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Self-Directed Care for Individuals with Serious Me ...
Presentation and Q&A
Presentation and Q&A
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I'm pleased that you're joining us for today's SMI Advisor webinar, Self-Directed Care for Individuals with Serious Mental Illness. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to help you get the answers you need to care for your patients. And now I'd like to introduce you to the faculty for today's webinar, David Sarche, Megan Cobb, and Patrick Hendry. David Sarche is the Director of the Florida Self-Directed Care Program with NAMI-Collier County, a NAMI program providing alternatives to traditional behavioral health services. David is a licensed mental health counselor and has served primarily as an outpatient therapist and as a health specialist with an assertive community treatment team. At the Florida Self-Directed Care Program, he works with Megan Cobb, a senior life coach and mental health counselor. Megan has worked with survivors of physical and emotional trauma and is an advocate for trauma-informed care. She is passionate about empowering people to create their own unique recovery plans. And finally, Patrick Hendry. Patrick is Vice President of Peer Advocacy Supports and Services for Mental Health America. He provides national advocacy and develops new services and training for peers within the behavioral health system. Patrick has worked as an advocate and initiator of peer-run services for 27 years in a variety of leadership roles, including former Director of NISDAC, as a consultant for the National Council for Behavioral Health, the University of South Florida, SAMHSA, NASHPIT, among many other agencies. David, Megan, and Patrick, thank you for leading today's webinar. Thank you, Amy. And I just want to start off by saying that we have no relationships or conflicts of interest related to the subjects that we'll be discussing today. So this is really a special topic to me. And our learning objectives for today are to define self-determination as it relates to the recovery process, identify the major components of a behavioral health self-directed care program that could fit into your practice, contrast the benefits of behavioral health self-directed care to traditional services, understand the difference between the self-directed and traditional payment models for public mental health service delivery, have a sense of the basic operations of the Florida SDC program in Circuit 20 of Florida, understand the role of a life coach, and recognize the benefits of the self-directed care model. As I said, this topic to me is very important. I mean, everything that we do in behavioral health should always be based in the concepts of human rights and self-determination. And self-directed care is the practical application of self-determination. SAMHSA says that self-determination and self-direction are underlying goals for recovery for people living with psychiatric disabilities. And this is really true if you think about it. For people who live with these conditions, I am one of them. What we want most in our life is to have the ability to make choices for ourself, to set goals, and to try to live the life of our own choosing. Achieving this, though, is often a very slow process of taking back control because we live lives that have sometimes been overwhelmed by the nature of our disabilities. We also rely on a system of services and supports that can cause dependence. So self-determination relates to a person having a purposeful life, having the ability to seek the same goals that all others have related to personal relationships, membership in the community, and establishing an economic future. And these words were said by Tom Nerny, who started the Center for Self-Determination in the 1990s. This quote was from 2004. Tom is no longer with us, but the Center continues on and has really pushed forward the ideas of self-determination. The concepts of self-determination actually came out of the developmental disabilities field. And so sometimes the phraseology of the principles and some of the things that we say in relationship to self-determination may sound a bit different than we might say them in mental health, but the basic principles are the freedom to decide how a person wants to live their life, authority over our finances, support to organize resources in ways that are life enhancing and meaningful to the individual, responsibility to use public dollars wisely, and the recognition of the contribution to communities that can be made by people with disabilities. And finally, confirmation of the important role that individuals must play in a redesigned system of care. Self-determination encompasses some really basic concepts. The ideas of free will, civil rights, human rights, freedom of choice, independence, personal agency, self-direction, and individual responsibility. Now, if you think about it, our system of care for people living with psychiatric disabilities for decades, even centuries, took away most of these concepts from a person's ability to control. We did not have the ability to have free will. Frequently, people were institutionalized for decades at a time, sometimes for their entire life. Civil rights were suspended, as were human rights. Even in my own career, starting in 1991, there were still hospitals around the country where people were treated virtually like animals. Freedom of choice was taken away from us. Even if we were living in the community and seeing a psychiatrist for treatment, very rarely did we get to decide what our own course of treatment would be. We were told, you have a mental illness, you'll always have a mental illness, you have to take medication, you will always take medication, you'll probably never work again, or if you do, it will have to be something very low stress. Luckily, many of us were able to learn from those that came before us that these things were not necessarily true. Independence, the ability to make our own choices, personal agency, responsibility for ourselves, self-direction, which is what we're going to talk about in more depth, and individual responsibility. One of the primary things that we have learned over the last 25 years is that when people take responsibility for their own