Most programs are enslaved in large part to the Medicaid mill of the 15-minute med check because it easily meets the requirements of virtually all state plans. And so the vast majority of programs are organized and supported by the medical model or at least have to justify everything through this lens. I would press the feds for a simple but critical change from “medical necessity” to “health necessity.” We have known for many years (see Steven Schroeder in the New England Journal of Medicine’s oft-quoted 2007 article, “We Can Do Better”) that health outcomes and premature deaths are influenced only 10% by medical factors. Given that adults with major mental health challenges die 20-25 years earlier than other Americans, shouldn’t it be of considerable importance to broaden Medicaid incentives in the way of this simple but challenging modification?

Reforming Healthcare Reform

I believe that most healthcare reform and integration efforts, because they are totally blind to these considerations, will fail to produce positive outcomes. For example, it is simply not enough to screen for depression if all that happens next is to prescribe what we now know to be highly ineffective anti-depressants–unless it’s a placebo effect we’re counting on. And we will likely continue prescribing outrageous volumes of mood stabilizers, atypical anti-psychotics and anti-attention deficit meds to outrageous numbers of kids. I would place major disincentives for these practices in integrated healthcare contracts and measure physical health and developmental complications like metabolic syndrome. These data points would be made available to persons choosing services, their families, the public, legislators, and the health agencies.

Reexamine the Diagnosis Worldview

Psychiatric diagnosis — I would complete a total re-examination because it’s another foundational piece of Medicaid-inspired systems of care. You get an often stigmatizing quasi-medical label as the ticket into these medically necessary services and supports. Setting aside the question of their validity and reliability, they tend to encourage the idea that “I’m sick” which too often leads to an identity as a mental patient. I would really encourage every professional to gently remind people that they are not their diagnosis and that they don’t need to introduce themselves as, “I’m a schizophrenic.”

End the Carve-out of Psych Drugs

I would work with the legislature to immediately stop the “carve-out” of psychiatric medications from the Medicaid budget. The carve-out means that these medications are left unmanaged and that any cost discounts are not available to the mental health system. A free ride for the pharmaceutical companies is a huge budget item. Some estimates range as high as 50% of the total cost of all the other mental health services.

Get Real about Recovery Services

This begs the question, “If we rely far less on medication approaches, then what will we use as alternatives?” It isn’t enough to correct our overconsumption of psychotropic drugs unless we also think through and implement the needed complementary and alternative services. Bedrock for young adults would be the universal adoption of early psychosis intervention programs. It’s still too early to say these should be modeled on adaptations of the Open Dialog approach or the McGorry-inspired Early Assessment & Support Alliance (EASA) in Oregon. But we need to be expanding such programs that are explicit in their expectation of recovery. We should never again use the highly pejorative and inaccurate term “Chronically Mentally Ill”, much less “Persistent Mental Illness.”

If I did anything right in my leadership years, I teamed with many others in gaining funds to expand the availability of early psychosis programs to the majority of Oregon families. This should be the standard of practice in the 49 other states. And I did encourage the recovery approach by starting an advisory council for people in our system to talk directly with me on a regular basis. For the state hospital, we initiated a Peer Bridger program and began to offer Supported Education to patients who are confined there for far too much time. Dual Diagnosis Anonymous got off to a roaring start. But all of these kinds of efforts could have been made much more visible in aid of promoting the recovery concept. If I had it to do over again, I would push much harder for the programs that offer supports and skills, often referred to as “Psychiatric Rehabilitation” but which might be better described simply as what they are: supports and skills for recovery. Who wants or needs to be “rehabilitated?”

Preparing Higher Ed for the Real World

Beyond these changes, I would create relationships with all of higher education, especially the medical schools and those that offer graduate degrees in social work, nursing, psychology and counseling. We would revise curriculums in order to start turning out professionals who have at once a more realistic and more hopeful view of our systems, who won’t need to spend their careers unlearning and then relearning the way we’ve had to do over the last 50 years.

And then, after doing all these things, I would almost immediately get fired.

8 COMMENTS

  1. Hi Robert-
    Thanks for the post. I’m a social work educator. I teach at Georgia State. Jeff Lacasse and I have contributed article to the social work literature (downloadable from digital archives at GSU under my name-just google). I would like to be more visible in carrying the message. Give me a call, perhaps we can formulate a plan. I’ll be attending the WRAP (Copeland Center Summit) in September. I’m hoping to learn more. I also think that if possible we need to write a SAMSHA grant. My e-mail is [email protected]. Home phone is 770-939-7409. I don’t work in summer, so contact me at home.

  2. Forming groups to read and discuss important work, such as Anatomy and Mad in America, as well as foundational work by Users/Survivors (U/S), is a good idea, not only for providers and researchers, but for all interested persons. I have thought about this too. Some people might be more comfortable with a sort of “study guide” to the chapters or articles. Some groups might be limited to U/S, some might be open to providers who are willing to listen without resorting to the default of the clinical gaze or authoritarian pronouncements on *facts or *science. It is all a tricky business.

    As for early intervention (as well as lots of *screening), I used to think that this was good, as in diabetes, cancer, learning, etc. However, it depends on the theory/model and the chosen interventions. If early intervention results in lots of forceful or unnecessary or stigmatizing or costly actions without beneficial effects or with harmful effects, then these screening or early intervention actions are not to be recommended or undertaken. Even in medicine, there are many controversies about screening and intervention for breast cancer, prostate cancer, cholesterol levels, asthma drugs, C-sections, hormone supplements, etc. Industry and professional associations greatly influence the notions around causes, interventions, timing, doses, prognosis, etc. , and provide *tool kits or *arsenals for professionals and the general public. The education many professionals receive now is focused on supposed biological deficits, individual and familial, with the idea of *lifestyle (in addition to *genetics) as an explanation for all ills. Upstream issues like stable housing, decent jobs with living wage and benefits, safe neighborhoods and schools, good care, recreation or leisure, access to good medical and dental care, is often not considered, and our culture of violence, racism, sexism, agism, etc. is generally ignored. If we bring individualistic and mechanistic models to early interventions, with the same punitive and judgmental mindset common in dealing with people w addictions, MH Dx, prison histories, etc. , we will only harm people earlier in life.

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