 Hi, this is Jan Reardon and I'm here to present the Kindness Connection episode two. We will have a Kindness Connection show on the third Thursday of each month. I'm very excited about that. Just looking at different ways to make Vermont an even kinder state and community than it already is. And we have so many resources available to really be able to learn how to be kind on a much deeper level. And so today, speaking of just that, where kindness comes from a very deep level, I have the privilege of introducing you to my guest, Kathleen Corpana. So, hello, Kathleen Corpana. Hi, Ann. How are you? Great. Thank you. And Kathleen is not only a friend of mine, but she'll be talking with you about her multifaceted world and the roles that she has as a caregiver and a provider. I mean, I don't want to take anything away as far as Kathleen being able to say exactly what she does. But I can tell you, as a friend, what she has done for her daughter, Martha, is just unmatched. And it's amazing what she does know about the system in Vermont when you're dealing with people that may have different disabilities and she can talk with us a little bit about that and be a great resource for other parents as well. But I've just turned this over to Kathleen and that way she can talk a little bit about her many roles. Thank you. Hello, Kathleen. Hello, Jane. Hello. So where do you start, actually? Yeah. Yeah. So I live in Essex. As you know, I'm a mom of two kids, Tommy and Martha. Martha has autism and she's 22. And I'm also the youngest sister of my brother, Lenny, who had a traumatic brain injury when I was 10 years old. Right. I've been in the traumatic brain injury stroke world my whole childhood. And my family started Vermont's first residential care home for TBI because my brother had a brain injury and it was in 1979 and in those days people were living in nursing homes at age 17 for the rest of their lives. So my mom really spearheaded that. Well, tell us if you don't mind, tell us what happened to your brother, Lenny, to cause the traumatic brain injury, if you don't mind. Because I think so many people from this area will recognize Lenny Burke, obviously the name and talk about being a legend. So if you could talk a little bit about him, which I know you love to do and nobody can do it better, but if you could do that, that would be great. The incident that took place. I'm very honored and proud and very emotional when I talk about it. But so my brother was injured playing basketball, a personal foul that put him into a coma for a couple of months. And so as a family, you know, young kids, my parents were in their 30s. I was 10 and I have three other brothers. And so we all were devastated that his life would be forever changed. And so hopefully he would live. So how long was he in the coma, Kathleen? Two months of uncertainty. Two months of uncertainty. And two months in 1979, 1980 of care that does not exist, that did not exist then that exists now. Absolutely. That's for sure, thankfully. We're very grateful that he had such an amazing neurosurgeon. And so he woke up from a coma of very different personality and we're very grateful he survived. Yes. So being a young girl, I think I skipped most of sixth grade. I lived in California with my mom while she was in a rehab hospital with him. Because she couldn't realize that. We couldn't leave him there. Right. He was 17. So when my mom was there, she really educated herself on how to start her own residential rehab home. Because he needed a long-term care facility and one did not exist. Right. And we did not want him living in a nursing home. So we had many family meetings, we're going to go for this. It's going to be hard on us. Are you guys gain? Can we do this? And so we really came together as a family unit to really support my mom and groundbreaking. So she started a nonprofit, HIS Independence, where she would help other families. I see. Exists today. Right. And she's just started learning. It's called the Rancho Las Amigos Scale. She started learning how to build a program for somebody who had a TBI. Oh, that's fabulous. Dr. Savage, who was not a doctor at the time, was my brother's special educator who taught him how to read again and how to go back and graduate from high school. Right. Because he was a senior. So he ended up going back to high school, graduating the next year with his diploma, walking down probably one of the most emotional days of my life. Absolutely. I was in seventh grade. Right. And he walked and graduated with my brother below him, Kevin, and his class. Wonderful. So it was quite remarkable to graduate on that gymnasium floor that he had been injured on. Right. And speaking of the gymnasium floor, we could, and this is a huge fast forward, but just a few years back, the event that took place on the floor. So here we can talk about that as well. Yeah. So the community has been amazing to our family. Right. And actually, Yvonne Daly is the author of my brother's book called The Bend in the Road, which is different stories of really my mom telling the story of what she went through, really talking to the neurosurgeon about different techniques of trying to get him out of his coma and things like that, and then building the business and then many interviews of our clients and how their lives have been affected. And then an interview of me and my brothers of how our lives were affected. So the community honored us during my brother's coma, raising money for our family to pay hospital bills and help us send him to, he went to Virginia and California for rehab. So we didn't have GoFundMe's, though. Right, exactly. But