care, it's far more likely to be beneficial. Self-management is a critical idea in behavioral health. Self-directed care, as I mentioned before, it's a programmatic approach or application of self-determination. In 2002, Florida became the first state to implement a self-directed care program for mental health services. There were other types of programs that gave certain degrees of self-direction, but this Florida self-directed care program was brand new to behavioral health. Again, this is another thing that kind of came to us from developmental disabilities, but we remade it into something that works for us. The original program started in Jacksonville, Florida, and it was conceived by a group of peers, family members, and clinicians. They implemented the first program in 2002, and in 2003, the legislature that had enacted the program was starting to question some of the ways that people were spending money because basically, and David and Megan will explain more how this works, but people got to choose how to utilize their budget based upon certain guidelines provided by the program. In 2003, some of the legislators were saying, well, what do you mean people can spend money on a CD, or what do you mean they could spend money going to McDonald's? In 2004, the state comptroller's office re-approved the use of SDC funds for goods and services related to the individual's recovery goals. What this meant to us was that there might be a very good reason why we would spend money to go to McDonald's. People living with psychiatric disorders frequently live in isolation and the feeling that they have been excluded from their communities. Then they have the opportunity to perhaps meet with a small group of friends at a McDonald's once a week, and this is extremely important to their own growth and their own recovery plan, and that is a proper use of funds. We went on to expand the use of those funds, and David and Megan will talk about some of the ways that they are regulated now and some of the things that are so available and so important to the success of the program. In 2013, there was a report by the National Resource Center for Participant-Directed Services that was funded by the Robert Wood Johnson Foundation. The interviewees reported that self-direction has the potential to enhance recovery, promote engagement and empowerment, and engagement is, again, another absolutely critical element of a successful behavioral health system. One of the most difficult things is engaging people into services, particularly people who have experienced, prior to that, bad experiences with services. It also increases choices and it leads to greater participant satisfaction. Self-direction might help rebalance the mix of services towards community-based support and less emergency or inpatient services. If you think about that, that is our goal. We want to move people away from the deep end of services. We want to make sure that people get the services that keep them out of hospitals, that keep them out of emergency services. Self-directed care has been eminently successful in doing this. Now I'm going to turn it over to David Sarche. David? Yeah, thanks, Patrick. For the next 40 minutes or so, we're going to try to provide a sense of our process in the program and share some nuts and bolts with you. But before I start that, I just want to summarize that, really, the distinguishing feature of self-directed care here is just giving people access to public funds that would normally be channeled through the community mental health system so that they have a lot more options and choices to help themselves in their recovery. And even though we've been around here in Southwest Florida since 2005, the program and programs like it are still very uncommon. So when we enroll people into the program, we try to help instill a sense of ownership in this project and help people understand that they're really pioneers and that the decisions they make and the outcomes in this program determine its acceptance in a much broader scale and the implementation of programs like it around the country. The original concept was that we would recruit a number of providers, clinical providers, that would sign on with us, and then we would create a directory and people could choose from those providers to get their clinical services. And we contacted every provider in our service areas, five counties, and I have to say that the response was underwhelming. And because of that reason, we quickly decided not to limit participants in our program to just enrolled providers. And so we really opened it up to any provider. And the difference that makes from a practical standpoint is when a provider is not enrolled with us, then the coach becomes involved in the process in either making a payment on the person's behalf or reimbursing a participant for money they've spent on their services. And if somebody is enrolled with us, then it streamlines it where we send a voucher with the fee that, by the way, has been determined by the provider. It's not determined by us. But we send a voucher to the provider that gives a three-month time frame and what the agreed-upon fee is per service and the number of services. And then as the participant uses those services, the provider simply sends me an invoice and I send a check back within a day or two. So the turnaround is really fast. And it's essentially on one level, it's a payment model that just gives people access to money and there are no strings attached. Even though the money is coming from the state, it's pretty simple. There are no demands or expectations that are put upon providers. And I just mention all this by way of encouraging providers who may see self-directed care efforts in mental health services in your neck of the woods to really be open to exploring what it would be to enroll in those programs or with those programs and become an active supporter. When I take a phone call from somebody, and I'll mention that we only accept self-referrals, and that's the first step in self-direction, is the person needs to call themselves. Now sometimes they may be in the office of a case manager and the case manager may hand that person the phone or the call may be from a family member and the person is there and they hand them the phone and that's fine. But we do insist