JUSTIN BROWN: All right. Thanks, everyone, thanks for coming back. What a lunch we had. I am glad that-how many people still are standing? I had a big cup of coffee to get me through this next bit. Thanks, everybody, for coming back. We're going to try to get ready here for the second half of our day. Okay. So originally this next discussion we were going to ask you to break out into smaller groups, but I think we're actually comfortable enough with each other at this point, and we're not really such a large group, so we'd like to stay together for this next piece. The purpose of this piece is really to begin thinking about where we're at in each of our individual CILs, and where we'd like to go. We tried to focus on the board and a presence within the leadership and, you know, directing the IL program. Maybe I can just get a sense, it would be helpful if we could just go around to each table and if you could just give us a two minute report in on how you feel, you know, where you're at in your own IL now with the inclusion of the psychiatric survivor movement in your community, and if you're not from an IL, speak about sort of how you, how you hope to move forward and where you're at today. So why don't we start with, with folks over here? I've got a mic, and can you guys report in, just, great, you've got a mic as well. Okay. Where are you at today, and where AUDIENCE MEMBER: I am David Robinson, the executive director of Center for People with Disabilities in Boulder, Colorado. Also with me here, I'll give her a chance to talk more closely about our services. We serve people with psychiatric disabilities. We provide them services, especially with in-home health care, which isn't exactly your traditional independent living service, but we're looking more closely at that, and one of the reasons we came here was to get a better understanding of how to be more inclusive and how to be less a care-taking role in just one situation. So we, as I mentioned yesterday morning when I introduced myself, we recently came into contact with Dr. Ron Basman, an advocate for psychiatric survivors. He's a survivor himself. And he is very much on the radical end of the spectrum in terms of medications and recovery and all of that. I had hoped to get him on to our Board of Directors about a half a year or so ago and my board didn't snap that opportunity up. I will continue to advocate for that. So other than that, whatever Joan wants to add when her turn comes up in terms of our services and inclusion, we do touch on quite a bit of people who have head injuries, quite a bit of it in the mountain areas. And I think that's very closely connected to psychiatric disabilities in certain ways, particularly in terms of discussions on behavior. JUSTIN BROWN: A courageous disclosure to try to get an advocate on the board who not only identifies as having lived experience but also is quite outspoken about that and finding that the board wasn't yet ready to make that step. Is that a fair description? AUDIENCE MEMBER: Well, I'm not sure, I wouldn't want to make an assumption on my board motivation one way or the other. They, they're a very tight knit group and it's not easy for anybody to get on to the board with them, but, but they're giving a lot of thought on it. We're just finishing up our strategic plan. I think we're going to move forward very quickly on things like that, but for myself, I very much would like to engage people who are psychiatric survivors. JUSTIN BROWN: Thank you. Thank you. So that's great. Yep. AUDIENCE MEMBER: Hi, Melissa from Glen Burnie, ARI. We have just had a peer support group come to our office to offer us services so that we can do a lot of referrals to them, so when you were discussing your peer support, we just received that information, and they have been officially trained to deal primarily with psychiatric disabilities. So we're going to get, tap into them a little bit more so that we'll be servicing everyone, and it's, the heroin epidemic is very, very strong right now in the state of Maryland, so this is what was born out of that, so that's why we're going to, tap into them a little more. That is what we are doing so far. JUSTIN BROWN: Forming alliances with people who are in the recovery business. AUDIENCE MEMBER: Yes, and what we're doing, we're bringing into the CIL and doing those individual goals, but then also referring them so they can get some deeper work done with the trains. JUSTIN BROWN: Thank you. You can hold that. Kenny. AUDIENCE MEMBER: My name is Kenny, and I am not associated with any independent living center at the moment, or any employer, for that matter. I'm looking for a job. I am interested in working for an independent living center, but I have had experience as an intern with the National Council on Independent Living. A couple of years ago, Mr. Starkloffs office of Disability Institute in St. Louis. And a little bit with Paraquad, too. I mean, as a person with both psychiatric and physical disabilities JUSTIN BROWN: We're so glad you're here, Kenny, and you're making a difference and your voice is being heard, so thank you. AUDIENCE MEMBER: Thanks so much. Kind of learning more about what is going on in the peer-to-peer network, that are coming up across the country, and I think it's definitely a very important to integrate the two movements, so I'm so grateful to have this conference to be here. JUSTIN BROWN: We're not going to have time to go to each person in the room. But what I'd like to ask, just kind of general question, this experience that David shared with us, trying to bring somebody from the outside into what he described as a very kind of tight-knit community, right, because that's one of the beauties of IL culture that often can be so tight knit and so supportive of each other, but then Davids experience is well, it's hard sometimes to bring new voices, new individuals into that community. Is that something that resonates with other of you here? Others of you here? Yes. AUDIENCE MEMBER: The experience doesn't resonate but with me partially because the framing doesn't resonate with me. I don't see bringing people with mental health disabilities and recovery perspective on to the board as