the community didn't rally it around, which is what? It was these Linnie Burke days, a Jack Healy on the radio who's an amazing voice and the principal, it was Dave Walk, who was at Castleton for many years. Right. And so all these people gathered and I was crying when I talk about this, but they were saying, I was just a young girl and they were saying, kids were coming in with their piggy banks. Oh, boy. And it kills me today, like I did ghost pumps, like kids were coming in with their piggy banks because when a big basketball star gets injured, it's small town, the news and it's beautiful. Right. So the universe would have it that my brother woke up from his coma the second day of the Linnie Burke day, either the day before the day of my other brother's birthday, but all of a sudden he woke up. Oh, my goodness. We had said goodbye to him twice. He wasn't going to make it. You need to say your goodbyes. He's not going to make it. You need to say your goodbyes. And where was he? He woke up. He raised money. Everybody's praying. And all of a sudden he wakes up and it was that in California. That was at the Rutland hospital. Oh, that was down in Rutland. Okay. Yeah. So bring it years later. So that was 79s, 80 years later, my brother passed away actually in 2018. Right. So I believe it was in 2017, the community honored us again. We had this night at the Paramount in Rutland where I can't remember if my brother's book was out then. Sorry, my memory, but we had a panel of the people that were there at that time. Right. Father Levalli, who was the priest at the principal at our high school at the time. And Dave Walk from Castleton, Dr. Savage, who was my brother's special educator, who became a world-renowned TBI expert, building curriculum in London and all over the world just because he dealt into my brother figuring out how his brain needed to be taught. Right. And so he opened up this can of worms that didn't exist. So anyways, the community had fundraisers without us knowing. We didn't know any of this was going on. Oh, that's so beautiful. So we had this panel where we all spoke at the Paramount, and then they gave us this big picture of the basketball court at MSJ, and they renamed it Lennybrook Court. Right. Right. And so they bring out this big poster board, and we're all kind of confused looking at it. So you didn't have any idea? We didn't even know they raised money, and so they did it again, and so they renamed the basketball court Lennybrook Court. Right. Right. So they honored us with the unveiling of it, not that night at the Parano, another night. Exactly. Right. Yet another night. And so we all went to MSJ, Mount St. Joseph Academy and Convent Avenue, and you were there. I know exactly. And that was what I was thinking of as far as feeling that love and the warmth when I walked in. You were all there, and the court was just introduced as the Lennybrook Court. It was just an amazing vibe inside of that gym, and there were so many people and so much love. And then when we talked recently, you said that was the first time really that you could feel how that love had just stayed with you guys. It was like wrapping around your family and holding you so close, and they never let you go. Yeah. It's incredible. It was such a beautiful story. Oh my goodness. Yeah. And then at the time, obviously, that was, you know, maybe what, six or seven years ago. Matt was like basketball there. Yeah. High school, right? Yeah. Yeah. It had to be five or six years ago. So at the same time, meanwhile, as you mentioned earlier, your daughter is Martha, who does have autism. And you've been working endlessly, tirelessly, as far as Martha's barn. And if you could talk about that project as well, because I don't want to run out of time on everything that you've done because of what you and Lenny really went through and what you went through with your family. Thank you. Yes. So I just want to say that my brother passed away. And that night of honoring him at the basketball court with our family was an incredibly healing moment for our family. Because he had stage 4 cancer and no one knew. Because he had a short-term memory problem. We didn't even really tell him he... Sure. You didn't have to, right? We knew he only had a few months and a few weeks, and he kept outliving his life expectancy in true life fashion. Like you did when he was in later, of course. Right. Like he lost him twice during the coma. But that night of being on that really painful court and looking up at the audience and they were honoring him while he was alive, and it's so important to honor people while they're alive. Oh, Kathy. I'm glad you said that. That gives me chills. We don't always honor people when they're alive. No, we don't. We think it, but we don't necessarily act on it. And when you talk about deep kindness, that's acting on it. It's not just saying, you know, it's cool to be kind. It is. It really is. But you need, you know, it's the, it's the emotion that you put in place. So it was just remarkable that that all happened. Yes. Yes, absolutely. And he was so proud and he was just the most humble guy, anyways. But we should see that part. But anyway, so back to Martha. So I had a different childhood than most have because of my brother's accident and my mom, I traveled a lot with her and did OT and PT with him. Right. As a 12-year-old. Exactly. I love doing it. Like, they always say you get your self-worth from in your teenage years. And I'm like, okay, I'd lost have gotten my self-worth in my teenage years from being a caregiver to my brother. Absolutely. Right. And that forms you. Right. And that forms