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Rural and Frontier CSC Considerations to Address T ...
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Hello and welcome. Thank you for joining the Third National Conference on Advancing Early Psychosis Care in the United States, presented by SMI Advisor. We are pleased to present today's session, Rural and Frontier CSC Considerations to Address Trauma and Race. Hi, my name is Catherine Ann Bahira Hayden-Lewis and I serve as the Rural Services Director with the ESA Center for Excellence at Oregon Health Sciences, University School of Public Health in Oregon. And hello, I'm Susan Gingrich. I'm the Navigate Training Coordinator and I'm actually, I live here in Philadelphia. And hi, I'm Nick Breitbart. I'm a professor in the Department of Psychiatry at The Ohio State University and Director of the OSU Epicenter Program. Dr. Hayden-Lewis and Ms. Gingrich report no financial relationships with commercial interests or conflicts of interest. Dr. Breitbart discloses grant and research relationships with SAMHSA and OMHAS and as a trustee of Mental Health America of Ohio. We have several learning objectives for you today. The first is to analyze useful trauma-based approaches that are sensitized to complex trauma in CSC care. The second learning objective is to describe challenges and possible solutions for the dissemination and delivery of CSC in rural communities. And the third learning objective is to identify the main differences between implementing a first episode team in an urban location versus a rural location. Next slide. The talk I'm going to give today is titled The Early Assessment and Support Alliance in Oregon's Rural and Frontier Settings. Next slide. ESA, which are the CSC care programs based in Oregon, is located in 35 of 36 of our counties and is publicly funded by the Oregon State Legislature. The first ESA program was established in about 2000-2001. And in 2013, the legislature funded, I'm sorry, in 2013, the programs adopted 16 practice guidelines, which are also our fidelity guidelines in Oregon. These guidelines built off of the Australian guidelines and integrate best practices as well as promising practices in the CSC field. Our fidelity and practice model offers flexibility of a task-driven or role-driven CSC team to promote program sustainability and flexibility while also protecting those good outcomes we get from quality CSC care. Next slide. This is a map of Oregon, and it's really important in rural and frontier CSC programming to understand land and the geography of land because land influences the cost of CSC programs, staffing patterns and ratios, the methods of service delivery, the values of the community members that live there, technical assistance adaptations, as well as program focus from startup and through sustainability. Additionally, relationships with tribes that are on, tribal members that are on unceded lands influences how we might do CSC work. So in Oregon, we started out with more metro and suburban sites and moved. The map on, the colored map, multicolored map on your screen represents the 36 counties in Oregon where ESA exists in 35 of them. The other map is an indigenous map of the land. So you can see we're working with two different understandings from the outset of where people are located and how services and health care might work. In rural is defined as any geographic area that is 10 or more miles from a population center of 40,000 people or more. Frontier is a separate federal designation that's any county with six or fewer people per square mile. And then we have the tribal recognized and unrecognized ceded and unceded land. So very complex regionally, geographically and land based to do this work in Oregon. Next slide. How did how did I approach the rural and frontier work in Oregon? First, by recognizing the beauty and wonder of the land. The next was a little more deep, bigger dig. So Landon or the rural and frontier communities in Oregon, many of them are accessible by two lane roads only. And some of those roads are actually impossible during winter. There is limited to no Internet or cell reception. And there are also varying community values on the use of technology and daily life, which is an important thing to consider in working with in rural and frontier communities is how are our values similar and different depending on if we live in those communities or not as providers, trainers, technical assistant workers. The folks doing CSC work in rural and frontier Oregon are meeting the mental health needs of community members living in rural poverty. I mentioned earlier includes regions that have confederated or distinct tribal designated lands. All of the counties, county CSC providers in Oregon have different relationships, potentially different contractual obligations based on the funders with the tribal community members. There are no two. And of course, tribal groups are distinct. In one of our eastern Oregon sites, there is a confederated group of tribes that represent 39 different distinct tribes. So lots of layers of complexities in Oregon. The furthest county, the most remote frontier county is five to 11 hours by car from the closest inpatient psychiatric emergency department, which means that the CSC care teams really need to think about and practice how they respond, prepare and get ready to handle emergency situations for our young people and their families enrolled in our programs. And of course, many of the sites are already doing this work for other programs. And when we come in as a CSC technical assistance provider, it's important to learn what systems and resources and responses they already have in place so that our work is really supplementing what they're already doing so they can maintain that sense of ownership of caring for their own people. Next slide. In Oregon, I was hired as a rural services director about six years ago. I was asked to take the existing 16 practice guidelines and the existing technical assistance model and adopt it to all of eastern Oregon. The way that I began was to do a very extensive evaluation of relationship building and strategic planning with each of the counties, the agencies. A couple of them had a CSC program already. Most of them did not. What I found in that, again, extensive work took place about over a year, but it's ongoing, that the teams are really struggling to complete the required trainings that the Center for Excellence asked of them, which is good training practice in CSC work. They were also struggling to meet full fidelity at the same pace as urban and suburban teams. There was also a relational component that the teams and agencies where I spoke were welcoming and also really started to communicate to me that they were hesitant to engage with building a CSC program without assurances that at the Center for Excellence we would make real foundational adaptations to our training, to our technical assistance, to our structural requirements, to really honor and reflect their communities, mental health settings, pathway to cares, and values, as well as historical experiences with other technical assistance centers that hadn't made those modifications yet expected the sites with less funding, different resources, to achieve the same programming as their urban counterparts. What I needed to consider in making these adaptations were what was the allocated FTE for the CSC care team, what was the drive time to do community outreach