 Green Mountain supports services to empower neighbors with disabilities to be home in the community. Major support also includes Washington County Mental Health, where hope and support come together. Ala Israel. All people know limits. Hello and welcome to this edition of Ableton On Air, the one and only program that focuses on the needs, concerns and achievements of the Deaf and the Able in Vermont and beyond. Before we get to our important show today, I would like to thank our sponsors, Washington County Mental Health and Green Mountain support services. With me is Roy Gustenberger of First Person Services, and thank you for joining me on this edition of Ableton On Air. You're welcome. I'm very pleased to be here. So, explain what First Person Services is in Vermont and how it came to be. Well, we're an organization that brings management and training expertise to work with organizations and groups of people to help advance person-centered practices. When you say first person-centered practices, what exactly does that mean? Well, the idea behind person-centered practices is to place an individual who's receiving support, who's accessing a service system to get support to live a full life in the community, to make sure that services are organized in a way that keeps them at the center as opposed to the system. And organizations, nice organizations like Washington County Mental Health and Green Mountain Support Services are organizations that are focused on trying to be person-centered and do very well with that. But it's a disciplined kind of approach where you identify practices and ongoing habits that really make sure that all of the demands of the system don't distract you from the needs of the individual. When you say distraction, exactly what does that mean? Just to consider, a lot of people are afraid to get services, but they don't know the problem with today's society. A lot of people are shuttered, like the elderly and people with special needs. They don't know where to get the services. So, can you explain a little bit more about that and how easy it is to access services? Well, access is an important thing. Certainly, the state of Vermont offers a variety of services through its agency of human services and is engaged in the Vermont system in a nice partnership between the state organizations and private nonprofits that are out there that are organized to provide a range of services and supports. And Vermont has a nice regional system where each area that you live in, Vermont, there's a local agency that's either a designated agency or a support organization that they can go to to find out what they're eligible for and what kind of support they can have. People come to organizations designated agencies like Washington County Mental Health Services because they want to live full lives in the community, and they have a vision, they have something they want to accomplish, and they need supports to get there. So, when we talk about distraction, your question about distraction is to keep public funding flowing and to keep a designation in place and licensure and certification. Systems and employees of organizations really have to work hard to make sure that they comply with all of the regulations. That kind of mandate is something that agencies can't get wrong because they'll go out of business. But it does have that tendency to be one of those things that are at top of mind as opposed to what the actual needs of the individual may be at a particular moment, the change they want to see or their strengths and what they want to achieve in terms of their life goals. Well, okay, when you say mandate, I know that the Americans with Disabilities Act has changed over the years. And there's some loopholes or problems that need to be fixed within that piece of legislation. In your opinion, how do you think it can be fixed in relation to what you do as a service provider or in management? Well, the Americans with Disabilities Act was, of course, a milestone, a major change in federal law, which mandated a lot of great structures that are in place nationally that need to be in place in each one of the states, including the university centers on excellence for DD services, the DD councils, and the advocacy groups such as Legal Aid and Disability Organizations. And also Green Mountain Self-Advocacy as well. Exactly, exactly. So all of that nice infrastructure has been put into place. Like anything else, we look at something like that as aspirational, something that we need to try to achieve. I think of it like our Bill of Rights or our Constitution, something that was put into place that we haven't quite gotten to. We really haven't achieved all of the equality and the justice for all that's essential. The Americans with Disabilities Act tried to bring that closer into reality, and we're still trying to, I think, meet the kind of mandates and the kind of vision that's embedded in that. How I would change it, I don't have specific recommendations at this particular point in time. I know that there's organizations that are really studying how we can improve those kind of access services and their great resources in the community to connect with for sure. In terms, okay, knowing that there are prejudices in this world now and problems and systems regarding prejudices, do you think prejudice around people with special needs would change or can it change in your opinion? I think it needs to change. I see the core mission of organizations like First Person Services and some of the service organizations out there to build whole communities. The way that we build whole communities is to ensure that everybody is recognized for the gifts that they have to share with the community. My friend Liz Weintraub talks about all means all. When you're talking about justice for all, everyone must be included and contribute. My opinion is that our communities are stronger when everyone is included. As we