Second Recipient of the Honored Researcher Award
in Ethical Human Sciences and Services
|The CSET HONORED RESEARCHER AWARD recognizes “Inspired and Courageous Contributions in Human Sciences and Services” and provides recipients an open platform to publish whenever they wish without fear of censorship. We aim to create a publication site where a limited number of outstanding contributors can freely publish their pioneering ideas and where viewers can easily locate them. The first Honored Researcher Award recipient is Peter C. Gøtzsche, MD, the Danish physician and scientist who cofounded the Cochrane Collaboration in 1993, whose courageous scientific and advocacy work helped to inspire this award.|
Introducing Bob Nikkel, MSW
Bob comes from the heart of the establishment as a former Commissioner of Mental Health and Addiction for the State of Oregon. He continues to be a Clinical Assistant Professor at the Oregon Health and Science University, Department of Psychiatry. Yet he has become an important force in the psychiatric reform movements and a great personal ally.
Many people wonder if they can make a reform contribution while working inside the system and I have often responded with great skepticism, saying in effect, “If you start having a good effect, they will fire you.” Bob Nikkel’s career provides a window into how much in fact a good person can accomplish within an inherently oppressive system and he did so for six years as a Mental Health and Addictions Commissioner. With good humor and pride, he invited me to his 10th Anniversary Party, celebrating his firing from the job.
Bob feels grateful for the opportunity he did have to make some positive changes in Oregon, but he tells me “With every year, I feel more grateful for being fired.” Bob, we are grateful, too, because you are an outstanding, caring voice for outreach and successful planning in our reform movement. .
Thank you for accepting the award, Bob Nikkel.
RICHARD SCARRY AND LESSONS FROM A
STATE MENTAL HEALTH COMMISSIONER
By Bob Nikkel, MSW
At my grandson’s first birthday party, I saw laying around on the floor a very well-worn children’s book that my own two children had nearly devoured—Richard Scarry’s What Do People Do All Day? It shows in colorful pictures of a great many occupations: firefighters, teachers, doctors, nurses and about 50 others. Nowhere, however, does it mention state mental health commissioners—one of my occupations. And I began to realize, Richard Scarry couldn’t have been much help in introducing children to that job—nor could anyone else—except someone like me who’s done it.
WHAT’S THIS ALL ABOUT?
But what would the point be in describing what these mysterious positions do? When Peter Breggin and I have discussed these issues, we ponder an important and interesting question: “Is reform possible within the heart (or bowel) of the system?” We have tried to compare reform work inside the system—in which I was very much involved—and outside the system, where I now find myself. What can and cannot be done in each role?
Inside the system, one might make humane and caring changes, but could that lead to supporting a system that needs so much change? Yet outside the system, we all get to have great ideas and to feel righteous, but it is very hard to get anything done. It is quite reasonable to struggle over that dilemma and whether it is worth the work it would take to promote change from within.
WHAT IS A MENTAL HEALTH COMMISSIONER ANYWAY?
What indeed is a mental health commissioner? In almost every state, this is a fairly high-level state administrative position that is usually one or two steps from the Governor’s office. Whether he or she is actually called a “commissioner,” that person is usually responsible for overseeing everything from the state hospitals to all the community residential, outpatient and other services and supports. Along with these duties, there are likely to be a variety of advisory bodies, memberships in other state councils, relationships with advocacy organizations and national associations like the National Association of State Mental Health Program Directors. Often, there are dates with the state legislature. Qualifications for the positions vary from MDs to psychologists to social workers and a collection of others. Most often, the appointees are experienced administrators; but sometimes they are just plain political choices.
Whoever they are and whatever they do, they can easily lose their jobs. An incident like a dangerous patient running away from the state hospital can do it. So can saying the wrong thing, especially if it involves speaking truth to power. The tenures tend to be short with a year and a half window of opportunity being the norm. Before being fired, I lasted almost 6 years.
HOW I GOT INTO THAT MESS
So how did I end up being becoming the Mental Health and Addiction Commissioner of Oregon? What kind of things did we accomplish and how did the experience influence my view of improving the world in which we live?
First, I always said I would never work for “those idiots at the state;” but eventually I became the head of the idiots. However, to be honest, a very capable and dedicated group had come to the state’s mental health division. An unusual psychiatrist had taken the reins for several years and he preached a vision of recovery. The key manager who recruited me had hired me at a local program in Salem 10 years earlier where I served as a coordinator of care for people who were diagnosed with the major mental health challenges known as “the chronically mentally ill.” My job was to keep them out of the state hospital. Somewhere earlier, having worked as an alcohol and drug counselor, I had gotten the idea that “recovery” was really the name of the game so that became a critical focus in what I was doing in mental health work too. I can look back and see now that there was a thread of a theme embedded in all this–that state hospitals were not good places for people to spend any time in.
