Transforming the Traditional Mental Health System Through Peer Staffed Respite Programs

Yana Jacobs
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This is a brief description of the project design and some reflections on “lessons being learned” at Second Story, a Peer Run Respite service in California, funded by a SAMSHA Transformation Grant.  Peer staff are empowering each others’ lives through Intentional Peer Support.

The program is designed to accept guests who self-present. The focus is on clients of the system of care who are beginning to notice familiar signs and symptoms, that if left unattended often will end up in a full crisis, needing hospitalization.  Second Story invites people to come before they are in crisis, to take personal responsibility and prevent spiraling into a crisis, which often results in an involuntary hospitalization. This may result in losing one’s independent housing, employment and much psychic distress as a result of a crisis episode, after which one then is faced with the daunting task of rebuilding their life yet again.

Guests may stay up to 14 days. Guests accustomed to traditional mental health services first are struck by the awareness that they are “treated as adults” with an expectation that one takes personal responsibility for their needs, goals and care.  Once in the program the house is their home, a community of peer staff, people who have self identified with lived mental health experience.

Former guests often stop by to talk, and visit with current guests. Sometimes they ask to volunteer, to give back to the community by running a group, gardening, cleaning, cooking, whatever they wish to offer. They are growing their own support community.

All staff have been trained by Shery Mead, Chris Hansen and/or Beth Filson in the philosophy of  “Intentional Peer Support”, developed by Shery Mead and now recognized as a “promising evidence based practice”.  This model is a basic foundation that all peer staff have adopted. They are highly committed to staying true to IPS as a tool for listening; “being with” rather than “fixing” someone.  By creating a safe place, guests have an opportunity to work through their own challenges, patterns and issues. The Peer Staff continue to practice IPS among themselves using a “co-reflection” model created for supervision by Shery Mead.

What do I witness, notice and observe? I see people engaged in intense conversations, cooking and cleaning. Often people just come and spend lots of time sleeping.  Spontaneous music jams, board games around the kitchen table, or just watching TV. Taking walks, going on outings to museums and lectures, going to the doctor or for hikes in the mountains or along the ocean.

Some people maintain their job while returning to the house for support and community in the evening. Some go to school.  Normal life schedules outside of the house are supported and maintained if the guest so chooses.  Guests are free to come and go as they please, just letting someone know where they’re going and when they will return.  This may sound “normal”, and it IS, it’s not a program full of mental health formulaic groups and a mandatory schedule of activities that you are required to attend… but instead a place to “be with”, a  space to have support.

Some examples:

I’ve known clients who have been in the traditional system for 10 to 30 years. They are well known to the system, some have been labeled “Borderline Personality Disorder“ whose pattern when stressed and experiencing intense emotions has always been to cut on themselves or inflict some bodily pain, and go to the locked psychiatric hospital (as it’s “safe”). Now many of these same individuals are choosing to utilize 2nd Story, and after several admissions the old patterns begin to shift; most of these same individuals are no longer going to the hospital but instead coming to the house for a few days or weeks to get the needed support and engage in honest peer to peer dialogue.

People choose 2nd Story as it’s an opportunity to do life in a different way.  Disruption of their housing, employment or schooling is minimized when they come to 2nd Story.  People are transforming themselves, feeling empowered, blossoming and feeling their strength, shedding the stigmatizing labels and feeling okay to be who they are.

At a recent staff meeting I asked the staff if they felt comfortable broadening the criteria a bit to be able to work with people who may be freshly out of the hospital or a sub-acute setting. I suggested we focus on young people who may have just had a “first break,” were still in a vulnerable and fragile state (not acute) post hospitalization, and may be stabilizing on psychiatric medications for their first time.  Everyone was excited and open to this.

A few days ago I learned of a young man, 24 years old, whose family had taken him to the hospital. They had been struggling to stay with their son and keep him safe.  From the reports it sounded like he was in an extreme psychic distress, with auditory and visual hallucinations, and not able to sleep. This extreme state was scaring his family members. They felt helpless to do anything more but to take him to the psychiatric hospital. As they left him admitted to the hospital they told the hospital staff that he couldn’t return home (they were too scared) and felt he needed to go to a board and care.  When I heard about this young man, he had already been in the hospital for 2 weeks, had been “stepped down” to a sub acute crisis facility and was en-route to yet another sub-acute facility  where he could stay while the treatment staff  worked with him to get on various waiting lists for housing.

I felt compelled to see if we could intervene by extending an invitation to him to come to Second Story before he moved into the next phase of sub-acute treatment. I didn’t want him to be further exposed to the life of the traditional adult mental patient. I feared it would seem hopeless and, as so often happens with young people, despair would begin to set in as he learned to accept his diagnosis.  I was curious to see if he might move through this transition time from psychosis to finding insight from his experience and hopefully be able to get back on his life track; whatever his wishes and dreams might be.