and engagement, as well as engagement during that initial screening with families, seasonal access considerations, and then incidence rates based on a population size. So this was a complex project. Good fit for me, but complex. I'm very grateful to the folks I worked with for having patience with me to teach me about how care and how work works in their communities. The funding in Oregon was allocated for 0.2 FTE for the CSC ESA teams, and we made huge changes over time, which I'll get into a couple of the big projects next. Next slide. So the feedback was in. Of course, we like to practice feedback-informed care of some sort out here in Oregon and the ESA programs. And what we really realized was that we needed to adapt our practice guidelines, which, again, guide our fidelity reviews and fidelity recommendations to get those good outcomes in order to move from a pass-fail model of implementation, succeeding at meaningful fidelity or not, and really focusing on developing a developmentally-informed tool, so a staging model to the implementation of a CSC care team in a rural and frontier program. And that took out the tension and the frustration and really the morale crusher of passing or failing a fidelity review. And instead, we could say, what makes sense for your community and your staffing model at what pace to implement this programming and what benchmarks could we look to for you to focus on first, second and third to achieve that? So that's called our benchmark fidelity tool. The tool provides guidance to teams and agencies to focus. It's for new sites and it also helps sites that are struggling to maintain fidelity, worried about different practice guidelines because of staffing issues, filling staffing roles, staffing retention. Many of us in this field know that's a real challenge to these programs on when those unforeseen challenges do arise, what to protect in the program so that the program doesn't go away based on turnover and challenges that might come up. So you can return to the benchmark items and then regroup and go back to the fidelity and full practice items when you're fully staffed or when you've gone through the storm, so to speak. It builds elements into the core so that sites can really establish their own reasonable pace for strategic implementation of this program and gain some confidence that the work they're doing is going to have a long term gain. Different different percentages for fidelity. So we don't ask people to reach full fidelity at once. Perhaps they started at benchmark level and we recognize and are transparent that benchmark will not be at full fidelity, 80 percent. It's going to be the first step, the foundational step and move from there. Next slide, please. We had some unanticipated what I think are some pretty great gains from the benchmark project. One is that our center was able to clarify what elements should be included at a startup level for all the programs, how to maintain programs when struggling that sites meeting full fidelity in ESA. So larger sites or sites that have had the time to implement a full fidelity practice model reported using the benchmark tool to guide their strategic planning. So you could be a full fidelity ESA CSC program and still be missing some of the core benchmark items. And so the sites that were really had a hang of how to run their program and keep it running really well and getting those good outcomes could go back and do some strategic planning and say, yeah, we've got we're doing these great this great work and community and screening and access. But gee, we forgot about implementing feedback informed care across our team members. Let's put that in our strategic plan for the next two years and start rolling that out. That was very exciting. Again, unanticipated gain. Technical assistance. We changed all of our technical assistance platforms. We reprioritize the required trainings for the ESA sites. We looked at the content. We evaluated the values laden messaging we had inadvertently placed in sometimes ranking full teams versus smaller teams. So a full five person team was considered a great team. And then some of the language was said, if you need to know if you can't have a five person team, you could kind of get away with two people which sent a message we didn't want to send, which was the better than less than message. And instead we said, what's going to work? We converted all we converted into recorded webinar trainings, live remote trainings. The hope my whole team really got on board with doing this work so that we could have equity of access. We improved our capacity to offer task driven staffing recommendations rather than role driven recommendations, which really offered and invited the CSC teams to make their own decisions about the staffing that was going to be the ESA CSC team. Who was going to do what tasks on the team based on interest, skills, available time. So that really opened up a lot more flexibility for the programs. So, for example, our medical providers, some of our medical providers on the frontier were already providing many of the nursing services. There was a shortage of nurses in the mental health world in the rural and frontier communities. Very valuable roles, but a shortage. So we had a blended role. We got feedback from the medical providers that were saying, I'm already doing this work. I'm already talking to people about supplements, about their health care values, about non psychopharmacological and pharmacological choices about lifestyle choices. Could I just do this work for ESA? We said, of course, please do this work for your programs. Also combined counselor, screener and supported education roles because some folks are in the schools and doing ESA. It just made sense to combine them. Next slide. This is a screenshot of what the benchmark model looks like in real time. So we came up with a color coded map of how sites might look on their own to focus on benchmark. So teal is a benchmark item. A level two is green and fidelity would be would be hot pink. And there's both each section by section in our practice guidelines has this color coding. If there's a section for a new program that has no teal, that means that that indicates for that new site that they don't need to focus on that particular element at startup. Next slide. This is a summary of the technical assistance and training modifications, which are starting to mention before before covid-19, we had to convert to web based technical assistance and training. That was just needed by rural and frontier communities. We also agree that the burden of travel should be shared across everyone in the state, regardless of the size of the team, so that folks, everybody could share the time and investment it takes to get to a training. And so we deliberately schedule our trainings. This is pre and will be post covid-19. Schedule our trainings to move throughout the state on a predictable basis, depending on the region. So people from the city might need to drive five hours to get to a training in March. And then people from the rural and frontier communities might flip flop that in the summertime. So really sharing the responsibility across the entire network. Ongoing consultation meetings were established for the eastern Oregon region to be both in-person and a hybrid online model are again. And we made lots of changes to the content that's pushed on equity issues, both values for rural and frontier, as well as the myriad