When I was asked to apply for the state position, the prospective major goal was to close the centralized state hospital psychiatric emergency units where people were admitted when they went into extreme states, or were having suicidal or psychotic experiences. That certainly seemed worth doing because people were staying far too long away from home, secured for about 60 days and subjected to all kinds of stigmatizing interventions and sometimes dangerous situations.
What really closed the deal for me was the prospect of coordinating a new program just starting and operated by one of the earlier peer service programs. Called the Mind Empowered, Inc. (MEI), the program was assigned 35 of the most difficult-to-discharge people from a very troubled state hospital. The MEI staff consisted of people who had themselves been in this state hospital, had figured out how to live successfully in the community, and were trained to work in care coordination. I figured that if the state was crazy enough to try something like this, I might fit in for a while.
The program worked. We wrote it up in an article co-authored by the director and manager of the program and it was published a few years later in what was then Hospital and Community Psychiatry. It was included under a column called, of all things, “The Chronic Patient” and eventually cited in the US Surgeon General’s Report on Mental Health (2000) as one of the earlier examples of peer-delivered services.
Fitting with the theme that had developed in my career of keeping people out of state hospitals, we made a decision to close a very troubled and destructive state facility. One of the tragedies that led to the closure was the death of a young Native American in a seclusion episode in which the staff placed a towel around the young man’s neck and choked him to death. When we investigated the incident, we found that in this state hospital’s culture, they had used an approved policy named, “The Bum’s Rush.” We did the hard work by developing several-hundred community placements so that not a single patient was discharged to the streets, the way deinstitutionalization usually worked.
I had a dozen years in the state office to season me before my job at the top. Still, how did I come into the position of leadership more than a decade later? I call myself, “The Accidental Commissioner.” In terms of bureaucratic preparation, I never took a course in administration in graduate school, believing I would be a family therapist or community organizer. When I was approached about taking the commissioner’s position, it was during a period of extreme state budget deficits. A bit shocked, I told them that I was not interested in dismantling the first community mental health system in the country—though maybe I should have been more open to it. I had become aware by then of Peter Breggin’s reform work and had worked with several psychiatrists who believed that patients were being over-medicated. They were already “deprescribing” but it did not really sink in enough. I finally agreed to be appointed but only if it was time-limited to 3 months. At the end of the 3 months, I was informed that I was “it.”
THE REALITIES OF BEING A COMMISSIONER
So what was it like? Two hundred emails a day, 8 to 9 hours of meetings. Supervision sessions with the state hospital superintendents and medical directors, and leading staff meetings to discuss programs and problems that came up. Preparing the state mental health budget and presenting and defending it to legislators. Visiting programs and consulting with local mental health program directors. Setting up times to talk with people who wanted my ear about one thing or another. Innumerable informal discussions. And somewhere in there, usually in the evenings or weekends, I tried to read and think about changes to improve things.
I also learned that in these positions, you “play the hand you’re dealt.” That meant continuing the limited vision I had—not for closing all the rest of the state hospital beds but to continue to minimize the number of people who ended up in them, decreasing the amount of their lives they spent there, improving the quality of their lives while there, and preparing them to pick up their lives again once back in the their home communities.
In reality, I had no control over the largest issue; the state hospital was not going to be closed during my tenure. There were two main reasons. The state’s major newspaper, The Oregonian, had a couple of investigative journalists looking at things and they had exposed the dilapidated conditions of Oregon State Hospital. The Senate President, discovering finally that it was in his district, toured it with me and decided it needed to be rebuilt—not closed down.
The second reason was that I had no control over the admission and discharge decisions for about two-thirds of the patients—the so-called “criminally insane” or forensic patients. They were admitted through court proceedings in which their defense attorney would plead “guilty except for insanity” and the judge would agree. That verdict sent the person to the hospital where discharge, when it eventually happened, was determined according to a very restrictive interpretation of “public safety” by an independent state entity, the Psychiatric Security Review Board. The size of the new state hospital was the result of a simple math equation: The number of patients admitted each year and their average length of stay equaled the number of available. The new facility that was planned (and built after I was gone) was much larger than it should have been.
CHANGES WE MADE INSIDE THE SYSTEM
To provide a sense of the kinds of reforms that can be accomplished within the system, I will list some of the initiatives and steps we were able to take, while my role in many instances was to support the good things that others brought to the table. In others actions, I took advantage of timing and funding opportunities. Some of the changes came about as creative ways of solving budget problems. I also want to acknowledge that some of these improvements may have led to supporting systems that really should have been abandoned entirely (see below on the “law of unintended consequences”). When you feel you’re making improvements, it can desensitize you to the larger picture. You can convince yourself you are doing more good than you are.
