Susan’s Thoughts
Soteria-Alaska, a program modeled after the highly effective Soteria developed in the 1970s by the late Loren Mosher, M.D., opened its doors in 2009. I had the privilege of being part of the team who developed Soteria-Alaska and was its first executive director. I was there for almost 8 years and during that time we grew from an idea—really a passion–to a viable home for people who were experiencing personal states usually associated with schizophrenia spectrum diagnoses.
For the benefit of those who do not know about the Soteria approach, I will give a brief description. In these few words it is difficult to convey the complexities of Soteria. It is also impossible to convey the actual simplicity, which in fact, is the crowning jewel of the Soteria approach. In providing this description I will use some terms that reflect disease framework language such as ‘treatment’ and ‘psychosis’ that were used at the time of the original Soteria House and are still used today. These are not words I prefer to use without explaining them. Nor are they words that we, at Soteria-Alaska would think are particularly helpful to people participating in this approach. They are useful, however, so that those reading this who are not familiar with the language of Soteria and other non-disease approaches can better understand.
The Soteria of the 1970’s was an experiment to see if people with a first or second episode of ‘psychosis’ could become ‘well’—‘respond positively’ if they were ‘treated’ in a homelike environment without antipsychotic medication. To answer the question, people were randomly assigned either to the Soteria House or to the hospital. People assigned to Soteria House lived together in a community where they shared chores, meals, conversations, etc. They were not prescribed antipsychotic medication as the primary treatment, although in some instances other medications such as over the counter Benadryl and prescribed benzodiazepines were used on a temporary basis to help them relax and sleep.
The primary approach was relational and was described at the time as ‘being with.’ ‘Being with’ according to Loren Mosher is the opposite of ‘doing to.’1 The sometimes extreme experiences or unusual, nonviolent behaviors of the people who lived at Soteria were not only tolerated but they were embraced. People were encouraged to live the experience and make meaning of it for themselves. The people assigned to the hospital were treated in the usual fashion of the time which included what was commonly called ‘hospital milieu’ and antipsychotic medication. The primary treatment was the use of antipsychotic medications and the goal was to encapsulate the symptoms—make them go away as much as possible so that people could ‘manage’ or ‘stabilize.’
In the short run (6 weeks), there were similar outcomes between the two groups. In longer term assessments (six months and beyond), the Soteria group demonstrated higher ‘recovery’ outcomes in work, social roles and long term use of medication. The Soteria approach was not only more effective. It cost less.2 Another review of the effectiveness of the Soteria approach revealed that it is at least as effective as traditional hospital-based treatment without the use of antipsychotic medication as the primary treatment and may be the preferred approach by people who are in crisis states.3 Considering that people treated in the conventional way die on average 25 years younger than the general population, this review is a substantial finding.4
Soteria-Alaska had similar experiences, although there is not yet enough data or a research design with an experimental control. An independent program evaluation found that Soteria-Alaska was close to the original model on many domains. Follow up review of residents found that they did not use antipsychotic medication or greatly reduced their use of antipsychotics while there and after graduation. They had higher scores on global assessment of functioning and improved living, school and employment outcomes. Again, at the time of this review the numbers were small and there was not a control group. However, the trend and the outcomes were very promising.5,6
The Soteria approach is simple in that people are treated with respect and their nonviolent, unusual or extreme behaviors which may not be understood by others are embraced in an attempt to help them make meaning of the experience. People are allowed the space to work through their mental/emotional/spiritual state. The helpers are there to guide and witness the experience and to keep them safe. The Soteria approach is complex in that it is challenging to describe ‘being with’ and to understand how specifically this approach works. We do know that it does work, however, for some people. It is clear, anecdotally, that not only the identified participants in this approach experience healing, growth and transformation, but so do some of the helpers. I am writing this paper as a way of introducing a resignation letter from an employee of Soteria-Alaska that hopefully will give readers a better understanding of Soteria and its effects not only on residents, but on people who work there. Before I go forward with the letter I have some words upon my own leaving of Soteria-Alaska.
