 Okay, so it's my pleasure now to welcome my colleague Dr. Don Mordechai. Don, a few years ago, was asked to add to his set of responsibilities at Kaiser Permanente, where he was the leader for psychiatry for Kaiser Permanente in Northern California to take on the role of leading the transformation of mental health and wellness throughout Kaiser Permanente nationally. He's been with Kaiser Permanente since 2003. Gee, Don, this is all this is new stuff for me that I'm that I'm learning here. He trained at Stanford University, the School of Medicine in child and adolescent, as well as adult psychiatry. So he's got the entire span covered in terms of no matter who you are, Don's your guy. Also worked patients with developmental disorders, ADHD, and the entire range of general psychiatry issues, particularly interested in working with with adolescents and young adults. And of course, in his free time, he continues to teach as an adjunct professor of psychiatry at Stanford's School of Medicine. So Don's going to lead us through our next panel and I think make a few other remarks about what's going on at Kaiser Permanente. Don, thank you. Tony, thank you. Good morning, everybody. You feel a little far away. So I may try to be like bigger up here. But so I wanted to thank Tony as our government relations host from Kaiser Permanente. I wanted to thank the Center for Total Health, the whole government relations team. And mostly I want to thank all of you who are here on this day to talk about the topic that is obviously near and dear to my heart, but has really become very important to Kaiser Permanente as a whole. We really see mental health and wellness as a central part of our strategy going forward. We like to talk about total health, mind, body, and spirit. And this is really our efforts around the mind and I would say around the spirit as well. Kaiser Permanente, for those of you who don't know, we're the largest private integrated insurance healthcare company in the country. We have about 11.8 million members. If I wander, is that okay? I'm looking at the AV people. Like can I? Oh, cool. I feel much better. So conservatively we do about four million plus mental health and addiction care visits a year. So we're a very large provider as well as an insurer that's integrated with our care system for primary care, specialty care, all of that. We think it's a pretty great model and a great way to do both mental health care and all care. We are leading a process to do some important things within mental health. We see that we need to focus both within the specialty care system but also within the primary care system as well to do integration the way that we can. In terms of specialty care, we're looking at a few things. One is access. We believe that access is simply fundamental to getting mental health care right. And in some ways it is starting to feel like a social justice issue to some extent because there's national mental health care parity. The ACA is still in effect and yet if you can't find a mental health provider, if you can't find a child psychiatrist or a child therapist, there's no access. There's no parity there. So we take access extremely seriously. The second thing we're doing is around what we call feedback informed care, which is to bring measurement based care into mental health because we know now that there are ways to measure improvement and what works and what doesn't work in mental health care. And yet mental health care has been lagging as a branch of medical care for a long time in terms of using those kind of measurement based approaches. So we like to talk about it as if you were measuring blood pressure, right? People can come in for a check. We can do patient reported outcomes to assess how they're doing. We can use those outcomes with an individual to track progress over time and say, hey, things are getting better. That's great. What are you doing that's working? Or things aren't getting better, right? Your blood pressure is not getting under control. We need to change what we're doing. And then of course we can aggregate all that information to say, well, how is a system can we get better? What can we do as a system to take better care of our members? It has helped us learn things like which kinds of visits are most important to people getting better with an episode of major depression? Is it individual therapy visits? Is it group therapy visits? Is it medication management visits? What combination of those visits provides the best outcomes for people? So we're very excited about that. We think that's the way that the whole country system of mental health care should go so that we can demonstrate the worth of this very important care that we're providing. And the last thing that we're working on is around suicide prevention. We feel like that is a sort of top-line issue that all care systems need to be paying attention to. We know that the suicide rate after dipping for many years is now on the rise again. That suicide is the second leading cause of death among young people after accidents. And that's just not the way it should be in our society. And we think we can change that. We're doing some exciting predictive analytics work on that that I would love to tell you more about at length, but I will not do that right now. But I may have a chance later if you want to hear more about that. In terms of primary care, we have a project around depression care management where we're trying to really bring impact-like efforts into primary care because we know that we can take care of a lot of these things further upstream and get people better earlier such that they might not even need to go into specialty mental health care. There's proven models for that and we feel like if Kaiser Permanente can't do it, nobody can do it. So we're really pushing on that throughout our program. So with that, I mean, you heard a lot from Pete. I really appreciated what he had to say. If you don't leave that feeling disturbed, maybe hopeful too, but disturbed about the way we're dealing with mental health care in our country, that was striking to me. We, of course, see similar issues. We have workforce issues. We know that there aren't enough people to provide mental health care throughout our country. We have fragmentation issues. So even where people are covered, even in our integrated system, some of the people we take care of who are Medicaid funded, they can get mental health care in our system, but addiction care, they have to go back to the counties, right? Doesn't make a lot of sense to us in our integrated system. And a lot of times we see that the counties don't really have the resources to provide that care. So then it really doesn't make sense. And then, of course, there are the resource issues. As Pete said, I think we're simply not spending enough money in the right places to take care of people. It's like, as if all of you don't know that, but I think it bears saying. So what I've been asked to do today is to sort of build upon Pete's introduction to continue this theme of how do we give voice to both people, consumers, patients, however you want to call them, who are