Last year I watched how Kevin Fitts achieved a major victory for peers in Oregon. He did something that went beyond well-founded criticism of the mental health system. He succeeded in getting $6 million over two years in order to create four peer respite programs in four areas of the state. The Oregon Mental Health Consumers Association, a nonprofit 501c3 for which Kevin works as their lobbyist, was the author of the Peer Respite Bill. This success was the result of a sophisticated approach to system change and achieved by the initiative of Kevin’s work with state legislators as a person with lived experience.
It led me to think about what could happen if many more than one could work in concert using what I have learned from Kevin’s remarkable efforts, as well as what I have learned from my years working within the system, dealing with program and policy changes, budgets and working with the state legislature and local elected officials and policy makers.
I believe that with the initiation of the highly touted 988 crisis call number system change it is even more critical to advocate now more than ever. Rob Wipond, Keris Myrick, Shelby Towe, and others have called attention to the likely violations of civil rights with this new way of handling crises, which is under way in all communities in the United States. The medical paradigm of the system is not changing. In fact it will be reinforced. I believe it will result in more people being started on psychiatric drugs, being told they have chemical imbalances for which the medications are the answer, and that they will need to take these in order to stay stable. (Those who choose to use medications should be fully informed of how they are supposed to help, the risks involved, and the likely benefits, for short, mid- and long-term use.)
To minimize these kinds of results will require the kind of sophisticated advocacy we saw in Oregon this past year. I offer the following 20 suggestions for advocates who want to get something done and not just vent their quite justifiable criticisms of the way mental health services have been organized historically and are still structured, delivered, and reinforced by 988. The timing will give us a perfect opportunity if we take it.
- Define the goal and the target for making the change and at what level (i.e. federal, state, or local). Start by developing a concept for change. For example, how do you want real informed consent to change? The concept at this earliest stage should be as brief as possible, something that is clear and does not try to cover all the details of what you will come up with later. An example of a concept for informed consent would be: “Most people who take psychiatric medications are not provided with complete information about these drugs.”
- Try floating the concept as a trial balloon with a few people familiar with the process of moving these kinds of things along. If you have a connection with a potentially interested legislator or two who you trust, those might be excellent people to consider. If they react in shock or lack of interest, you know you have your work cut out for you.
- Where would you want to establish it? Would it be a regulatory change, a state law, a federal or state policy, a contract provision or what? It’s probably obvious that the higher the level of government or practice or contract level change you are seeking, the more challenging and time-consuming your efforts will be. You have to be prepared for this. Start getting more specific language about what the change or changes will be. The process of creating it should be collaborative. It should be facilitated by a person skilled in interpersonal relations, organizing, and handling group dynamics. It should be someone who knows enough about the issue to recognize when your language is as complete as it can be without trying to solve every problem. Pay attention to words—obviously avoid stigmatizing terms like SPMI, chronic mental illness, and anosognosia unless they are somehow still required in existing statutes or regulations and you can’t change them in this one advocacy effort.
- How do you want to affect down-to-earth changes like practice standards or an increase in funding for peer supports? This could be at public and/or private targets and by working with national organizations such as mental health commissioners or the National Association of State Mental Health Program Directors. These organizations should be approached via their medical directors or others in administrative positions to accept the language, promulgate it among members, and develop or accept training outlines developed by qualified medical providers. Other organizations include the National Association of Social Workers, the American Psychological Association, the American Counselors Association, and the National Association of Community Health Centers. Most of these national organizations have state organizations and these are often most important to engage with in advocating for changes in state laws and county contract requirements.
- Who do you need to engage in “sponsoring” the law or rule or policy change? If it’s a law, you need a sympathetic legislator to understand what you are trying to do and get an initial “read” from them about what they think is realistic and what they can seriously consider supporting. The same kind of thing applies if it’s a rule or policy—you need an administrator or manager as high up in the local or state government system as you can get to understand and help with what’s realistic. In most states, this would be the behavioral health director, who is normally also the state mental health commissioner. These individuals have authority in making statewide changes, although turnover is high—the average commissioner lasts about 2 years or less. It is a politically sensitive position and there is usually reluctance to go out on a limb and jeopardize their tenure by taking unpopular stands. Counties have community mental health directors to consider, but these organizations do not have the authority of the state leadership. A change in federal policies or statutes would be the most difficult and time-consuming to achieve.
- Don’t let other issues distract the process, like mandates for masks, requirements for Covid vaccinations, etc. Whatever one’s personal concerns may be in these kinds of situations, expanding the initiative will itself create enough controversy and opposition without adding more. This will also confuse those who have the authority or willingness to work with you on changes.