move forward, we're looking at all of us, the marginalized groups in our society, trying to reduce prejudice, as you say, trying to reduce stereotypes, trying to reduce any kind of effects that disenfranchise people and bring people into the core of community life. Certainly people with disabilities, in my experience, have a tremendous amount to contribute to our community and to our society and to our culture as a whole and making sure full inclusion happens is critical. I also believe that disability is a natural part of the human experience and that it's not one of those things that's necessarily an us-them kind of dichotomy, but that disability, just as with aging, is something that is natural part of what it means to be human. We go through phases in our lives when we have different kinds of challenges. We have loved ones, family members, neighbors who experience disability. So we're really talking about all of us and making sure that we're all included. What? Okay, so since you said that and first person services, can you explain some of the trainings that you give or some of the workshops or trainings that your organization gives? Yes, one of our key focus areas is what's called person-centered thinking. And person-centered thinking is a set of strategies and approaches that organizations and people who provide supports and people who receive supports can use to help make sure that the, as I was referring to before, that the person remains at the center of planning, of problem solving, of organizing supports and making sure that they are oriented correctly. We think about person-centered planning as a real core approach and core strategy in organizing any kind of services, and that's where a person is brought into the center of conversation and engagement around how to establish a clear vision and a goal for a future in one's life and to how to really find and locate and enable those resources, hopefully natural resources, typical resources in ordinary situations that can be mobilized so that somebody can live a full life. Person-centered thinking are disciplined practices, certain things that we teach in a workshop, and it's a workshop that's designed by an entity that I'm a member of that's called the Learning Community for Person-Centered Practices. It's an international group of volunteers who are involved in services, family members, also includes self-advocates, consultants, trainers from around the world who use a standard set of practices and teaches them in a 12-hour introductory workshop. We love providing that through first-person services. Not only the workshop itself, but we also credential people within organizations to give the workshop. So they get a certificate or diploma of sorts? Correct. They get a certificate that indicates that they are credentialed according to the standards of the international learning community. The wonderful thing about that is it is indeed a learning community. We think about the pursuit of person-centered approaches as a journey, something that you start and stay on and continue to grow on, and to be part of a learning community, to be actually able to talk with people who are using the same kind of strategies and approach and have the same set of core values in Canada and Australia and the United Kingdom and other countries around the world. Israel, where there's training like this going on, we can actually connect through the Internet and have common conversations on discussion boards and really try to perfect our approaches and skills over time. You've been in the field of special needs for disabilities for 40 years. Can you explain about your experience? Sure. Well, it's 40 years because I went to Middlebury College in Vermont and when I was seeking a particular job and was looking around the community, I was a psychology major and I was very interested based on some other experiences of being involved in the disability services. The first place that we looked through at that time, and this was 1979, was Brandon Training School. That has an infamous history. It does have an infamous history, but I did have experience working there as a recreational aid during the summertime actually, and then got employed in one of their day programs. It was an extraordinary experience for a young person coming out of college to really, I was familiar with people with disabilities as I was growing up but it was much more segregated society there and to have this world sort of open up, this place of exile where people with disabilities were placed, where they were separate from community, where they were isolated, was, and to see the conditions there, transformed me. I became very committed to the idea of trying to, as I was referring to before, building whole communities. There must be something better, there must be a better approach. I had the opportunity to work with a local agency after that and over the past 40 years, that's really represents the period of time of de-institutionalization, the development of community-based services and the really exploration and expansion of services that are dedicated to helping people be part of their community. When you say de-institutionalization, can you, in your vast opinions, can you explain what that is? Sure, with Vermont was the first state to look at alternatives and build alternatives to an institution. The institution ended up, was one of the most innovative approaches for its time in the 19th century when they were created but they evolved and changed and became very bad places for people to be and a problem to be solved. When we're talking about the de-institutionalization process, there was a commitment from leaders and family members who came to the table and said, what can we do to make sure that families get the resources they need where they live, where people who want to experience full life in the community don't have to be exiled from the community to get those services. And so it