dealing with mental health issues themselves and their family members. And I'm thrilled I'll be introducing the panel in a little bit. But along with this theme of giving people voice, Kaiser Permanente has invested quite a bit over the past couple of years in an effort we call Find Your Words. And this is a public health awareness campaign around defeating stigma around mental health issues. I wonder how many people saw the Find Your Words ad with the young African American boy walking through the streets of Los Angeles. Raise your hands. So a fair number. We actually showed it throughout the country. It's not meant to be a Kaiser Permanente ad, so we didn't just show it in Kaiser Permanente markets. We do happen to be in Atlanta, but it was on during the Super Bowl in the Atlanta market, which I just think is so cool, like an ad about mental health stigma to on during the Super Bowl. So we're continuing that effort. This year we have a new public health awareness campaign ad that I'm going to show in just a moment. We've done a large demographically diverse poll looking at mental health attitudes in the United States. Just a few interesting things about that. About 70% of people feel like attitudes about mental health and being open about mental health are getting better. About the same amount of people feel like, you know what, I'm ready to do my part. I want to help people who I think may be struggling with these things. On the negative side, more than half of people felt like depression is at least in part due to personal weakness or failing, which to me is that old stigmoladen, we got to move past that attitude because that's the kind of attitude that makes people say, okay, there's something wrong with me. I'm not going to talk about it. I'm not going to raise my hand to get care for it. I'm not going to get better. We can do a lot better than that in our society. So with that, let me show the find your words spot. It's about a 30 second spot. And can we get that up there? Excellent. So just 30 seconds, no faces, no words. But I think really sets a kind of tension about, oh, what's happening with this person? Oh, what's this person going to say? And then, of course, it leaves you hanging. One thing we saw in our polls is that people don't really know what to say to start those conversations. So we put up this ad. If you go to findyourwords.org, which I would encourage you to do, there's lots of great resources about how do you start that conversation, right? How do you seek care if you're an individual struggling? How do you communicate with your loved ones that you think may be struggling? We make connections to our partner organizations, NAMI, Mental Health America, Crisis Text Line, the Suicide Prevention Hotline. And it's wide open to anybody who goes to the website. So we're pleased with that. And then on the website, we also have StoryCorps. How many people have heard of StoryCorps? We're in D.C., so I figure there are a lot of NPR listeners here. So StoryCorps is a project to try and gather America's stories, if you will. And we asked them to gather stories about people interacting with each other who have mental health conditions. And what we wanted to do is show you one of these stories. This is available on the website. A couple pitches for the website. It's mobile-enabled, so it looks beautiful on your phones. And it also is in Spanish. And Pete Early was talking about the importance of resources in other languages. So if we could show the Al Smith video. As a kid, I had this feeling inside that I never really could put a label on. And one of my first years of college, I was in an English class, and existentialism came up. The teacher was describing it. I felt like she was describing how I feel. And I never knew there's a word for this. And other people think this too. There's this one quote by Kierkegaard, I think. And basically, it said, I went to the party, and I was the life of the party, and I made everyone laugh and smile, and I toasted and talked, and then I went home, and I wanted to shoot myself. And that was it right there. This is like before Facebook. I think it was on Myspace for my little quote about myself. I said, I love life. I'm soaking it up. I can't learn enough. It's so exciting. And then I can sink into a black hole of despair. Not like I want to kill myself, but I don't want to exist anymore. You're just questioning what's it all worth. Yeah. It's like hard to get out of bed. And I had panic anxiety disorder where I had trouble breathing. Your heart just starts pounding, pounding, pounding. I felt like I was having a heart attack. So I went to a breathing therapist. And then I tried yoga. I tried acupuncture. And I still was so depressed. And I was just like, I need something. I'm going to get on. But when everybody asks, how did we meet? I jokingly say, I stalked her, but I certainly don't want to endorse that kind of behavior. But I heard your punk rock all girl band and finally got the guts to say hi to you. And you asked me to play drums on your zombie band project. So that's kind of where it started. We fell in love by our love of music. Meeting you and when we started dating was refreshing because when you found out I was on medication for depression, your reaction to that was nice because you told me you were also on medication for ADD. And I've never felt pressure from you to get off my medicine or never felt like you judged me for being on meds. And that's just been really nice because in past relationships, I've had people try to say like, oh, well, we'll get you off that, you know, or something like they didn't really understand me. I've never really judged anyone for anything that they did didn't do or medication they were on, you know, because it's it's obviously by no fault of their own. So it's hard to fault somebody for trying to help themselves. So I'm glad that you weren't feeling judged by me. You also went to therapy for a while as I did. And I think both of us realized that therapy can be a really good thing for people who are struggling. I can think of one therapist that literally saved my life. I don't even know if I would be here if it weren't for her. So now you can enjoy your day on an even kill. How does that feel? I find a joy in the little things in life. And I just try to be thankful for what I have. There's so many good things you can read and awesome Bolton boards and things. People just talking about how they feel. And it is calming to know that you're not alone. You are not alone. And just remember that. So those are our public facing efforts around raising mental health awareness and trying to break through the silence and the stigma that we feel like is really holding people back in terms of getting care. We're on a journey in Kaiser Permanente to be the nation's best mental health and wellness and addiction care program in the country. Part of that journey very explicitly is to be is to put the voice of the patient the member the consumer at the center of what we do. And with that I want to lead us into a discussion about that with two guests that I'm really thrilled to introduce to you. Karis Merrick is the