I have been wondering for some time how we would know if the mental health systems in the United States were really reformed. It is true that there are “a thousand points of light”—many great new and older programs and initiatives out there with tremendous advocacy and efforts at radical change. But when a system leaves so many without recovery-oriented supports, it is like swimming upstream against a powerful current. Here are 20 indicators that if fully implemented would represent a complete system reform.
1. No one would ever be told they had a “chronic mental illness.” Everyone would be told they can expect to recover, i.e., get a life back that will be reasonably happy and productive.
This term, along with most if not all diagnostic labels, gets used so casually that unless you’re the one on the other end of it, it’s not even evident that it carries a huge negative impact. Besides, it’s not accurate. Most people can and do get their lives back in gear—if the “system” stays out of the way or provides services in a truly recovery-oriented manner. And by “recovery-oriented manner” I don’t mean waving the term around like a flag without actually changing practices. Recovery has become a popular catchphrase but the reality may not match the public relations initiative.
2. Every prescribing professional will be educated about what well-constructed unbiased research tells about the relationship between psychiatric medications and recovery.
The blank looks that appear when mention is made of the work of Robert Whitaker, Peter Goetzsche, Martin Harrow and Lex Wunderink tell us a lot about whether prescribing professionals are up-to-date on what research actually says. Often there are hostile and defensive postures from tradition-bound psychiatrists—most of whom have never read or studied the work of these courageous researchers. Fortunately, there is an increasing number of all types of mental health professionals who are opening up to this knowledge base—sometimes admitting that secretly they have been reading Anatomy of an Epidemic. Professional and continuing education is a critical need.
3. Every person who comes in for service is provided with full informed consent about psychiatric medications.
To achieve this reform, “Accepted Community Treatment” standards would need to be changed significantly. Far too often, current practice consists only of the most cursory review of possible side effects like dry mouth. Full informed consent is highly unusual. This is partly related to the lack of knowledge among physicians themselves, but underlying this dynamic is often something more telling: a lack of respect for informed consent itself and a preoccupation with “compliance”—if a patient really knew all about the medications, they would be non-compliant. “Compliance” is a term that should be eliminated because it reflects the belief that “psychiatric patients” are unreliable, will rebel against psychiatric expertise, or they lack “insight.” A carefully constructed new standard for what constitutes full informed consent is urgently needed.
4. Every mental health program will implement and maintain a medication tracking system and use it to recognize over prescribers and provide them with additional education, monitoring and supervision.
It is feasible in most programs to create a digital quality assurance tool that would track: 1) the psychiatric medications 2) each prescriber in the program is prescribing, 3) in what dosages 4) for how long, 5) to which people 6) with which diagnoses and 7) the ages of the patients. This data would be analyzed to determine which prescribers are prescribing in excess of what research and safety standards should dictate. Targeting education tools could then be created to make changes consistent with evidence-based medication practices.
5. Every mental health program of all types and settings will offer peer services and supports to guide recovery.
This system improvement may be further along than any of the other elements in this blog. That is in part because there have been peer services and supports offered in many states for three decades or more. A listing of just some of those in Oregon alone would be David Oaks’ MindFreedom International, the Mind Empowered Inc’s Community Survival Project, Folktime and Dual Diagnosis Anonymous. Readers of this blog will be able to add many more such as Hearing Voices Network and others around the US, Canada, the UK, Australia, New Zealand, and many other countries. These kinds of services and supports should be required and available and accessible to anyone who wants them.
6. Every program will provide eCPR training to assure its inclusion in all crisis service systems.
This is a perfect example of something that persons with lived experience know about and have almost uniformly supported as an alternative to the more mainstream approach represented by Mental Health First Aid. No one really understands what it’s like to be “handled,” often literally, in a crisis except those who’ve been through it themselves. The nuances are lost on many crisis workers. There have been enhancements to some emergency services by adding persons with lived experience to standard operating procedures, but far more needs to be accomplished here, and a starting place would be to ensure that at least an eCPR training or its equivalent is implemented in every community.
7. Every program will provide outreach as well as in-person crisis services with staff educated in psychiatric medication practices to minimize use and optimize for assistance in regaining sleep and lowering emotional distress.
Crisis programs are still almost exclusively offered in clinic settings or through “hotlines.” And these services often revolve around getting the person back on their medications or starting new ones in an attempt to “restore the chemical imbalance.” Much greater recognition is needed to recognize the chemical imbalance created by the psychiatric medications themselves. How many crisis workers know about “dopamine supersensitivity”? There may be a place of some use of medications to help with sleep or lowering emotional distress—even Open Dialogue uses medication in about 30% of the youth served. If the crisis results from an abrupt discontinuation or overly quick tapering off medications, a slight temporary increase could be in order. But these considerations can only be implemented when staff are far more educated than is common now.