that the person initiate their inquiry and their interest in the program. So in that initial phone call, I'm going to do a little screening for eligibility. I'll get to that in a minute. But I also want to get a sense of what that person's expectations are and how they heard about us and what they know about the program. That really says a lot about kind of what their mindset is. I mean, somebody may have heard that they can get their rent paid if they join our program. And that is such a small piece of the program that it really would be a misunderstanding to come into it with that as your major concern. So I do some education in that initial phone call about what an undertaking self-directed care is and the responsibility and accountability that comes with command of those public funds. Another example would be giving a choice to people on the coach that they will be working with and providing a biography of at least two, if not three different coaches. And sometimes a person will just kind of defer and say, well, there's a man picked somebody for me and I'm not going to do that. And I'll let them know there's going to be a lot of choices to be made in navigating this program. And that's one of the first ones. So we do send out, I send out some paperwork that in one form that kind of recaps some of those self, I mean, eligibility requirements. But on the back, there's some questions about different wellness categories. So it gets a person to start thinking about how they're doing or how they think they're doing in areas like mental wellness and physical wellness and work wellness. And that's a good starting point when they engage with the coach for the first time, it gives the coach an idea of kind of where the person's at with these different categories. So our eligibility requirements, I do go over those briefly with the person. I have to be 18 and live in our service area. Everybody's in a poverty situation. We do have to count the household gross income and match that against federal poverty guidelines. The person has to provide us in the process of their enrollment with a recent, as in like within the last three months, a current psychiatric diagnosis. People who have private major medical insurance are not eligible because this program's for people who use public funds for their health, their mental health needs. And people also have to be either receiving social security disability or in the process of applying or appealing. And self-directed care is also mutually exclusive from case management services with the mental health center or assertive community treatment team support. So if a person is enrolling with us, once they are officially enrolled, they have five business days to withdraw and provide a letter from the FACT team or the case manager that they've in fact disengaged from that service. We also, people would say people cannot have a court appointed legal guardian. So they may have a payee, but that's different. And but the court ordered legal guardian, those folks are really not in a position to be self-directing. So that's where our eligibility requirements stand. And I review those with people. If we could go to the next slide. And at this point, Megan Cobb will pick up and describe our process from the coach's point of view. Megan. Hi, everybody. So I am not actually a licensed clinician, but I have been working as a life coach with Florida Self-Directed Care for the past five years. So I'm going to talk a little bit about what does the coaching process look like? What am I actually doing when I work with people? So the slide that you see in front of you is one of the first documents that I would show to and discuss with a person at our first meeting, which we call orientation. So at the time that I first meet someone, we are at on the middle line where it says meet a life coach. I always make sure to stress that it is a noncommittal meeting, which means at the end of our first meeting, which typically lasts an hour, if for any reason a person decides that this is not the right time or is this not the right thing for them, then that's completely fine. If they do decide to go forward, then I ask them to sign a couple of documents, which kind of sets the clock ticking. We work with deadlines for a reason. They exist as an accountability tool to try and help people not just stay on track, but to be responsible for creating their own plans. All in all, people have about two months to complete everything related to improving eligibility and goal planning, but those first two weeks, we're really just focusing on eligibility, which I won't go over again. This whole process, it can kind of be a good indicator of how likely somebody is to follow through with the process because it's an introduction to the workload that a participant in our program is expected to follow. Throughout the goal planning phase of enrollment, that's really what it's all about. Once we know that someone is eligible and we're moving forward, we start doing some self-assessments, including personal outcome measures, list of strengths and skills, self-sufficiency matrix, and a life purpose statement, and all of that really helps to inform what will later become their wellness goals, and typically, the last note I'll say here is people do occasionally not make it through the enrollment process for various reasons. It's just changes in eligibility or information comes to light, or occasionally, people will simply elect to withdraw feeling overwhelmed or like it's not the right time. With that note, if we go to the next slide, I'm going to talk a little bit about what my role is because in self-direction and the person is so much the focus of this process, what am I doing here? I really am here to support people, but not just in creating goals. It's really about helping people to identify their own strengths and resources that are available to them, and it's very much a collaborative working relationship. Even just from the very beginning, the communication that occurs, it's important to establish boundaries that assert that this is not something that's going to be done for a person. It's something they really have to actively engage in. Aside from creating goals, we do encourage involvement in the community. However, that does not mean that we are requiring or trying to push