director of the office of consumer affairs for the substance abuse and mental health services administration. She holds a master's degree in organizational psychology from the California School of Professional Psychology of Alliance International University and a master's degree in business administration from Case Western Reserve University. Karis do you want to come out and join us? Karis you are sitting second chair right behind me. And then Mary Gilliberty is the chief executive officer of the National Alliance on Mental Illness. You heard Pete early talking about Nami earlier. Prior to joining Nami she served as a section chief in the office for civil rights at the U.S. Department of Health and Human Services. She holds a bachelor's degree from Harvard College and a law degree from Yale Law School. So welcome both of you and I'm gonna I'm gonna switch our cards Mary. Oh okay. But thank you. I wanted to sit over there anyway. So I just want to open up by giving you to a chance to talk a little bit about yourselves and your organization. I'm gonna sit like this so I can see you both. So tell us some of your story. Tell us about the organization that you're with now and its role and why is it important to do what we're doing today. Karis do you want to start? So I'll start but I want to sort of start in a different way because I'm introduced in my organizational role and I'm not here representing my organization per se. You'll hear from our new assistant secretary for mental health and substance use. Dr. McCann's cats later on this afternoon so I do not want to steal her thunder. So I want her to have all the thunder and I'll take some lightning. I don't know what I'll take. But anyway so what I prefer to do is just introduce myself to you as just as an individual like who am I as a person and I had some slides I don't know if they're there but I'm a very visual person so this helps me sort of keep on track. We do have your slides if you want them. Okay so as you see I just said what I said there so I am on track without the slides but now you see it. All right so you can go to the next slide. So yeah that is cutest pie is it not? Everybody has to go aww aww right okay participate it's all good so anyway that's me and I'm you know before anybody knew anything about me I'm a little girl. I'm clearly I have a brother so I'm a sister I guess he's a loving brother however he may be sucking the life right out of me at that moment I do not know. I am clearly African American I'm a person of color I'm also Muscogee Creek Indian that picture was taken on a tabletop in Bremelhaven Germany which is where I was born so I'm an army brat or known as a global nomad and later on in life well and that my family is huge and that's why I kind of love this picture because it contextualizes everything about me that I bring to the table that's important to me whether it be in my work role or whether it be in my quote-unquote patient role so I am a person with lived experience of a mental illness and I have a diagnosis of schizophrenia or schizoaffective disorder depending upon who you ask and what day you ask them and I think those are some of the things that will really ground some of my discussion here with you today. Hello everybody I'm Mary Gillarberti I'm the chief executive officer of NAMI and I guess I thought I would tell you a little bit about the early part of my story because it's kind of relevant to why I think it's so important to talk about mental health and mental illness so when I went to college I didn't know anything about mental illness it hadn't I hadn't had an experience with it no anything about it and I met a dear friend who became one of my sweet map mates who had major depression and I basically said and did everything NAMI tells you not to do you can look it up on our website I did them all cheer up look on the bright side look where we are you know everybody loves you all these things that only serve to let her know that I didn't have a clue what she was going through and so you know I let her feel alone and during my last year of college she attempted suicide we graduated she was supposed to come and visit me and she cancelled and then she died by suicide and for me this issue is really important because it's so personal and important to be that support for somebody and also because it taught me the really hard way that these illnesses are lethal and I think we forget that sometimes that people think of these things as things you can will your way out of or not that serious and yet they are very serious and and we can make a tremendous difference if we get in early because 75 percent of these conditions onset before age 24 so we can make an enormous difference and that's what at NAMI we really try to do so we have I would say three basic beliefs one is you are not alone right that is that is core to what we are and what we do so we say to families to people with mental illness you are not alone and we teach everybody else how to make sure they don't feel alone as well we also believe that knowledge is power so we spend a lot of our time empowering people by teaching them we teach them about the conditions we teach them about the various kinds of treatment and we help people help themselves we talk a lot about how we help people build better lives we don't build it for them and then finally I would say we fight injustice because at the core we believe that what happens to people with these conditions is fundamentally unjust and wrong and I you heard it this morning I mean there are no other conditions that I can think of where you wind up in jail because you are so ill there are no other conditions that I can think of where the shortages are as critical as they are in our field I recently had the privilege of being at a child psychiatry reception and I somebody said to me you know you look kind of overwhelmed and I said I can't believe there are like child psychologists I spent psychiatrist I spend so much time trying to find them I felt like I was in a room of unicorns and that's just fundamentally unjust and as the CEO of NAMI I take calls all the time from families and individuals all the time the first thing I ask them is what's the issue the second thing I ask them is do you need it covered by insurance American Heart Association is not asking that question American Diabetes Association is not asking that question and someday I don't want to be asking that question. I just want to add about the workforce issue you know when I so I'll just say in my role in the Office of Consumer Affairs at SAMHSA the role is to represent the lived experience the consumer voice as well as the adult family voice because we do have a child and adolescent family branch that represents parents of transitional age youth and youth and children but as a person with lived experience when I moved here four years ago from Los Angeles to the DC area to take the job I had to find a new psychiatrist and I'll tell you there are plenty out there but as soon as they heard my diagnosis there aren't plenty out there so as I think Pete was saying you know and here it is you know 2017 going into 2018 my