A second consideration is this – can systems change? And is it worth trying? I know that I am seen as a hopeless reformist to many, that it is a waste of my time and, far worse, it is raising unrealistic hopes that a totally dysfunctional misguided system can be changed or even should be in existence.
I will acknowledge that I may be completely off base and even if not, the radical criticism of a system that has failed so many is an essential counterbalance to my views. Related to this is the question of whether the principles of an organization like IDHA (The Institute for the Development of Human Arts) can apply these lessons in some way to efforts to change systems of mental health care. It is not mine to say, but from my perspective as a former mental health commissioner, I think they could and I hope to demonstrate that to some degree in this blog.
This point was driven home to me when I was fired for pushing for better ideas about how to integrate mental health, addictions, and dental health into broader physical health reform. My ego was a bit hurt. So I went home and before I could forgot them all, I wrote down all the things I’d accomplished.
The first person I showed them to was my wife and colleague in almost everything I did, Dr. Gina Firman Nikkel. She tactfully but quickly brought me to my senses by telling me I hadn’t achieved these things alone – they came about because of the efforts of so many other people – in the categories I just mentioned.
Here are a few concrete examples of changes through partnerships we were able to make over the nearly 6 years of my tenure. Some of them were system changes, most were probably more preludes to broader reforms. The first example was closing the children/adolescent units at Oregon State Hospital.
The funding we accessed for increasing safe and affordable housing was another initiative that made life-changing differences for people who otherwise would have continued to find their lives almost unmanageable. This required careful partnerships with federal housing resources and local builders and county mental health programs. It was clearly a move toward social determinants of health care and there has been increased interest in the changes to systems that these resources make possible to consider.
Peer supports has been a long-term interest for Oregon and for me. This goes back 30 years to the Community Survival Project (operated by MEI) that demonstrated how people who had been state hospital patients themselves were the most effective supports in getting people out who had been stuck there for long hospitalizations. So a funding partnership was created with a state agency deeply involved in forensic issues and it led to funding Dual Diagnosis Anonymous.
DDA has grown to include 4,000 people who now get critical needs for attachment and authenticity met. If you doubt the impact on people’s lives just ask them. There are groups that have spun off from Oregon’s version now in about twenty other states plus a dozen meetings in London and more developing in Scotland, Germany and other places in Western and Eastern Europe. There are bills introduced in both the Oregon and Washington legislatures to establish peer respite centers. I doubt that many readers fundamentally disagree with the radical changes that are represented by peer services.
Lesson Two is that not everything one works toward will result in immediate large system changes. But you never know for sure at the time which are which. It pays to go ahead and play the cards you’re dealt. System changes we didn’t get to are admittedly some of the most challenging. As I have noted above, changing from the medical model to one based on social and environmental conditions is the most important. These are the kind that will require work with local, state, regional leaders, managed care organizations, other advocates, legislatures, parliaments and other state, provincial and national lawmaking bodies.
Lesson 3 applies to these kinds of system change efforts – Know your lawmakers and other elected officials who have direct control over mental health policies and programs. In the U.S., to work on legislative initiatives. They are the ones who sponsor bills, expect careful analysis of bills, arrange for hearings, and all the other sometimes behind-the-scene activities to get major system changes accomplished. Lawmakers must get inspiration and often basic information to counteract the distortions they are like to have and which have often been shaped by commercial interests
Lesson 4 fits with Lesson 3, Know your numbers. That includes knowing how the current budgets work, where the revenue comes from, where it goes, the number of people served in the existing and usually (though not always) dysfunctional system. If you are proposing or advocating for major changes in how the system operates, know what the new approaches will cost and be able to back up your cost estimates. Be able to project short-term as well as longer-term budget impacts. An overlooked and often deliberately hidden budget cost is that of psychiatric medications. Finding this information is a challenging first step. Estimating what savings could be made must take into account the fact that people already taking these drugs will have to withdraw gradually.
It is likely that significantly curtailing use of medications for people coming into the system will lead to more savings but will also require parallel changes in attitudes and knowledge for practitioners. And it will require more knowledge and result in more resistance on the part of those who prescribe the drugs.