someone coming from the outside in. People with psychiatric disabilities, mental health disabilities have kind of always been part of the disability community, whether we've paid as much attention to that side of our history as we should. So I think framing it as, here's this radical outsider that we're going to bring in to shake things up is probably counterproductive, saying, hey, here's a part of our community that we, you know, should be lifting up more from the inside might help with some of that, to be honest. JUSTIN BROWN: So it's wonderful that we have different perspectives, that people have different experiences, the Boston independent living center was the second independent living center in the country. And so I think we just want to acknowledge that different independent living centers have different experiences, and that sometimes you can grow leadership from within, which is what you're talking about, and other times, like Sarah had talked about, one needs to look out to other groups, other advocates, and try to bring them in, and so there's multiple ways to, to approach this. AUDIENCE MEMBER: And I think there's a difference between coalition building, which we certainly do too, and this thought of, you know, intentionally bringing in an interloper, because, yeah, coalition building is something you do with your outlies who are not part of your group but have common cause. But having someone with a mental health disability on your board isn't necessarily an allyship situation, it's including your whole community. JUSTIN BROWN: Thank you. Yes, please. AUDIENCE MEMBER: Is this on? So I'm with David, I'm Joan, he's more diplomatic than I am. I'm kind of like on the lines, a little bit more mouthy. I would agree with some of your perspective, coming to Colorado over a year ago, I've been to various centers throughout and working at them, I worked in Nebraska, Iowa, Michigan, and Colorado, sometimes I think it thinks it's not part of the union. It's like its own little section, because they generally feel that way about anybody coming in, they're kind of suspicious and hold off, so it's a little different kind of community, and we've had to actually build coalitions within, and it's funny because a lot of the people we work with aren't from Colorado but it's, like, there's supposed to be this line, once you've lived there this long they accept you but it's a very hard community to break into in Colorado as a whole, so I think that's part of it. Also, that there is certain stigmas still with different populations there, and I think that's part of, you know, Dave and I are pretty holistic in our approaches so it's been a little different in trying to building those bridges and we have to do it slowly. He's more, I'm more like just jump in and do it and make them and he's, like, let's now, let's build, let's do this, so it's a good kind of partnership that we have, but it's kind of a mix between both of those two. JUSTIN BROWN: Great. Yes, there's several people. AUDIENCE MEMBER: I'm Stacey Madison. So my experience has been that the ILRs tend to be a very tight-knit group, which can be sort of a feeling of just sort of exclusiveness, so it's been really hard to break in, particularly if you're from the outside. However, I think it's important that we do find people from the outside, not necessarily to rattle people's cages but just to offer another experience that some might be resistant to hearing. Particularly, what I've noticed is, there's been a much more focus and attention paid to disability, physical disabilities as opposed to mental health disabilities, and there's still some real resistance there as well. We're not really being as recognized as I think that we should be. So I mean, you know, I get that, that it's important to kind of go, you know, from the inside to work on things. However, when you have a tight-knit group that is used to each other and there is some just sort of, not resentment, but just conflict and difficulty allowing other groups to come in. I think that can be detrimental to the IL, the movement, in and of itself. JUSTIN BROWN: Courtland? AUDIENCE MEMBER: I was going to add, I don't want to give the people the idea that there is something special in the water in Boston or anything, Boston is old. You know what I mean? So we kind of got a head start on a bunch of stuff and we are also one of the second oldest centers, we are the second center. But we also have really good advocates. I had the pleasure of working, you know, with Judy, you mentioned her book, and I got emotional, because I remembered, you know, I got my copy of the book from her, you know, so when I first started at BCIL she was already a presence there. I don't recall if she was on our board or not, so she was from someone who kind of represented both perspectives because she was within, we worked closely with her. She was also prodding people and reminding people how they needed to be, you know, more inclusive. And this has been part of the growth process of the independent living movement overall. I remember 15 years ago being involved with NCIL and their conversation about needing to be a more multicultural presence and a formation of the multicultural committee and a lot of conversations about that because some of the folks that were in the in that we're talking about in this context, did not feel like they were in. When you were talking about actually resonated with me, I remember, you know, other folks coming to me because folks, well you are prominent in NCIL. I just joined NCIL myself. But I was up on the dais, I would hear so many people who said we don't feel like we have a voice within the actual group that you consider in that you're outside of, you know what I mean? I think that the people that are agitating to say more inclusive, more access for all of us. I mean, 15 years ago, people, when we talk about the totem pole, if we're being real, 15 years ago, when folks were, would say, I mean, IL people would kind of snark about the conversation around multiple chemical sensitivities. You know what I mean? Those were things that really happened, and unless we're really able to talk about those things, and really be self-critical