was a shift of resources and a shift of focus and a shift of innovation in the state of, in the part of the state of Vermont where people could then, one, move out of institutions, create alternatives but also have a sustainable long-term vision as to what would that alternative be. So Brandon Training School was closed and Vermont rather has had an alternative system for that many years. Many other states in the country have remained with institutional care. Unfortunately, there were only 13 other states that followed suit after Vermont and it was just recently that states have been asked by the federal government to walk away from that institution. There are still 39 states that are institutionalized or have what we call, as in New York, they call them developmental censors. That's right, that's right. And institutions by other names. There was a horrible one in New York called Willowbrook State School and there was no schooling going on, there was no training, nothing. We just force fed, not closed and the media had to, Geraldo Rivera jumped over the wall and closed it with help. You bet, Willowbrook was infamous for that but there's many Willowbrooks across the country. Again, separate is not equal and isolation is not the solution. So that's why there's a dedication and focus on providing typical settings, opportunities for people to form normal and typical relationships with others, to be fully employed, to live with others who are engaged in freely given relationships, where people's gifts are recognized and they are both givers and receivers of care because that's what it means to be a full member of community. Okay. You were working in Brandon State School, being the fact that in the world we live in now with a little bit uncertainty about how services are for people with special needs due to funding. There's scaring people saying that we might revert back to institutions at some point. Do you think that might happen or do you think there's too many organizations that won't let that happen in your opinion? Well, that's an interesting question because one of the things that we have remained focused on over time is that it's fairly easy to say that the buildings don't exist anymore, but the fact is that there is an institutional mindset that can come in and be embedded in any place that somebody lives, right? Yes. Where somebody is dehumanized, where somebody is exploited, and so on. So that risk of isolation, loneliness, exploitation can exist in any system at any time. There won't be a time when there will be an investment, I don't believe, in bricks and mortar and separate buildings where people live in dormitories and so on. But if we don't appreciate what the values that drove the development of the institutional era of our system, what they were and recognize that if we're not vigilant, they can come back, then they will come back. Because institutions, for example, during, well, I call it the Little House on the Prairie Days, 1800s that time, they put people that were visually impaired and blind in institutions, locked them away, you know, that type of thing. And like the time of Louis Braille, the school that he was at didn't treat him too well in Cuvier, France. And so, you know, institutions existed, they, you know, over time changed. But I guess it's people's mindsets, correct? And how things should change. That's right, that's right. It is a mindset. And it is, I think, a set of community values. One of the things that we hope that happens is that if we continue to think of whether we're supporting people who are aging, whether we're supporting people who are going through mental health challenges. And nursing homes are horrible as well. Yes. And if we continue to foster relationships, if we continue to emphasize natural supports, that the larger community will be thinking of all of us as us. And we tend to defend us, you know. We tend to say if changes happen and somebody, we start seeing a group of people being taken away or marginalized, that we will react, step up and react as a community to say, no, that's got to stop. That's my friend. Or that's the person who is my coworker. Or that's a guy I used to go to school with. If we have those kind of common experiences, then hopefully the kind of advocacy that will happen will be citizen advocacy. Not a specialized advocacy, but one of neighbors helping neighbors and saying we've got to do things better. We've got to do it in a different way. So that's one of the other reasons why a community-based services is so critical is it keeps our communities whole when they can be whole. And I've talked with a lot of organizations that are providing services in Vermont, where they think about the importance of their role in strengthening communities and strengthening natural ties that can happen in communities. And they look at creative ways to do that as opposed to specialized services. So how can we strengthen clubs and organizations? How can we strengthen opportunities for people to get to know each other, to defend each other, to love each other, to be engaged in hospitality with each other? Customer service. Customer service. So that those things are lifted up as community values and communities remain strong. So these creative kind of approaches, moving away from specialized services and becoming an embedded community organization that helps natural community supports be even stronger and more inclusive is the kind of innovation that's happening in Vermont. And because Vermont has been for so many years working on community-based services and it's stepped away so long ago from institutional care, we have a very deep, rich experience. And as I've traveled around the country and done some training, person-centered thinking training in other states, I found that they are in many cases just starting the journey of person-centered approaches or community-based services. And they're starting to experiment with some of