people to work for pay. We're working with people who have various levels of abilities, and so there's a lot of flexibility there. Some people do want to work for pay. Some people simply want to volunteer or want to pursue further education or have people trying to start home-based businesses. We really work to create individualized plans for each person. The informed choice piece here I feel is really important to stress because a lot of people who come to me don't understand their rights fully, and that's something I really want to try and help people realize is that, for example, what is a reasonable accommodation? How can I figure out what that is for me and how that might help me to be more productive? Or what is an alternative therapeutic approach as opposed to traditional, so just sharing that type of information with the people I work with and encouraging them to make their own choices, to work towards independence, and really work towards taking an active role, whereas often people who come to our program have had a history, years and years, of being more passive recipients of wellness services and care, and it's easy to become accustomed to. So when we're asking people to make choices and be active and create their own goals, it's a foreign concept to many people. So it's a learning journey is how I look at it. Okay, and we can go to the next slide, please. Okay, so just a little more specific about the type of services that we provide as coaches, and I really view, with coaching, my goal is to empower people. That's underlying everything that we do. So again, sharing information, sharing resources, and figuring out how can people access those resources and understanding that these choices exist and that people have a right to choose and to assert their needs and whatever that means for them. And the coaching relationship in itself is, depending on how somebody use it, it can really be an opportunity to practice some of these life skills that people may often struggle with, so just communication, you know, and boundaries and assertiveness. And I do want to point out that there's a difference between case management and life coaching. I feel like they're often confused, but, you know, case managers, how coaching differs is we're not doing things for people. We're trying to help people figure out how to do things for themselves so that they can lead a fulfilling, productive life. So it's really looking at the individual as the expert on themselves rather than the professional as the expert. So we do, you know, again, we're trying to help people recognize what their strengths are. Local resources, it's not uncommon for somebody to meet me for the first time and having been at the same place for a number of years and not even realizing that there is somewhere else to go for counseling or for med management. So that is a big part of it, is just kind of educating on different types of approaches and different types of local resources. And the development of SMART goals is, it's like a habit for people to develop. It's a new way of thinking. And so everybody is different, of course, but often people need a lot of support with figuring out how to put these sort of intangible ideas about their mental wellness into specific and measurable terms in a way that's meaningful for them. So certainly a lot of our time is devoted to the development of SMART goals, but also, you know, trying to help them hold themselves accountable and to take action and to discuss it when, you know, if they're not reaching their goals, it just becomes a topic for discussion and something to problem solve, which is an ongoing process. And then as far as the budget, it's, our role is not just to make sure that somebody understands the policies as far as purchasing guidelines go, but also to help them really interpret those guidelines in a way that is personal and unique for that individual and figuring out how can I sort of get creative with this opportunity that's been made available to me and connect it to my goals. And of course, you know, offering support, again, we're not licensed counselors, none of the coaches are at this time, but we are always at the basis of what we're doing is about offering support. So on the next slide, I'm going to talk a little bit about SMART goals and many of you may be familiar with this model. That's what we use when we're helping people develop their wellness goals. And throughout the enrollment process, we do, as I said earlier, a lot of those self-assessments and it's kind of like the brainstorming phase of the goal creation process and kind of picking out which areas of their lives they want to focus their energies on and want to create actual goal sheets. So the specific aspect is really about exploring and finding for each individual, you know, what does being less depressed actually mean for me? Because as we know, 10 different people can have the same diagnosis and it looks 10 different ways. So you want to get really specific about what would it look like if I were improving? What does recovery mean for me? And then figuring out how to measure that can be a little tricky, especially when it comes to mental wellness, because it's not something that's easy to measure. So just kind of finding the language, putting into words their thoughts and their ideas is a big part of it. The attainable, I feel like that's really, really important to discuss throughout the whole process, because we want to make sure as much as possible, we're not telling people what to do, but we want to guide them and help them be successful. So making sure that what they want to do is within their reach, that it's possible, it's achievable. And I think, you know, especially when working with people who maybe are living with psychosis and possibly have delusions of grandeur, we want to make sure that we're helping them to create achievable goals. And then relevant, also extremely important to me, I want to make sure that everybody's goals are meaningful to them, which increases motivation and the likelihood that they're going to reach the goals that they create. So on the next slide, we're looking here at an actual goal sheet that I helped somebody or supported somebody, I should say, to develop recently. This was their first plan. So you can see this is all in that individual's