Finding Common Ground, Creating an Inclusive Community ILRU Teleconference 6/29/2004 2:04 PM Central Time Sharon Finney: Good afternoon everyone and welcome to today's presentation, "Finding Common Ground and Creating an Inclusive Community". Sharon Finney: My name is Sharon Finney and I am with The Community Living Technical Exchange at ILRU, and today's presentation is being sponsored by The Community Living Technical Assistance Exchange at ILRU, in collaboration with Rutgers Center for state health policy, funded by the centers for Medicare and Medicaid services. Thank you all for joining us. I have a couple of things that I want to go over with everyone today regarding the options, in terms of self-muting. Because we have so many people in our audience today, if you could hit the pound key, and that will self mute your phone, for everyone's listening pleasure. That way we don't capture all the external noises that are present. And to join the conversation, when David, Sally and Cindy are ready for questions, you just hit the pound key and that will take you off and you will be ready to ask your questions at that time. I would like to take a moment right now to let everyone introduce themselves' who are on the call today. So, feel free to introduce yourself and what state where you're from and what project you are working on. Andy Petty: Yes, my name is Andy Petty and I am from the state of Missouri. We are working with a new office of Community Independence here, and it is a program to work with transitioning individuals out of nursing facilities. Amy Allred: This is Amy Allred in Durango, Colorado. I am the Independent Living Coordinator at the Southwest Center for Independence and also the nursing facility, the NFT, um...one of the navigators for the state on our pilot program. Cindy Cates: I am Cindy Cates and I am from Nashville, Tennessee. I am with the Department of Mental Health and Developmental Disability. Amy Thomas: Hi, this is Amy Thomas. I am from the Center of Excellence and Disabilities. I work with David, Sally and Cindy on various grant projects, and I am the Information Specialist with our Real Choice Program. Kris Gainer: Hi, this is Kris Gainer. I am from Connecticut, from the University of Connecticut Center for Excellence and Developmental Disabilities. I am the coordinator for both the Real Choice Grant and the C Pass Grant here in Connecticut. Jim Cromains: Hello, this Jim Cromains, and I am with the West Virginia Developmental Disability Council. I am here with Jan Lily Stewart, Advocacy Specialist. Diane King: My name is Diane King, I'm in Denver and I am a Grant Administrator for an Independence Plus Grant. Christie Brotchner is here with me, and she is a Compass Grant trainer. Sharon Flunts: Hi, this is Sharon and I'm from Indiana and I work at the Bureau of Quality Improvement Services and I am the Project Director for the QA/QI Real Systems Grant. Diane Hanson: Hi, this is Diane Hanson. I am in Washington and I work for a non-profit that does disability projects, and I'm participating as a consumer on our Real Choices Consumer Cast Court. Our project right now is planning and putting on a statewide conference on disabilities. Kay Green: Hi, this is Kay Green and I am in Jefferson City, Missouri. I'm with Missouri Department of Mental Health. Sharon Finney: Have we introduced everyone? Jim : Hi, this is Jim Wolderwolf and I am sitting here with David and Sally in West Virginia. I worked with Sally on the Transitioning Conclusive Communities Grant or Nursing Home Transition Project and I was co-facilitator with David Hasbury at the Minding Common Ground Event. Steve Icken: Hi, this is Steve Icken from Med-Set, I'm one of the Technical Systems Providers, and I have done some work with Nursing on Transition Grants, but that was in the past. Brenda Franklin: This is Brenda Franklin, and I do the Real Choice Grant in Louisiana and I just do the financial part. I am listening in for my boss. Sharon: Is that everyone? All right then, I think that we are ready to introduce Lee Bezanson, she is one of the ILRU Management Partners working out of the Center for Home & Community Living at Boston College. Good afternoon Lee. Lee Bezanson: Hi Sharon thanks very much. This is Lee Bezanson, I'm with the Community Living Exchange in Boston College and I have the pleasure today to introduce Sally Brutchfield, David Horvath and Cindy Spinks from the West Virginia Finding Ground Project. Sally is the program Manager with the Center of Excellence in Disabilities at West Virginia University where she is responsible for what they call the Tick Grant, which is a Nursing Home Transition Grant and their C Pass Grants as well. Sally has a Masters of Arts in Anthropology. Before she came to West Virginia, Sally worked in Education and Transition in Colorado, Michigan, Mississippi and Hawaii. Sally is going to discuss the factors that motivated people in West Virginia to come together in the purpose of promoting Community Inclusion. And she'll describe some of the key stake-holders that have participated in the process. David Horvath is a Policy and Training Specialist with the center. He is assigned to the C Pass Grants specifically. He has a Maters Science in Rehabilitation Counseling and Vocational Education. Before he came to CED, David was a coordinator for Transition Services for the Commonwealth of Virginia and Executive Director of a local chapter of the Arch in Pennsylvania. David is currently enrolled in a doctoral program in Educational Leadership Studies. He is going to describe the collaborative process that all the participants in Finding Common Ground engaged and he'll discuss the activities and outcomes since the initial meeting as well as reflect on lessons learned and some future directions which West Virginia hopes to take. Cindy Spinks is a member of the C Pass Advisory Board in West Virginia. She is a recipient of Medicaid Home and Community Based Services targeted for self-direction in West Virginia. Cindy has a Masters Science Degree in Rehabilitation Counseling. She is actively involved in a number of the Real Choice systems change activities. And she is going to give her perspective as a participant and also describe the West Virginia Anti-Stigma Campaign that's been gaining momentum. So, I welcome you all, and Sally do you want to start off? Sally: Thank you very much Lee. Yes, I would first like to start by just actually giving acknowledgment to a few folks who sort of aloud us to take a step forward and move into having the opportunity to having Finding Common Ground occur. And Lee, part of that goes to you and the people at ILRU because you have really provided a lot of enthusiasm, some of the resources and also financial support for some of these