Developing and Implementing Radical Peer Support in Specialized Early Psychosis Programs

my name is Sascha Dubrow NAV jealous and the two of us we actually we've been we've been collaborating together but we actually just met for the first time two days ago and this is our excuse to this is like this is us getting to know each other leading this workshop so real quick just so that we were all clear about some things so both Nev and I work in the mental health system and we share in common the belief that the mental health system is incredibly screwed up like it's about like it's full of problems and and so what we're gonna do the reason that we're using this language of radical to talk about the work that we're doing is that we're basically saying if if we actually want to make changes in the system we have to dig deep and and and look at how we can look at how we can go about making changes like fundamental changes and what we're doing like in this next hours we're going to talk about the peer specialist role because we both we both do work around the the peer role just to just to get a sense in the room how many people here in the room are actually work in peer roles show hands so a bunch of people and then how many people in the room work in first episode psychosis programs yeah a bunch of people okay so that here's the deal like so really what we're gonna do we're gonna try and talk as little as possible we're gonna try we're gonna we're gonna do our talking because really like this is this op this great opportunity to be in a room full of people and then we want to have a discussion and so just so you have a sense of what we're gonna try and accomplish in a very short period of time is we're gonna talk about our own histories and like how we ended up doing the work that we're doing and then nevas going to break down the landscape of early intervention services and in North America and then we're going to talk about this idea of disruptive innovation and system evolution and and then you know we'll see where it goes from there so oh it's me up first okay all right so I work at a place called on-track New York in New York City which is a first episode psychosis program and I get to train all the peer specialists for four on track New York but before that before like before I did that me and my friends started this organization called the Icarus project that I'm wondering how many people have heard of the Icarus project Wow all right well that makes me feel good so so 15 years ago we started this organization that was like ended up start off as a website and it developed into a network of peer based mental health support groups and the the vision of the group was basically you know we were started by people who had been diagnosed with serious mental illnesses but rather than seeing ourselves as diseased and disordered we saw ourselves as having dangerous gifts like having wings like the boy Icarus so that was our like metaphor and over a short period of time we ended up becoming this like magnet for really interesting people because you know we ended up drawing a lot of really brilliant kind of crazy people together and we wrote this book navigating the space between brilliance and madness and then shortly after that we wrote this book called friends make the best medicine a guide to creating community mental health support networks and it was it was basically a guide for people to start local peer support groups and then people did that all over the place and so all this time later I work in the psychiatric system but that is my foundation that is where I come from like when we talk about peer work the peer work that I think about is based in a social movement that's outside the mental health system so that's that's you know son I pass it than that okay that was very fast Sasha um so I'm going to talk a little bit about you know um my work of the hearing voices movement but I'll give a little bit of kind of personal background and and kind of history so so I went through one of the earliest two specialized first episode psychosis programs in the country in Chicago about a decade ago over a decade ago maybe now and you know I I think I sort of iced I saw in those moments the potential for early intervention the sort of potential for what could be accomplished for how that could redirect people's trajectories and I also sort of experienced things about it that were definitely not not doing what what we would ideally be doing especially from a more sort of transformative visionary perspective of what that could look like what those initial encounters with the system could look like and specifically some of that was all of my experiences were sort of constrained around these ideas of you know there's something wrong with you that you're experiencing all of this distress all of these problems and almost all conversations and once you get sort of into the system and you're in these intensive services you know most of whom you're interacting with now our clinicians or folks associated with these programs and almost all of those conversations really being about the problems you're experiencing and whether it's cognitive behavioral therapy which was the modality in my program or whether it was medication management all of it became about the sort of the distress the pathology how is this you know person now who was embroiled in these problems that had to be worked through and many many many many aspects of my experience that to me were incredibly salient I'm first of all just coming to grips with these pretty profound transformations of you know perception and sensation and how he was moving through the world and the difference between my mind and other people's minds and not being able to distinguish between what was a thought and what was somebody else talking what was me talking what with my own thoughts could people hear all of that you know radical changes and changes that kind of cut to the core of who you are as an individual and so all of that so much of that that was not what we discussed in sessions that was not what my psychiatrist was interested in right so so I you know I found out about the hearing voices move you know probably after two or three or four years of more kind of conventional psychiatric treatment and and to me what were really appealed to me is that it was creating spaces to really sort of explore and engage with these experiences in all their richness and depth and really explore the impacts on one's identity and who one is in a fundamental