and say, what do we do well but what do we need to do better and we always have to be listening. We always have to be listening and growing, because if not, you know what I mean? That's how we get stronger. But we're always going to have that internal dialogue as well and how we present to the outside world is important but we still have to continue to have that internal dialogue. You know what I mean? We're out there yelling for justice. But there may be folks within the ranks who don't feel that same level of justice internally. JUSTIN BROWN: Right. I love what you say. You know, it's a process, we are kind of at different places in that process and unless we can have this conversation, and acknowledge those differences, you know, we're not going to make head way, and on the one hand we want to challenge people, but on the other hand, we have to recognize that each of us kind of may be at a slightly different place, not only with respect to psychiatric diversity, right, but with respect to all kinds of diversity within the IL movement. Thanks. AUDIENCE MEMBER: This is actually going to go, it's going to dovetail with what's up on the PowerPoint. So we're a fairly small relatively new CIL under five years old or just about five years old, and we are always trying to expand our board, and it's a challenge, in general, to find people who want to be to on a board, are competent, have the time, can get there, et cetera and have a disability and we're very lucky. We have 100% disability board. Everyone on our board. But none of them have psychiatric disabilities. How do we attract people who would be good board members who have psychiatric disabilities without making them the token person with psychiatric disability. It's entirely possible board members who have psychiatric disabilities and never mentioned it but trying to avoid that tokenism that we talk about, like, oh, here's our all, you know, physical and sensory disability board members, except for, you know, Joe here. Joe has a psychiatric disability. So we're good now. We've got it, yeah. That's, yeah, what do you, I mean, is this where the coalition building comes in? I mean DANIEL FISHER: Say a word about it? Yeah. You're in Maryland, right? AUDIENCE MEMBER: Yes. DANIEL FISHER: Do you know On Our Own of Maryland? AUDIENCE MEMBER: Very well. DANIEL FISHER: So I would work with them, in fact I think a good model for this would be, if there is a statewide organization, they should choose somebody. They should choose who they feel would be a good representative, because what you really mostly want is someone representing a broad cross section of the psychiatric consumer survivor movement, so you're not just getting somebody, like you were saying, who, oh, they represent it. That's when it's tokenism. You just say, we have, we can check off the box, they have a psychiatric disability, but they have no connection to an advocacy group. If you're really going to be able to do advocacy, and I think, you know, this has come through loud and clear, that it's very, very needed, and it also is a function of the CILs, then the ideal thing, and there are about 30 states that have fairly significant consumer survivor advocacy groups statewide, get to know them, give them a voice, ask them to go through a process, then who is there would be representing a group. They wouldn't be alone. They'd be able to take, you know, an idea that has come up, peer support, and they'd be able to take it back to their organization, and come forward with a policy in that area. So it wouldn't be just a person working alone. That's when I think you have AUDIENCE MEMBER: Would you say that you would expand that policy to all of the board members regardless of disability, that they all should be appointed DANIEL FISHER: I would say for all the different disabilities, if there is, if you have a strong deaf or hard-of-hearing community in your state, ask them, or in your region, ask them if they could send a representative, yeah. It's a little bit like if, on a national level, for instance, say SAMHSA wants a board member, on their board they want someone to represent the consumer survivor, you know, voice. We go to SAMHSA and we say, these are the people that we think you should consider. We don't wait for SAMHSA to go and say, oh, here's somebody, they live nearby and they dress well and that's who we would like to have, because you know, they, they aren't necessarily going to pick somebody that way who has connection with the, you know, representatives across the country. So I think, yeah, I would say, yeah, in any of the areas I would recommend that. MIKE BACHHUBER: I'm going to disagree with Dan, and basically not to say that you should never do that, but when you're looking for board members, you have to pick people who know independent living AUDIENCE MEMBER: Thank you. MIKE BACHHUBER: Who have strong feelings about promoting your center, and sometimes a strategy of trying to bring someone in from the outside is going to work against that. It's not that you should never do that, but you, I think you have to do that with a bit of caution. AUDIENCE MEMBER: Thank you for, I was actually going to rebut with questions along these lines as a CIL, you know, I see it's a good place to get a pool of candidates, but you definitely need someone who knows the IL and is supportive of the CIL. MIKE BACHHUBER: Thank you for asking that question, because frankly, I think it's a really good question and sometimes those kinds of questions are hard to ask. The other DANIEL FISHER: Can I ask you a question? MIKE BACHHUBER: We can have a bit of a dialogue. DANIEL FISHER: What is the purpose of the board? MIKE BACHHUBER: The Board of Directors is to provide for the management and control of the agency. This is where I get into trouble because I have background as a lawyer. I'm no longer a lawyer, but I have worked with a lot of organizations, and I think it's important to really think about what your board is and so the other part of the answer that I was going to give is how do you recruit other board members, because if you look to your consumer base, then that's one thing that you should look at, and hopefully you have psychiatric