psychiatrist is still in California because it's very very difficult to go and they'll say come see me and I stopped going to see them and I had to ask them first do you work with people with schizophrenia and the answer is no so access is one thing building a workforce is another thing ensuring we're asking the right question about what what skill sets and the folks that people are willing and trained to work with is I think another deeper question just can't be add more psychiatrist I think that's going to be really a critical thing absolutely I'm having them actually treat people who have the most serious conditions and then just trying to find out who has the evidence-based practice that you might be looking for for whatever condition it is that you have is another whole area I mean I think about it I know more about the food I eat because they make them put it on the boxes than I do when I was looking for a therapist for someone in my family she wanted to see someone trained in CBT and it was really hard to figure out if they really had the training or they just had some you know weekend thing or whatever it was for schizophrenia it's incredibly hard to find people who are trained to do that kind of therapy for people with schizophrenia I mean you're looking for a needle in a haystack and to me there ought to be more transparency and knowledge for people seeking help as to what they're getting when they actually get the help is it what we know works right now we don't have that yeah and and keres I know you don't want to take the assistant secretary's thunder but but is it okay to talk about your your your role within samsung because I wasn't aware that there was an office of consumer affairs and so I'm sort of wondering how do you represent the voice of people with lived experience of family of individuals to the federal government I mean how does that work sure so in my role is the director of the office and the office has been in existence for I think palo will kill me because I don't know but what 20 years 20 20 years something like that and I'm the second director of that office and basically what we do is it is not my voice that represents the whole nation what we do is we do sort of stakeholder involvement so we have lots of different mechanisms of hosting meetings expert panels dialogues where we bring in people with a variety of experiences and touches with the mental health system or housing or criminal justice or employment and we will have topical dialogue similar to what kind of what we're doing now but to be more dialoggy out there you know some presentation and then people dialoguing and then we take that information and use that information sometimes to do white papers sometimes to develop what is the plan of action or strategy that we might use for within our strategic plan it might be about materials development things like that and then we don't do that just at the Center for Mental Health Services or at SAMHSA we also do it with our federal partners it could be with HUD it could be with NIMH it could be NIH it could be you know CMS so we we do partner with a lot of other federal agencies and also like NAMI, MHA, NAIDAC, so also in the substance abuse world we or substance use world we also do partnerships recognizing that there is co-occurring and there is a Office of Consumer Affairs in the Center for Substance Abuse Treatment as well and we partner with them. I mean I find that very encouraging that our federal government would want to set something like that up our tough question are people listening well so so you know I will be clear about something you know working for the federal government is filling out forms to get the job that are very intense and there is a box on the form where you have to disclose if you have a mental health disorder and I was forewarned about that and knew that I would have to be honest and pay a huge fine if you're lying and I was worried about whether that would impact my ability to get the job especially when I had my clearance interview with the with the background person and she said so tell me about this do you check yes on the on the mental health it's a long questionnaire I tell you I don't know how many questions but it takes about three days to fill out and I said yeah yeah I do and and she said so what's the diagnosis and I said oh Lordy May here we go and so I said it's schizophrenia and she went what and I'm thinking you know what that is so not the right answer wow it is not the right response it's not what I'm looking for so I had to do a little education with her and really it led to there was already an executive order in place looking at question 21 because there was interest in whether or not there was this intersection between of course violence and mental illness and how can we protect our government employees and I got to serve on the a group working with that executive order so that they could have a better understanding of okay you have to ask the question the question is not going away my thing is how do you ask the question how does the person engage and understand the answer to that question what does it have to do with violence in the first place what are you really looking for and what they were really looking for was behaviors of concern that they'll find regardless of if you have a mental illness so we really help separate that out and then to couch the question in such a way that it won't prevent people from seeking treatment prevent people from applying for positions but really say that you know we just want you to be open and honest and we do encourage people to seek treatment and we do know people can work in sustained jobs in the federal government have a mental health condition so it's a lot of work like that too yeah yeah I mean this this is a large area of stigma in our country these sort of employment questions there's a whole issue around for physicians licensing questions that are different state to state um and you know a similar question have you ever had a mental health condition well you know depression or anxiety these incredibly common conditions and people are faced with the idea of oh well if I answer this in the affirmative I may put my license in jeopardy that's stigma right because it's not asking is there anything that could prevent you from doing your job it's asking you you don't do you have depression anxiety schizophrenia whatever it might be um Mary people know nami right it's very well not as many people as I would like oh really okay I was going to say you have a great brand on my list you know how is it maybe for this audience if not everybody knows how does nami work to bring in the patient voice the consumer voice and the and the family voice because that's the central part of your mission oh absolutely well I think we do it through our advocacy as Pete said I serve on the interagency serious mental illness commission along with him we also do it through our education program so we have provider education programs teacher education programs and the point of those programs is to bring the lived experience to those providers and educators to take them through the eyes