way and how one would move through the world and political dimensions of these experiences and I guess they just really want to emphasize that that is that's very very different to the sort of the implicit tacit framing of these experiences in conventional mental health services early intervention included so I first in Chicago founded Chicago hearing voices that was when I was a grad student that's when I had the most time to really do a lot of facilitation work and then moved to San Francisco and worked with the beer hearing voices network we have Deena and Stella here who are awesome how many of you just to ask a really quick question actually have local hearing voices groups that you work with are involved with awesome cool cool so you know so I think similar to Sasha right coming from this perspective of there's so much to this experience there's there's so much that you need to work through as a young person as a young adult experiencing it so much there to sort of really recover to more deeply heal in terms of identity and who you are and and and I think the key question is how do we bring that to this early intervention space and I guess I'll just go in here to a little bit of history and context so this is a map just so you all know what you're seeing of early intervention programs spread out across the United States huge huge number of these programs now I'm just 10 years ago I think there were maybe four or five in the United States so it's it's really kind of phenomenal growth this is an opportunity right this is an opportunity to really kind of influence a space that is reaching an increasingly huge proportion you know young people experiencing a first episode of psychosis so there's huge opportunity here now I want to give you a little bit of context because in the United States a lot of the first clinics that sprang up issa is an exception but a lot of the a lot of the initial clinics these were academic clinics run by actually sort of neuroimaging folks who needed an anti-psychotic naive population to study so they wanted to be able to capture this population and the best way to do it is to create a problem that is really kind of a program that is really specialized to serve the first episode group so the program I was in for example was you know simultaneous to entering that you were you know went through a period of you know anti-psychotic free neuroimaging and cognitive testing and so forth so there's this very strong sort of medical model influence on early intervention in the u.s. and as I think these programs really expand out into the community that has started to sort of fade and recede somewhat and then on track where Sasha works is just an example of a place where really amazing things are happening I think in part because the program as a whole in the leadership as a whole have really kind of embraced adaptation on the ground and innovation and not getting stuck in a sort of the very conventional way of thinking about evidence-based practices and we implement them to fidelity and we do not change and we do not try new things so that really kind of embracing a different way of thinking about things deepening complicating you know understanding how messy it all really is anything I'm wondering if there's anything else any any anything else that you guys want to you know ask really quickly about early intervention before we kind of move on sounds like a lot of you are involved so I'm just not sure if there's any more you know kind of context that might be helpful we're starting to see peer support pop up almost everywhere again maybe like five years ago when I was talking to programs very few had a peer support component now it's almost ubiquitous that does not mean that there are good supports in place or that the role the role of the peer specialist or of peer support in these programs is what you know people like Sasha and I and I'm sure many of you in this room would like it to be and so I think part of the motivation behind this presentation right is okay how do we you know how do we take this new intervention area and how do we make what peer support folks are doing in this space matter how can that be leveraged to actually affect sort of a transformative vision of what things could be like instead of just being sort of a cog in the wheel of the status quo and as we know there's this incredible inertia and kind of constant regression back to the mean how do we push things outside of that so that's our motivation I'm really enjoying being up on the stage with you know you think we spend a whole bunch of time like writing emails so if I could forth that's really it's yeah I mean I think that one of the things to understand so the next few slides that you're gonna see I've come to realize actually it's just like it's my it's like my internal coping mechanism for being able to work at the New York State Psychiatric Institute I mean it's like how how how I have to frame what I'm doing because one of the things to understand like Nev is alluding to or actually just saying pretty directly is you know the these programs that that exist they're problematic there's there's a lot of there's a lot of issues with them the funding that pays for my salary came from legislation that was passed after the Sandy Hook massacre in New Jersey you know so so there's a frame that's like what do we do with the what do we do with the crazy people we we get them young so alright so here's my here's my coping strategy just out of curiosity how many people how many people have ever grown a garden raise your hand oh I love this when I do this in New York it's like knowing no and so I have this like internal internal set of metaphors that I use for thinking about the stuff that we're doing and so when we talk about the trying to in shift the landscape you know one way to think about it is you know we have there's this there's this way of thinking about ecological succession there's this way of thinking about you know if you cut down the trees in the forest the first things that comes back are called the pioneer species and then the pioneer species then pave the way for the next layer of succession and and and you know what what we end up with is like a healthy healthy ecosystem and I and I think and just so you know so like that's dandelion over there that's fire weed and those that's blackberry they're all examples of a pioneer species they're like things that things that come in to try and to try and heal the land so curious are people familiar with permaculture