consumers who could be invited to be on your board. If you look to external partners, sometimes you could follow a strategy very similar to the one that Dan suggests. But I think you do always have to consider having a board that is going to understand and support the central mission of your CIL, and I think Dan wanted to RUTHIE POOLE: You know, I was arm wrestling him for this. Now, and this is kind of interesting, and this will be an interesting discussion, because we all don't necessarily agree on this, because I agree with Dan on this and the reason why is, those of us with psychiatric disability have very often had the experience of, you better shut up and not say a word. We're very, as a people, a very marginalized group, so if you bring on someone to your board who happens to have a psychiatric disability who is someone, someone who has gotten peer support from your services, they may feel like they can't open their mouths, and the persons that Dan is talking about are people who are already leaders. They're already leaders in the movement. Yeah, you don't want to bring on some board member who doesn't care about your IL. I care deeply about IL. Deeply. Do I work for an IL? No. Would I be a good board member for BCIL? You betcha, I would be. I don't, because I have some leadership skills, they couldn't shut me up, right? Right, Courtland? Because what, there are unscrupulous executive directors in nonprofits and I don't think we have one of them in this room, but I've known many. I've been on many a board of directors. Those who want to control their board, they recruit soft-spoken people. No matter what the disability is. People that are going to rubber stamp, and I've left boards like that, that are going to rubber stamp, and that's not what you want. What you guys are saying you want to develop is a real organization, that's really consumer-controlled, so you want people who can speak out. AUDIENCE MEMBER: I happen to work for an independent living center, as far as your board development, you want, and I'm not talking about, I'm not going to speak to the corrupt folks that are looking for a soft board, but I think if you're a dynamic agency and providing good services to a cross-disability population, you want a energized, smart, involved, involved, and energized and diverse cross-disability board. Period. That understands independent living, has a fiduciary responsibility to your independent living center, and is committed to systemic advocacy and provision of the five course services at a minimum. For me, that's what the Board of Directors is for, to answer that question, but I also think there's a good mechanism to be able to identify, when you talked about maybe folks who haven't disclosed, as you're doing your board development or interviewing people who potentially might be on your board because you ought to be actually recruiting members of your board, one of the things we just developed for our, and we're not using this consistently, we should, is language in our interviewing process because you can't ask somebody to disclose their disability, but we have a statement in the beginning that says, BCIL is affirmative of higher, blah, blah, so we basically make a statement at the beginning of the interview, that basically says, this is a safe place for you to disclose if you have a disability because that's something we value. Because I've had people, I've encourage them to apply for a job, and he says, a really close friend of mine. I've known since '87. And he says, but I have a psyche disability. No, mention it. That's good. You know what I mean? And he couldn't understand that. But, in your board development, as you are recruiting board, if you make a comfortable place for them, they may in fact disclose more than may be visible, it may be obvious if they have a physical impairment of some sort, but they may have a type of disability, but again, if you're looking for dynamic and qualified folks, oftentimes they may have a problem with that hurdle. AUDIENCE MEMBER: We keep getting dynamic and qualified folks. We don't get dynamic and qualified folks who are also people with psychiatric disabilities. We get them who are wheelchair users, et cetera. JUSTIN BROWN: Go to the back and over here. AUDIENCE MEMBER: I wanted to make a comment about the importance about board development in this, and I really kind of slide towards Mike's comment. You really, you know, when you assess your board, or the board does a self-assessment, you come up with needs, how is this person going to contribute to one of the needs that the board has? And then you go after folks, based on those needs. In terms of Colorado discussion, there's no reason why the individual that he had identified couldn't be used as part of your board development process, just because he doesn't want to be on the board or can't be on the board that doesn't mean he can't come and present to your Board of Directors as part of your board development, board training activities. So that would be my suggestion. Find out what you need on your board, and then go after people who meet that need. That's a really good strategy to use. JUSTIN BROWN: Going to go here and then you're next. Please be sure to speak right into the mic. AUDIENCE MEMBER: I want to echo that, because every board that I've ever helped build or been on, it's always developed by the roles of the board. What roles do you want the board members to play and then, I know now that there are some boards that do blind recruiting so you can put on there what you're looking for and what you need, and without asking directly if they have disabilities and you can ask for that. So you know, I don't think it's so hard anymore, but that notion of, like, building a board around all your friends, you know, that's like a bad move, I think. AUDIENCE MEMBER: I think we're way past what any warm body will do, in terms of building boards for CILs. Way past that. AUDIENCE MEMBER: I think it's important to have a representative of cross-disability on your board, but I am always cautious when someone talks about blah, blah disability is the most marginalized, because I don't want anybody with a personal agenda. I want them to represent