things to happen that we might not have thought about before. And also I believe that you've provided, as well as others with those of technical assistance, a lot of proactive encouragement. So, we thank you. It's also the process of Finding Common Ground we were very much supported by three commissioners within the state of West Virginia, from the Bureau of Medical Services; Nancy Atkins has been very supportive by providing a lot of support staff to Finding Common Ground as well as many of the Real Choice initiatives. Those staff members from the policy makers, to the financial folks that tweak things to make it happen. The Bureau of Senior Services with Ann Stradlemeyer has been really wonderful, she has had a vision to move forward towards self-direction services and her encouragement and allowing staff to participate in a lot of these activities has been very welcomed. Eugenie Taylor, who is the Commissioner of the Office of Behavioral Health and Health Facilities has provided staff and has actually got her staff sort of waiting to jump on many of the band wagons in terms of directed services and moving towards more inclusiveness in communities. We thank them, we also want to just quickly thank our Director of CED, as well as the Deputy Director for supporting us and encouraging us really to be true to our grants, but also to grow and enhance beyond perhaps what our projects have envisioned. Because a lot of the projects happen perhaps several years after they have been written, so they encourage us to go with the flow and move forward in that way. So we really appreciate that encouragement. I would like to just state also for CMS to have foresaw of having and providing technical assistance to all of us who are trying to move the system forward through our Real Choice Grant. We thank them for providing the funding, we have utilized it in West Virginia so much and providing sort of a value added for us in resources in opportunities to meet with other states on a variety of other things. We thank you very much for doing that. And then, um, really we want to thank David for being a part of the initial vision and dream, but actually taking it to provision and coming together with a report, in terms of being able to share what we thought worked, what didn't work, and taking us to the next step. So often we tend to do something, but there's not a lot of follow through. David has taken the time to pull all of the information together and to have followed through and to get feedback form a variety of folks to make sure that it really reflects the direction that we wanted to go. So thank you. What brought us together, initially I guess I would like to say, West Virginia has five Real Choice Grants and that has been wonderful because there has been a lot of communication with the key stakeholders, in terms of, moving the state towards that inclusive community, towards home and community services and those kinds of things. And it's true that communication, perhaps just a little kernel of an idea actually exploded into having this opportunity of finding Common Ground. Initially a few of our staff members from C Pass were actually in the throws of developing a Self Directed Personal Assistant Service Model that we hope would get under, we would get going as a demonstration. And we thought that it was really key, our philosophy is bring all the stakeholders together, so that they're a part from the inception of an idea, so, we thought that we would bring people together in that respect. We knew that there were a lot of people out there already doing things that have lots of information, lots of knowledge, and we really felt that it was important to have that knowledge and get their support in this process. From that kernel of an idea from self-direction we knew with all the other Real Choice projects and specifically with transition, that folks just don't have the services and support that they need to be in a community, and they certainly don't have the ability to self direct those. So, we really thought as a larger opportunity to address inclusive community as a whole. So um, some of what Lee encourages us about what was actually happening in terms of communities coming together and many other agencies coming together through a form of graphic communication, with sort of took her idea and ran with it, with her support. We really wanted the idea to bring the aging and disability community together to address inclusive community because many of these grants really encourage that component, so often the disability community might be separate from the aging community it was important to bring everyone together so that we had a common vision in that respect. And it's not to say that in fact for what has already been done by many, many people who make things happen, we wanted them at the table to help, and to share their knowledge with others perhaps who had not gotten that information. It was truly to have the desire to have sort of a cross disability, cross life spanned vision and to plan in that fashion, so we try to incorporate the folks that could represent that. We have many promising practices here in West Virginia. We are also very much aware of a lot of them across the nation, therefore we thought this was an opportunity, not only to hear from folks about what works, but also what are others finding that perhaps might work and what direction do we want to go. So, the opportunity to bring people together for that, we saw through this mechanism. In bringing a variety of stakeholders together it maximized our using resources in the state. Although many of us work on different projects, perhaps together we don't necessarily know how all the pieces fit together. By having everyone at a single meeting and being able to dialogue on what's happening, what could happen and what do we do, and how do we work together, we felt that could move the state forward in a positive direction. So we were there, we wanted to create an opportunity to create this dialogue, and really, a desire amongst all of us to find that common ground and to promote that community inclusion. Folks that were involved were um, we had about 38 folks, they were selected groups of individuals at this meeting. Um, there were eleven state agencies, and some of those agencies aren't necessarily always at the table. We um, the healthcare authorities does a lot of policy development for um, um and determines how services are rendered sometimes was there. We had the Office of the Olmstead Director, the investment for behavioral health as well as the investment for long term care, Rehabilitation Services, Behavioral Health Services, the Department of Admins., and the Department of Housing, and also we have and I hear on the line, we