Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issue is important to us and our entire families.

Hello and welcome. My name is Katie Arnold and I am the Executive Director of the sibling Leadership Network. As many of you know, the sibling Leadership Network is a national nonprofit for people who have a brother or sister with a disability. And I'm really excited to be joined today by brothers john and Dan Carmichael. I want to share a little bit about their background, and then turn it over to them to share more about their sibling story with us today. So john Carmichael is the CEO of gt independence. It was co founded in 2004 as part of a lifelong mission to make it easier for people of all ages and abilities to lead independent lives. During John's younger years, he and his family helped his older brother Ben, who has intellectual disabilities live in his own home and support staff. Today, gt provides industry leading self direction tools, resources and financial management services to assist 1000s of people and living the lives they choose. JOHN is a frequent public speaker, and an advocate for the importance of self determination. He often challenges organizations in the field to retire and do more to make self determination possible for anyone. And I know that self determination is something that the sibling Leadership Network really values. So Dan's bio, is that Dan Carmichael is a writer, former stand up comedian, and co owner of one of the nation's leading fiscal and employment agent services duty independence, which vows to help people live a life of their choosing, regardless of age or ability. In his writing and daily life, Dan espouses using the power of humor in the face of adversity. Whether navigating his son or his own autism, the cavernous angioma and insert cerebellum, working to treat his daughter's rare disease, or his biggest challenge coping with the tragic death of his first child to a heart defect. Dan, along with his wife, Holly, have found a way to survive. His writing has been described as painfully and hilariously honest. And as a refreshing new take on the personal memoir genre. At duty independence, Dan has focused on creating an award winning inclusive work environment, designing workspaces that are efficient, accommodating and visually appealing. his memoir, never too soon, is slated for a 2022 release. So just reading those BIOS, you can get a snapshot of how impressive these two brothers are. And I'm really excited john and Dan, to get to know more about you both today. So john, could you start out by telling us a little bit about your background of your sibling experience and living with siblings with disabilities?

Certainly, caveat First, let me say that it's a pleasure for us to be here today. We're really excited to talk with you today. And we really are behind the sibling Leadership Network. I think it's a unique experience that we don't talk about as much what it's like to be a parent of a person with a disability or to have a loved one who has a disability but to be a sibling is it is in a different thing to and so I just love the work that your organization does, and what it stands for. So what was it like to grow up with an older brother Ben is our older brother, by the way. And the middle brother or as Ben calls me, the medium sized brother Dan is the younger brother. And I think it takes a long time for for siblings to appreciate, really the gifts that you've been given when you have a brother who is is like my older brother. When I was when I was young. I you know, we played out in the yard together and did all kinds of stuff together. And as I got older, you know, I started to become aware of what Ben's disability was, and I you know, and I spent Some time struggling with how to how to deal with that, and how to tell my friends about it and how to, you know how to be with that publicly. And, and so there was, you know, there was some struggles there. And then as I got older, and I learned to appreciate Ben, for who he was, and for the perspective that he gave me on my own life, I began to realize just how fortunate I was to have him in my life.

Great during that, john, and Dan, can you tell us a little bit about your experience, living yourself with a disability, and then also your sibling experience?

Yes, of course, you know, I've got the unique opportunity of seeing from a lot of different angles, you know, also raising a sibling of disability, which is real interesting, because he and I can share some of our experiences together. You know, I was as the baby, something like nine years younger than Ben. So, you know, I went through a lot of my life with just he was just another big brother, just he and john, it was not that different. You know, we gave each other a hard time just as any good set of brothers would do. As I got older, I got a greater appreciation, understanding, and I got very protective of that. And, you know, that was great. But what I noticed was that my friends at the time, picked up on that and also got protective event. And later in my life, I realized that my relationship with my brother was changing and affecting the views of people not in my family for the better. And that sort of inform me on how important it was on a day to day basis to to continue to protect Ben's rights and his and his ability to self determine what he wanted to do in life.

Yeah. And can you talk a little bit about how your sibling experiences and your life experiences have kind of led you both to help start gt independence?

Excellent. Absolutely. Yeah. And Damn, you can jump in here. But so Ben, for a large part of his childhood lived at a place called St. colletta, in Jefferson, Wisconsin, and it's kind of a famous place that where people with intellectual developmental disabilities lived. And he came home in his early 20s. When we say came home, he came back to Southwest Michigan, where the business is headquartered where my family has lived in where we've all grown up and still live. And this was about the late 90s. And of course, in 1999, we had very famous Olmstead Supreme Court decision. And at that time, we were we were talking a lot about D institutionally institution, institutionalization, and helping people to live in their homes and communities. And so Ben was kind of part of that, in a way and he came in, he lived at first in a group home. And that home, it was a difficult experience. For him the the program that they had at that group home was not the same program that Ben was interested in. And as a young 20 somethings person, just like anybody else, you can imagine that, you know, an environment where you really just want to be kept safe, and sort of sheltered from any sort of life experiences. It's not really what you're looking for. Like, it certainly wasn't what I was looking for. And so ultimately, Dan was able to find a way to live his life where he got to live in his own home, you know, no exit signs over the doors or fire extinguishers bolted to every wall. And he got to choose who came through his own front door, to help him do the things he needed to do to live independently and to participate in his community. And when he did that, he blossomed as an individual, and he really began to experience life in the way that we all want to experience it. We hit challenges. We had disappointments. He had, you know, he had friends. He was busy on the evening sometimes. Yeah. So that ultimately is the hope that we have for our loved ones. Whether or not what they identify as having a disability, ultimately, you know of life that is one that they choose. So I was I was inspired, my family was inspired by that experience and felt like we were in a unique position to help people get that experience. And trustingly, it was through this funny thing called a financial management services, which helps you do payroll. But honestly, at the core of self determination, self directed services is this ability to decide who comes through your front door. And that means you should be able to hire them, and you should be able to fire them if you want. And when you and when that when you have that power, you really start to take control of your life. And so that's what that's what helped us to start gt independence, we wanted people to have control over who came through the front door. And that's what really drove us for the past 16 years of operating the business.