who you are at the core. Yeah, yeah. Those are vulnerable years. So I started Martha's Barn with a couple friends, Sharon O'Neill, who works at UVM, Long History and Foster Care and Kinship Program. So really great background. Very nice. And Andrea Lembessy at the time was a special educator at Essex who since opened Aunt Dot's food shelf. Oh. So she stepped off our board at that time. Yes. And we had another board member step in, Kaylee Flynn, who was started out as Martha's caregiver at the Howard Center, just graduating from UVM. Then she became a licensed behavior analyst, BCBA. Now she lives in Brooklyn. Oh. Has her own BCBA. Oh, wonderful. Yeah. Brilliant mind. Yes. BCBA, if you don't know what that is, it's the science of applied behavior analysis changes behavior. Right. And the treatment for autism is education, you know. So my daughter grew up in this amazing school district, which I love, and did a lot of applied behavior analysis. And so she learned a lot of really great skills. And so as she entered young adulthood, she's not very verbal, but she will tell you what she likes and doesn't like. So I would always say to her, never knowing I would get an answer, because she doesn't have the ability to have a lot of back and forth conversations. Right. I would say to her, Martha, what do you want to be when you grow up? Because you ask kids that. Exactly. And she would always say a farmer with like the most exuberant gleam. Incertainty. Yeah, like, of course. She's going to be a farmer. I mean, she's unbelievably, when she's happy, she's really happy. Right. So every time you ask her, she's exuberant about it. And so years go by, she's still saying she wants to do that. And so I said, okay, you know, let's do this. So Alex Corbanus, my ex-husband and I are planning for her long-term care. Right. And I knew it was going to be a challenge because I knew what my mom went through for my brother. Exactly. And Vermont does not have long-term care for adults with developmental disabilities because we closed Brandon Training School in 1993, which I'm glad they did, but now everyone is in the community. And so it's up to families to, and your agency to find your staff and create a program. And it's an enormous amount of work for people. Right. I mean, the closest facility would be in New Hampshire, maybe, I mean, nothing closer than that. There isn't anywhere in Vermont. We shouldn't be sending anybody out of state. Exactly. Right. We should not be sending anybody a state. And my daughter went through that, which I don't want to talk about. It's a painful thing to talk about for me. Right. But the need that exists is critical. It's a complete, well, and I worked so hard and I bought this house from Martha Corbanus, my mother-in-law, and planned. I'd planned everything. I'd gone by the book. I'd planned it all. Exactly. How we were going to support her and how we would leave the house and a trust for her. And then my daughter goes into crisis and she has to leave the state. So it's really, you know, just awful that my daughter had to leave the state. Absolutely. For all of you. Yeah. Yeah. But so in building Martha's Barn with our board, we're just talking about, like, what can we create? What is the niche that needs to be filled in? Exactly. And Essex. Right. And so our property is agriculturally zoned, which is perfect for Martha wanting to be a farmer. Absolutely right. Right. So we kind of started this little Martha Grows. Over here? Yeah. Martha's Barn. Yeah. And then actually just, you know, to give a shout out to the website so people can go and see all the amazing things that you've put in place as you're getting ready to keep that barn going. So we don't have a barn yet. Right. We are hoping to build a multi-use barn, which our tax account is for gardening. And so our goal is to give vocational opportunities for adults with disabilities to come to run a farm stand. Exactly. And things like that. And then the multi-use barn part will also be, because I know the need. Exactly. So I kind of know how to create a model, sustain it, and meet the need at the same time. So there's a young boy who is following in Martha's footsteps of being out of state. He's in Pennsylvania right now, out of state, and he's 15. And he is who Martha was at that age, being away from his family. Exactly. Right. So we want to build an upstairs apartment for him, where he lives with a caregiver, downstairs his classroom space. I have a great relationship with my school district Essex, with ST Associates, the behavior program. And then that multi-use space will be school for him during the day. He live on the premises, as well as we have an animal stall as part of our, on our website, you can see the architect, the architectural model. The rendering is perfect. So what I was going to say is, there's nothing like this, obviously, in the state of Vermont. Not even on a, not residential, but maybe, you know, drop in daily type of activities. Nothing really along these lines at all yet. Not as far as like a career path. As a career path and a, like a social recreational get-together safe kind of space. Right. Right. And that's why we did it. Exactly. And it just seems as though, even though I know you've exhausted many, many different resources for funding, I just have to believe there's a grant, again, being Vermont and a pilot program, that we could really have this model put in place, especially with the foundation you've already organized. And to be able to have something like this be that pilot for the United States where you can show, again, what can happen when a community comes together and, and