have folks from the Developmental Disability Counsel who were very much involved. So we really had a wide range of state agencies, as I said about eleven, as well as many of the Advocacy Groups and consumers, such as Cindy herself, and a variety of others that are part of this process. We enlisted Dave Hasbury's help in terms of the graphic facilitation, our CED is known for actually doing a lot of the person extension planning with a graphic component to it, but we really felt that it was important, some of those people who play those roles needed to be participants within this process, rather than having to take the role on in doing it. So the planners of this, David, myself, Marcus and people from the Bureau of Senior Services, Ruth Burgess and Julie were actually participants in this process, and needing, being able to express a lot of their thoughts, wishes, desires and concerns. The process was a two day event and it was facilitated by David Hasbury from Canada, who really is very knowledgeable of a person centered approach to planning, strategic planning, and did a marvelous job and in terms of doing the graphic facilitation as well as sort of moving with group in the direction the group wanted to go. Jim Wumledorth who introduced himself earlier, was also very much a helpful tool and sort of giving some substance to some of the things that perhaps we were trying to get across in terms of saying, therefore, helped with sort of, reflecting on a lot of our ideas that we were posing for the group. It was a wonderful two day event, we hoped although we felt it was a catalyst, it's not to say that there wasn't a lot of things, there weren't a lot of things already going on in West Virginia, we sort of got the tip of the wave and got to continued to ride it, and David will share how there has been some outcomes in terms of that. So that is sort of how we got a start. David Hasbury: Okay great, thank you Sally. The first thing I would like to do is, thank Leandre Waldo-Johnson for posting the report on the HCBS Clearing House so that is available to our listeners today, and it is available in the PDF file, so if you have a chance you can call it up on your computer as we go through this. We won't be reading the report-- our intention really is to share some of the highlights for some of those who are engaged in similar efforts in other states, and for folks who might want to replicate a process such as the one that we participated in. First of all, I would like to tell you a little bit about West Virginia. West Virginia is a small rural state, our entire population is only 1.8 million people, we have the most medium income in the United States and the highest medium aged, as well as the highest percent of our population having disabilities. In fact, 48% of our seniors over the age of 65 report having a disability. West Virginia also however has the highest rate of home ownership in the nation, and the lowest percent of it's population is residing in institutional settings, due in large part to the early Advocacy efforts of the Developmental Disability Counsel and other Advocacy organizations within our state. Sally mentioned that we do have five of the Real Choice Grants, and these have really built on what were already strong relationships. In a small state people frequently know each other on a first name basis. So, we have advocates who regularly pick up the phone and talk to their legislator. And really those close relationships make it possible for communication to happen almost over night and that really is one of the characteristics that help our state in our efforts. The process that we engaged in under the guidance of Dave Hasbury really combines the elements of three different processee's. Appreciative Inquiry is one of those processee's, it's a process where you ask, "What's working well and what can you learn from what's working well?" And, how can you apply that in other areas of your operation. We also incorporated components of the Path Process and I'm sure for most of our listeners, they are familiar with the Path Process, including the visioning stage and then going back and looking at where you are now and sort of the tension that is created between your desired vision for the future and where you are now and how that can be a motivating force for action, and then also use components of group action planning. So it really was a group of different processee's quite effectively to guide us through a series of questions that we all engaged in. And as Sally said, those of us who plans this event, also participated, it wasn't like a focus group event where we were divorced from the process, we were very much in fact a part of the process. And one of the things that was reaffirming was the unity of division that was shared between folks who have agency level position as well as advocates, and really a commonality of that vision for the future. The first question that we engage in that they posed to the group is, "Who are we and what brings us together?" Dave defined the word inclusion in Latin, and he said loosely it means to "close the door behind you once you're in." And so he asked participants what they are doing to creating a sense of being "in" for folks in West Virginia. And through the simple process of introducing themselves and describing what they are doing with creative sense of people being "in," it was clear of the different roles and perspectives that were present in our participants, in our advocates and folks who are involved in service delivery, service coordination, people that are in administrative positions, and people that are involved in policy development. And another commonality that is among our group, that many of our participants wear multiple hats. You have folks that are absolutely shaping policy, and we have other folks who are on the service delivery side who are shaping policy and advocating as well. So, it was really nice to see the commonality there. On of the things that was also apparent there, was the different sphere's of influence within which participants operate and how the sphere's of influence sometimes overlaps and sometimes don't and so we have a lot of opportunities to learn about what each other are doing. And in a small state like this, a lot of people are engaged in multiple efforts. You see the same folks at meetings time and time again because they are involved in so much. Some of the themes that emerge through this, this um, promoting Community Inclusion is really a process not an event, and we couldn't say that more strongly, because even though we had this two day event, it was really just the tip of the iceberg as far as our efforts in promoting Community Inclusion, and we realize our work and our efforts here