I stopped by the house this evening to meet this young man. He had been at Second Story for only two days.  He was doing well; happy, beaming, having just returned from the ocean where he had walked with another staff member. He’s very busy reflecting, putting the pieces together, wanting to learn what this  experience was all about, trying to find meaning. He was having great insight into Mozart’s insanity by listening to his music, as well as Bach’s fugue.

It was wonderful to be with him as he was telling his story – while striving to make sense of it all.  He shared with me that while in the hospital he was given three different anti-psychotic medications which he was continuing to take on his own at the house. (Medications are not held and managed by peer staff, but rather guests who take medications must be able to self administer, and are provided a key to a bedside stand for storage while staying at the house.) He was finding relief, his mind was clearing and he was finally able to sleep.

He was grateful to be able to think clearly again as he had been extremely overwhelmed with voices, feeling scared, and not feeling “normal” for quite some time. He is now in a place where he can openly talk about what he was experiencing, and the peer staff understand. They can totally relate and as we sat and talked other staff members would share their stories of demons and voices and how they learned to live with this, how they feel special, and have at other times unraveled but the power of having a support system of family and friends who understand them has enabled them to live life to its fullest.

Some staff shared medication stories, some spoke of how they took extra good care of themselves with diet and exercise. Some said years later they worked with their psychiatrist to reduce their medications. Everyone had a different story and a different path, yet they all were respectful and supportive without judging or “advising.” The young man thanked me for paving the way for him to come to Second Story, he is clearly thriving and benefiting from this milieu.

I left feeling so happy that this new model of support is alive and having such a positive impact in our community.   I was able to witness the discovery of oneself through relationships with others. Once again, that old familiar “Soteria” like feeling warmed me as I felt the human connections. This is where the healing takes place. With or without medications, all are accepted – to be who they are.

After 30 plus years working “in the system” I have learned that we just don’t know…

We don’t know what causes these extreme states. Often, if we ask the right questions or listen carefully we learn that it’s triggered by trauma, or mind altering drugs from marijuana to hallucinogens, or sometimes it’s the developmental  transition into adulthood, which for many is easy and for others it’s not so easy. Researchers have yet to pin-point a brain related illness (often referred to as a chemical imbalance). We just don’t know.

We don’t know why these drugs provide relief to some yet not to everyone, why the medications work for a while and then stop…

I do know we must stay open, not rush to labels and diagnoses, but find a way to “be with” the person who is having a hard time, offer comfort, human compassion, listen and allow time to rest; whatever it takes. Medication can help with sleep and calming down after an extended extreme state; it’s another tool that can be helpful, even though no one really knows why. I say this cautiously as we do know that the long term effects of life on psychiatric medications will cause serious metabolic problems and major health risks.  We must allow time, provide human caring support, allow extended rest, and safe environments while the mysterious process works itself through…

 

Note: An independent Evaluator, HSRI, has been contracted as part of this grant. Results will be available in 2015

10 COMMENTS

  1. Yana,

    It sounds like a great place to heal.

    I appreciate your honesty in reference to “what we don’t know.”

    Hope.
    IMO, we don’t need to “know” much, but need to offer people hope.
    And it sounds like that’s what’s taking place at Second Story.

    Keep up the great work!

    Duane
    discoverandrecover.wordpress.com

  2. Hi Yana,
    It is really wonderful to see you here as a fellow blogger my friend! Your decades of Soteria informed experience shines brightly in the Second Story house.

    When I visited there it felt so right that the all peer staff had created such a receptive, caring and helpful place for people to go be supported, as they to attend to themeselves, as a possible crisis or hospitalization was averted.

    These kinds of peer respite houses should be an integral part of every mental health system in the country.

    Congratulations again on your leadership that made Second Story happen, and daily helps bring the open hearted respite environment to your community for those in need.

  3. I have heard several differing opinions about this facility, and in fact I am on my way to Santa Cruz this very morning to find out more. I am curious about the “thirty years working in the system” that the author refers to.

    I will write more very shortly. One thing I do have to say though is that the word “peers” really bothers me. I suppose it is supposed to convey equality, but in a place run by standard mental “health” professionals, the word “peer” is very Orwellian, quite literally. In a situation like that, everyone is equal, but some are more equal than others.

    Amazing this piece shows up on MIA just at this time for me. I suspect Santa Cruz County Mental Health may be a place to watch, for better or worse.