the things that was happening in the 1980s or 90s in Vermont. They're able to take some of our experiences and build on them. And that's another reason why that kind of idea of a learning community where we can, other states can learn from Vermont. We can learn from other states as they evolve in contemporary society and we can all get better. I'm very optimistic about the possibilities. And I think that particularly if we're able to stay dedicated to person-centered practices. That's another reason why we moved to Vermont because there's more services here. Or not every service, you know, people need but they can pick and choose which ones they need. There's choice. Choice and control are two of the core features that we all want to lift up. When there's not choice and control, there's a sense of being treated as an object as opposed to a person. People don't want to come in and work with a community organization which it feels like they're being handed a menu. And if they don't like the food on this menu, they got to find another restaurant. An organization that's person-centered looks at the individual, says what do you need? Let's understand your strengths. Let's understand your hopes and dreams. Now how can we be of service? How can we help you find that in natural resources in the community? Natural relationships in the community. And pursue the ordinary first and develop the specialized later. But one way or the other, making sure that they stay committed to the idea of helping people look for lives. In your opinion, I ask this of all my guests, what are the misconceptions around people who especially when they first meet them? Positive or negative. What my sense is? Yeah. I think that that varies very much based on personal experience. And if I could use my own life as an example. As I was mentioning before, I grew up actually in New Hampshire. As I said, I went to college in Vermont and started my work here and then went back to New Hampshire, worked for a number of years and recently returned here. But the community that I grew up in was segregated in a number of ways. But in a key way is the people who had developmental disabilities, my neighbors, I did not get to know. They went in New Hampshire to Laconia State School, which was very similar to Brandon Training School. So I never met them. So when I approached and met people over my life as I grew older who had disabilities, they were strange to me because I had not been familiar, I had not grown up. But I contrast that with my experience of my children who lived in a community where kids were included in school. They were in athletics. They were in school events. They were in classrooms where they got to know their neighbors who may have Down syndrome, someone who may have cerebral palsy, someone who may have a variety of learning disabilities. They got to know them. And so as a result, as they've now grown up and become young adults and are having children themselves, it's not foreign. It's not out of the ordinary. It's typical. And that's the way it should be because it's a natural characteristic, as I said, disability is a natural part of the human experience. And I've learned that lesson very much from the early pioneers who were parents, who really were fighting for that inclusive school system, who were fighting to make sure their kids were known and engaged with others. And I always admired them. They were always working tirelessly, it seemed. And one of the reasons and explanations for that kind of early work and heroic and extraordinary work, and part of those advocates, is that they realized that they didn't want moms and dads of the future to have the experience that they've had. They wanted it to be easier for parents in the future. And they were able to do that. So going back to your question, I think in some ways it might be generational. I think that younger people are more accepting and more familiar. And that's the source of my optimism that I was referring to before. Can you tell me, I mean we have a little time left, but can you tell me, can you tell our viewers some of the future goals of your organization? How long has your organization been? We've been in existence for two years. We have been doing training. We also have a nice podcast that's called The Lovely Podcast. And one of the things that we're doing this next year, we're credentialing a number of trainers in Vermont, in New Hampshire and in Massachusetts. So we're hoping to expand, we're hoping to create a New England learning community of credentialed trainers that are embedded in organizations and create a local community where we can, our goal eventually is to have a local conference, a local series of events. There is a national gathering, they're called learning community gatherings that occur in every July in Oregon, Portland, Oregon. But also regions of the country have their own and we're going to create one for New England. So we're going to continue with that training and develop that community. Tell me a little bit about your podcast, The Lovely Podcast. Yes, The Lovely Podcast is a set of conversations that we have with people that we describe folks who are curious and committed and creative in building whole communities. So it's folks who have that kind of vision, nice conversations to explore how they've had that happen in their lives and what they're doing with that today. So we've been interviewing some great self-advocates. We've been interviewing some agency leaders. And you'll be interviewing me. And we'll be interviewing you. We're very happy to have you as a guest on the podcast as well. So that's been a lot of fun and it's available on all of the distribution systems, the iTunes and Spotify. It's all available through those apps. And the podcast educates people about advocacy. Yes, to share ideas and to share those values to make us feel that we can think about things in a fresh way and continue to try to build a