- Anticipate who will oppose it—physicians and psychiatrists, insurance corporations, many public and private policy directors, various bureaucrats, and the professional organizations already listed above. For example, corporate and other groups with lobbyists (particularly the pharmaceutical industry) have great influence on elected officials. Legislators and candidates for office often get some funding directly as well as through Political Action Committees. Their ideas about mental health are usually based on the belief, based on the medical paradigm, that there are chemical causes of mental health problems and that the medications restore the balance missing. This will come up repeatedly in many ways.
- Prepare ethical and science-based positions to support your proposed changes. Again, using the example of informed consent in suggestion 1, counter-arguments would bring up the fairness of supporting people’s right to choose. Cite independent researchers, and innovative programs should be referenced. It is extremely important to present them in plain language and not in a technical or academic way.
- Prepare solid information on the risks of the change. Changes almost always involve some degree of risk. One risk will be to deal with opposition from organizations and individuals who are seen as authorities. This is usually politically sensitive and therefore presents a kind of paradigm shift that does not come comfortably to elected officials.
- Identify authorities who would be willing to submit briefs or provide testimony. It is unlikely to get this kind of testimony written by well-known programs or researchers themselves; however, it is always possible to ask them and surprising the amount of the time they will give it. The worst that can happen is they are not available or just don’t respond.
- It makes a lot of sense to draft testimony that speaks to the change you are trying to make and submit it to people who are more well-known at whatever level you are working on. State and local experts are best. Peers can also be a powerful force and could include some who have worked on crafting the bill or policy or clinical change.
- Assess the costs of your change or changes and who or what kind of funding would pay for them. Assess the savings that could come, to whom, and when they could be expected. Identify the benefits, such as reducing the costs of medications. In Oregon, the cost of all Medicaid-funded psychiatric drugs was provided within a few days using a Freedom of Information Act (FOIA request).
- Engage other advocates—peers, families, advocate attorneys, prescribers who would be supportive. Many will hopefully be involved in discussions and even a work group. In any event, develop a strategy team and then a strategy for who will be key advocates for the changes. Create agreement on the strategy and ways to work out disagreements, confusion, changes in the process as you go along. Do not let personality conflicts or other divergences from all of the above create tension. Opponents will play these to their advantage.
- Figure out how to deal with issues related to involuntary treatment. This is one of the most challenging, legally perplexing, and politically difficult. Obviously, by definition, these individuals do not have a choice. Getting legal advice is critical here. Choice is almost always limited in state prisons, local jails, state hospitals, youth authorities, nursing homes, and child welfare settings. It is well-known that forced treatment and psychiatric drugs are far too often used to control behavior in the present moment but then continued far beyond. A principle should be that choice should always be respected, and honest information should be given to people and families involved with the mental health system.
- Figure out what resources would be used to educate prescribers. This is another critical issue because many if not most prescribers really don’t know enough to do a good job. Figure out how to get medical education resources like medical schools, CME resources as incentives, and FDA “Medication Guides.” Ideally a department of psychiatry at your state’s medical school could be enlisted to help. Having that kind of authoritative and respected source would be an incredible resource. Developing CME credits is extremely challenging if attempted outside those familiar with the process.
- Determine timelines for implementation. If you leave these out or they are indeterminate, it is likely nothing will change. Identify when and how changes will be monitored and enforced and do not leave these issues out of the statutory or other regulatory changes you are seeking. It will be a challenge even then to enforce them but remember Saul Alinsky’s admonition—one of the most radical things you can do is to make the system follow its own rules.
- Create a public information strategy—what’s needed to get broad support and “change the conversation.”
- Draft the bill or policy change you want based on all of the above. Unless you have people with these skills already on board, you will likely need at least some consultation from people familiar with this process to make it credible. Decide who is best to testify at hearings and work on preparing testimony for hearings.
- If adjustments are needed, which they sometimes will be, assign this to the strategy group who will then do whatever checking with proponents of the change is advisable.
- Do not let this take forever because timeframes usually have limits, such as the end of a legislative session. Be sure to learn what the timelines are for the decision makers who are involved.
These suggestions are offered without claiming they cover every possible effort to make system changes. But they are an attempt to give advocates a head start and ideas for steps that otherwise may not have been readily available. System change is never simple, nor is every system changeable. Many will and should continue to raise objections to reforming what can be viewed as a hopelessly flawed world of mental health. But the kind of changes led by Kevin Fitts and his allies are going to offer choices where there have too rarely not been choices before. That seems to be a bedrock principle to me.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.