  4. Dear Folks,

    Until August, I used to work at Second Story. I left to be Executive Director of MHCAN, Mental Health Client Action Network, our Peer Run mental health community center of Santa Cruz.

    There are many wonderful people who work, reside and volunteer at the Respite House. I think the article Yana wrote is accurate, although it is only a part of a bigger picture. There are many wonderful changes that people have chosen to make in part based on their experiences with the Respite House. I am very glad the Respite House exists.

    Yet, if you read Sandra Bloom’s 2010 article, Organizational Stress as a Barrier to Trauma-Informed Service Delivery. Becker, M. and Levin, B. A Public Health Perspective of Women’s Mental Health, New York: Springer (pp.295-311) I think that neatly encapsulates the problems which may be associated with a peer staffed environment and in my experience happened there. I do think that with collaboration, choice, safety, trust and empowerment that many of those negatives can be avoided. The Respite House is staffed with many individuals who are very strong in those areas.

    MHCAN would love to be the umbrella for The Respite House in the future, from our Board of Directors, our peer staff including myself and MHCAN peers. Currently it is umbrella-ed by SCCCC, Santa Cruz Community Counseling Center, which is not peer run, but a mainstay of Santa Cruz mental health. The Respite House began with a meeting at MHCAN, available on Youtube, http://www.youtube.com/watch?v=wbSHO14575k . MHCAN absolutely supports The Respite House and Trauma Informed Care values. From the peer originators of the idea for the grant, Delphine Brody and Ginny Gomez, to Yana Jacobs who laboriously wrote and pursued it with the best interests of the peer community in her heart and mind, the ongoing story of the Respite House is one we all believe in.

    Sincerely,

    Sarah Leonard
    Executive Director, MHCAN
    1051 Cayuga, SC, CA 95062

    • Thanks for sharing the link to the concept meeting video. There was high energy and hope that day!

      At the link below is as much detail as I could gather about how we happened to apply to SAMHSA.

      https://sites.google.com/site/samhsamhtgsantacruz/

      My own interest was in blocking the construction of a new locked facility. But our county is still building a locked facility, to open by 2014, 13 million dollars so far, a key feature 360 degree surveillance, our panopticon ­ to observe, normalize, discipline …

      I think our challenge is how to influence the use of the new lock up, and how to make earlier and other supports more sturdy.

  5. I appreciate the efforts and hard work that I know has gone into all of this. However, I worry, too. I worry that the language of ‘client’ is still so pervasive here and represents the language of a system and of a people whose identities have been moved in that way. I echo Ted’s worry about the use of the word ‘peer,’ as it has come to be bandied about by the system (and honestly, by many who see themselves as ‘peers’ as well). Peer is not just some label that means ‘people with psychiatric diagnoses’ who hang out with others with the same label. We all, in fact, have multiple ‘peer’ groups and I wish the word were used in a more genuine way in this world.

    I further worry about the sentiment expressed on the front page of Second Story’s website and echoed loudly here that this is not a place for people ‘in crisis’ or as a real alternative for psychiatric hospitalization. Why not? Isn’t that the whole point? Limiting to people who know in advance that things are going down hill, or who have filled out some sort of proactive interview is… well, extremely limiting and doesn’t speak to so much of the actual problem with the system and people’s experiences in it.

    Finally, I worry about the message regarding medications. When I read about the author’s urging to accept people having first experiences who may be ‘stabilizing on medications for the first time,’ my heart sunk a little. It’s written as if that’s the expectation and the norm. While that may be true, it’s not what I’d hope that a ‘Peer Respite’ would talk about as the norm in such an accepting and matter-of-fact way. I felt further saddened when I read of the young man who used Second Story essentially as a ‘step down’ to a ‘step down’ from a hospital and heard that he’d been put on THREE medications while in the hospital. Again, this came across in such a ‘this is the norm,’ this is ‘okay,’ accepting sort of way. I’m glad he felt better and that Second Story worked for him in that context. And yet there is so much here that says to me, “NOT different enough…” “NOT helping people get out of and beyond the system… just making the ride a little more comfortable.”

    I also see the last few paragraphs which are much more in line with what I would have hoped to read earlier in this piece. But I have to admit that they seem like they were tacked on, and not truly representative of the author’s views. There is much that is inconsistent between them and those earlier references, as if writing that at the end makes the other okay.

    I am going to visit Second Story today and will keep an open mind, but I worry not only about what I’m picking up on from this article before I arrive but about what so many around the country are picking up on by reading this and not being able to visit and talk this through. Most of all, I worry about the people who are already very traditionally minded and how some of the elements here may serve to further solidify their beliefs in that direction. There are so few peer respites and other alternatives in the country. Our voices need to be clearer and stronger for something different.