of equity considerations. Open that door pretty significantly toward the center. And I established a rural and frontier learning collaborative. And so pre covid-19, we did this in person. Right now we are doing it online. We get together all day on a quarterly basis. We focus on one learning topic as a learning collaborative group. The learning topic is selected based on a pattern of need that I've noticed in technical assistance, consultation meetings or that my colleagues have have shared with me as needing some more support or that the group has expressed interest in anything from a comprehensive risk assessment to engagement of young adults. We rotate people with different levels of mastery to present to the group. And then the group transfers the knowledge from the morning session into case review, peer case review as a group in the afternoon. And when we were in person, we used to do potlucks. And that was really nice. And we'll look forward to getting back to that. So there's also this personal sense of connection. And we're talking about clinical work that builds some trust and rapport so that people can deepen their clinical skills and also notice that they're building a network of knowledge and capacity across their whole region. So they really get to own this work. Very exciting. Next time. We have a deep and growing commitment to equity and healing at the Center for Excellence. We've established an instable institutional equity and tribal charters to focus deliberately on this work. The charters will inform all of our work. So we'll continue to inform our role in frontier work, training, content, manuals, our own hiring processes at the Center for Excellence. This will start to include confederated engagement of confederated tribal members and non confederated tribal members, folks that are living on unseated land, but perhaps in urban populations, our decision making practices. We're taking this work seriously and to heart that we need to become more of a learning center and focus on the process of doing equity work at the Center for Excellence rather than only agenda and product driven. So we're in that change as well. We have established a team member as a director of program and institutional equity. And we're beginning to launch our charter of collaboration with the Oregon Health Sciences University for tribal work. So in summary, what I've done, I've done a lot of training in the treatment and care of complex trauma. I'm very interested in compassion, fatigue and the trauma that care providers bring into their work. That is not a bad thing. That is a human thing. And I take a trauma informed technical assistance stance. So really work to establish authentic relationships with team members, agency staff from the front desk to executive leadership. May follow through on agreed upon plans and continue to seek feedback and offer choices so people can own their own work. If you'd like to be in touch, please do so. I enjoy so much talking about this work and I look forward to hearing from my colleagues next. Thank you. Hi, I'm Susan Gingrich, as we said at the beginning, and I'm pleased to be presenting on what it's been like to implement first episode psychosis teams using the navigate model in rural and frontier states. So I loved hearing about the one state, about what happens when you really intensely get into one state. Some of the wonderful progress you can make in that way. And I will be switching to the next slide to talk about a different kind of experience that we've been having. On the next slide. Thank you. Is what it's been like for the navigate central trainers who go out to many different parts of the country. And what we've found in terms of rural and frontier communities, both their strengths and the challenges that they face. We'll talk about some strategies for overcoming these challenges. And also to talk a little bit about the impact of COVID-19 on providing first ever psychosis care from our experience. Not necessarily what your experience has been in the audience, but we love to put together all the different experiences people have had. Next slide, please. So just to kind of frame this is that these are the states. The first slide, just the first go back one slide, please. OK, excuse me. These are some of the states where we have provided training in the U.S., and the ones with stars are the ones where there's at least one rural or frontier team. So as you can see, those stars are scattered about. And in the next slide, you'll see some more states and some more stars scattered about. And we would now at this point include Nebraska in this list, and it would have a star. And I think in some ways, the stars aren't an accident. Some of these teams are the stars of our network of Navigate teams. They have done extraordinarily innovative and creative things. So in our next slide, just to say the percentages is that we have almost 58% of the teams of the states that we've worked in have had at least one rural or frontier Navigate team. So in the next slide, one important observation just to start things off, and I think this agrees with what Katie was talking about, rural and frontier are different between each other. But also within the rural category, one rural site may be very different from another rural site. And one frontier site may be very different from another frontier site. It's very hard to make big generalizations about the teams at these different settings. But at the same time, in the next slide, there are also some similarities. So I thought it might be helpful just to talk about some of those similarities and what observations we've made. Excuse me, I just need to cough a little bit. I always like to assure you it's allergies. It's nothing more serious. Not that you can get anything from over the internet, but just wanted to assure. So some of the similarities in the next slide is their strengths, is that oftentimes rural and frontier communities are extraordinarily resourceful. They're used to figuring out things for themselves. They're used to looking for their own solutions to things. Often there's very strong community ties and supports. People may have lived in that area for their whole life. They're often very independent and have strong family connections. I usually think of this, rural and frontier, it's a place where your cousins camped. Like when you lived in a big city like myself for so long, it's like families are so spread out. But very often your cousins are living down the street or your aunt and uncles are in the next town over. So there's often very strong family connections. In addition, faith is often very important. There may be several church, even in small communities, there may be several churches or synagogues in places of worship, and that we have to be aware that those are sources of strengths for our people. In the next slide, we would also say that there's some challenges. And Katie talked about this extremely well with the distances. Things are really spread out. And they might be spread out from their neighbors. They might be miles away from the neighbors if you're in a farming community. You might be quite far from health facilities, both mental and physical health. We worked with one team where the nearest psychiatrist to the client we worked with was 100 miles. So there's lots of distance issues. And there's very little if any public transportation out in the rural areas. There can be kind of a limit of the number of employment