own handwriting. And we want to point out at the top, hopefully you can see it, it says, My Life Vision. That's kind of where the meaningful, helping people find their purpose, and helping them find why am I doing this, why am I going through this process and creating goals, and it's something we don't force people to develop right away. Often people have not been asked that question, what is important to you, what is valuable to you, what do you want your life to look at? So we want to give people a little bit of time to develop that, but it acts as a guiding light through their entire time in our program. And then we chose to share a work goal sheet, partly because it's a little easier to measure. Typically people have a harder time developing mental wellness goals, which you will see the same persons on a later slide, all of their goals laid out, but what we do is help them through brainstorming to identify different, not just different areas for growth, but different specific aspects of that area. So in this case, going to school and being able to have not just a job, but a career that is loved and enjoyed is important. And the life vision and the completion goals, we want to remain fairly constant, the finish line isn't constantly moving. There's a little bit of flexibility within those in the first year somebody's in our program, but ideally we want those to not move once they're created. And then the short-term goals, we are constantly revisiting, the plans are revised every three months on a quarterly basis. And that's giving people a chance to learn more about what has worked for them, what has not worked, explore different activities and services that may be useful supports for them. And, you know, based on how they rate their progress, whether it's yes, I achieved it or no, I did not, then they can create new goals every three months. So it's a work in progress. And on the bottom there, you see hopefully where it says action steps, that's really about asking the person what is going to help support you to accomplish the goal that you set out for yourself. And that can include different services, different tools, but also it's important that anything they are going to use their recovery budget for is included in the action steps, because we want to make sure there's a connection between their current short-term goal and the recovery supports that they're requesting to use their budget for. So that's what it looks like initially. And then on the next slide is kind of how we formalize it for people. So when they write everything down in their own words and in their own handwriting, then we submit it and this is what we present to them. And this is really, it's used as a tool, not just for a coach to track a person's goals and the length of their quarter and all of that, but it's shared with the participant and they have the same tools available to them that a coach would to hopefully act as a tool to help them remain mindful and aware of what their current short-term goals are. So you'll see on the left-hand side of this summary sheet, there's a list of a number of different long-term completion goals and they choose also the date, how long they would like to stay in our program working towards progressing in these areas. But I always, it can become a little overwhelming for people when they first look at this and see a long list of all these things that they've set out to do. So I try to encourage not focusing on the long-term goals necessarily, but focusing more on the short-term goals, which you'll see represented on the right-hand side of this sheet. So those are the ones, you know, this is in the present moment. This is what I am working towards as a participant and it's connected somehow to those long-term completion goals, but the focus should really be on the short-term goals, whatever those are at the time. And in the middle, you'll see there's medication, clothes for school, school supplies, computer. So that's what this person decided to use their recovery budget for in this quarter. And those are kind of why it's justified and the goals that it's related to. So this can be used also, I think, as a tool, not just for the individual, but also we encourage if somebody is engaged in traditional treatment, so if they have a counselor, we encourage people to take this into therapy and to share this with their provider, because often I think a person might not even be aware of the treatment goals that are developed by a professional for them, may not even be aware of what their diagnosis is. So this is in the collaborative working coaching relationship. It's all also encouraging collaboration and assertiveness in outside of SDC and outside of the coaching relationship as well. And then on the following slide, so this will be the last thing I discuss and it kind of puts a lid on everything. So it's maybe a little bit difficult to read, but these are, again, this person's long-term completion goals. And I think it's important to have this, not just, of course, as a program, we're always trying to find ways to measure progress, which is not always easy because some of these things are less tangible. It's not just about getting back to work. It's about first addressing your mental wellness and often physical wellness, those are very closely connected. So we want to make sure that we're giving people an opportunity to connect their short-term goals to their long-term goals and really to use this to recognize where are they rating themselves the highest and perhaps maybe rating themselves a little bit lower so that we can determine where they want to spend their energy most going forward. That's about all I've got and I'll hand it back to David. Thank you. So what Megan just shared with you is really has been refined over time. And the purpose is to try to make our process as logical and as transparent, workable as possible. And as we do refining and changing of the program over time, this is all done in collaboration with an advisory council, which consists of roughly five to nine people, varies over time. And the bylaws for that entity, the advisory council requires that 51% be people who have either been in the program or who are currently in the program. And it just happens that for us, it's always been 100% of the people in our advisory council