permaculture is a philosophy so permaculture as a philosophy is this idea that you can take things you can look at the way things happen in nature and then mate develop human systems based on those things and and so if you want to try and make change it's often good to look at how things happen in nature and so for the next couple minutes we're gonna we're gonna go through a little history lesson we're going to talk about the consumer-survivor ex-patient movement and maybe maybe someone out there in the audience is wondering why there's a photograph of Martin Luther King and Malcolm X under the consumer-survivor expansion movement and it's because for me I think it's a CSX movement was a really great example of a movement that were that was made up of reformers and radicals that figured out how to work together to make changes in the system and that's like if we look today like starting in the 1970s there was like you know shifts that were being tried to make in the mental health system and there's a bunch of shifts that have been made now the shifts look a little different that you know depending on your perspective I'm now going to show this is this is this is a where I live in New York if you go to the peer specialist website this is the this is this is the this is the the way that there this is a way that they're branding the peer specialists in New York State yeah so for those of you who don't know there's peer specialists in in North America they're peer specialists in 38 states who are Medicaid reimbursable and there's more than 25,000 people who were working in peer specialist roles and that's happened in a very short period of time you know in the early 2000s there was a you know the the Center for Medicaid Services declared that peer specialists were an evidence-based practice and so there's been this there's been this real change and so if you wanna the I label this the consumer movement just in many ways the language of psychiatric rehabilitation and the the language of the consumer movement is a reformist movement it's a movement that you know that's not wanting to change the mental health system too much but wanting to make reforms within it and I think it's important when we think about the peer specialist role like in 2017 today that we look at some of the other roots of the peer specialist movement and that you know at the same time that there was like a consumer movement there were also other people who had some different visions about what what what it might look like to have to have peer like people who had been diagnosed with mental illnesses working in the mental health system and so I'm gonna move forward now and and just like briefly discuss okay so so check it out so I get hired at on track New York and they're like we want you to we want you to run the peer specialist role and you know I have this like cred because I started the Icarus project and I've been around and they hand this they hand me this manual and they're like just look this over and see if there's any changes you want to make to it and then and then we can we can you know you can start training the peers we're starting to hire them on the teams they're coming on and I looked through the manual it was horrible it was like it was like it was all written in this what I didn't I didn't have the language to talk about it at the time but it was psychiatric rehabilitation language it was language where there wasn't a really clear delineation of what it meant to be a peer and what it meant to be a clinician and there was like some stuff that was like well the peer discloses their mental health recovery story you know but there was no power like the peers just like didn't have any power in it and so you know basically what I did because I'm not very good at doing things by myself I find other smart people and I rewrote the manual with a bunch of other people and we built it on a foundation of intentional peer support do people know about intentional peer support should I show hands let's see so intentional peer support I mean I think it's worth saying that you know sherry Mead who was like the the founder of intentional peer support came this is the tradition that she came from this was like she was like a tradition that was very distrustful of the mainstream medical model and of the power dynamics going on in the mental health system and so it's it's a it's a system that actually it has very um you know they lay out very clearly they're like peer specialists are not there to be helpful you're not there to help you're there to learn with you're there to you're there to learn with other people and maybe you need some help too you know it's like there's a path like there's there's fundamental power shifts that go on when you when you train an intentional peer support the western mass recovery learning community will just do the show of hands again we're on the west coast I'm curious that people know about okay so a lot less so you should know that on the East Coast there are these people doing really good peer work they're like they very clear lines that they've drawn about what it means to be appears what it means to be a peer specialist and what it doesn't and then really the thing let's see what the next of that is all right the so to come back to like come back to this metaphor of the pioneer species and you know and like what it means to to be in the system and to try and make changes in the system part of the reason that I have this job and I get to do what I'm doing is that I have this mentor named Pat Deegan who contracts with on-track New York and so I get to work directly with her developing trainings to do - then go train all these peer specialists in New York State and then around the country and she laid the groundwork for me to be able to come in and now I'm in there and I ring with me all this other stuff and so it like thinking about succession and thinking about like how do we change things you know if we want to make radical change it doesn't happen from just trying to tear down a wall it really is more of an ecological systemic process and so I feel like that's that's important that's important to say um so here's the thing I we have a couple more slides that are basically we actually just put this together right before the presentation and I guess I'm just going to show you this is kind of some of the stuff that I used to teach I mean I just so you have a sense of like you know in New York we have eight on track teams that have peer specialists and I get to