and school opportunities that are nearby. And the last two I think are kind of important as well is that substance use has had a particularly strong impact on some of our communities. For example, methamphetamines have been very rampant in some rural areas. Opioids have also been very, very strong problems in, say, New England, just as an example. And then finally is the scarcity, as Katie mentioned, of psychiatrists and nurse practitioners. People say, oh, if there's no psychiatrist in 100 miles, why not use a nurse practitioner? Well, duh. There's no nurse practitioners within 100 miles either. It's like they're very high commodities, nurse practitioners. They're very valued and very much in demand. So in the next slide, let's take a look at the overall ways that we deal with some of the challenges. And this reflects back on what Katie was talking about. First would be like, I'm sorry, I apologize. Some common challenges would be in determining size and composition of the team. If you have fewer people in your geographic area, you're not going to be able to support as large a team. There's also challenges in case finding, knowing that people are out there, but how do you get the message to them? How did they learn about first episode and learn that they might need such a thing? Difficulties, attendance can be challenging because of those long distances. Next would be some distrust of outsiders and concerns about privacy. Like, who are you coming into our community and telling us, you know, what to do? And I completely agree with that. We need to be very mindful of the integrity and strengths of the communities we're going to, and be very respectful. There's limited internet access. I was very interested in Katie's presentation about being able to do so much online, and that's wonderful. Some of the places that we go to, they don't have good access, either because there's not the towers or not the internet installations, or because of poverty. Is that they might not have a computer, they might have a smartphone. So that's been challenging. And then again, as we were saying in terms, just like it's a relative challenge for those communities in general, that there's not a lot of employment and education opportunities. It's challenging when you're trying to do first episode treatment, trying to help people get started with jobs, help them get started with education, that we have to be aware of that as a team, that we have to work sometimes extra hard to find those opportunities. In the next slide, the overall approach, and Katie was talking about this, and I think did it so well, is that we need to engage with the community. You don't just go in as a training team and say, okay, I'm going to tell you what to do and when to do it. It's like, we need to know from you, what is your community like? What are the resources you have? What are the systems that you've already established? Number two is we also need that on our part is that the trainers and the team need to be very thoughtful about helping people increase their knowledge of first episode psychosis, and what coordinated specialty care really is. And that's not again, it's not coming in and just kind of bossing people around, it's more like, here's some things that might be useful for you to know. And tell me how that fits with what your understanding is. Tell me how that fits with what you're already doing. And then thirdly, I think it's really important to come up with a plan that fits, that not a one size fits all when it comes to implementing first episode teams. And in the next slide, I would say that it's really a matter of working together. How can we put all the gears in motion so that they're working in tandem, that it's not a matter of people working in silos, but in people working together. And in the next slide, I would also say there's some strategies for some of the specific challenges. And I'm going to just pause a moment and say, how am I doing for time? Because I just realized that I need to be very cautious about that. How many minutes have I used up? Is anybody keeping tabs on me? Susan, we have 30 minutes remaining in the recording. Oh, okay. Okay, so I have another five or 10. Yeah. Okay, thank you. So here's some specific strategies for challenges. And then in the next slide, we'll start with that one that came first in the previous list, is that estimating the size and composition of teams. And here you'll see a website for an article about how to estimate based on the size of your geographic population, not a population of mental health clients or how many people with schizophrenia or psychosis that one thinks they have already. It's more like just geographically, based on your population, how many might you expect? And then calculate how many team members and percent of time. But keeping in mind, you have to have extra time. And this was a learning experience, is that just because someone has maybe half the clients that a big city team has doesn't mean that they only need half the FTEs, because there's home visits. And some of those might be quite long. There's the extra time needed for community education, going out and really talking to the folks that might be referring folks to you. And also in recruiting. You educate the community, but then you also need to really work hard to engage the folks that really need the services. And just remembering that we're more likely to find nurse practitioners and physician's assistants than psychiatrists in many rural areas. So the next slide is about case finding and recruitment. And I would say that the places that we've had the most referrals from would be hospitals, emergency rooms, crisis teams, and law enforcement. However, in a rural area, you need to really spread the word. You need to look for even more sources of referrals, primary physicians, schools, places of worship, any colleges or universities or community colleges that may have students from the community, and local organizations that include youth. In some rural areas, that's 4-H or a rodeo association. But it's like getting that word out is extremely important. In the next slide is the difficulty in attendance we mentioned. That's where in pre-COVID times, offering home visits is essential. And some home visits are still being done by many of our rural and frontier teams, but we'll get to that in a minute. Because they use some very resourceful techniques. But that clustering the visits, if they are coming into the clinic, try to line up the prescriber appointment, the family appointment, and the individual appointment on the same day. So the family only has to travel one day. And then plan for at least some phone and Zoom meetings. And I think that's going to be post-COVID as well as current. Next slide, please. What we mentioned about distrust of outsiders and concerns about privacy is hire team members who are known and trusted in the community. I know there's, you know, oftentimes in this community, there's a saint. You know, there's someone that everybody respects, that's working in the school system, or there's a nurse that's been, is very respected. And trying to not outright hire them, but at least to get them to work with you. I'd say that being extremely cautious about privacy. So if you're doing a home visit, don't come in a car that says, mental health, because people don't want others to know their business. That's everywhere. But I say, I think sometimes it's even more an issue in rural and frontier