are really just beginning. Participants were really committed to addressing issues across the life span, there were not disabilities that specific agenda's put forth, this really was a common agenda that arose through the commonality and the purpose that we all have, the vision. Folks in West Virginia are really committed to self-direction, that was apparent, it came out as one of the actions and it is something that people are excited about and the opportunities that it represents. And there really was a sense of prevailing optimism while some folks had expressed some frustration over sort of the slow pace of change, and sort of, been there done that, and too much focus on process, etc. The overwhelming sense among participants was one of optimism and possibilities of the future. The next question that they posed to our group was, "What is our vision for the future?" And you sort of couch that as, what would it look like if we were successful at these efforts to create a sense of being "in" for people. Participants, not surprisingly described a world in which people with disabilities and need long-term care needs, enjoy aspects of life that really have nothing to do with disability. Really, a world in which disability is transparent or invisible. This is a theme that has echoed throughout the other work, and they also describe communities having high expectation, for all members, class barriers based on disability being non existent, people who play supportive roles in the lives of others being valued for their contributions. I was struck after the fact that Looking at the vision that our folks articulated for the future of West Virginia, that the changes in the service systems to persons centered more supports models, really parallel the changes described by Jan Misfit and David Hagner in their book, which is referenced in the report, Part of Community Strategies for including Everyone." Another thing that Lee Bezanson noted was the similarities to the basic civil rights under the ADA, that what people envisioned for the future is something that we already have on the books, but doesn't yet exist in reality in all arenas. Another similarity that struck me was the similarity to the "shared value" statement of the Rehabilitation and Training Centers for Family & Community Living. So, this is nothing new, this was reaffirming and yet at the same time, some what disconcerting to know that we're not already there, that we still need to be examining and advocating for things that are really basic, fundamental civil rights for everyone and make our country and our community stronger. The next question that David Hasbury posed to the group, "Where are we now and what could we be doing differently?" Participants described a lot of societal barriers, things present in our society such as architectural barriers, attitudinal barriers. They also described a lot of characteristics of the service system. For instance, categorical funding, based on a disability diagnosis or disability label and how that creates segmented programs and services that divide us rather than unite us. They talked about the prevalence of the medical model, and even for known medical services such as home and community basis support. The institutional bias inherit in the funding of services and support, the inordinate amount of control or direction that providers seem to have over the system of services. The emphasis on programs and facilities, rather than building. A compliance orientation to programs and services, rather than a quality of orientation, and when we talk about quality, talking about quality of care, opposed to the quality of life. So, these are some of the barriers that participants shared. One of the things that was noted here, really after the fact, is the similarities to John McKnight's work, in which he describes how systems intended to support different franchised people, actually frequently interfere with naturally occurring community support. And that's a very real issue, those of us in the disability service arena need to really examine to what extent those services and support interfere with naturally occurring support. Participants also shared with us a variety of antidotal evidence of some of the daily realities faced by folks with disabilities. One of our participants talked about how his service provider won't transport him across county lines when he needs to attend a meeting or a conference or even a social event because that is against their policy or their practice. Another participant described how they don't receive the hours that they are authorized to receive under one of our waiver programs because of the lack of available services in their part of the state. These antidotal stories and real life issues really kept us grounded throughout this event. The next question that they posed to the group is, "What are we doing well?" Participants talked about, again the nature of West Virginia is that we have open lines of communication, strong partnerships, and people are increasingly becoming uncomfortable with the status quo and advocating for change. In fact, you might even characterize it as a ground swell that is happening and I've seen it reported through elsewhere as a quite resolution. In West Virginia, several things have happened recently to indicate change and positive movement in the right direction. We have now, increase choice, individuals disabilities and long term care needs have increase choice of service providers through the listing of a certificate of need process in one of our programs, increased opportunities for self-direction, we have a self directed case management option with our agent and disabled waiver and we are soon to have a complete self-direction option within our agent and disabled waiver. The infusion of principles with persons that are planning seems to be taking hold. The Center forExcellence and Disabilities and others in West Virginia have provided some training in technical assistance, and we are starting to see this effect the provider practices, we are seeing more agency with choice type models, where you can pick your own worker and the agency will hire them and things such as that. And then the Real Choice Systems change initiative certainly has impacted our state. The number and the variety of those and the interrelatedness of them all. At the end of the first day, planners got together with Dave Hasbury to sort of take the pulse of the group and really see how things were going, and we made a midcourse correction, and this was based on the concern of some of our planners and participants, some issues of urgency had really not risen to the forefront in our discussion. Specifically the issue of nursing home transition, several folks expressed