of the person living with the condition and their family what does it mean how are you treated and I can give you an example we did something with a hospital system where we showed how it felt for that individual when they came into the hospital and all these staff like sort of swarmed around them and started taking things and doing things and you know you could really feel it when you were watching it but for the hospital staff that was like standard protocol like it wasn't a big deal to have all those people standing around trying to do their jobs and we showed the impact it had on the person and then we showed it if it had taken place a different way if just one or two people had tried to engage in a conversation first before you were grabbing their shoes off and you know doing all this other things to them and so we try to make it really concrete on how what happens in a provider setting influences the person and their family and can make a big difference as to whether someone stays in care or and continues or really says I want no part of this so we spend a fair amount of our time working on that we educate police so Pete mentioned CIT training many many NAMI members are very active in that training they tell their stories and that helps the police officers see things from a new lens and I myself have been told by countless police officers how impactful that is for that makes a big difference and if we want to bring that number down of how many people with mental illness die or are injured and encounters with police we're going to have to obviously add to the mental health service system and also continue that effort training police officers and can you talk a little bit about family to family and peer to peer because when I'm working with patients who are interacting with NAMI or family members what they talk about is the sense of like oh I'm not alone anymore like I think the education is important but but for them it's it's being part of a group that is working together to to deal with this absolutely so family and peer to peer classes that are for family and people with lived experience in their multi-week classes and it's exactly what you just saw and people come and they share their stories so class three and family to family everybody shares their stories and there's an incredible bonding that takes place and it goes to that point of empowerment that I was talking about because people feel empowered from the fact that they're learning a lot that they had no idea I mean many come in and it's really quite shocking to me how little people actually know about their health conditions and if you go to hospitals and see what people get upon discharge for other conditions versus mental health it becomes more understandable but they know very little and so we're teaching so that's empowering but then also they're hearing from everybody around them and they're learning that there's an organization that's actually out there to help fight these issues so we also have a class about becoming an advocate and that piece of empowerment where you go from this is something happening to me to this is something that I'm going to draw meaning from and do something with to change the system either I'm going to change it by being an educator or a presenter or I'm going to you know fight stigma or do something else or at public policy so I'm going to get activated and that's the next stage so that's kind of how we look at it like we give you the the building blocks and then we want to empower you to become one of those people fighting those social forces and fighting public policy I mean we took a thousand people to Capitol Hill this summer to say you are not cutting hundreds of billions of dollars out of our Medicaid it will hurt us and look me in the eye and let me tell you why you know that's a big part of what NAMI does and we had to get a thousand people to come to Washington to want to do that and that's a big part of our job is helping people see that they can make a difference with their voice whether it's at the county level I've gone with my NAMI to fight for more beds in Ellington Virginia or it's at the state level where you're fighting for the mental health resources that seem to get cut all the time or it's at the federal level where somehow somebody thought it was okay to take hundreds of billions of dollars out of the program that serves people with the greatest needs and just to echo some of the things that Mary's saying because it's so interesting we're sitting here together I was introduced to NAMI as a part of my discharge from psychiatric hospitalization and I was introduced to Karen Cher which for my affiliate back in California Karen Cher was a program for families to talk about be sort of supportive to other family members and of course I walk in the room and they're like oh so are you a family member and I'm like sorry I'm a family member what this is a ridiculous question and you know just told you how important my family is yes I'm a family member and they're like oh okay so who's the consumer and I'm like consumer what what do you think like the whole like all of a sudden you get introduced to all this new language and I had to they finally said well who's the who's the sick person in your family dear and I was like oh that'd be me they were really thrilled to see me not so much at the moment but because that was their time and kind of and I walked but as soon as they had heard that all of my family was all the way on the other side of the world they enveloped me and embraced me and you know I affectionately call them my Nami mommies because that's what they did they mothered me and they really helped me and got me more connected which is what the reason why my psychiatrist actually recommended that I go to Nami so much so that the next thing I know like they just grabbed me and go okay you're gonna go take in our own voice and you're gonna go do peer-to-peer and you're gonna go sit on our board and eventually became the board president for the for the national board and having to leave that to go to SAMHSA and I just want to mention getting in early because that's another thing that Nami's been working on and we were very fortunate to have Mrs. Gore support us to get in the program called ending the silence into high schools so we're going into high schools and doing presentations and the secret sauce of the presentations and this won't surprise any of you is a young adult who comes in and talks to the other the students about mental illness and the idea is to really early on try to change the stigma that's driving a lot of this public policy try to encourage help seeking behavior and try to help people support a friend those are really the things that we're trying to do with those programs so we're really trying to get in early the one of the few things we know about mental illness is that if you intervene early you can make a tremendous difference and the other thing we know is the power of personal story and having positive interactions with people who are living with mental illnesses it is evidence or in in literature and in research shown to reduce all sorts of