I am listing some of our reform accomplishments here as a way of demonstrating what we collectively accomplished; but they are in no way an endorsement of the recent inhumane proposal to re-open state institutions that has emerged out of Washington DC.
- Increased supports and reduced lengths of stay in institutional care facilities for children and adolescents.
- Closed the state hospital units for children and adolescents and transferred services to community-based programs.
- Increased housing options with $6.15 million worth of investments to develop housing valued at a total of $55 million to assist people moving from institutional settings and homelessness, and to create housing for people with barriers to residential stability. One hundred twenty-eight individuals were moved from state psychiatric hospitals to community settings.
- Funded peer supports to establish over 100 self-help groups for people with both mental health and addictions challenges.
- Distributed $4 million for jail diversion programs in all of Oregon’s counties
- Secured $3 million in state funds to expand early psychosis programs for 200 young people and families experiencing a first psychotic episode
- Established cultural competency standards for all state and local mental health programs
- Created a “Wellness Initiative” to improve the health of individuals with mental health challenges in order to address the 20-25 year decrease in life expectancy.
- Changed the name of the state hospital in Eastern Oregon to Blue Mountain Recovery Center after receiving a petition asking for the change from the patients who were there.
- Reduced average lengths of stay at the state hospitals by 30%.
- Initiated a Peer Bridgers project at Oregon State Hospital
The question that remains is this—were all the efforts to change worth it? Did we do more harm than good in possibly bolstering a system based on a medical model that has reified diagnoses and that almost always over-medicates? Furthermore, it was a series of changes that had almost no recognition of the short- and long-term neurotoxicity of the drugs used, nor the mid- to long-term health complications of drugs. It furthered the continued isolation of people who may have been released to community neighborhoods but are not really part of them. I will say this in defense of our reform efforts: At least for now, children in Oregon never have to say they had been in a state hospital.
Despite my now more critical views of the changes we made, I take from this experience as a commissioner working inside the system some possibly useful ideas. I have come to realize that my “lens” in the progressive, reform or critical psychiatry world tells me we have to do a better job of focusing on “6 Ps” plus three others: Policy, Program, Partnerships, Politics, Personnel, Personalities, plus Finances, Timing, and Systems Thinking. That is, if we are serious about seeing changes come about from outside the system, here they are:
- Program: Do we have a good idea for what needs to change?
- Policy: Are there policies or even laws that need to change?
- Partnerships: Who do we need to partner with inside and outside the system?
- Politics: Are there elected officials who need to be involved in some way?
- Personnel: Do we have the people on board who are capable of making the change successful?
- Personalities: Do we need to take into account certain personal characteristics of the people involved in making the change happen?
- Finances: Do we know what the program or practice change will cost and who will pay for it?
- Timing: Is the idea for change something whose time has come
- Systems Thinking: Do we know how the change might impact other systems so that we avoid the “law of unintended consequences.”
CAN THESE LESSONS BE APPLIED TO OUTSIDE-THE-SYSTEM CHANGE?
These seem like fair and far too infrequently asked questions when contemplating changes from outside the system. Now that I am working for change with the Mad in America Continuing Education Project and the Foundation for Excellence in Mental Health Care, I feel an obligation to help other advocates get up-to-speed on how realistic change comes about and to help in going to work on it. The old mental health commissioner remaining in me says.
“Now I should do it but with a more radical and enlightened vision than I had before.” The freedom of thought and action that comes with being outside is quite liberating.
A starting place is to identify systems and leaders where changes can take place, including receptiveness to new ideas. We need to find systems with funds and with people who can make use of supports and services that can lead to better outcomes in the form of improved lives. My bias is that this is the publicly-funded system. There is a lot of funding in the United States—we rank first in per capita spending on mental health and, like health care, we get some of the worst results. For example, I had a small state/federal budget in Oregon, a state with 1% of the US population and a still huge 2-year budget of $2 billion. And, the amount of public funding that is tied up in psychiatric drugs is equally mind-boggling. In one small Southern Oregon region, we had one child psychiatrist who billed $457,000 worth of Abilify in one year.
Starting to develop partnerships with creative, outcome-oriented and humane partners is the second step. I would then recommend following up on each of the items in the “Lessons Learned” above and taking it from there.
If one wants to avoid the public system, then the other choices are to begin what I predict will be a labor-intensive search of private insurance corporations or philanthropists. These take a great deal of cultivation and relationship building for “outsiders” to become “insiders” and work for real change within those systems. Again, I believe the lessons learned can serve as guides to that process too.
In the meantime, I will acknowledge the limitations in what even good bureaucratic practices will accomplish in respect to radical change. I do realize we are in an uphill battle. We need the continuing agitation and agitators that propel systems toward humane approaches to mental health challenges. We also need much more education for professionals and peers like the Mad in America Continuing Education Project that is based on solid unbiased research and personal lived experience.