concern that individuals, friends of theirs, were languishing in nursing facilities while we were planning, and that really struck a lot of us. So, Dave and the planners made a decision to really revisit "where our we know," a renewed attention to this issue of what are urgent issues that need our immediate attention. Some of the things that arose on the morning of the second day really we are encapsulated as follows: People are devalued in our society, that this devaluing and the appearance of frailty leads to a care taking approach that fosters dependence and also to a warehousing approach. And this isolation is supported by our system, regulation state and federal policy is provider practices, etc., funding. And this removal of people from our communities, robs our communities of the value of their experiences, their contributions and their inherit value. And their isolation to them feels like a prison sentence where they die an emotional, spiritual and physical death. And in fact, after a few months of finding Common Ground, one of our advocate friends, a friend of his died in a nursing facility, who he was trying to support in returning to the community. An in fact, my friend Ken Irving, one of the favorite quotes that was included in our report came from him, and he said, "how can you have any humanity when your whole life is broken down into 15 minute units of billable services?" And for me that quote just really rings true, and Ken has certainly lived that and shares it from the heart and you can't escape it, it's inescapable. So, we talked then about, what can we do together to change this situation, to address the current reality and move towards this vision of inclusive communities where all folks have a sense of reality of being in. We talked about a variety of systems changes, for instance committing to ending the waiting lists for waiver services in our state. Prioritizing individuals on the existing waiting lists based on urgency of unmet needs as other states have done already. Rebalancing the system through opportunities that are currently being made available in that area, and putting an end to out of state placements. We have a lot of young folks in West Virginia who are sent out of state for residential treatment for emotional support needs, etc. Also supporting home ownership for folks with disabilities and long-term care needs, so they can be vested and have a place in their community. We also talk about a wide variety of other strategies; they really range the gannet, from legislating advocacy, to conducting a media campaign, to really grass root community building. And I was struck after the fact, looking at these possible activities with some of the parallels between the model communities discussion, that was hosted by the Community Living Exchange Collaborative, that is also featured on HCBS website. Some real parallels there, so other states are grappling with these same issues, other states are identifying some of the same strategies, using some of the same resources and going through this process as we are. Next, Dave Hasbury posed to the group this question - "What will we do together to address these issues and realize our vision?" And the way we do this is, we narrowed down into six groups, and each of the groups looked at the different lists of possibilities and selected one strategy among those possibilities of worthy of focusing on. And the six that rose to the top in this fashion were: publicizing success stories, legislating advocacy, organizational resource sharing, collaborative training, promoting self directed service models and rebalancing the system. Participants then signed up to work on each of these areas based on their interest and their availability. Some of the groups even began right away by developing immediate action steps and agreed to follow through with the actions that they had brainstormed to address each of those areas. Since Finding Common Ground, the initial event, a lot has happened to pursue these six areas. And I have kind of one caveat, many of these activities were already on their way, and some of them may have already happened anyway, however they gained some additional momentum from Finding Common Ground. And as we said before, participants in Finding Common Ground really were involved in so many of these initiatives, and so when we had folks there, they were already involved in some of these efforts. The first of these that we were really involved in was the pursuit of Self Directed Service Models, the, excuse me here, we got something happening here in our room, our cooling system seems to be on the fritz, there okay... Self Directed Service Models, several of us who participated in Finding Common Ground, were able to collaborative with the Bureau of Senior Services on their application to the Robert Whit-Johnson Foundation for a Cash and Counseling Grant, under the expansion of the Cash and Counseling demonstration to ten additional states, and so, that was an immediate tangible activity that we could get involved in to move towards this vision. Another one is the rebalancing, in West Virginia, several folks who participated in Finding Common Ground and others in the state submitted West Virginia McCasa, which is version of the McCasa Bill in our state, so, that was an immediate again follow up to this type of opportunity. Also our state currently is considering the rebalancing opportunities that are being made available through the most recent Real Choice Grants. It's been encouraging since the meeting also to see many of the ideas and the vision that was articulated reflected in our states draft of this new Olmstead Plan. To give just one example, the rebalancing initiative, the effort to end the waiting lists, and the practice of prioritizing individuals on the waiting lists, these have all made their way into the Olmstead Plan. Again, not that they might not had been in there anyway, but they were bolstered and put forth through this activity as well. And now what I would like to do is turn it over for a few moments to let Cindy Spinks, one of our participants share with you one of the other exciting activities that has happened since this event, and was really strengthened by this event, that is the Anti-Stigma Campaign that has taken root here in West Virginia. Cindy? Cindy, are you with us? Hello? Cindy, you will need to press your pound button of you are on mute. Cindy Spinks: Okay, can you hear me? David Hasbury: Yes, thank you. Cindy Spinks: Okay, sorry. Thank you David. I just wanted to briefly identify myself. I am a quadriplegic as the result of an automobile accident, which happened 20 years ago. I am totally paralyzed from the neck down and I have a little bit of movement with my arms, that enables