Many have asked how it is I came to be in Alaska and be a part of Soteria. This is a brief version of my story: I graduated from college and was somewhat lost as to where I would go from there—not unlike many of the people of my generation and age. The only job I was able to secure was as a psychiatric aide at Fairfield Hills Hospital, a state run psychiatric institution in Newtown, Connecticut. At the time I realized that I easily could be one of the people without the keys if my life circumstances were just a bit different. I met many awesome people who were committed to that institution.
There are several young women who stand out in my memory. I do not know where these women are or what they have done with their lives. I do know that they were not provided an environment that was conducive to healing. In fact, they were traumatized and brutally treated at times by being in the institution. The traumatizing events included verbal disrespect/abuse, forced and over-use of medication, institutional setting, and in some instances, electro convulsive therapy (ECT)—shock treatments. I cried for these young women and was angry at some of staff who were more institutionalized than the people who were committed there.
Please do not get me wrong, there were many compassionate staff as well, however, they were incapable of making any substantive changes to the institution as they, too, were disempowered. I left that setting as soon as I was able to obtain another job (about one and a half years), so that I would not become callous and institutionalized as I observed in some of the ‘lifer’ employees.
During the time I was at Fairfield Hills Hospital, I knew nothing of the Soteria House in California that was providing a more compassionate form of ‘treatment.’ I did promise myself that if I ever had the opportunity to do something different that I would do it. It was a commitment I almost had forgotten when I received an email 30 years later calling for an executive director for Soteria-Alaska. I did not respond.
The next day I received another similar email from a different person and did not respond. A day later the third email came through. At that point I decided the fates were calling me and while I had no interest in being in Alaska, I responded, was offered the position and have been there ever since. (By the way I have grown to love Alaska and the people who live here.)
I lived, breathed, and dreamed Soteria for eight years of my life. It was never my intention to stay that long, but it was what was necessary to insure the Soteria-Alaska longevity. I felt very keenly that there were many people worldwide looking to us to bring back the Soteria approach. Well, it is not 1970 anymore — and the disease model funding is very challenging — but I think we kept the most important ingredients of Soteria and succeeded in opening a viable Soteria approach program. I am very hopeful knowing that there is a Soteria-Vermont in the making, a group in England promoting a Soteria approach and folks in California and Oregon looking to develop a Soteria approach. I am closely watching the development of Open Dialogue in the US and hope that we can figure out a way to marry the two approaches and incorporate them into our standard of care.
Upon leaving Soteria-Alaska this year, I find myself grieving the loss of the Soteria community. I do not miss the stress of trying to balance the budget or the stress of administering a healing program in a disease driven health care system. I do not miss the stress of the non-profit world which includes working with boards who are voluntary and are often passionate, but may not be sophisticated in the approach, and that spend much time grappling with their roles and shared vision. I do not miss the phone calls in the middle of the night from helpers or residents looking for guidance in a particular situation. (Well, sometimes I do miss that). I do, however, miss the community of people who were my transient family during those eight years.
The letter below, written by Matthew Ladner, an employee of Soteria, is much more eloquent on the topic of the effects of this community on its residents and helpers than my own words convey.
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References:
1. Mosher, L, Guidelines for Treatment of Psychosis, Spiritual Recovery Blog Site
2. Bola, J, Mosher L, Treatment of Acute Psychosis Without Neuroleptics: Two-Year Outcomes From the Soteria Project, JNervMentDis191:219–229,2003
3. Calton, T, et.al. , A Systematic Review of the Soteria Paradigm for the Treatment of People Diagnosed With Schizophrenia, Schizophr Bull. Jan 2008; 34(1): 181–192.