kindness is involved. Right. Right. I did write a grant, which did not get accepted. Okay. And I kind of think of that as, well, maybe that's not the right time for us. Right. Or there's so many different grants. What's happening now is the cost of lumber went up so high. Right. Right. And so our, you know, our $500,000 amazing multi-use barn is going up to $750. Exactly. So it's like, so, so. Maybe the time, because now things are coming back down again, so maybe now there's another opportunity for a different grant or multiple grants to get smaller amounts. But I just have to believe, given, as you say, this Essex community and the school system, that we would be able to have something like this that would basically fill, you know, a need immediately. It's not as though we'd have to wonder whether or not it would work out. I mean, there's just so many benefits to it for, obviously, for the individual that's suffering with the, you know, whether it's autism or any type of disability, and then for the family. And, you know, it just would solve so many problems as far as, you know, having a quality of life that they deserve. It's a great model. Exactly. Yes. There are a few residential, but not nearly enough. And I know there's a group of about 80 parents that are working toward really changing the system in Vermont so we can have sustainable homes with groups of people. That's beautiful. But now it does not exist and it's absolutely frightening. It sure is. Yes. Keeps me up at night. Absolutely frightening. Right. So I want to share Martha's house. That's beautiful. And kind of get a group going there. Right. Anybody who is lucky enough to have a piece of property, let's just start building models and that's kind of what I would love to do. Exactly. Right. Easier said than done because the system has to work to do that. Exactly right. But we have a great relationship with the Howard Center. Yes. And collaboration could work out obviously so well. Yes. I think obviously there's not only is there a need for this to happen right away, but it's pretty much the same as child care when there isn't any infant care around and you just there's so many people waiting and waiting and waiting and you have to do something about it. Right. And here's the chance to just start moving in that direction and I think as things grow then the foundation is that much stronger. Right. And parents are powerful voices. Exactly. We know how to work within a budget. We do. We know budget neutrality. We know what's needed. Exactly. We know what corners can be cut. And I would think just economies of scale having a model like this would be financially beneficial for the state of Vermont versus some of the services that may not be available right now, but it's due to cost and there could be a better way. I think people don't know and we should talk about it. That's why I'm talking. I want to talk about it. I don't think people know that like my daughter does not really have a long term solution. Right. No, I don't think anybody would think that. No. I think we would, you know, we're in Vermont again. We think just the opposite. I mean, you want to know where your tax dollars are. Sure. Right. You want to know what Medicaid pays for. Right. There's such a stigma with Medicaid and I'm always happy to share our story, but you know, it only pays for a billable hour. Right. It doesn't build a structure. And so it's, you literally have to build it yourself. And how do you do that when you're really, really exhausted? Right. Well, you've done that. And in the weeds. Right. I know. But I mean. Being a parent and caring. Right. And trying to work. Right. So that's why collaboration is so important. Right. And the resource that you are for so many in the community too is such a gift, Kathleen. Thank you. I absolutely love it. I am. I really do. I'm taking care of people with traumatic brain injury and stroke now at our family business. Right. And I love it. I love. So your family business is where Lenny was. Yeah. It was right there where you're working now. Yeah. Not the same house, but yeah. Right. Same town. Yeah. And how many houses total did you say? We have three licensed and my brother, Kevin, has two with just women living there. Oh, that's beautiful. Yeah. And that's, they're all in Vermont? They're all in Vermont. Yeah. That's beautiful. So we honor his legacy every day. And I don't know if I mentioned Jen, but I'm very honored to honor her legacy as well. Thank you so much. And what I love in talking today and anytime with you is the fact that we have that connection of their souls just being so kind. And when you have somebody like that in your life, it changes you forever when they exist and when they are kind of an energy around you. It doesn't really. We're really lucky. We are so lucky. We don't know. It's hard and painful. We're really lucky. We are. And you don't realize that. Certainly for me, even being, you know, like when you're younger, you just don't, sadly, at least, you know, understand that. And then all of a sudden when you experience it, you're just so grateful for that type of a connection. And to have somebody with so much good influence of the world in such a positive way after they're gone, as well as while they were here, you don't like to just have it always be after. If the combination doesn't get better, you can only hope that you can have that type of a legacy. And we're both very blessed. Yeah. No, I love this show and I love, I hope that other people start realizing like, wow, if I count my blessings, I really have all these really great things going on my life. Exactly. It's so true.