me to drive an electric wheelchair with the help of splints on my hands, and I am a recipient of the Medicaid Waiver Services. And that provides a homemaker to assist me with my daily activities of daily living. You know, such as taking a shower, getting dressed, getting in and out of bed, getting in my wheelchair and using the restroom, so forth...Without this assistance, I wouldn't be able to get out of bed or function throughout the day, so it is vital that I receive dependable services. And the services that I've been receiving as of date have been inconsistent. This has been very, very frustrating! And when I heard about C Pass, and joined the Advisory Board, I became very excited about possibilities. C Pass will hopefully increase the opportunities for self-direction. For individuals like myself, it will give us another option and hopefully increase independence and we will be able to gain more control of our lives. And while at Finding Common Ground, at the meeting I heard of a campaign that will be starting in the future. I was very interested and signed up for the campaign, which I heard was going to be another avenue for community inclusion. And this campaign is the Anti-Stigma campaign, and our goal with this campaign, is to promote positive images and abilities for persons with disabilities. And some of the strategies that we plan on utilizing are, public service announcements, personal profiles to include photos and individual stories to develop awareness, an ability awareness tool kit. And the ability awareness tool kit, we would like to have ideas including facts and figures, myths and realities, disability singularity "do's" and "don'ts." Tips for conducting disability with the big and little letters of the ability, capital letters, disability awareness events. We would like to target audiences such as schools, colleges, rehabilitation services and community agencies for this tool kit. We would like to develop a portable display to be used for various exhibits to promote our message. We would like to get a proclamation from the Governor to develop a media guide. Have a speakers' bureau and provide ability awareness training for the individuals in the speakers' bureau. We hope to develop proved material such as informational brochures and have local media coverage during our event. We are hoping for a kick off date sometime in October and that hasn't been decided exactly when yet, and October is the National Disability Employment Awareness month, and is designated by the US Congress. So, that's right where we are at now with the Anti-Stigma campaign. David Hasbury: Okay great, thank you so much for sharing that with us Cindy. And I'm sure our listeners can see why Cindy is such an asset to our C Pass Board and also why her participation in this event was so valuable to us all. I would like to reflect now on some of the lessons learned in future direction and a window of opportunity I think is presenting itself to all states. In terms of lessons learned, despite our best effort to be inclusive with folks with disabilities, important stakeholders were still not represented in our event. Particularly we would have liked to have the participation of more people with disabilities and their families, including older and younger persons. Also service providers, we were a little shy on service providers' representation. And as Lee pointed out, Lee Bezanson; pointed out, we really lacked representatives of congregate service settings, such as nursing facilities, and I really like the way Lee stated it, she said, "You need to get these folks at the table and help them develop win-win and exit strategies." And as I have been reading more and more about model communities, and about communities coming to an operational definition, we automatically, many of us I think, tend to think of the nursing facility as not part of the community. Well, it's time that we changed that, and that the nursing community, the nursing home becomes part of our community and vise versa. Sally is involved in an effort called the Eden Alternative that is pursuing exactly that mission. Another lesson learned is really that our process of selecting actions was somewhat limiting. By having only one action per group, arose to the level of being selected for immediate action. Many of the actions that were selected really didn't address some of the issues of urgency. You know, collaborative training and resource sharing are certainly important and necessary, however they may not be up to some of the tasks of changing some of the folks daily realities in an immediate and tangible way. The majority of the actions that were selected also, really if you look at them, they are targeted at systems change, not really at community building, and so we recognize a need and an opportunity there that we are really excited about and I will talk about that a little further. And then finally, one of the biggest lessons learned, at least for me is, I think we really failed to anticipate the extent of the organizational resources that are required to sustain collaboration and provide timely follow through on activities, even getting the report out. This was not a part of any of our assigned roles here, this was something that we sort of volunteered for, took on, and as Sally said, in addition to what we we're already doing through C Pass or Real Choice. And so we hadn't budgeted for it, we haven't scheduled for it, we hadn't assigned anybody for it, we didn't realize that the event was going to result in six action teams that could benefit from a list served being developed, and materials being shared with them and some technical assistance and support. And so we are sort of scrambling now to figure out how to meet those needs because those are important needs, and we want to follow through and be more supportive. In terms of, and that really leads us to the future direction, in terms of future direction, we think that it is important that we expand our opportunities for additional stakeholder participation, we are looking forward to future events in which we can be even more conclusive. We really need to revisit the list of, what we said we could do and how it relates to what we will do, and prioritize actions. Whether it's based on urgency, such as Stephen Cubby's Matrix of Urgent, but not important urgent and important, etc. and things of that nature. To really narrow down and focus on things that will make an immediate and lasting change. We need to provide additional support to these selected actions and those teams of individuals that have agreed to undertake them. Whether it's through the development of lists serves to support them or the definition of local budgeting, travel expenses, um, what have you. And then