train I get to train them individually once a month and and together as a group once a month or scattered at all over New York State and and I think one of the critical pieces there's like a just like I guess a couple more things I'll say one of the things that I see and maybe you all see it too if you're in the similar world to where I am is that peer specialists end up getting hired into agencies and working on clinical teams where their roles are not clearly defined and so because the roles are not clearly defined they end up doing clinical work because it's a clinical team after all and I think part of what we're trying to do is to lay down some very clear lines that say that's not pure work like hiring people to do to do like clinical work and paying them less than what the clinicians are getting paid that's called neoliberal economics that's not pure work that's like that that's the so I think that it's in our best interests to be really clear about what what we what we mean when we say peer work and and so you know over the last year like me and a bunch of people have been laying down some structure for you know and so for example so here's an article that Pat Deegan wrote that's like I'm not I'm not gonna bust it all out but basically we made this chart that was like this is the this is the peer perspective this is the clinical perspective and this is the this is the space in between this is what this is what we have in common and another thing that we did that I think and here like another thing that we did that I think is really important is we created we created a I mean it's it's deceptively simple we made a two-page checklist that's like a supervisor's checklist for peers for like to supervise peer specialists because what we realized was what I realized was looking around was that people who were supervising peer specialists didn't actually know what the role was and therefore didn't were supervising peers in the same way you would supervise a clinician so you know we created a we created a tool that that uh that helps our teams a whole lot and then I think the last thing I'll talk about is that this is a discussion that Nev and I have been having a bunch lately is you know we're really interested in in how I'm imagining this is a room of people who are familiar with the rat model you know so so back in like 2005 when the Icarus project was young and it was just like a bunch of us writing on on the internet on these discussion forums we started we we got really excited about taking the idea of rap and expanding it and talking about social context because the thing that was missing from rap was talking about talking about oppression and talking about race and class and gender and and like coming up with language where people could feel comfortable talking about it and so you know so that's what we've been doing and and now it's because I work for the office in mental health we can't call it team apps which is what we call it outside so it's called on track maps but it's slick right it's like we just got yeah but it's cool because we get to we get to be inside the system doing good doing good work so that's kind of the end of my spiel I feel like this idea of disruptive innovation is like a really I find it really useful it helps me on a daily basis when I go to work and I'm like thinking about like oh my god I work at the Psychiatric Institute what like what am i doing I know what I'm doing I'm slowly changing the landscape and opening up space for other people so there you go that's that's that's what we got and now it's never questions okay sorry I actually want to make a few more points about Sasha saw some work that he didn't make just really quickly want to go back to because I think I've done a lot of consultation research a lot of different kinds of work both at the federal level with you know national technical assistance associated with the ten percent set aside that funds a lot of these programs and then with different states and and one thing I want to say is like really just kind of lay out for you a little clearer a little more clearly some of the distinctions here and so to go back to this side of Sasha's right multiple frameworks for thinking about psychosis I've seen you know some degree of lip service in programs - this is kind of an ideal very rarely see that playing out in any kind of concrete tangible way on the ground so one piece of this in terms of how you know sasha is doing this work at on track is I think to really I mean a formalized training that is sort of part of the onboarding of staff that's part of their ongoing kind of continuing education and development is really about you know a you know efficient but in another sense really a deep dive into different frameworks that we can draw on different practices internationally and nationally including the hearing voices movement including the Icarus project spiritual emergence frameworks and validating that upfront in terms of what people are doing I want to say to that you know leadership have supported Sasha to do this and this is something that we don't see in all in all programs and so there's there's sort of a synergistic set of things that have to go together in terms of the higher level support has to be there and that's usually coming from people who do not themselves identify as having lived experience and that sort of incapacitate s' you know this role coming in and really shifting the conversation in a more fundamental way and validating validating that that kind of work and then I think Sasha did not talk in you know in terrible detail about his superficie super super vision checklist but one thing I really want to emphasize there is that it's sort of concretely very concretely pushes back again the typical forms of co-optation that we see and again in a way that is supported by a leadership so it's not just kind of Sascha coming in in some tangential way leadership or saying no that really is what has to happen and that means that the team leads you know really gonna have to start validating and and including and integrating the peer role in a way that it is kind of coming in to the team and productively disrupting things productively disrupting what would otherwise just be the status quo way of thinking about talking about and acting on psychosis so I mean I hope in the remaining time in terms of like where it may be where this conversation could go is you know maybe discussing some of this digging into it a little bit more we all know that the rhetoric of so