areas. So for example, there's, you know, in some rural areas, there's, if you, if somebody drives by and sees there's a new car in the driveway, they make note of that, not because they're nosy, but just because it's different. And so just being aware of this. So sometimes meeting at neutral locations like local, in between the clinic and the place where they live. And just being cautious about privacy. And of course, never ever say anything outside of the clinic. If you get a reputation for talking about somebody, you lose so much confidence. And oftentimes we've had less interest in groups because of that privacy issue. They'd rather have someone just come in and talk to them or talk to them on Zoom and not have their business known elsewhere. So the next slide is about limited internet access. We've used, we've seen some very creative ways of doing this, is that having snail mail is not dead. For example, if you're going to do a session and there's a handout you think would be helpful to someone, send it the week before in hard copy, because not a lot of people have printers at home. Or in advance, provide a three ring binder with tabs and things clearly marked so that there's a place for them to keep it. You know, kind of give them some of the organizational things that might help them. And then sometimes local internet providers will provide some assistance for people with low income. The next slide is about employment. I'd say in rural and frontier communities, word of mouth is super important. That they're less likely, it's not like there's as many, much use of LinkedIn or posting things online. It's like so and so down at the, you know, at the cafe there, they just lost one of their waitresses so that people know that there's going to be an opening. Also seasonal jobs are especially important in rural areas. At harvest time, there's going to be more people needed for harvest or for some rural communities, even though they may be far out there, there may be a Walmart or something equivalent, some large big box store that during Christmas, or some seasons that they have more jobs. So you have to be quite, quite dogged about this. And I'd say school guidance departments are good for looking for secondary school options. Next slide. So how COVID-19 has affected our teams. I'd say we're much more likely to be checking in on physical health than we were before. We're connecting in some communities with sources of food and other assistance. And sometimes in one rural area that we work with, the team will pick up a food box from the local church and bring it when they come around to do their visit. I also know a rural site that's making sure that people have little presents at this time of year. They're very, very kind. And the types of visits now include porch visits, which is from the sidewalk to the front porch, and folding chair visits, which might even involve a cold Coke from a cooler in the truck. It's like, how can we make this seem more, if it needs a home visit, and you have to be safe, how can you make it more companionable? So that there's a way to keep the social distance, there's a way to be safe. A lot of our teams are experts now on internet hotspots. That might be the library, if there's one nearby, or the school buses are now, oftentimes they're parking in a parking lot, so that the kids can get access and other people can also. We're also thinking about wellness, both physical and mental health wellness, and that we think that it's important to have a wellness plan for people who may be at higher risk for relapses of psychosis at this time. So the final slide is going to, I'm not the final, but what we're going to move into next is having heard about sort of a wider variety of frontier rural communities, we're going to go focus back in on a geographical area, which is fascinating. Nick Breitbart is going to talk about the experience in Ohio. Next slide, please. Well, I'd like to thank both my previous co-presenters here who have set me up very well for wrapping up our presentation here today. I'm going to be talking about, as Susan mentioned, our work on helping to disseminate coordinated specialty care in central and southern Ohio, where our work is focused primarily with community mental health centers that are located in Appalachia or Appalachian adjacent counties in the state here. So to give a little grounding for this work, I wanted to start by sort of highlighting a little bit about this region before we talk about how we bring these agencies stand up CSC programs. Next slide, please. So Appalachia is actually a very large geographic region, spanning all the way from counties up in New York State down into Mississippi, Alabama, and Georgia. And while geographically it hangs along the Appalachian mountain range, it is both geographically and socially a heterogeneous group right there. And in fact, if we look at the regions by cultural factors and geography, there's actually thoughts that Appalachia is probably best broken up into different sub-regions here that really tend to represent more similar and homogenous groups of folks. Now, our work in Ohio has been in that purple region there of north-central Appalachia that covers that southern and a little bit of the central version of the state and carries over into West Virginia. So that is our place of interest here. Next slide, please. So Appalachia, like any other region, presents with a number of unique characteristics as well as strengths and challenges here. To give you a little bit more of the lay of the land, as far as race and ethnicity goes, Appalachia is a fairly homogenous region here. If we look at rates of racial minorities in the population or individuals identifying as Hispanic or Latino, the region, and has for decades, tends to report lower levels of racial minorities and Hispanic-Latino individuals than the rest of the country as a whole. Now, of course, you can see that there's some variation in that here. If we look on the panel on the left, when we get down to the southern area of Appalachia, there you see that in Mississippi and Alabama and a little bit of Georgia here. We actually see some regions where we're seeing rates of racial minorities that are at or above the national average right here. So there is some diversity, but as a whole, if we're looking at the region that way here, it's relatively homogenous when we look at these variables here. Next slide, please. So when we get into challenges that the region faces, one of the unfortunate more long-standing challenges in Appalachia has been with regard to financial resources for the families that live there. If we look at median household income in Appalachia, it is significantly lower than the median household income across the United States right here. And unfortunately, that's been a trend that has been present in the region for quite a while here. What is an important aspect when understanding maybe some of these financial challenges in the region here is that it is not actually due to lack of participation in employment in the region here. If we look at the panel on the right here, you can see that the rates of participation in employment in Appalachia for sort of working-age adults is actually pretty much identical to the rest of the country right here. So what we're seeing with the financial challenges in a lot of these regions is regions where people are working and working full-time jobs here but are in many cases struggling to find jobs and