finally, we really need to examine the relationship to other disability and aging initiatives in our state. And where does Finding Common Ground fit in with these other initiatives. We've got so much happening in our state, that we don't want this to be one more activity that is duplicating what others are doing. We want to make sure that it adds value and plays a unique role. And then also, move our discussion to focusing on community building, moving from systems change, systems changes is important, but it's insufficient to the task of changing daily realities that folks with disabilities and long care term needs face. I'm really excited because I recently spoken with our real Choice coordinator about the opportunities that have some of the Real Choice local incentive grants, go to funding model communities. I've had the opportunity to do some research on the work that is happening in New Hampshire, the work that is happening in Connecticut, and several other states toward local community buildings, building. And we have a similar effort here in West Virginia that is focusing on livable communities for retiree's. And so we need to look at what are the opportunities for linking with those efforts, which have many of the same goals. And then sort of reflecting on the process as a whole, we were just really thankful to be able to serve as a catalyst for this event. There is a tremendous value in bringing together diverse stakeholders and the participants in Finding Common Ground really appreciated the opportunity. When someone like Cindy can sit down and participate with an agency, or with a key administrator, or mid-level manager, that is a great opportunity and we are very thankful to bring that about. We also have to recognize the daily realities faced by people with disabilities and long term care needs. And while continuing our efforts at systems change, really figure out a way to impact the larger community, and I'm so glad to see so many others face and recognize this as well. I guess I would like to mention the window of opportunity that I think is available to us all. And that is, with the aging of the baby bomb generation, more and more disability can be seen as a natural part of human experience, which is something that many of us have held true for years. I think that there is an opportunity for that to even become more accepted, adopted and have an impact on activities. The CMS Real Choice Grants really have brought together the disability and aging service systems in ways that I have not seen in my twenty years in disability services. And for instance our relationship with the Bureau of Senior Services here in West Virginia, it is incredibly strong and they are very supportive of self-direction. And on our C Pass Advisory Board, we have a representative from AARP, and I hadn't seen that prior to this, so I think that the CMS Real Choice Grants and the aging of the baby bomb generation really present us with an opportunity to harness the combined energy of these two groups to really begin to effect change, and what will basically become the majority of our population. In our report we listed a number of our resources that we would encourage listeners to go to. It was really reaffirming to me after our event to be able to consult with these resources and learn what's happening in other states and read from some other authors. And it's given us an opportunity to take a more scholarly approach to this prospect of model communities and community building, and promoting community inclusion, which we haven't previously taken, and so we are thankful for those resources. Again, we are honored to have facilitated this collaborative process and I only hope is that our efforts are worthy of those who we only seek to support. Thanks so much, and I think that all of us would be happy to take questions. Jan: David? David: Hello? Jan: This is Jan from West Virginia. David: Yes, hi Jan. Jan: I have questions for you. Lee: Jan can you speak up please. Jan: Okay, I'm moving the phone, can you hear me now? Lee: Yes, that's better, thank you. Jan: Can you hear me now? What do you mean by-- the nursing home becomes part of the community? It's part of the community. David: Okay, great, thank you Jan. The content here as I understand it, and I hope Sally will help me out here because she is much more involved in this than I through her Nursing Facility Transition Grant and also through the Eden Alternative. When I was speaking of it Jan, we're talking really about more of an open door philosophy of nursing facilities. Where young people, animal, plants, etc. are a part of that setting, and people across the life span come and go through nursing facility doors on a regular basis and folks in nursing facilities come out into the community, the broader community on a regular basis. But that is my conceptual basis from what little I know, but let me ask Sally to tell you a little about the Eden Alternative. Sally: Hi Jan. Jan: Hi. Sally: I think that one of the things that we've been trying to learn about and somewhat promote, is that nursing facilities is a part of continuum of care as it stands now. And what we are trying to explore is the avenue of making that more a part of the community. In that, if someone requires significant support, medically and otherwise to be in a facility, that actually the community is a part of that facility, that people are able to come and go, all ages of individuals to be able to come and go, is not really a place, it's part of the whole process of lives. And there is an organization called the Eden Alternative, that really brings in the community as part of the aging process, and it doesn't mean it is a "place," it really is more of part of a process. What we are trying to do somewhat through our transition to include the communities is talk about that. If in fact; if people are wanting to transition; and we are hoping that they are transitioning back into the community. There are a lot of things that can be done while someone is in the facility to be prepared for that transition back into the community. And that is getting folks from the field to help with various skill building and be a part of that. To have people be out, go to the libraries from the nursing facility, as we are transitioning. Really to meld that and make it a part of what people might need. It is not a promotion of nursing facilities, but in saying, it's part of the process and hopefully part of an open door element. David: Great, thank you Sally. Jan: I have one more question. What is a model community, in which you are talking about? David: That is an excellent question Jan, and one of the things that we really need to reach is sort of an operational definition of community. As I have