much of this exceeds the reality this is one of the biggest problems every early intervention program in the country actually almost every public mental health program is now trauma-informed culturally competent culturally sensitive you know integrates peers values you know youth voice etc so the problem is is that we've we've kind of reached a place where that is the ubiquitous rhetoric of all these programs so then what does it mean to actually do transformative work within these spaces not to talk about it not to claim that in some high-level abstract way but you know the devil is in the details kind of stuff so you know any kind of I think any kind of questions or dialogue that we can dive into about that would be awesome and it's great to have so many people from the early intervention you know kind of world in this room not over yet we want you to we want you to talk we have we have a lot of time okay oh okay now our god sorry way in the back of the room so I am the program director for the prep program in Massachusetts one of the early intervention early psychosis programs and I'm wondering if we can have a bit of a dialogue about third party reimbursement because I feel like at the very beginning you said we know the mental health system is broken and I actually sat down and wrote a note and I'm like how is it that everywhere I go collectively mental health professionals go oh yeah we'd like everybody in the room nodded when you said that we all know it's broken and yet it's made up of us and it's still broken and so I've sort of been sitting and wrestling with that idea and it feels like a lot of the drivers of that is the mental health insurance or health insurance in general and how we're beholden to that I know it is true in my program and that we're lucky to be grant funded and that gives us the flexibility that we had to do the type of work we do but I mean they're very clear that that's not going to last forever well just one quick response to that and Dave Chernin others in ashpit he was the lead author on this and it just came out a couple of weeks ago so wouldn't expect anybody didn't know about it yet looked at different creative strategies that states have used to finance early intervention including specifically the peer support component including specifically using peer support to go beyond you know kind of beyond the conventional kind of you know bottom line kind of billable hours and I believe these I know there's a lot of people here from Georgia I believe Georgia is one of the case studies in that document and specifically in terms of creative funding you know ways of tapping into different existing mechanisms but other states Oregon is featured in there you know so again there's no there's no one way I mean states are very different in terms of the ways they can tap into waivers they can tap into Medicaid state block grant money and combine that and be creative so I think there's some really good ideas in there so don't think like that in and of itself is a reason to sort of give up and feel hopeless I mean I think there's a lot of kind of creative potential even you know kind of given the funding structures that we have and you know maybe I'll you know raise one of sasha's I think really brilliant idea is here which is to sort of better tap into existing like peer supports in the sense of like college students and maybe I'll let Sasha talk about that a little bit but I think that there's you know the general idea being is there more that we can do that isn't falling back on this system of clinical medical billing is there yes because there are all these systems that you know youth and young adults are naturally involved in and who their peers are that we're simply you know instead just you know again drifting back to well clinical intervention instead of really building those those bridges but yeah you know I feel like we we have different strengths and different places where we you know we work as someone who I spent a bunch of time getting locked up against my will in psychiatric hospitals for years on and off and so for me when I talk about the system being broken yeah for sure there's some part of me that's like I'm always gonna feel like the system is kind of broken i am i think what nevus referring to as far as like the you know the the strategy that i that i hold tight to its that really in the end i spend all this time developing these training modules and it'll be great if they spread all over the country and all the peer specialists are using them but I'm not banking on it I mean I'm you know and what I think about a lot more is what I do have faith in is that there are growing social movements outside of the mental health system and I and I'm really interested in the intersection between those movements and the mental health system because frankly if these programs are working well if like the on-track programs are working well the young people who are coming into them will not be staying in the mental health system they'll be out of the mental health system and they'll be in the community so that's no that's what I think about so first I want to say thank you my husband and I developed the West Virginia specialized first episode psychosis program quiet Minds based on the on-track we used her on track as our as our guide so thank you for being our pioneer my question is you were talking about training your peer support staff monthly and I'm just wondering what kind of training you would provide yeah all right so yeah it's a lot less sexy than it sounds it's like I'm sitting at my desk that the New York State Psychiatric Institute there's a computer in front of me and I'm talking on the phone so like all the peer specialists and they're looking at a PowerPoint like the PowerPoint we're showing you today and I and I've had to learn how to after many years of facilitating rooms full of people where I can see people's eyes and gauge what's going on in the room I've had to learn how to train people without seeing them yeah I I I'm I'm getting really good at it and hopefully I won't be doing it forever yes I work with the prep in San Francisco and Sasha you you had a picture of dandelions up there and the pioneers and mulberries or whatever and I made the call berries blackberries Northwest's I'm finished now but but uh it just brought to mind how how worst as a peer how we're seen in the field now and even with all the great work that's going on prep sponsored CBT P program our training for prep staff but then it was determined