what their passion is without thinking it's more important than the next one because then you end up with a divisive board. DANIEL FISHER: Let me just underline, in terms of function. Mary, is that right, from Hawaii? Susan. Excuse me, from Hawaii, you were saying you looked at the role that the people play. What I think we're saying here is that a primary role for someone with a psychiatric disability on a CIL board is to really represent the role of advocacy. And that that's missing in a lot of situations. So because we're talking really about how to change the culture of the organization, and a lot of that happens through the board. So it, I think that's one reason that I was bringing up, someone who knows the history, someone who could educate the board by their own experience, someone who, if there was an issue in the community, could bring it to the attention of the board and the CIL, and wouldn't have to always do surveys or monkey surveys or something. They, instead, would actually have a network of communication with people. And could say, the other direction also, we want to do a strategic plan, we'd like to engage your community in that strategic planning. You know, here are some ideas we have, the direction we're interested in, how does that sound to, you know, your community? So it, I think it's, I, you know, I think it was helpful when you were saying, you need to think about the role, and earlier, with Mike too, I was really thinking, well, yeah, we need somebody who is probably an accountant and a lawyer, but this whole conference is about is that there's a lack, there's an issue, a problem here, and that is a lack of representation and voice of people with psychiatric disabilities in the IL movement right now. That AUDIENCE MEMBER: May be a parent (no microphone) DANIEL FISHER: A parent represents parents, that is different maybe there's room for that constituency, that is a constituency. They're actually pretty well represented countrywide. They get into Congress very quickly. They get into state legislators very quickly. It's people, and I, I don't mean, you know, to say, well, some groups are so marginalized, but in point of fact, media-wise, money-wise, and policy and politics-wise, we have, those of us with lived experience much less influence, so if, I mean, my hope is that CILs can actually improve our advocacy, at you know, a state and federal level, and nationally, that's occurred through NCIL. NCIL has been very helpful on a national level. And that then means we're going to advocate much more strongly for issues that involve, you know, not directly but like PCAs, other disability groups we'll do that more readily if we see, oh, we're represented in our interests, so I guess it's, it's just going back to why are we here today? SARAH LAUNDERVILLE: Some of the things I wanted to underscore that we do around board development at VCIL is really around just having skill trainings available for folks to learn around being on boards. The last few people that I recruited or talked to about being on the Board of Directors for VCIL are all people who are peers that came to us. We, the majority of the people that come to us are, that we connect to at a board level are people that want to serve that way, that want to bring voice to what's going on, and I got our last group from this, you know, we did a, took over the state house around budget issues and we had lots of different people doing a sit in, in Vermont and I looked around to some of the louder voices, and I chose some people and I looked around to the people who were fearful of doing that work, and you got to look around to all the different angles and having people that are, you know, have lots of different qualities because of their connections is really important but having folks that have none of that is equally important, because they're representing our movement from a different angle, and so really looking towards all of that, people can learn how to read budgets, people can learn all of these skills around development and all that, but what I want from board members is the direction of this organization, and where's the advocacy work need to come next, and so that's all super important, I think, in terms of that board development, and just if looking, just last point around looking for sort of the, I love, I love that you ask this question honestly, because I think it's a hard question to ask, how do I look for certain groups of people to be represented on my board, and it's brave to ask that question in a group, and I appreciate that. And I think one of the biggest things that I learned is that relationship building, going out in the community, meeting all the different people, asking what do you need? When I talked about earlier in the presentation around our connection to migrant justice in Vermont and what it is that the migrant farmer movement in Vermont who have disabilities, what do they need from us? It's not about what we can provide to them, and that's flipping it has been successful in getting more diversity across the board for our board. AUDIENCE MEMBER: Hi. I think a strong board is absolutely critical to the success of an organization. I think it's also very, very important to understand the roles that board members play, whether it's, you know, president, vice, whatever. I think training is, is also really, really important. But I'm wondering, based on what I've seen in a few different boards and councils that I've been on, it seems to me that it, it becomes hand-picked, you know, and people that won't speak up, and you know, they're picked because they won't speak up, and they're tokens, that you know represent, okay, this is a person with mental health challenges and they're not going to be really, really too strong, they're not going to rock the boat, and so let's have them on this board, and also I found that the board can be can be run more by the executive director, so you might have a director that has more say and goes outside of the role of staff. And then that person becomes, quote, the board, and I've seen that. I wonder how many other people have seen that as well. I don't know. JUSTIN BROWN: I think it's an excellent observation, and