4. Parks, J, et. al. Morbidity and Mortality in People with Mental Illness, National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council, October, 2006
5. Saylor, B and Saylor, A, Soteria-Alaska Interim Program Review, May 2010
6. Musante, S, Soteria-Alaska Presentation to the Trust, May 2011
Susan, I would love to know more about the follow-up data, even with all its limitations, regarding antipsychotic use and outcomes. Can you share that with MIA?
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Robert, thanks for the question. Again I offer my disclaimer that numbers are small, but a combination of fidelity review, anecdotes–personal stories–and a review of some outcome domains support very positive results using the Soteria approach in Alaska. The fidelity review conducted by Brian Saylor, Ph.D, MPH and Amanda Saylor, BA came to the following conclusions:
* the Alaska Soteria House mirrored the practice of the original California Soteria and Emanon houses.
* the demographic characteristics of residents mirrored those of residents of the original model.
* the clinical characteristics of Soteria-Alaska residents were different–Alaska Soteria residents had much more experience with institutional psychiatric involvement and use of antipsychotic and other psychotropic medications.
* Residents and staff gave the Alaska program high marks with regard to trust among staff and residents
* Residents and staff reported positive “clinical” gains–subtle and dramatic.
The second phase of the review was conducted to try to describe outcomes using more conventional methods that medical/disease frameworks utilize. Whether these are really the best or even valid measures is certainly debatable but we wanted to have some crossover information and translate what we knew to be true into that language. This phase was also conducted by Brian Saylor, Ph.D. and Amanda Saylor, BA. These were some of their findings:
* using the GAF to assess severity of condition–75% of residents had improvement (one resident from 35 to 65).
* Clinical Status–60% decrease in total medication amount, 56% decrease in number of people using medications, 88% decrease in hospitalizations.
* Independent living–3 people were employed while at Soteria-Alaska, 2 obtained drivers licenses, 2 involved in GED preparation, 5 moved from homelessness or assisted living to independent living.
I could write a whole article about this topic using stories which sometimes are the best evidence, but I hope I answered your question here.
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By the way… I think that Matt can give quality to the data with real life stories. Chime in Matt.
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I was in a very similar place in Vancouver, the Vancouver Emotional Emergency Center, at a crisis in my life, and I think it might have saved my life. I of course had more sense than to sign myself into a psych ward, but I was emotionally paralyzed at a time when I needed to move on.
Places like VEEC and Soteria are badly needed. But we have to fight politically for them, because the system in place now does all it can to prevent them from being funded or even allowed to exist.
Alternatives and fighting the existing system have to go together. We see that now in Western Massachusetts, where people are losing their funding for a “peer run” service center. Without political power, which we MUST develop, very few good programs will be allowed to exist.
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You know, Ted, I am always in a quandary on how to transform the system. It seems to me that everyone is asking for evidence and outcomes, etc., but when it comes right down to it, the complexities of how to answer the questions escape most of the us and the answers are shaped by the context and frameworks within which we work. This speaks to the Soteria concept of contextual thinking. In the context of spiritual/human transformation Soteria and similar approaches work–hands down. In the context of funding/disease. Take a pill— it is not recognized or understood. I have a colleague who developed peer/consumer run services including peer run respites who said to me–we cannot fix the Medicaid system–at this point it must fail/collapse and then we can start from scratch–the patches are not holding anymore. I think we all need to keep telling the stories and maybe we can have a story telling project that will have so many stories that it cannot be refuted.
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Susan and Matt — this is a beautiful piece. Susan, I am forever grateful for the opportunity you gave me to be a part of the Soteria-Alaska family, and Matt — it was wonderful to work with you. Thank you both.
Daniel
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Daniel. Nice to hear from you on this. In the spirit of what I think is a Soteria approach–We all contributed to Soteria-Alaska becoming. But really the people who live there and the people who work there overnight and during the day make that community a transforming community. That being said you and I both know it is an ongoing challenge to keep it funded, viable and really do the work… Thank you.