8. Every emergency room will have staff specifically trained in skills, knowledge and attitudes that accept persons in severe emotional crisis and provide a specialized calming unit for first-line assessment and triage.
I have recently been in communication with a psychiatric nurse who specializes in working in emergency rooms all over the country. She believes that one of the things peer and other advocates may not always recognize is that in an ER, the overriding priority is patient—all patients, psychiatric and medical—and staff safety. This means that the need to keep things calm often requires more medication and even some degree of physical safety restraint when things get out of control. But these kinds of interventions would be far less common if ERs were restructured so that there was a separate unit which has a calming environment rather than the usual chaos of an ordinary ER. It would be staffed by people who are comfortable with psychotic experiences and who actually like being around people who are suicidal, angry, confused, hearing voices, or whatever. Where persons in psychiatric crises are dressed in specially colored “gowns,” this discriminatory practice should be eliminated. In addition, each community mental health program should have a Soteria House or something similar so that there are places nearby where a person can go as soon as possible rather than being sent to an acute psychiatric residential or hospital unit.
9. Every acute care unit will be funded in such a way that length of stay is increased and reliance on over-medication is drastically reduced.
One reason for over-medicating people in crisis is that most units are funded for extremely limited stays. Durations of 6-8 days on average are common so that a premium is placed on rapid “stabilization” subduing the most dramatic symptoms and discharging the patient. This change requires a careful analysis of what additional funding will be needed to allow more days to help a person regain enough stability to move back home or to a more receptive environment without over-medicating them.
10. Every community program will have an Open Dialogue or similar early psychosis intervention program to support youth and families going through a first major episode.
In the latest directory of early psychosis intervention programs in the United States there are over 100 such projects. Some are modeled after the Finnish Open Dialogue approach. An example is the Collaborative Pathway program in Framingham, Massachusetts. A new project is now in Atlanta, Georgia. Both are using psychiatric medications sparingly and very similarly to the original Western Lapland model. Other programs use a combination of psychosocial, family support and to a greater or lesser degree medication, but focus on youth and families clearly experiencing a first psychotic episode. The Oregon EAST/EASA program has seen dramatic outcomes—just one example is a young man who had been threatening to kill his father in their backyard with a shovel was working as a nurse a few years later.
11. Every community mental health program will have both an outpatient service and a facility for psychiatric medication tapering and withdrawal supports.
Programs have an obligation to support those who choose to taper and eventually withdraw and to do so safely and effectively. Many have done this without much support and it certainly is possible. However, it is sometimes a difficult and lonely process. We are still learning about what works and the current Mad in America Continuing Education webinars are focused on this topic and can be accessed here. These tapering and withdrawal centers must employ peers who have been through the process themselves.
12. Every crisis system will be reorganized to reduce reliance on involuntary treatment and eliminate forced medication.
This reform requires major shifts in social policy and reflects far more than the challenging task of reorganizing crisis services described in #7 above. There would need to be re-training of courts and ER/medical/psychiatric staff to think beyond resolving immediate crises by leveraging “cooperation” through “compliance.” Peers who have been through episodes where risk of harm to self or others were involved to work closely in a reorganized system. I believe we need to advance far beyond the often rhetorical arguments on all sides and go to work on practical solutions.
13. Every program created to respond to Olmstead-type deinstitutionalization requirements will develop a true community-integration initiative to ensure that the individuals become parts of the neighborhoods and not just live in them.
In 1994, Oregon closed a troubled 300 bed state hospital and we were very proud of doing it “the right way” by creating community programs and placements for every person able to be discharged. Those who could not be discharged were temporarily transferred to other state hospitals. Each year for about the next six or eight we created about 100 more placements so that there were 1,000 more available in what was called the Extended Care system. The best clinicians in the state were hired to work with the discharged persons and the programs to make sure they were receiving the right level of care and not just discharged for the sake of moving them to lower levels of care. Fast forward to the community created on the grounds of the closed state hospital. NAMI advocates advocated to establish five programs there. The residents of the group homes and supported housing units are rarely seen outside their homes or apartments. When they are, it’s pretty obvious because they are almost all slumped over, walking with heads down, clearly victims of metabolic syndrome. They are just as isolated as they were in their state hospital days. A reformed system would find ways to truly integrate them with outreach and educating neighbors, by initiating things like gift exchanges at holiday season, by organizing social activities at the community center and making sure that individuals are welcome. I think we have only scratched the surface on making Olmstead-type deinstitutionalization truly deinstitutional.