that only clinicians could be in there and okay you know I've been through it before but I wanted to participate so I said something they said well we're developing training for peers and so a couple months later you know the email came out and there was a training and it was gonna be for six hours rather than four days and I'm leaving prep soon so I feel liberated I can say this my response was I demur I choose not to participate in in CBT P for dummies and and the response well you can imagine so I talked to some of the peers who went there and the training was all about how peers can support clinicians in their treatment using CBT P so and so I'm I guess what the point I'm trying to make is going back to the weeds again this is how we're still considered in in the field in many many places even places that are presumed to be you know progressive thinking yeah so thanks Todd and I mean and and just just to take that even a little further I mean I think kind of what you're speaking to is that you know there's an underlying devaluation not just a peer specialists in terms of like a lower paid less formally educated maybe like role and kind of you know strata within the mental health system but also that there's a diva there's a real devaluation of what that perspective actually is of multiple frameworks of exploration and engagement with experience outside of a you know purely biomedical frame or in the case of CBT P a sort of a very distressed problem-focused frame maybe we could say and you know and and and and so all of that is sort of devalued along with the role and that's really really problematic and so you know I think we want to kind of counterbalance these like great examples like you know the work that Sasha is able to do it on track and how leadership they're supporting that and how it's becoming part of the culture and at the same time that there's many many places in which that's not true in which there's a real need to sort of really kind of carefully critique what is happening and try to push that to change and that's not eat that's really not easy so you know sort of I think you know a national dialogue about this would be the ideal you know ideal ideal thing to really start discussing this in in this more like you know kind of gritty detailed way how can we change things how can we really change things and not just you know kind of claim that these are gonna programs that are gonna change young people's trajectories but like you know really engage with these experiences in a fundamentally qualitatively different way hi thank you so much for your presentation so I'm a nurse practitioner in four to esa' programs locally here and one County crisis team locally so I have kind of a two-part question comment so in the crisis team that I work with we see people short term and there's been a big and there's a amazing group of peers who are part of the crisis team and we've had a lot of patients slash client slash participants who have come through the crisis team seeking help who have worked with peers and are really interested in becoming peers and it's brought up a lot there's a big discussion on the crisis team happening now of house house is there a time when it's too soon for someone to apply for a job to work on the crisis team that they have just been you know in treatment or whatever word you want they just went through it for health and now they want to be hired as a peer and there's been a really it's a really ongoing kind of rich discussion of and there's a lot of kind of differing opinions on the crisis team about that and I think also that it brings up some questions a lot of questions in my mind and I've spent so much time thinking coming from the medical model none of my training really prepared me to kind of navigate the ethics or boundaries about being on for example with the crisis team if they're to hire someone who I treated how and just looking for some theoretical structure to guide guide me in my work do you know what I mean I can't find anything I am sort of searching for that that's sorry I talked to yeah that's really that's a really great question I am also somebody who has navigated those at times you know kind of very awkward reworking of relationships when you transfer from the clinical or patient role to a completely different kind of role I don't know that there's any clear answer I mean in a way it's so individual how do you rework existing power dynamics how do you you know make sure that there is not a kind of baggage from the past relationship that's going to render it extremely difficult to actually work and it seems like that that sort of thing that kind of has to be case-by-case because we're all such unique individuals your other question I mean just one comment this is not - sort of like you know downplay the importance of not putting people like peer specialists in a position in which you know they're set up to fail essentially right but at the same time I mean I worry I just moved to Florida recently I just got my driver's license I just looked at what you need to do in the state of Florida to register as a psychologist in in all those cases you are asked detailed questions about your mental health history any hospitalizations diagnoses and so there is something really problematic in a much like bigger picture kind of way culturally about singling out particular groups and saying well you now have this bar in terms of it you have to have been stable or in recovery for X amount of time whereas like you know is anybody else is any other kind of category of person ask those same questions or have these if a rule is made it's going to be in a way arbitrary because everybody is unique and individual so I mean I would really kind of encourage stayin away from some kind of algorithmic it has to be X amount of time there are states that do this many of them are on the peer specialist credential that have a set amount of time you have to have been stable unhospitable you can become a lights or a credentialed peer specialist so I think just really kind of thinking about that and then okay so if you're trying to avoid that you know how can there just be real conversations like you would maybe have with anyone around the assortment of challenges competing caregiving stressors like everyone you know making it more about everyone rather than rather than a group would give one really small example of just within my work where I felt that just exemplifies this sort of unusual situation which I'm describing so I was seeing a patient