opportunities that really pay a full living wage right there. A group that's often been described as sometimes as the working poor in the United States right here. Next slide please. So in our world of mental health and substance use work here, unfortunately, Appalachia is a region with significant mental health needs and concerns here. On the panel of the left, we see rates of drug overdoses throughout the region right here. So this is not even substance use or abuse. This is, you know, at its maybe at its apex where someone maybe at its apex where someone has overdosed on a drug here. And the region unfortunately, especially in the central areas of Appalachia, has been hit hard by first methamphetamine and now more recently opiates. And rates of use and abuse and unfortunately overdose are scary and significantly larger than many other regions in the country right here. So we see this large substance use program here and not surprisingly, when we're seeing substance use concerns, we're also seeing significant mental health concerns. So the panel on the right shows data looking at the number of days in a calendar month that from national surveys, people in Appalachia were identifying they were not feeling well in terms of mental health right here. And the color coding breaks it down into the quintiles that are used in the national data. So the dark blue is for across the United States, the top 80 to 100 percentile in terms of most number of mental health unwell days in a given month. And then we get down to the fourth quintile all the way down to the lowest right there. And, you know, this is one of these statistical findings that you don't need fancy numbers to show. It's evident in the slide here. The amount of that dark blue in this region here is staggering. And we see that individuals in this region are reporting considerably higher levels of mental health concerns and more frequently than what we would expect given national data right here. So a region with needs both in terms of resources and maybe in part because of that here in terms of mental health and substance use. Next slide, please. So all of us are, of course, living in this new world of COVID and how it has affected us. And so are folks in Appalachia right here. The ARC has recently launched a website where they have been tracking COVID exposure and diagnoses within Appalachia here to give an idea of how this pandemic has swept through the region right here. So on the panel on the left, this was actually the day that they launched their website right here. And you can see that early on we're seeing some splatterings of COVID diagnoses in Appalachia, nothing comparable to maybe some of our more urban hubs like New York and Chicago. And if we could see the other side of the map, probably Los Angeles as well here too. But unfortunately, that time of maybe less COVID exposure in Appalachia has disappeared like it has many other places in the country here. And you can see as of October 7th on their map right here, what was largely a region with few COVID diagnoses is now nearly completely red. So we're facing significant challenges there around this pandemic. But of course, because of this and how programs operating in this region can effectively deliver coordinated specialty care in a rural area in a pandemic. Next slide, please. So other barriers faced in this region for individuals that may influence their ability to access care has to do with health insurance. As a region, as a whole, we see greater rates of uninsurance or lack of insurance in Appalachia than we do in other parts of the country here. You can see, especially in the southern and south central regions here, you see large swaths where you're seeing anywhere between 15 to over 25% of the population lacking health insurance here. Something that obviously will create barriers with accessing effective and appropriate services here. Something that's key in our work in early intervention where getting into care is one of the key things that we want to speed up and help people get into quickly. So these are some of the challenges that we see in this region here. Many of these are longstanding. But as I mentioned before, this is also a region with considerable strengths and resources while here, just like any other region in the country. Next slide, please. When we are thinking about these strengths that categorize these regions, in Appalachia in particular, one of the things we see, and I believe both of my co-presenters have commented on this in the regions that they work on, is strong community ties that individuals use to support themselves and their communities through all the challenges that we just all face in life right here. And Appalachia is no different from these other rural communities here in possessing this strength here. It's a hard strength sometimes to quantify, but we can see it a little bit here when we look at social organizations. So these are organizations that are designed in the community essentially to get people together to do things with each other right here at the community level right here. And as a region, Appalachian has more of these social organizations per capita than the non-Appalachian regions of the country here. They have built these infrastructures, these social infrastructures to support each other and promote success and well-being in their communities here. And these are things that are, of course, important resources for us in operating coordinated specialty care programs to help bring into the service right here and build off this real strength of the community. I'll talk a little bit more about how we've done some of that or at least tried to do that with some of the programs we work with in Ohio a little later on here. Next slide, please. So another place of strength or maybe a place we can say of growth really for the region has to do with educational outcomes here. Educational outcomes in Appalachia have long been recognized as unfortunately falling behind the rest of the United States right here. But within these communities, there's been a sustained and really incredible effort to expand the educational opportunities for people in these communities here. And the data are now showing that the hard work that the folks in these communities have been doing has really been paying off right here. And we're seeing this educational gap shrink in ways that are really pretty incredible. So if we look at in this slide here in 1990, a little over 68 percent of folks in Appalachia obtained a high school diploma compared to a little over 75 percent in the rest of the United States here. And 23 years down the road, what was, you know, about an 8 percent difference has shrunk to less than a 2 percent difference here between the region with, you know, 16 percent more folks in Appalachia obtaining high school diplomas than they were just 23 years ago here. This is a real success of the region. We see it across the region. So I talked about the different communities we can think about as forming Appalachia. So it's not just like in one part of this. We're seeing this growth here really across all of these five areas in Appalachia. There's been dramatic improvement in access, in participation in school activities here. Real success. And one that, you know, CSE programs are going to be able to benefit from right here, because as many of our folks are looking for educational activities given their age range, we in many ways get to piggyback on the success