14. Every program will provide supported employment, education and housing to every individual who wants these services.
This is another significant need given the high unemployment rate among people with major mental health challenges. The same goes for the high rate of risk of homelessness. Many individuals had their education interrupted and never restarted because of their initial mental health crisis. These models have existed for many years and are still in operation in many communities but far from meeting the needs.
15. Every program will provide outreach to jails, juvenile correction facilities, and prisons to ensure transitions and supports including psychiatric medication information and planning to reduce them over a reasonable time.
A great outcry exists in every advocacy forum, from NAMI, to child and youth advocates, to those with lived experience, to mental health professionals—and to the prisons, youth correctional facilities and jails themselves. The reality inside is that many are being over-medicated and kept confined individually or collectively. They are isolated from their home communities, friends and service supports. Since about 90% have been shown (by Linda Teplin at Northwestern University) to also have alcohol and other drug problems, they need careful evaluation to determine first whether or not their mental health symptoms were primarily a result of their usage. It should be well-known that alcohol and street drugs can mimic any mental health disorder. For those who do have mental health problems, there should be more knowledge about the use of medications and a tapering program in each facility. Improved discharge planning would connect individuals with peer supports like DDA and other services to make successful transitions back into the community.
16. Every program will claim budget savings from reduction of psychiatric medication use and re-invest it in the services in this list as needed and guided by peer input.
The pharmaceutical corporations have lobbied successfully with state legislatures to keep the budget for psychiatric drugs untouchable. In practical terms, mental health administrators in public programs (except for maybe state hospitals) usually have little or no idea of how much these dangerous, expensive and overused drugs cost. In Oregon, we estimated that of the two-year budget of about $1 billion, the state was spending another $300,000,000 or more on psychiatric drugs in all of the programs that served people with mental health problems—outpatient, inpatient, residential. The potential savings are considerable and should be reinvested in reforming the mental health system. The fight with Big Pharma and its allies would be incredibly heated.
17. Every program will have a policy advisory body composed of at least 80% peer advocates.
How long have we been shouting “Nothing about us without us”? States like Oregon have such a board with 100% peers. That kind of advisory body would be a beginning, but there would need to be additional advocacy to get the recommendations that come out of such bodies respected and implemented.
18. Every program will have a continuing education initiative using online and other learning forums.
Most, if not all, of the changes needed to reform the system would require a carefully planned continuing education initiative like the Mad in America Continuing Education project. It is likely that this kind of continuing education resource would need to be mandated by state governments or professional credentialing organizations, although more successful services and supports could be inspiring enough that voluntary participation would be sufficient motivation.
19. All program administrators and managers will be required to read Anatomy of an Epidemic and Psychiatry Under the Influence as basic knowledge resources.
These two books have formed the foundation for rethinking the role of psychiatric medications and the enormous influence of the pharmaceutical corporations in shaping the guild interests of psychiatrists. There are many other thought leaders who should be included, like Peter Breggin and Peter Goetzsche, but Whitaker’s books are key starting places and would lead to more books, articles and research that support all of the changes needed to reform the system.
20. All funding resources will be geared toward making and sustaining these changes rather than presenting barriers.
Maybe this change should have been listed first. One of the difficulties in making reform possible is the multiplicity and complexity of funding for mental health. Medicaid is mind-boggling yet forms the basis of much public financial support. It is by definition a medical model so that it takes considerable creativity and bureaucratic flexibility to make it work for many of the items in this list. One of the gaps that exists for us in the advocacy community is a knowledge of how these kinds of administrative and budget resources work. We need to step up our knowledge as a critical ingredient in our advocacy.
My hope is that this listing of indicators isn’t just an academic exercise—it can be used as an evaluation instrument by simply assigning a number to each of the 20 indicators based on your assessment of where your community mental health system is in implementing them. Here is the scale I recommend:
0 Haven’t even thought of it
1 Starting to place it into planning documents
2 It has been approved for implementation with a date for startup
3 It has started in operation
4 It has implemented in such a way that 50% or more are gaining access to or benefiting from it
5 It is fully implemented
This scale would need to be adapted for some of the items to indicate the degree to which the change has happened.
A score anywhere near 100 will not be achieved anytime soon but whatever the number, it will provide an overall assessment of reform and will lead to both immediate and longer-term goals.
Now you can score your system and keep working toward total reform.
Update: I have created a pdf of this indicator scoring system, which you can view and download here.