have been people either currently or previously in the program. So we meet on a regular basis, monthly. We confer, they can certainly advise me and take votes and ratify changes that we make. I want to shift to the purchasing guidelines because it's really at the heart of this, how money is used and how people can use their money. And it was provided to us by the state of Florida. And this is going back 15 years now. And the actual document, the guidelines themselves are eight pages long. And I have to say it was one of the most challenging aspects of implementing this program to really arrive at a more streamlined, workable version of the guidelines that were consistent and that people would find to be reasonable. And so we want to see that reflected in program satisfaction surveys, which we have. People feel like they're reasonable and they're fair. So even though these guidelines were provided to us by the state, there is room for interpretation and some flexibility, and that's taken place and continues to take place. But the way that folks can use their money is divided into three main categories. The first of which are traditional clinical services that psychiatrists, psychologists, licensed counselors, medicines, that sort of thing. And then the second category, the enhancements or the non-trinit recovery supports. That's a really neat option that people can use their individualized budgets to access experiences in the community that they will find therapeutic. And so it's a very broad category. And we do require that we have a written recommendation from a licensed practitioner recommending these activities. And that's really there to protect this option for people from outside scrutiny. Because if you take some of these things out of context, it raises eyebrows when people find out or hear that you're using state funds for a massage therapist or maybe to go out to dinner or to have a manicure. So those are all within the context really of a person's recovery plan. And that's why we try to be as transparent as we can with goals and connecting the purchases to the goals. And by the way, if we have a mantra in this program, it is the goal always comes first. So when a person asks, can I use my money for this? Can I use my money for a mattress? Or can I use my money to buy a moped? We're always going to say, what goal is that serving? And what is it that you're trying to accomplish with the purchase of that particular thing? So anyway, you see some examples on your number two. Number three are the enhancements. And those are things that another very broad category. And they're either going to be related directly to a person's productivity goal, or they're going to be indirectly related. And the things that are directly related, like getting a computer to take online classes or to communicate with an employer, whatever it might be, that's going to be 100% reimbursed. If something is indirectly related, for example, I mentioned a mattress. If a person wants to get a mattress so that they can rest better and perform better in what other activities they have that are work-related, volunteering, then they're going to be reimbursed at a 50% level. And when I say reimbursed, the coaches will make cash reimbursements to people. But if the upfront cost is prohibitive, then the coach is going to make that purchase on that person's behalf. They'll meet at a store or maybe by phone, that sort of thing. So there's purchases made by credit as well. And this is in addition to enrolled providers that send me invoices and I pay them by check. So let's move to the next slide. And you see some special categories, dental, vision, and hearing. And I'll tell you that dental services are one of the first things that a lot of people will invest their budgets in because the dental care has been neglected for so long and it tends to be expensive. So people very commonly will upfront tend to that need. And then we look at living expenses and there's limits on that. Again, back to what Patrick was saying in the beginning about really discouraging dependence on this for living expenses. This will limit ongoing repeating expenses to one quarterly plan per year. So those are things like rent utilities and so forth. And then we have some other requirements here, just things that are odds and ends that I'm going to pass on because of time. And we'll move on to the next slide if we could. This is a complicated spreadsheet that shows exactly how money was spent in the past fiscal year. And it breaks it down by month. It shows the percentage of funds that were used for these things. That left-hand column is really a coding system from the state of Florida. And you'll see by the graph that clinical service, that's a combination of psychiatric and counseling services and medicines consumes the most amount of funding. And then second is travel. And I'll just mention that that's a very, very broad category for us and it knows no limit. So that can be anything from getting a car repaired to mileage to get to your psychiatrist or your counselor, to a bicycle seat, to car insurance, to bus passes. And so we typically see a lot of funds being used on transportation needs. You'll notice down the row there, you'll see that rent utilities is relatively low when you combine rent and telephone and electricity and natural gas and water. That's really kept pretty low. So this is a breakdown. People generally are curious on how money is spent and this shows you how it is spent. So let's move to the next slide. This details what we're using right now and we have for the past eight years or so for exit criteria. And we have a maximum stay of seven years, but a person can have multiple enrollments as long as they don't add up to more than seven years. And so a person will complete their plan. They may be given some time to make adjustments over that up to a year, but they are going to self-identify how much time do I need to accomplish these things? And it's the work or productivity wellness timeframe that's going to determine how long the person's going to stay in the program for that particular enrollment. So once they come to the end of that time period, they're going to be discharged either having accomplished their productivity goal or not. Now they can voluntarily leave the program before then. That's