that has already been accomplished in these regions right here. Next slide, please. So we're talking about the region as a whole, and I'm going to shrink it down even more here to talk about where we actually work here in Ohio. So our program at Ohio State University is at the very top of those counties with the little epicenter logo in it right there. And since 2016, we've begun working with more and more of these community mental health centers, really focusing on central and southeastern Ohio to capture these Appalachian regions right here, and partnering with these community health agencies as they work to stand up programs now. And as of today, there are now programs serving 14 counties in Ohio that we've really been fortunate enough to partner with here. I will feel very happy to share a little bit about the success and real amazing work that these programs are done and really how we've kind of ridden on their coattails in terms of partnering with them with the success here. Next slide, please. So both of my co-presenters have commented about these challenges that are unfortunately somewhat ubiquitous in rural mental health care and delivering here, where we see reduced availability of service providers here. We see not only reduced service providers, but the ones where they're often are more isolated. It can be a challenge to form sort of a community of practice in these settings here, given the geographic distribution of people more spread out there. We see high rates of suicide in these regions compared to urban regions here, and sometimes even more increased stigma with regard to accessing mental health services, some of which may just be, unfortunately, because in a small community, I grew up in a small town in Wisconsin, everyone sort of knows everyone and everything that happens. So it can be a little harder to, you know, keep things confidential in communities here. You might have to take some extra steps here, and people may be more concerned about that in a small community than they would be in a more urban setting here. We see also cultural values in these communities that are often sources of real strength for people here, things like self-sufficiency and stoicism, that unfortunately, in the context of accessing mental health care, can have a somewhat iatrogenic effect and limit or delay access to care. So if I start experiencing psychotic symptoms and my first instinct is, okay, I got to work through this and take care of myself, and, you know, I'm not going to trouble anyone else with what is happening to me right here, well, that, you know, of course, that independence is great, but in this context, it can sometimes unfortunately delay access to care and sometimes delay people's ability to access some of the tools that they need to work on their own recovery here sometimes. There's also this question, and I think both of my co-presenters have commented on this here, about how we take treatments and interventions that are really developed and tested in urban centers and bring them to rural settings there. There's obviously tweaks that need to be done to make it work here, but sort of the question, or maybe the elephant in the room often is, when we make these tweaks, are we losing anything? Are these things still effective in doing what they hoped they would do in a different setting with different cultural values and sometimes with different styles of delivery in these interventions here? And, of course, when we're talking about a region with a lot of land and not a lot of folks who are very dispersed throughout that region here, transportation becomes a big concern here with access and care. It can be expensive, and folks often need to go long distances to be able to reach a specialized provider for mental health care. Next slide, please. So, when we were thinking about how we could partner with community agencies here in rural regions and help them in developing and standing up their own coordinated mental, coordinated specialty care programs here, our team took a view that we wanted to guide this process through a theory-driven exercise right here. And as a group, we came to see a utility of the idea of self-determination theory and maybe thinking about how we can work with and partner with agencies here in setting up their own programs. So, self-determination theory is a social psychological theory coming out of researchers at the University of Rochester who suggested that human well-being is really predicted by the satisfaction of three basic psychological needs. Our need for feeling autonomous in the actions we do in the world, our need to feel competent in what we do in the world, and our need to feel a sense of relatedness with our community or the people we work with. This has been applied in a lot of different settings, but has been used quite frequently and with greater interest in work settings, with thinking about how we organize teams and how we organize successful and oftentimes sustainable teams here. And that if a team can develop this work satisfaction where the members of the team feel autonomous, they feel competent in what they do, and they feel a sense of relatedness and connection with each other, that these are markers of a team that likely is going to be successful. And we thought that these values aligned well with also the cultural values that we saw in these rural Appalachian communities with values of stoicism and self-sufficiency and strong community ties. In many ways, those line up very well with our ideas of autonomy, competence, relatedness, maybe just different words for the same things here. So we have developed and refined, and this is very much a living document, sort of a model of how we partner with the agency step-by-step here as they work to open up their programs and then move on to actually evaluate are their programs successful and ultimately train their own staff to be their own in-house trainer for these interventions. So if for some reason we, as someone once said to me, if I get hit by a bus, there's someone there that can help the folks get more folks on their staff train, even if they have staff turnover, things like that. And I hope I don't get hit by a bus, but I do hope that they are self-sufficient and have that ability in-house to manage and operate their own team right here. Next slide, please. So when we begin to partner with the agencies here, recognizing this importance of social ties and community in these regions here, one of the very first activities we do before they even think about standing up their teams is trying to get them to identify the stakeholders in their local world who are overlapping in their interest and needs with this first episode psychosis team here. And we've drawn largely from the model that's been put out by Vinod Shrihari and colleagues here of these 10 stakeholder groups that are hypothesized to overlap with first episode psychosis teams. And so when we start working with the team and they're motivated to doing, one of the first things we'll do is we'll bring in a little figure like this and we'll sit down with them and say, these are generally the broad categories of folks that are going to be useful partners and supporters for your first episode psychosis team here. But we have no idea who these people are in your community because we're not from your community. So let's go through this as a group. We can maybe on our end provide a little guidance of sort of who falls under, what are examples