stigma including social distancing so a lot of times people will think oh if I just do the education and tell people about mental illness what it's all about that that will actually reduce reduce stigma and what it does is yes it might help people have a better understanding of what it is but it actually increases social distancing and then the isolation that we struggle with persists because people don't want to have anything to do with us quite frankly so again sort of NAMI provides and other spaces provide opportunities for us to feel like we belong but but I'll be quite honest I have and this is Charis Myrick speaking remember my slide disclaimer is I struggle with things where I'm I'm told when I came into the mental health system I was told I was a member not a member of an insurance policy I get that but I was suddenly a member of this this club that quite frankly if I had to tick off a box I would not have ticked off the box so I didn't appreciate being called a member I understood why because of people not having a sense of belonging but it it was really hard for me to kind of wrap my head around that and I was telling Mary and if somebody could go to my second slide I was telling Mary this year that it's the first time I've had a really serious health condition and when I came up found out that I had lost my voice basically is what happened and when I went to the emergency room I had totally lost my voice and my whole neck was just sore everything was sore and I had to go to the emergency room three times in the third time they finally said well look we see that you're taking medication for a psychiatric disability are you sure it's not in your head and I'm like as much as I would love to sound like Lauren but called no it's not in my head I'm going to sit here until you treat me and eventually what they found out was that I had a massive lump on my on my throat which is really on my thyroid if you could click next on my thyroid and I ended up having thyroid cancer and having to have my thyroid and parathyroid removed and it was really striking though that 20 years ago I had been in the ER because of a car accident and the same thing happened so sometimes I think about policy I think about people I think about processes and I think about the place so the policy around like the electronic health record is probably okay as far as protections are concerned I mean I'm not going to go all into that stealing thunder but how it got executed by the person not so good so they see that I'm taking a medication and then suddenly up comes a discrimination that is not supposed to happen but also I showed this slide because it's a reminder to me of what it feels like when you have schizophrenia and nobody sends you a dang get wall card and even if I don't believe I have a mental illness which I didn't I thought I had holes in my brain just take a picture of it and you will see which my doctor did I don't know how he got that paid for but I didn't have holes in my brain but anyway that's neither here nor there so but the point of it is is that if somebody had said I'm thinking about you I really care about you I hope you stay in this world or something like that it would have been something I got nothing but when I found out I had the thyroid issue I got a buttload of cards oh excuse my French I got a lot of cards is that French yeah well they speak it to you in the hospital they asked are you going to participate in the middle you I'm like what you say I'm sick but I'm supposed to participate in French what but anyway so the whole system sometimes to me is really kind of interesting and how we understand what's happening is really interesting so I got all these get well cards and then my endocrinologist starts asking me about depression and ending my life and I'm thinking oh gosh here we go and she said no no that can happen when you have thyroid disease and like really and I said well actually and so I tell her a little bit not not terribly much and I said if I had said yes would you have known what to do and she said yes and I said that's great so first she was trained well to ask she was not afraid to ask about depression she was not afraid to ask what I end my life and secondarily on discharge instead of getting huge discharge paperwork I got a postcard that told me the five top things to do plus the big paperwork it was amazing so why don't we do that in mental health it's pretty easy I mean it's just a postcard so I just want to point out I'm going to ask for questions from the audience soon so we're going to keep talking a little bit but but please stand up as Tony said it is not acceptable to not have questions so go ahead and get your questions ready Mary you want to pick up on what Kara said about the difference between what's written and then what gets enacted and we see this a lot in communications with families in the healthcare world I mean we hear it all the time that families feel like they're excluded like the system is almost trying to separate out the individual and the family member and one of the reasons that I Nami really strongly supports early episode psychosis programs there's many reasons but one of them is that their default is that the family will be involved like that's that's the norm that's like what they expect to happen and they do everything they can to make that happen and so their rates of family involvement are sky high as are their rates of continued engagement and the 90 percentiles for some of these programs for 20-something year olds which is really high but the reason is because they orient the whole thing in that manner and they orient it toward recovery as well they say what do you want to do for a job you know relationship we want to stay in school they don't start with oh you have this illness and you need to take treatment and you're going to be on this treatment forever they start with what do you want to do and then they link that and so it goes to Kara's point about so much of this is how are you approached is your you know are you approached as a person with dignity with respect with acknowledgement of the goals that you have and you know it's about you or are you approached with this is the system this is how we put you in this box as she said you're a member you know and this is what your path is going to be says we and you're going to do it over here and your family is going to be over here because we have this thing called HIPAA so you don't have to share so you don't want your right sign right here um so you know right don't make it complicated for us by sharing and having to bring in the family question in the back Winston thank you Winston Wong from Kaiser Permanente and thank you Mary and Kieris for not only being champions for this work but also sharing your personal stories so Kieris you mentioned in your personal history about not finding a psychiatrist as you relocate it for your condition it's wondering if you could illuminate that a little bit more was it around the issue of the amount of time that psychiatrist anticipated that they would have to invest in your therapy in your condition or was it also a question of whether the