fine. You save time that way for a subsequent enrollment if you want. But for right now, people are commonly setting goals of maybe two, three, four years, that sort of thing. And then you have to wait at least three months before you commence with your next enrollment. Once you do come to the end of that self-identified timeframe, we're looking at three-month periods where a person can extend three months at a time. And that's if there's a specific thing coming up. You've got your GED exam scheduled or you've got a job interview and you need, you know, whatever it might be. If there's a concrete reason, then we're just going to take it three months at a time. So let's go to the next slide. This is in our bibliography. It's a rigorous study that was done with Judith Cook. And it gives you some idea of things that were discovered when comparing in a controlled way, people in self-directed program in Texas versus people who are receiving traditional services. You go to the next slide. I mentioned our advisory council. We have had 10 coaches and three of them are certified, have been certified recovery peer specialists. And one of our coaches is going to undergo that training. So the peer support people are full-time or part-time coaches. That's up to them or with the available position. We try to keep a Spanish-speaking coach at all times. As I mentioned, everybody is in a poverty situation and African-American and black participants and Hispanic participants roughly reflect the population proportions. I think over time, we probably tend to have more African-American or black people in the program and maybe just under for Hispanic. The serious mental illness diagnosis, this is current, it's like 88% of our census, which is around 76, 78 people right now. That's probably a little high, but that, it's pretty close. So we're talking schizophrenia, schizoaffective disorder, bipolar disorder, major depression. Now we have people with other diagnoses. We see a lot of PTSD, other assorted panic and anxiety, other depression. And that kind of gives you an idea of the diagnoses for people who are working through our program. So the next slide is a brochure that we send out to people initially after that conversation. So it provides some model of people, you can go to the next slide too, of people who have been in the program or are in the program and what they've managed to accomplish. So it's a kind of role models, but also it drives home that and emphasizes that productivity goal for the program. Let's go to the next slide. This is a kind of a pamphlet that came out a few years ago from an effort with the Human Services Resource Institute. Patrick and I were at a conference five years ago in Boston. It was really exciting. There were people from all over the world who were talking and learning about self-direction and mental health. And there was a study going on for programs in New York, Pennsylvania, Texas, Michigan, and Utah. And Florida was part of that as well. And you can go on the HSRI website and look at this particular pamphlet. It's really interesting. One of the things that came out of this was looking at self-direction as a program like we have versus self-direction as an ongoing option that people can use. So the difference being people don't need to move through and exit the program, but it's just a given that it's a model for providing mental health services. And next is our bibliography. I think at this point we can move on to the question and answers. Hopefully we have some time for that. So all three of you, it was really compelling. One of the things that's coming across in the question panel is can one or more of you speak to the difference between the idea of self-directed care versus recovery-oriented care versus person-centered care? Patrick? Well, self-directed care is really very different from all of those. All of us try to move towards person-centered care and the idea that a person determines the type of treatment that they want and developing their own treatment plans. Recovery-oriented care kind of encompasses all of these different models. But self-direction is a specific model that has really turned everything on its head because what we've done is we've given the economic power to the individual to be able to steer their recovery plans in their own direction. And as David showed, it can be very complex the way that you can use these funds. A certain amount of it is used and the highest amount of it is used for traditional services. But recovery is a complex thing and it's different for every one of us. And so what I may need, for instance, David said, maybe somebody needs a moped or something like that in order to go to work. That may be a very important recovery goal for me because work is the way I identify myself and success in my life. For another person, it might be re-establishing connections with their families. So I think they're all related, but they're very distinct. And I think person-centered care is the best application of traditional services. Recovery-based is the overall framework and self-direction. This is a very unique way of doing it. Right. I agree. I mean, the part about the controlling the finances is so unique, but such a powerful tool to learn and with supervision of a life coach could be an amazing experience for someone, maybe challenging at first, but also amazing. I guess you would agree? If I could add, sometimes, you know, I've been doing this for a number of years that, in a way, it's not so much what a person buys, it is being trusted to make those decisions that has such a healing power all of its own. And it's probably behind why we hear people time and time again use the word hope when they give us, you know, reflections about their experience in the program. That's the word we see more than any other where people feel capable and they dare to dream and they feel like there's hope now and there wasn't before. And so that's so gratifying to hear. I'd like to just add one thing to that. One of the very important ways that they measure success in this program is by looking at quality of life and changes in quality of life. And, you know, what David was speaking about, about actually being trusted to direct your own finances, being treated with respect is a fundamental part of feeling like you have regained