or participant through the crisis team who was really interested in peer support and they had a lot of questions for me about how long do you need to be sober and recovery or this or that and so I went and got one of the peers and and had them joined the the visit which had been you know the person was here for a medication visit or you know something something like that so the peer joined and so I was noticing how I so I was so I mean I guess if it were not someone who was so then it switched to a situation where this person is kind of curious about talking about a job with the peer person who I've just brought in who happened to be the supervisor for the the peers on the crisis team so then I was it switch to thinking about how how how how much detail can I provide about the questions with that this person has just asked me because they were talking about sobriety and length recovery those type of things because now it's sort of like this is a potential job thing do you know what I mean and so I was just in I was really in my head and not really sure how to do you know what I'm saying how that was is just one example of the two rules kind of of me being in a dual role and not sure how to go about it there's an issue about disclosure knowledge presence relationship in the peer role but it's still I mean I think I think there is like there's a there's a good point you know I mean there's a very important point here right because there is still there are still power hierarchies even in a peer role because one person is being paid and the other is not and one person has certain kinds of maybe both rights and obligations visa vie the other that are not truly mutual and reciprocal right so there is still a hierarchy there and even there in research on peer specialists and what they find you know most problematic number of different studies from Canada and the US have repeatedly found that actually I'm similar to what you're describing in terms of this is hard I don't know how to do it things are crossing in ways I don't know how to navigate like you know peers are often reporting that depending on the exact way that the role is spelled out and I think hence some of the where we see sort of another set of tensions is between peer support happening completely outside the system peer support being compensated or not even if it's outside the system like does it sort of erode that if people are being paid if some people are paid and others are not so you have sort of the you know paid person recipient even though it's completely outside of the system so I think I mean all of that is not so you know clear but these are these are such great conversations to have I mean if we can really think deeply about exact these issues and the subtle dynamics of power and how that plays out I mean to me that's the answer right is having these conversations so we have about 10 more minutes we'll go here did you I was just gonna say that you know a part of the story I left out was that the year before I worked at Ontrack I worked as I I went to Social Work school and I was a I was a clinical intern and at the parachute mobile treatment team in Manhattan and so I worked on a team that was a mix of peer specialists and clinicians and so I had a whole year of participating in and observing all kinds of interesting dynamics between clinical staff and peer specialists and trying to make sense and everyone had been trained in intentional peer support everyone had been trained in open dialogue and so it was like a it was an intense laboratory of like really tricky power dynamics and strong personalities but anyway I mean I feel like the answer to your question like when it comes down to it when I think about it because I now do all these trainings for teams around how to hire a peer specialists and where to where to look for people you know where to look for peer specialists and so much of it is is you know it it's like it's less about like the intensity of your your mental health history and more are you like good at connecting with people that's here you know like that's like some people are really good at connecting with people and when if you're recently coming out of crisis can you can be connecting with people and then have a hard time doing it and how how like I know people who know how to navigate themselves they go into crisis and then they come out of it really quick because they've been doing it for a long time and that can actually be really helpful that can be a useful thing for for other people to see yeah so those are my thoughts could you give an example of constructive disruption something that may be an intervention that either of you made where you really did reshape the direction that a two medical clinical discussion was going I'd like to be able to vividly see what that feels like when the peer role is working in a differentiated way okay I hope this is helpful this is the one that immediately comes to mind so because okay so it's it's tricky right because like I'm Anna I'm a trainer I work on a training team with a bunch of other people I'm also the only person on the training team who was locked up as an 18 year old and diagnosed with a psychotic disorder and so and I come in with I come in talking the way I'm talking you know this is how I talk when at work and and and so pat pat likes to use the language of Mike microaggressions to talk about how like how people can without even realizing that they're doing it end up basically dissing you I mean basically like you know there's ways that without you know saying something to your face or calling you a name put you down and so what's I'm just gonna give an example of like not from I'm gonna give you example from work which is like part of my job is I do these we call them care consultation calls where a number of different teams come on and it's a it's a it's like they describe you know they describe a case with with a participant and then we all talk about it and repeatedly you know and I'd be on the calls to give feedback and repeatedly I would give feedback and then the person who was writing down the feedback and like reporting at the end of the call would just leave my stuff out you know just not included at all and thankfully I wish everyone had a pat Deegan around to like you know like have their backs you know because I was furious but Pat you know was like yeah like you need to actually talk to that person and have a conversation with them and I did and now me in that person who's like the you know very clinically