been, I will share it and I welcome many of our listeners to chime in on this as well, because there are folks who may be further along this path than we are. Model communities- really is another word for community inclusion and what we are seeing is a variety of approaches. Some, some, basically the people in the community come together from diversion groups. Whether it's city managers, city planners, recreation employment leisure opportunities, etc. and look at how they make their community inclusive of everyone. And some folks are focusing on architectural barriers; others are looking at programs and services, people are looking at living settings, opportunities for alternate housing arrangements,etc. And so, I think that the sky's the limit in terms of what one's approach might take, but the bottom line is to make sure that the community is inclusive and excepting and embracing of everyone. People use a variety of different tools that we're going to plan to develop into including community mapping or what also known as resource mapping. Also which is a process of taking a look at the resources that exist in your community and mapping those resources. And looking at the personal resources that exist, and what skills and abilities people bring, whether they happen to have a disability label or not. They have all sorts of other characteristics and value that they bring to their community. And many model communities are even looking at promoting what is sort like called, social exchange or sort of a bartering system. And again, promoting natural support instead of artificially provided paid support as the sole means of supporting folks in their community. Jan: Well that's good because I was a little concerned when I heard that term because it said something about, something about retirement, about people that are in retirement have already experienced this model community living, and I was afraid that you were talking about retirement communities. David: Yeah, thank you for that opportunity to clarify that. What I was referring to was the livable communities initiative that is going on in West Virginia. Where four communities, I believe in West Virginia, have been identified as livable communities, because of things like, access to health care, transportation, social support, things of this nature that are attractive to retiree's and make living, enhance the quality of life for retiree's. That I'm seeing, at least in my way of thinking, that there are some parallels there and some things that we could learn from, and that these communities might also be ripe for considering on how to be more inclusive and embracing and enhance the quality of life for all of their members, not just retiree's. Jan: Okay, thanks. Sally: Are there other questions or thoughts? Lee: Sally, this is Lee Bezanson. Sally: Yes ma'am. Lee: I wonder if you could share with folks the story you told me about one of your senior centers. And when they started thinking about consumer direction for services, actually went back and applied it to the senior center and it turned everything upside down. Sally: Yeah, I would be glad to. Actually in our state, one of the areas on aging and also seniors, they play a dual role, actually participated, we put out through our transition project, some RFD's, a very small bit of money, but some RFD's, to ask people to address what they are doing in their community to build sort of a persons centered approach to transitioning and supporting folks in their community. And one of the persons who responded to that was a senior center in Roan County, and with that, they have a pretty good idea about working perhaps with a center for independent living, and developing some ramps and doing a variety of other things. It didn't quite have the element of persons centeredness in their plan, they had some ideas, and we learned from that and we brought people together and we actually talked through with some participants, as well as consumers and folks that had actually applied for the RFD's and took them through a process of persons centeredness. The director of that senior center got one of the things, that I call "Aha," he got it, he understood what persons centered meant. And what he did with that, he took it back to his agency and he started to say, Wow, why should we start telling people, the seniors, the seniors that come to our senior center what they are going to eat, why don't we even include them in the process of what they want, what their desires are. So this gentleman, Larry Dunt has actually upended his whole senior center and asked, "What is it that you want, what is it that we want, what is it that you want us to be doing?" A gentleman that was ninety-one said, you know, I have never made a quilt; I want to make a quilt. And Larry said, well, why don't we look at that. And in fact, that person with that desire and his own vision in what he wanted to do, now that is an activity instead of some of the activities they thought seniors should be doing. They've also addressed that this gentleman is on our C Pass Advisory Board as well as his nurse, who is responsible for all the personal care. It has been a wealth of information for us, because there has been some resistance in terms of self-direction. For especially folks who are maybe in their homes and less able to be able to take care of themselves, then if they chose self-direction they were fearful that there would be some risks in what that involved. But through their queries, through their concerns, a model that we are trying to create, is going to be very, in fact, have integrity for everyone in terms of their concerns, but integrity for the folks that want to be self directed. Larry has since now taken over a hospital that is really in dyer straights financially. And what he is doing there is phenomenal, he may not call it persons centered now, but now it's called clients centered. And they are moving that hospital in a very persons centered approach. In terms of making sure that the people are driving some of the systems, how they receive services and what services they received. So this has been a wonderful, blossoming in Roan County. And, so that was just from one little event that was held, and he got it. Is that was you meant Lee? Lee: Yes, thank you very much. I think that we are just about out of time. Does anyone else have any questions? Well, David, Cindy and Sally, I want to thank you for sharing with us. I just think that "Finding Common Ground" worked out really well. David: Well, thank you for the opportunity, and for being part of the process with us Lee, we really enjoyed having you. Lee: Thank- you. Sally: Thank- you. Lee: Bye everybody. Cindy: Thanks for joining us. Thanks very, very much, that was great.