whole community. How has advocacy changed in your opinion over the years? I know we have self-advocacy groups in Vermont and that type of thing. So your opinion on advocacy and why it's important. Absolutely. One of the most extraordinary aspects of advocacy is when parents, family members and people who experience disability themselves develop leadership skills and start developing pure connection. And how that's changed over time is just to see some of the people come up through the years. There's been folks who championed the Americans with Disabilities Act that you referenced before who were able to get something through Congress and signed by President Bush. And Justin Dart was a great leader in that. But there's a lot of folks that have come behind him and that are coming up in the future. That gives a level of hope that's just extraordinary. And the power of being able to share common vision and also the ability to say it's okay. Some things are scary but this is what I've done and this is how my life has turned out. Yours can do that as well. Are just really amazing. And families loved ones as I mentioned before are great leaders. And just to comment, if it wasn't for parents, a lot of these organizations or grassroots organizations started with parents. Absolutely. If it wasn't for parents and you wouldn't have organizations. Absolutely. And another element to that, I'm glad you mentioned that, is one of the recent guests on the podcast, the lovely podcast was Liz Weintraub. I heard that. Wonderful. And she was great. I've known her for a few years. And one of the things that she reminded us is this theme that you do hear from families and individuals, which is nothing about us without us. And the organizations that I've been a part of, I led an organization, a regional agency in New Hampshire for quite a number of years. The board of directors had at least one third participation from family members and individuals with disabilities themselves. And that's also the case in Vermont. When you make sure that people who are affected by the service system that you're in charge of or that you are a leader of, that they're at the table when decisions are made, it changes the quality of those decisions. It improves them. So that idea of inclusive decision making and inclusive leadership, co-leadership is a feature of Vermont system and something that's really been tremendous. Do you think all the situations, all the, because I know how this current administration that we're in now with this current president, organizations are being cut, budgets are being cut. Does it all have to do with money as far as the field of disabilities? Are we in a big mess or are we not? We have to continually be vigilant because as you said, we look at a current, a new administration and we always have to take a look at what are they bringing in in terms of leaders to the table and nothing about us without us. What do they have for priorities? And what are they going to do with the budget? Certainly funding, Medicaid is a core funding source. They keep saying they're going to cut it? It's always on the table, it's always being questioned and social security in terms of practice, regulations and standards, they're always being reviewed. So we always have to be vigilant, we can never stop. It's one of those reasons why community organizations think so much about developing natural supports is that if you are entirely dependent upon public dollars, then those can change with the political winds. But if you are investing in the strength and resources of the community and natural supports, those can help you through and those friends don't go away. Love is more resilient than political winds. And so when we look at the, we have to be worried about this current administration, we've had to be worried about Democrats and Republicans alike. Because yes, unfortunately, we have a tendency in our society and our culture to say, can we afford this? And not to question whether we can afford military endeavors, for example, or bailouts of large corporations. That seems to not take any debate at all, yet we spend hours and hours talking about rates in Medicaid and so on and where we're going to get the money. We can do it if we have a commitment to a whole community. Personally, I believe it should always be there. Real quick, where can people reach you and also your podcast, where can they listen? Well, they can reach me at direct phone line is wonderful 802-777-9456. I'm at my email is Roy at FirstPersonServices.com. We have a great website. You can link with us there. We have a Facebook page. We also have a Deluvly Facebook page. So find First Person Services on Facebook. Find Deluvly on Facebook. Does Deluvly podcast have a website all its own? We have a page on our First Person Services website. It's a great place to go. You can actually listen to the podcast recordings right from the website or pick up your smartphone. Open up the podcast app, search Deluvly podcast and it'll show up and hit subscribe. D-E-L-O-V-E-Y? D-E-L-O-V-E-L-Y. D-E-L-O-V-E-Y. No, it's FirstPersonServices.com. We've integrated that in our website. Well, I would like to thank you for joining me on this edition of Abledon On Air. For more information on First Person Services, you can go to www.firstpersonservices.com. Again, Arlene Seiler, my wife could not be here today, but we'd like to thank you for joining us on this edition of Abledon On Air. We would like to thank our sponsors, Green Mountain Support Services, and Washington County Mental Health, as well as our guest, Roy Ghostenberger of First Person Services. Thank you for joining me on this edition of Abledon On Air. I'm Lauren Seiler. See you next time. Major support for Abledon On Air, Green Mountain Support Services, to empower neighbors with disabilities to be home in the community. Major support also includes Washington County Mental Health, where hope and support come together.