you know, it's not just true as we consider inclusion of folks like myself with lived experience, it's really some organizations are very, you know, director centric, and others are more of a community, and I think, you know, for our purposes, for inclusion of folks with lived experience, it's like what Ruthie talked about, how Charlie Carr, the director of the Northeast Independent Living Program found a powerful, strong ally in Pat Deegan, and it wasn't just about building a board, it was about building a friendship, it was about building a community, it was about being in the trenches together, and so, you know, it's hard to do that alone, right? Some people who are executive directors may choose to try to do that alone, but we're more powerful when we pull together as a community. So thank you. We do have some questions, Tim, and we'd like to devote a little bit of this time, I think this has been a rich discussion, right, and I really echo what was said about people's courage to put forward where they're at and what their challenges are. These are processes that take real determination to bring about greater inclusivity, the beginning is just to acknowledge that each us, Boston has been doing this for how long now? AUDIENCE MEMBER: (No mic). JUSTIN BROWN: Thirty years, 20 years, and you've been doing this for five. Each of us is in a different place in this process. And the hope in coming together, is that we ally with each other, we create a vision of what's possible but we're also supportive and encouraging to each other. So, Tim, you have some questions for us, and we're here to do our best to answer them. SARAH LAUNDERVILLE: This is not to be disrespectful to the groups that have been around for a long time and we're one of them as well, so I'm going to say as a VCIL thing, I think there's real value of folks that are new to this as well. I wanted to say that, we keep saying over and over, right? You guys agree. I think sometimes those boards that we're talking about, the ones that are, you know, set in their ways and all that, because they've been around for a long time and it's really hard to break down those barriers, so just wanted to say that out loud. AUDIENCE MEMBER: I think the oldest CIL in the room, I want to echo that, because it stresses me out when people say, you know, BCIL has been around for 41 years, of course, you guy us are going to be perfect at that, because, no, A, no. But B, other, other ILCs are doing things better than we are. We're here to learn, but also other ILCs need to believe that they can do things better than we are and better than they are. And I mean, you know, sometimes an ILC that only been around for four years doesn't have a lot of the baggage, so, yeah. TIM FUCHS: Great. Thanks so much again for staying engaged to the post its, so we're going to use these next 25 minutes before the break to delve into some of the questions and comments you all had from this morning. First, Dan, someone was wondering if you could elaborate on eCPR. Is there a protocol or formal training for people to learn more about the details of that? DANIEL FISHER: Yes, there is a protocol. I'll give you a little bit more detail about emotional CPR. First of all, it's developed from myself and about 20 other people across the country's lived experience. So it's very much based on principles of recovery and peer support. But it's for everyone, it's for, it's not just for peers, it's not just for mental health workers. It's for anybody to help anybody else through emotional distress. And you don't identify somebody as having a psychiatric disability, and I think in many ways, it can be very helpful in CILs, like the example of receptionist who got very upset, you know, and felt they had to call the police because someone was angry. If everyone in the center had emotional CPR training, then they wouldn't say, oh, you know, this person has a psychiatric problem and they must be, you know, sent to the Emergency Room. It would be just another person, and you first would approach them as a person first, and then a diagnosis second. The actual training that we do is two days. But it can be divided up. We now have 20 trainers across the country. We have usually a trainer, two trainers or a trainer facilitator to do the training for 16 people for two days. And then we have a process for training people to be facilitators, which is we just bring them in as apprentices to assist us, we did have a train the trainer where we set up a mock training but that doesn't work as well, what's it like to actually assist in a training, and the training itself, a lot of it is hands on, role play, so people can really get experience in helping somebody through some emotional difficulty, and we ask people to recall a real event in their life, not a script, but something where they really have felt upset and maybe they still feel a little upset about it, and so we call them really real plays, not role plays, and we have someone assist them and we have two people, we call reflectors, and they assist in the process, somebody is having difficulty. The most frequent trap that people run into, I think I mention briefly, is the person who is assisting, or supporting often wants to fix or solve the person's problem. Oh, you know, you're anxious, you should maybe go for a run, or why not journal and what this does, it short circuits the person's capacity to really connect on an emotional level. We try to encourage people to be authentic when they're assisting someone else, because that's what people want most of all, is an authentic human being. They don't want an automaton they don't want someone who recites, you know, I read this somewhere, and it's very good for suicide prevention because Assist, and some of the other suicide prevention neglect the connecting part. And we spend a lot of time on how people can learn to nonverbally connect with somebody who is in distress, and we, and we're doing a role play and somebody had, have you heard of Assist training for suicide prevention? Haven't heard about it? There are a lot of suicide, also QPR, which is different from eCPR. Question, QPR. Question, something RUTHIE POOLE: I can't remember but could