compensation or the renumeration for the kinds of services that you might need became a barrier well considering they didn't even want to talk to me I can't really tell you I mean if I had to guess and this would just be an educated guess um and um it may be around their belief that there would have been a lot of time needed I have a full-time job so how much time are you going to spend with me not much because I got to go to work um so this this idea that you're going to be spending in an ordinal amount of time with me was kind of curious um secondarily um so it may be a preconceived sort of notion um it may be that they're really not trained to do so and I don't want to work with somebody who's not trained to work with somebody with schizophrenia that doesn't make any sense to me either so I'm glad if they're saying no because they don't have the skill set to do so um I didn't really press press the press the issue because it became um and I was telling somebody the other day and and I've never really used this word ever but I was telling somebody the other day that I had this moment of realization that schizophrenia for me has been a thief and it's stolen from me and I'm pissed and I'm angry and I'm very very sad about it and some of the stuff I can't get back and I might be able to sit up here and talk about it and that might be great because I've had the experience but there are things that have been stolen on the front end and as Pete said our lives are ending earlier so there are things that are trying to be stolen on the back end and somebody wants to mess around with me and tell me they're not going to treat me that's unacceptable it's so unacceptable I don't have words for it and I shouldn't be a victim of a thief of an illness I'm not a victim of a thief of them taking my thyroid um they engaged my father they asked me me how do I want my father involved who's important to be involved with me in this whole process they gave me two cards one for a cancer support group one for just a thyroid disease group straight out the back um that didn't happen immediately um for me in mental health care and I don't understand why if we're talking about parity let's really talk about parity this isn't parity so um sorry for my passion but um it really it really is something I'm still mourning I think and I hadn't realized that there's still some mourning for me around some things that I've lost that I will never get back and um also recognizing that I've gained a lot too and this has been um a phenomenal experience just kind of one I wish didn't happen the way it did and hoping that it doesn't happen this way for other people I hear Pete's story and his son and I'm thinking well dad that's me but I'm older how is that possible how's it possible that it's still happening thank you no apologies for passion where the passion panel okay passion where the passion panel uh yeah Nathaniel counts mental health america so um one sort of systemic way we're addressing this right is by consumer advisory groups that sort of all levels of the health care system and we're doing a pretty good job I think in the sort of initial phases of putting consumer groups on boards and all sorts of things um but unfortunately last month I think it was the American Journal of Public Health they came out with a systematic review saying basically there's no evidence or empirical evidence for the effectiveness of consumer advisory boards um and meanwhile you know there's mountains of evidence for the rest of all the value-based payment structures happening and so I was wondering what your thoughts are about sort of developing the science of patient engagement of every level um so it doesn't become like a little hat we put on the top of uh value-based payment so I mean Nathaniel I think part of it is the difference between being on an advisory board and being actually part of the solution um you know if I think about it I could spend every minute of my day on an advisory board I mean we're asked you're asked a lot too and and so you know I think it's the difference between that and someone really wanting to know what the journey is and wanting to look at the journey at every stage and meaningfully figure out if that journey is um working and helping that individual family and so I think that you know looking at advisory boards and what is the level of engagement is it you know you sit there or is it you're really driving what happens and so I wonder if the study was done somehow you know parsing out the ones that are in name versus a more meaningful engagement of that journey what we would find um and that's what I would suggest because you know I tell people all the time I'm not interested in you know just being there to um be window dressing and and I feel many times like I am asked for window dressing I will just say that right out there um because they want to be able to say they had me on the group rather than they had planned to meaningfully make sure that the individual and family voice is engaged in what they are doing from you know and the issue too is are you there in the beginning are you coming in later where they say oh bless this you know um say this is okay or give me comments on it but it's all drafted you know so you can comment but it's due you know so it's got to be commented on so I mean there's just differences in level of engagement that I think are critical if you're going to research these things totally agree in the back hi my name is kim Burton I'm an educator and an advocate on behalf of older adults and late life behavioral health issues and I have a couple things first I want to just say after the first speaker um yeah I lost my place oh oh that what we are seeing are increasingly uh people with behavioral health disorders not necessarily in jails but in nursing homes in assisted living and long-term care settings as we have people with serious mental illness living longer than they have before these are our new quote unquote jails or places where we are um where people are landing I wanted to ask about the use of mental health advanced directives and if you feel that a mental health advanced directives are a um tool that we could be using to perhaps change um treatment and then the other thing I wanted to oh yeah so in in the older adult world we have to put dementia under the umbrella of behavioral health and I know today is about mental illness but one of the things that we're looking at is the workforce and our psychiatric community and the people who do the work for mental illness are also doing the work for the behavioral and psychiatric symptoms of dementia so I was wondering about how you feel about um embracing other illnesses or other disorders that have psychiatric symptoms I mean I can talk about um Olmstead and I know Mary you she's the queen of Olmstead but um just because we we just recently um had a meeting at SAMHSA around Olmstead which is a state um like well you could talk about what it is at the federal level but basically it is around um psychiatric boarding in nursing homes and people not being able to live in the community of their choice um and ensuring that states