focused we have a very there because it was named because it was like acknowledged and there was enough there was a space there was a container to hold it and it wasn't just like oh it's the guy it's the crazy Peter guy talking things shifted there's like a dynamic that shifted so I think like you could use that example and then just scale out to just if a team leader and a peer specialist build a relationship with each other where they trust each other then when things happen on the team there's space to call things out and talk about it oh you know I had one one just one more example there so I think there's situations in which leadership are supporting the folks trying to do this more sort of transformative peer work and there are situations in which they're not supported at all and in which you know I want to draw and I know not everybody was in my presentation yesterday but this sort of beautiful language of you know some people who are who are speaking truth just you know just based on sort of the facticity of their being and persisting in exhausting oppressive spaces but persisting there so one of my very dear friends who has also done incredible work in this early intervention space in a situation in which there was you know no support and yet by persisting I mean in spite of kind of you know just incredible you know forces kind of trying to stamp that out and constrain it you have a person now who has broken through into a space who is introducing things just by virtue of who they are and their own experience that is sort of disrupting the narrative that otherwise would just completely saturate that space and so that's really important too so even when there's no there's nobody embracing that actively there's nobody supporting that you know it's like it's creating cracks in that system so I think that's another kind of form of creative disruption and what does that do it's starting to it raises questions in people's minds maybe maybe maybe they're not there they're not supported to go there but now they have questions and so I think that's really really critical to obviously it's a tragedy when that's not supported because of how incredibly hard it is on the people who are hold that space who are creating those cracks I've been waiting for the past ten minutes we could ask I now have accumulated four questions I just want to want to comment on the issue of when is it when is it appropriate for individual who is in a program to actually come back to the program and share the personal experience about three years ago we presented in an i ISPs conference and my co-presenter started as a client in the partial care program she was my client in the car partial care program then became a peer counselor in the partial care program and became a presenter in the in the ISPs conference so in my opinion there is there there is there is there doesn't need to be any break in the time as long as you are you know the individuals strengths and you have systems in place to bring the individual on and just like you support every individual who is coming in normal abnormal ill or not to to help them succeed if you have those systems in place then you can succeed so that that that was one of my four I just I don't want to hog they did the microphone sir but there I have three three other things may be very very briefly in respect to the to this kind of a discrimination in terms of the training we had training in the in the act program about four years ago on scanty behavioral interventions for individuals with serious mental illnesses everyone including the tooth the specialists were part of the part of the training okay because we been we knew and believed in this special kind of experience they bring to the table and so to me it is it is so much to do with the culture of that particular players and the culture of the organization so my when the organization where I'm working said that hey we are supporting say peer specialists here I said yes to some extent in the sense you have peer specialists in some programs which are allowed by the state do you have peer specialists as part of your executive teams you have peer specialists as part of your board then you are completely supporting it so that it it tells up it tells about the culture culture of the organization yeah I mean just not on that note all of this this this research is not quite published yet we did a huge huge survey of peer specialists around the country and looked at what was sort of the most important predictor of you know people basically kind of feeling the recovery orientation of the organization feeling supported as peer specialists like all kinds of different in a certain sense outcomes or quasi outcomes biggest predictor of all of them was so this is a novel kind of measure we created which is the lived experience culture of the organization and precisely it's not just about are there peer specialists it it's are they integrated across the entire spectrum in hierarchy are there people and leadership roles or leadership you know kind of explicitly concretely you know pushing for bringing in speakers bringing in consultants right so cutting across levels cutting across domains research evaluation program development clinical work and and that's it so I think that's a really you know really really great point and I think the challenge would be I'm sure there are programs in the room who's like sort of already get it and so we're sort of speaking to the choir in that sense how do we take them many many many many programs and agencies in this country that are not there and push for those changes and how do we not sort of impose all of that burden on peer specialists activists advocates who so often I'm just sort of crushed by the weight of you know coming from from the bottom up at the you know bottom end of this kind of hierarchy that's very his or entrenched and trying to push for change so can we get you know champions for this kind of deeper change from from from other areas who are pushing pushing for that as well I'm sure you're one of them but you know how do we how do we get more of this in the US and in certain spaces like early intervention

Channel: ISPS US

Views: 973

Rating: 5 out of 5

Keywords: psychosis, schizophrenia, peer support, radical, recovery, madness, early psychosis, first episode, icarus project, tmap, distress, extreme states, punk, diversity, healing, dubrul, experimentation, intersectionality

Id: JPTq8AjqBTA

Length: 59min 47sec (3587 seconds)

Published: Thu Dec 21 2017