you talk about the down side of Mental Health First Aid, very quickly? DANIEL FISHER: So, just quickly about the suicide prevention, we had, person was doing a role play, and the person in distress, which comes up fairly often, I'm not sure about the future. Not going far along and a person had ASSIST training started firing a set of questions. How, what's your future look like? Do you have a plan? Do you have a weapon? Have you tried suicide before? Because they'd been taught a series of questions to ask, before they even connect. And quite honestly, person who was in the, I'm not sure about the future had probably more questions about the future. Mental Health First Aid, how many people have heard about it? You've heard about it? Yeah, yeah. Yeah, I heard about it. Okay. Well Mental Health First Aid looked good at first, came to the U.S. about 2008, sponsored primarily about the National Council on Behavioral Health, which is the umbrella organization for all the community mental health centers, kind of a money maker for them. RUTHIE POOLE: 23,000 organizations, Dan, I learned. DANIEL FISHER: A lot of organizations doing the training, primarily it trains the lay public to identify people that fit into a diagnostic category, they teach you what are the diagnostic criteria for different diagnostic groups, so that you can identify if somebody, supposedly, has bipolar disorder or schizophrenia or major depression, and then refer to a professional. Quite honestly, it looks like it could increase stigma, not decrease it. The more people that are diagnosing, not necessarily the best, better, and it doesn't really give the skills or the confidence for helping somebody right at that time, so emotional CPR is like CPR for, you know, somebody having cardiac condition. You can't necessarily wait for a professional to come. What can you do to help somebody right at that moment to improve the communication, to help them through, you know, the crisis they may be in, and as I said before, yesterday, if it's, or this morning, if it's too much of a crisis, yeah, then you do try to find somebody. But in many, many cases, you can actually help somebody through it. It's a long answer. TIM FUCHS: That's good. AUDIENCE MEMBER: Can I ask a question about that? Mental Health America, where are they on that? Because I know they sponsored a training in my community. DANIEL FISHER: What did they fund? A Mental Health First Aid training or an emotional CPR? AUDIENCE MEMBER: Mental Health America. Advocacy organization, first time I've heard. DANIEL FISHER: They have funded emotional CPR training, not in Maryland, I don't know of. AUDIENCE MEMBER: I'm in Virginia. But what I'm saying nationally, Mental Health America needs to come out with this information because it's not in the communities. Our local Mental Health America sponsored a Mental Health First Aid training. DANIEL FISHER: It's up to the different Mental Health Associations. If you're interested in this approach, you can go to our website and get information. We could send you a video. You could advocate to decision-makers, you could advocate to Mental Health America. We've been working on the national level with Mental Health America and they've shown interest but they had a change in leadership, so we'll have to, will have to start over. But there are local chapters who have sponsored emotional CPR also. AUDIENCE MEMBER: It makes perfect sense but didn't until you told me. DANIEL FISHER: I'm glad you asked. MIKE BACHHUBER: If I could just add on to the question what about Mental Health America, we all know, and local levels we work with various mental health organizations, and Mental Health America is one of the more common ones, the National Alliance on Mental Illness is another one. And chapter to chapter differ quite a bit. Some of them give consumers a real voice. Some of them not so much. They're primarily parent led or provider led. And so if you have a good relationship with your local chapter of any of these organizations, that's great. Always, I think in IL, we should always be keeping that focus of, you know, does, is the voice of the consumer heard? And controlling, or is the voice of someone else controlling what's going on, when we decide how closely we work with those kinds of organizations? RUTHIE POOLE: Could I be a little direct about that? Yeah, I'm never direct. So one of the concerns in Massachusetts, what we do, oh, shush. Totally teasing me. I have to stand over here now. So we ally with NAMI Mass, National Alliance on Mental Illness around the issues, we agree on, and there's many, many issues we agree on. However, some of the leadership in NAMI Mass thinks that electroconvulsive therapy shock treatment is the best thing since sliced bread. Katie Dukakis is on their board and she's the national spokesperson for ECT, so we don't ally with them on that. Some of their board members believe in involuntary outpatient commitment. Forced treatment is the most dangerous thing facing us. And when you say it only happens to some people, I've shared with you, I was locked up for five weeks just two years ago against my will. And I know my rights, and I couldn't get my rights enforced. And I have a lot of privilege, so folks who don't have that privilege have even fewer rights. So just to be cautious, and I think Mike was saying in nicer Midwestern way, so I'm going to say it more directly, please be cautious. SARAH LAUNDERVILLE: Thanks Ruthie, other thing I just wanted to say, I was joking with Ruthie a second ago is pharmaceutical companies are often big funders, so really check when you are developing an advocacy agenda or working with another group that is developing that advocacy agenda and they're sending out lobbyists or advocates, check where is the funding stream coming from? Sometimes these folks that want more medications to be in the hospitals, or quicker times to have forced medication, often are funded by pharmaceutical companies. Same as we do with physical disabilities, right? It's just another slant that we really need to look at. RUTHIE POOLE: Sorry, I really will shut up after this, I know you don't believe me. When she said I got a full scholarship to the National Council net