Friday, November 22, 2019

Comments by Susan Musante

Showing 7 of 7 comments.

  • Ever since I learned of John Nash’s death last week I have been ranting about the distortion in the movie. I, however, did not put pen to paper. So thank you, Robert, for writing this.
    I first saw the movie as part of an evening study/support group for people who were working as peer supporters. Many of us were disturbed by the movie distortion but we certainly had a very memorable and enlightening discussion spurred on by this movie. One aspect of the movie that has nothing to do with medication but points to an essential ingredient for transformation is relationship. There is a real soul mate love story here. It was sad to lose Alicia and John Nash–I personally take some comfort that they left together. That may just be me romanticizing, but I won’t apologize for that. I do think that if we could move the system to use relationship that we would have a kinder and certainly more effective system. Another aspect has to do with the work. John Nash continued to do his work–paid, unpaid–it was who he was. And yes medication likely would have dulled that so thank goodness he just had the strength and creativity to keep doing his passion. So many others have lost hope because of the messages they have received. This conversation is so important. Again thanks for writing this.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.