have what they need and follow their Olmstead ruling in order to um place people in community and not um board them in in nursing homes so I think that's work that we continue to do at SAMHSA Dr. McCants-Cats was not able to make that meeting and we did have again federal partners um aligned with us um at it was a very large meeting with um HUD as well as CMS and SAMHSA and other agencies so um it's it's work that we continue to do and we do recognize that that's a huge problem I mean again from a personal perspective it's like I think I've touched every part of the system in every different way my mother had to yank me literally out of of one of these situations and fight like a dog to get me out um because it was the only um option that was being offered to me uh to be in a nursing home and I was young I mean I was very young and the people that we were seeing in the nursing home were people on oxygen tank and all sorts and it was like my mother was like no no this this is not going to happen so but I'm fortunate to have parents who can do that not everybody has that um and so we continue to work on that yeah so for those who don't know Olmstead is the supreme court ruling where the court said under the Americans with Disabilities Act you had to be served in the most integrated setting appropriate to you and uh when I worked at the office of civil rights I did quite a bit of work under that ruling and as Kara said it applies to people who are in nursing homes so you will see some litigation that has gone on you'll see some policy agreements that have been made to try to move people from nursing homes into the community but it's very scattershot where there's been complaints or where someone's investigated where there's actually a will and I think in so many of the things we've talked about today whether there's a will to change it um is really important and then the financing as Pete said that goes with that with nursing homes you can do things like waivers that allow you to serve people in the community in these cases I just think that the states have not done it done what they could do to serve people in different settings in other instances you can't the IMD exclusion which is the Medicaid program doesn't allow you to bill for facilities that have over 16 beds and the implication of that is that it is quite difficult to do a waiver from that facility so there are reasons why structurally we see some of the things that we see you asked about advanced directives we at NAMI are very supportive of them you can find information on our website about them I think they are a partial answer they're contribute positively to helping people make decisions when they're in a difficult situation they're not a perfect solution because there aren't any um but they do contribute and we certainly support that idea and the last one about dementia I would just say that we collaborate with organizations like the Alzheimer's associations and others in a number of ways we collaborate on our advocacy we work very hard on research we all need more research on the brain I mean one thing we haven't talked about is the fact that in our field there's been really very little breakthrough um new therapies that you can see compared to like oncology and other areas where you're seeing things all the time so we certainly collaborate a lot on pushing for more research to get us to better solutions there in terms of our own advocacy I mean I think that we feel like there are other organizations for whom that is their primary area and so our primary area is mental health conditions like some of the ones we've been talking about today so I think we have time for one more quick question if we can thank you Denise souls back from the National Technical Assistance Network for Children's Behavioral Health my question is actually for both Pete and Mary can you talk a little bit about the timeline for ISMIC I mean 14 commissioners can't possibly come up with everything they need to buy the report to Congress do in December so what's the long-term process and how can people contribute well I think Dr. McCann's cats is coming this afternoon and you know she is um I think extremely committed to the process she um has has indicated that you know this is really a tremendous priority for her and she will be working on the timeline from here our initial report is due to Congress in December right December that's an initial though and then there's quite a while before by statute we have a report due but I think that we are all working and Dr. McCann's cats will ultimately decide how we will have interim markings to check on our progress as we move forward so I would urge you to ask that question this afternoon but those of us on on the group are very grateful for the leadership that she's shown there all right so it sounds like we'll get more on that this afternoon um can we get Karris's last slide up please be able to do that not that well that one's very interesting but not that one not that one that one's very interesting too but not that one this one so um the reason that I want to show this one is the first thing I talked about was what happened in um my care for uh uh my my thyroid issue in getting carts and I was in CVS about two weeks ago and they have this um caring happens when life happens and they're all of these cards that are inspirational they're get well they're all different and then they have these informational cards for um like after surgery for medical conditions for cancer and lo and behold they had one for mental illness they only have five cards these five informational cards and the fact that CVS and um Hallmark decided to do mental illness I don't know how I've never seen anything like it but when I thought of my talk and I used that that slide in the beginning of the greeting cards and in the get well cards and here it is not a couple months later I see this in in the um in the store I felt very hopeful and I just wanted to leave everybody with that piece of hope that somebody's people are doing something and it's not always going to be the mental health system it's going to be people like Hallmark all right um so I I want to thank Charis Myrick and Mary Gilberty for joining us and I think helping us bring this idea of you know how do we bring the the the people who are at the center of this in into the center of it um nothing about us without us is something we hear a lot and I think that's that's key so um thank you for that we have eaten into your break a little bit I hope you will forgive us for that because of the the compelling nature of the people we have to speak to you um and then just quickly before we go to break I wanted to let you know that um there are a couple people out in the audience if you want to know more about Kaiser Permanente's efforts around mental health and wellness uh Kozette Tylak who is the strategy director for mental health and wellness nationally and Peter Nixon uh who's a senior director at our care management institute supporting mental health and wellness so find them if you want to learn more about what we're doing um thank you everybody we're going to reconvene at 1115