con, they call it the National Council on Behavioral Health, 23,000 organizations, very, very powerful, brought Mental Health First Aid from New Zealand or Australia. Australia. They even had this big old koala dressed up as the Mental Health First Aid Koala. It was a little scary. I was like: am I in a Felini film or a balanced acid trip? I'm not sure which. What was really scary at this conference, I knew there wouldn't be many people out with lived experience. There were about 50 of us out of 5,000, who I thought would mostly be there as providers. I was wrong. It was mostly pharmaceutical companies, and insurance companies. And so I just want to leave that with you on who is behind some of this stuff. AUDIENCE MEMBER: I believe you. TIM FUCHS: Okay, so someone else asked for more nuts and bolts on funding. Well thankfully, coming up next is the overview of funding. I do want to acknowledge too that there was a sixth presenter that we had invited who wasn't able to be here for health reasons, and she had some kind of unique approach to funding, and we were sorry that we weren't able to share it, but it was sort of out of our hands. If we are able to get any of her materials to share, we'll certainly put it on the web page and share with you all, wasn't something she could do at the time. Okay. In organizations where a CPS is duly supervised by a clinical person and another CPS, how would the division of labor work? By a clinical person and another CPS. JUSTIN BROWN: So this can happen in various ways, but I think what I would say, and I think someone spoke to this before, is that although you may have to have, you know, because of funding structures, you may have to have a clinical person at the top of the organization. We often have folks who are both clinical and peers in some of those high positions, like advocates in Framingham, in Massachusetts. But what we're talking about, right, are nonprofit organizations that are funded through the Department of Mental Health, and in many, many, many cases, the peer is not really supervised by somebody who is part of our peer movement. And sometimes it's kind of a peer consultant who comes in and meets with people once a month, but what we're really asking for is that all peers have direct supervision from someone who is trained to supervise peers, not trained as a clinician primarily, and that doesn't always happen. I guess, you know, sometimes frankly the peer supervision is almost secondary to the clinical supervision, and that, I think often leaves the peer specialist feeling conflicted. I think that's part of this question, as to who, what set of values, in a sense, am I responsible for? We have very clear values in our CPS training that often are inconsistent with the clinical role because we're mutual as opposed to the expert, and we're collaborative as opposed to directive. RUTHIE POOLE: It's very interesting, when Justin was talking about advocates, that's a private nonprofit that has a thousand employees. They're based in Framingham, Mass, which is just west of Boston. They serve folks with intellectual disabilities and they have one division and their other division is mental health. They run residential, they run clinics, they run all kinds of stuff. But very interesting, they have, how they do their peer specialist, as you were alluding to, is they're their own little division. And the head of that division, why he has such respect in management, is he worked there for 25 years, not being out. They knew him as a social worker who was very well respected, and then 25 years later, he said, you know what? I have lived experience. And so he already had the credibility, frankly. And so he has a lot of power. That's probably the only agency DMH vendor I would ever work for because they have such integrity there. But I want to be honest, that that's the exception and not the rule in Massachusetts. MIKE BACHHUBER: I think in Wisconsin, the way that it works, where there's a supervisor who is a peer is, where services are contracted out to another organization like an IL center that provides the services, so the CPS supervisor is another consumer who's trained in CPS, provides direct supervision. Their role is to provide services under a plan of care that comes through the system and so the medical supervision is fairly limited but they, the medical folks are in control of developing plan of care and so it, it does tend to be uneasy but it does also provide a layer of protection for the CPS. DANIEL FISHER: Mention, first of all, say something about this a little bit later, there is no requirement really that it be a clinician as a supervisor. CMS said, has left it up to the state to determine who would qualify as a supervisor of a CPS. And two states, Pennsylvania and Arizona, have actually specified that a peer can be the supervisor of CPS. And they also make sure that if it's a non-peer that they have to take a course in certified peer specialist. Yeah. So they, because, in order to be a supervisor, you have to be able to be qualified what you're supervising, so they make sure that, you know, even if somebody, you know, PhD or M.D., and you know, psychiatry, psychology, they still have to take the CPS training themselves in order to be a supervisor. TIM FUCHS: Good. Okay. Someone just reminded us, cautioned us, to remember when that we talk about people who might have a primary disability that's physical, that if they disclose lived experience we need to respect them not as an ally but as a peer. And so I thought that was a good comment, so thank you for sharing that. Some reassurance, some green cards from those of you that love to hear that folks are making it work. A shout-out to Lori, our CART writer, and I agree. (Thank you!) Applause I'm sure you have all worked with a CART writer who has trouble keeping up and having accurate CART is fantastic, and we don't take it for granted, so thank you. Ruthie, someone loved your connection and talking about Joseph Flecher and love distribution so thank you for that. I thank you again for using these. I know we haven't swept the room in 15 minutes, we will address those. We'll read them at the end of the day and address them in the morning.