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Thank you Susan. It was an honor to meet you at the ISPS conference and I look forward to consulting with you in the near future about the possibility of founding a Soteria Oregon and a Soteria Washington! I know that the Soteria Alaska experienced challenges not experienced by the original Soteria yet, as a community you met these challenges head on with amazing dedication and skill! Thank you everyone in the Soteria Alaska community! You are like a brave candle in the dark.
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Wow I get nervous with candle in the dark. Really I am practical and also honest about why I am interested in supporting this stuff (and by stuff I mean Soteria approaches, open dialogue, consumer run support services, employment…)
Mostly, I remember three women whom I met in a state hospital. I had the keys and they did not. I am sure that easily those roles could have been reversed given different circumstances. I was the lucky one–or was I?
There was Gina (not real name of course). Vibrant, outlandish, creative and gorgeous–not sure why she was there except that she had no real home and probably was just a little too outlandish.
Donna (not real name of course). Religious family, tomboyish, headstrong… ran away from home likely physically abuse (not confirmed).
Mary (not real name of course). Strong catholic, political family, sexually active. Possibly abused sexually (not confirmed).
All were either what most would call “psychotic” or “manic”, or “oppositional defiant”. They were treated with too much medication, punishment called behavioral therapy by the the doctor and ECT (shock treatment). They came in with personality. They left flat. They came back “real”. Because they were strong they kept coming back–fighting their environment and the system. I don’t know where they are now but I know at least one of them made a life and a family in spite of what happened to her. I wish I could have offered them a Soteria or an Open Dialogue or Peer Respite.
I also have a heart for families. It is so hard to do nothing and sometimes that is what is to be done. And yet it is important to make known your presence and passion to the treating practitioners and system. You care. You are watching. You are witnesses. You are really very powerful change agents. I honor you and all of the families and I hope we can build some Soteria approach–beyond Soteria approaches.
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Thank you Susan and Matt you and whose involved in Sotera and Soteria like approaches make the heart of a 68 year old survivor soar like the eagle . I did not know of any of them in my 40 year long escape from the psychogulog. Only heard in those years of Esalon from ads on expensive seminars somewhere in the redwoods with the disclaimer they didn’t want people with mental histories.
As far as beyond Soteria I’d say marry it with energy healing, like http://www.YuenMethod.com , Traditional Naturopathy , Homeopathy, Supplement Hoffer Orthomolecular , Organic Food , Mineral Bath and niacin , Bach Flower Remedies , Exercise , Meditation , Yoga , and Tai Chi, Herbal Formulas .By choice of course. Maybe Churches could provide space for more Sotera like help.
Maybe a Universal distributed pamphlet on how to do Soteria^philosophy stuff at home or on the road or on a wilderness trek. Anything to avoid the psychgulog.( Matt you’ll enjoy reading the book “Sick And Tired’ by Robert Young. ) Thanks again, Fred
Remember when China had “barefoot doctors” what about barefoot Soteria volunteers so to speak. I know poverty and funding are problems. Take Care
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Your thoughts are well taken, Fred. I think there are people–in fact I know there are people “being with’ and doing what I call “Soteria without walls”. Sometimes in a house or home or apartments… sometimes just being available to people–seriously it is happening but it is sort of underground. There is something about the community of living, however, that is guts of it for some people. Absolutely there is benefit in certain food and exercise and mindfulness. None of these prescribed of course. Just what people find for themselves, but lets put it out there so they know about it. Again thanks for your thoughts.
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I’d prefer the Earth House, in New Jersey, if I needed to convalesce.
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You consider recovery “long term use of medication??”
How could you just drop that in there with no explanation?
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Hi AmityGreen,
That phrase comes from:
“In longer term assessments (six months and beyond), the Soteria group demonstrated higher ‘recovery’ outcomes in work, social roles and long term use of medication.”
I read it as the higher recovery outcome in terms of long term use of meds was that there were fewer Soteria graduates using meds long term than folks through the dominant system. That higher recovery meant lower long term use of meds.
Susan, might you want to clarify?
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