Lesson 5 is to master knowledge about outcomes. These are of two types – “process” and “functional.” Many of the outcomes that are commonly accepted are “process outcomes” such as the number of people hospitalized, the number of people who get different levels of care and various kinds of procedures. While these are necessary, they fall short of those that are most meaningful – “functional outcomes.”
Functional outcomes are those that make real differences in people’s lives like how satisfying life is, health status, employment, income, and even measures like life expectancy. Sometimes certain process measures actually reinforce the most unacceptable functional outcomes. A perfect example of this is Oregon health reform’s single mental health “outcome”, the number of people screened for depression The problem being this usually led to prescribing antidepressants which research shows clearly leads to poorer functional outcomes like depression, increased suicidality for many, and withdrawal symptoms for about one half of those who are started on these drugs.
Lesson 5.1 then is: don’t settle for process outcomes, push for the measurement of functional outcomes. Finally on Lesson 5, it is critical to know what constitutes well-designed and unbiased research into outcomes. And one missing piece in far too much research is that it assesses short-term outcomes rather than mid- to long-term results. This will also put you in a much stronger position to counter the often sloppy and short-term research funded by commercial interests.
Lesson 6: Know whether a given policy or practice change can be made without going through the legislative process. Sometimes changing laws is necessary, but it’s very challenging and usually time consuming. An example of a policy change that could lead to practice changes are drastically enhanced informed consent standards and/or expectations.
I believe that if people were really properly informed on what to expect from these drugs, they would be much less likely to accept them. For this reason, the Mad in America Continuing Education project has a series of 6 webinars focused on this issue and could become a leverage point for these changes. Another psychiatric drug policy change would be to advocate for what I call a “MedMap” process to be implemented in every mental health program. This would require tracking which prescribers are prescribing which drugs in what dosages to which people.
I learned recently that this approach was taken a number of years ago in the reform of a state facility under pressure from federal mandates and that it resulted in a drastic decrease in the use of psychiatric drugs. Of course, we can expect great resistance to these kinds of changes but they do not really require changes in laws in order to implement if advocacy is carefully constructed and implemented.
Lesson 7 is know how to get information to key players. They often don’t know what they don’t know. Administrators and clinicians are always pressed for time and too often just don’t have much interest in staying up with the field, particularly good research on outcomes.
In this process, recognize the culture you’re dealing with. This is awkward to say, but most of them wear nice clothes and they’re used to dealing with other people (providers, lobbyists, etc) who also wear nice clothes. So, unfortunately, things like appearance, clothing, communication style, conciseness are significant factors in whether we’re taken seriously.
Related to Lesson 7 is Lesson 8: Know what to expect from state mental health leaders – they’re usually short term and highly political in nature. They are bombarded with problems of all kinds. Learn to respect their time crunches, learn their biases, find out what got them appointed – there are usually agendas that they’ve been given to address. But one of the worst things is to not expect anything.
A recent illustration of this came from the Mad in America Continuing Education webinar – child welfare agencies have federal mandates regarding the over-medication of kids, but it’s commonly known that the mandates aren’t being followed. To this end, understand what’s driving the resistance and create sound arguments about why they should be addressed: fiscal, loss of control to the feds, etc.
I have heard my colleague and fellow board member with the Foundation for Excellence in Mental Health Care, Dr. David Healy, say that we expect too much from top-down approaches and his Rxisk.org project provides the kind of grassroots information about psychiatric drugs and their effects that is essential to making changes.
Finally, Lesson 10 is to be prepared for subtle and not-so-subtle discrimination – the unspoken variety is sometimes most powerful – “once a mental patient, always a mental patient.” I heard just this week a mid-level manager state that many people believe “most advocate leaders are really personality disordered, not mentally ill.”
Others can add their own lessons. This is by no means a complete list, but if it serves as a starting point for more system change work, it will have served a purpose.
Robert Nikkel, MSW, is a Clinical Assistant Professor in the Public Psychiatry Training Program at Oregon Health and Science University. He was the State of Oregon’s commissioner for both mental health and addictions from 2003-2008. He is the director of the Mad in America Continuing Education project and a member of the Board of Directors of the Foundation for Excellence in Mental Health Care.