of people in the educational system or things like that. But our partner at the community mental health site can identify the specific people who fill those roles or schools or things like this. This helps us create a map of the people that are going to be important to partner with for the FEP team here. And we try and get our teams to partner with these programs here even before the program opens up to begin to reach out to them to talk about the potential launch of this program here to get early feedback, trust in these programs here. And with some of these agencies, these are going to be the folks who are going to be down the road filling in gaps in the care that can be provided by a coordinated specialty care team, providing those additional services that sort of fall outside of the realm of a mental health center. These are going to be the groups that are going to be potentially referring folks to the program here. And in some cases, and ideally, if this works out, it's wonderful. These are the folks who, if we can early on help them feel like they have some skin in the game here, are going to be contributing money and resources to support this here, things especially like insurance companies and public policy agencies here and government agencies here that could potentially help this agency really ride the financial vicissitudes that come along with operating a coordinated specialty care team here. Next slide, please. Next slide, please. So with COVID hitting in this region here, most of the programs that we've worked with had to do a dramatic pivot, just like all of us have and how we continue to operate a coordinated specialty care team. And we've been able to see these teams do some amazing work, very, really, very independent of us. Again, this is a great example where these teams and their local expertise is so critical in making a successful program in addressing these concerns here. All of the programs we work with have done a rapid deployment to telemedicine services here. But what I think has been helpful for many of them is that because they were covering these large geographic regions to begin with, many of them were already doing some limited form of telemedicine to begin with. So they were building off their already existing expertise in the region here. Many of the regions, even though they've identified and have delivered telemedicine services, they've also found that it's important to have in-person services for folks as well here too. There had to be a balance. Some people still wanted to see their provider face-to-face there. It was a trust issue. It was a, I don't have access to internet where I am conveniently concerned here. So they needed to be flexible and couldn't go 100% telemedicine even in the pandemic here. And during this challenge here, where oftentimes many agencies think about shrinking, what many of the CSE programs we found was that they actually needed to expand, that some of the services that they needed to provide required more staff right here. So if we have to be doing telemedicine and in-person, and maybe there's more home visits and things like that, this is not a, even though everyone else is maybe getting smaller, our team may need to get a little bigger to be able to continue to offer the flexible delivery of services that we wanted. Next slide, please. So I'll end on maybe talking about a little data that we've seen from our sites here that gets back to that question of, does coordinated specialty care in rural settings, does it work? And there are data from other sources that definitely touch on this here, but these are our local data and one that we look on here. And all of our sites, as part of their process of developing and demonstrating their success as a program, we have them track outcomes among the people that are receiving services. So they come in at baseline and they do a set of assessments and repeat it six months and 12 months here. It's actually part of the, we built it and it's not really a fidelity measure, but we've sort of wrapped it into the overall process of evaluating the success of a team in which fidelity and successful outcomes we consider to be sort of the ideal package there. And what we have done is we will benchmark these outcomes against the Raise ETP project outcomes here, because well, if you're doing something that's comparable to that, that's a great bar to something I think meaningful, given really the amazing work that came out of Raise ETP. So here we have actually effect sizes for quality of life and role functioning and symptomatology. These are the big three that we look at here. The larger the number, the greater the improvement in quality of life, the greater improvement in role functioning and greater the reduction in symptom severity here. And what we've seen across our Ohio sites here is even despite having to make changes and adaptions to make it work in their local settings here, they're showing comparable benefits to what we saw in really the gold standard assessment of coordinated specialty care today, suggesting that and making us feel much more comfortable that even with these switches and changes we're doing that we're still carrying the spirit I think of this intervention forward here, where we're trying to do something for people to help them recover. So with that, I'd like to thank the APA for having us to present today here, and thanks everyone for joining us for this presentation.
Video Summary
The video transcript discusses the challenges and considerations in implementing coordinated specialty care (CSC) programs in rural and frontier communities, specifically in Oregon, Appalachia, and Ohio. The speakers highlight the unique characteristics and strengths of these regions, such as strong community ties, resourcefulness, and efforts to improve educational outcomes. However, they also mention the challenges faced, including limited access to mental health services, higher rates of substance abuse and mental health concerns, financial constraints, lack of healthcare resources, transportation barriers, and cultural values that may influence help-seeking behavior. The speakers emphasize the importance of adapting CSC approaches to fit the needs and resources of these rural communities. They discuss strategies and modifications made to overcome these challenges, such as creating benchmark fidelity tools, providing remote technical assistance and training, organizing rural and frontier learning collaboratives, addressing equity issues, and working closely with community stakeholders. The speakers also highlight the impact of COVID-19 on delivering mental health care in these regions and the need for creative solutions, including telemedicine and in-person services. The presentation concludes with data showing positive outcomes of CSC programs in rural settings, demonstrating that these interventions can be effective in improving quality of life, role functioning, and reducing symptom severity in these communities. Overall, the transcript highlights the efforts made to address the unique needs of rural and frontier communities in implementing CSC programs and the importance of adapting approaches to fit local contexts.
Keywords
Coordinated Specialty Care programs
Rural communities
Frontier communities
Oregon
Appalachia
Ohio
Mental health services
Substance abuse
Transportation barriers
Telemedicine
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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