full citizenship. Right, right. Megan, I have a question for you that came in. How do you work with moving from a passive goal to an active goal? I noticed on the example that you gave, you had the person said, well, I won't drink, I won't snack. And how do you help someone turn that into something that's active? That's a really great question because when we're going through and identifying priorities, a lot of the language that a person will typically use is negative in that sense and, you know, something we do not want to do. So it just becomes a conversation and, you know, I try to help them look at what would the flip side of that be. So instead of, I don't, I want to be less depressed. Okay, so what would you be doing more of or, you know, what would you be doing differently if you were less depressed? So it's really just a conversation that has to occur over time and helping that person to recognize the way they're using language and to give examples, you know, provide them examples and ideas of what a positive side of that could be. Can you talk a little bit about how you involve family or supports in the self-directed program? I guess I'll answer that as well. So we, of course, only will speak with anybody else with a release of information from the individual, but that kind of contact is typically very, very minimal. Sometimes, I would say pretty rarely, but occasionally people want their family to be very much involved in this process and I just make sure to let that person know, you know, I want to make sure I understand exactly why they want their family or friends involved and what kind of information they're wanting to share and how that person can be a support, but more often than not, it's simply a one-on-one between the coach and the participant and family is only typically involved when there's an emergency situation. So occasionally, someone will become hospitalized and I won't know that until I contact their emergency contact and then they'll let me know what's going on. So that's really the most that I ever communicate with a family member. Is there any difference in how you work with someone who's early on in their illness versus someone who's farther along in their illness? Yes, I mean, go ahead, Megan. Okay, I was going to say just the biggest difference I notice if somebody is newly diagnosed or has newly become aware of their diagnosis, then they're less aware of the types of treatments and approaches that are available out there and then, you know, also as far as language goes, people who have been in the mental health service industry as recipients of care for a long time, they sometimes have an easier time developing goals just in terms of the language they're using and coping tools and things they've learned along the way. David, do you have something to add? Well, no, I mean, we're just meeting people where they're at and we do have this kind of this template, this system that, like I said, is logical and transparent and yet at the same time, there's a lot of flexibility in there and for how people are going to express their goals, where they're coming from, and again, that starts in that initial conversation and getting a sense of what the person's expectations are, how they think about their own wellness, how they think about what's available, and so we're certainly meeting people where they're at and we're working with them for over a period of years. So, there's just a lot of variety. I would add, you know, so many people, especially people when they have been newly diagnosed or maybe been released from their first hospitalization or crisis stay, their idea of their goals is very limited. The horizons are very narrow for them. You may ask somebody when they come out of the hospital the first time, what are your goals? Stay out of the hospital, stay out of jail, stay on my medications. One of the very most incredible parts of self-directed care for me was always seeing people get that ah-ha moment when they realize there is so much more out there that's possible in my life. Well, David, Megan, and Patrick, thank you again for bringing this topic forward and for really highlighting it with some very vibrant examples. And as always, I really enjoy the Q&A and I think the audience really appreciated your insight on these questions.
Video Summary
Self-directed care, also known as the Clinical Support System for Serious Mental Illness (SMI), is an initiative that helps clinicians implement evidence-based care for individuals with serious mental illness (SMI). It is focused on providing alternatives to traditional behavioral health services and empowering individuals to create their own recovery plans. The program is based on the principles of self-determination, self-direction, and individual responsibility. <br /><br />The webinar featured three speakers: David Sarche, the Director of the Florida Self-Directed Care Program with NAMI-Collier County; Megan Cobb, a senior life coach and mental health counselor; and Patrick Hendry, Vice President of Peer Advocacy Supports and Services for Mental Health America. <br /><br />During the webinar, the speakers discussed various topics related to self-directed care, including defining self-determination and its importance in the recovery process, identifying the components of a behavioral health self-directed care program, contrasting the benefits of self-directed care to traditional services, understanding the differences between self-directed and traditional payment models for mental health service delivery, and discussing the basics of the Florida Self-Directed Care program. <br /><br />They emphasized the importance of self-directed care in promoting recovery, engagement, empowerment, and individual satisfaction. By giving individuals the ability to control their treatment plans and make choices for their own care, self-directed care aims to shift the focus from dependence on traditional services to self-management and community-based support.
Keywords
Self-directed care
Clinical Support System for Serious Mental Illness
evidence-based care
serious mental illness
recovery plans
self-determination
webinar
traditional services
mental health service delivery
community-based support
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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