And just to watching, then go through the process of selecting his own caregivers, was such an awesome site. And knowing that he had the power to mess up to, you know, that, that's something you don't often think about is the the power to make a mistake and learn from it. And to not have bumpers on the sides of every decision. It was just a really cool thing. And he you know, he did interviews, and I'll spare the details, but culinary skills were paramount.

You gotta get someone who knows how to cook, and eat well. Seems like a smart guy. That's great. Well, you know, as you're both sharing, I mean, it really, I think you're really highlighting how you know, the sibling peers perspective that you have with Ben, and that siblings in our network have, is really important, and how, you know, often, because we're at that, you know, same age, similar peer level, we can relate more to what our brothers and sisters with disabilities want. And while sometimes, you know, I know, my parents can be go into, like, protection mode more so and, you know, of course, want the best for my sister with a disability. But you know, sometimes my sibling perspective, I think it really helped push my parents and families to, to, like, think about ways, you know, my sister could live a more self determined life. And it seems like both of your, you know, your perspectives, as siblings really helped, you know, your family, and creating this family business that is helping so many more people. So can you talk a little bit about what it's been like running a company together? as brothers, and you know, why it's important for gt independence to, you know, be a family owned business.

It's mostly it's ruined a few dinners, I'll be honest. But to to be able to work, you know, with our family is, is just, it's so cool. You know, as a little brother, especially, you know, when I was six, the idea of working with my big brother, when I was an adult, I'm sure would have made me just, you know, over the moon so. So it's been quite an experience. And it gives us a little bit of, you know, I don't I don't know if empathy is the right word, but a little better understanding of what some of our clients could be facing, you know, and, and how important their decisions are.

Yeah, Dan, you know, your first comment about the family dinners, I think will resonate with so many of the people in our network, because families are so complicated, and, and, you know, those family dynamics are, are really part of part of navigating life together and figuring out what really is, you know, best for each person in the family. And, you know, I think that, that so many people can relate to the challenges of that. And so can you, can you share a little bit about how you've done that as a family business, bringing all your different ideas together? Because I think, you know, I know that, as it as a sibling, I have different ideas and a different perspective than my parents often and sometimes that's intention. And sometimes you know, it's good to have that tension to work through and then to be able to come to a solution that is best for everyone in the family. So can you speak a little bit about that?

Yeah. Oh, God. No, please, I have to say, you can tell. Probably, we come to the dinner table with a lot of different perspectives. Yeah, we there, we have different interests and talents. And, you know, you're talking about running a business as a family and, you know, ruined dinners. Yeah, there there is. But there's also this sort of subtext, always this language that we speak that, that, that only we understand. And it's so easy to slip in and out of, you know, it's, we're a family, we're business partners, and we're family. And we're business partners. And really, I think anybody who owns a small business, or as a family business understands that the real trick is learning to sort of modulate that, right, yeah. And you have to, and you have to discipline yourself somewhat to, to, to, you know, to allow yourself to have those two experiences, because you almost ruin both of them, if you if you don't, and then the other thing that, you know, from perspective of a sibling, you know, we mess with each other. Right? We bed, when he's at the dinner table, he's the big brother, he's, you know, Dan, and I have a hard time wrapping us up in headlocks. And given us nuggies. You know, he's picking on us, and yeah, and so. So, you know, that dynamic is, is fantastic, honestly, and one of the great things about, you know, it's been who brings us together, it's Ben, who gets us around the dinner table, both because of who he is, but also because we've sort of dedicated our lives and our careers to, to helping people like Ben, so we wouldn't have, we probably would have gone in separate directions, we wouldn't have pursued our own interests, you know, and we might not have the opportunity to, to be with each other all the time. Because if it wasn't for them, it feel really, really good.

Yeah. You know, the, bringing different ideas to the table. And, you know, we've learned, I feel like to, to disagree and communicate in such a empathetic and respectful way. That, you know, we've blunted a lot of the, a lot of the complications, and that, you know, we've we've extended that to the family of our employees as well. And, and it's something that that has become a major part of our values is to, to take in all of these different views and ideas and not be completely focused on on where we think we need to go.

Yeah, that's great to hear. And there seems to be a real art to that, that, you know, it's difficult to navigate, but something that it sounds like you've really been able to, to master. And that's amazing to hear that you've been able to translate that, you know, beyond your family to the organizational culture within gt independence, which is awesome. So could you share a little bit about self direction for, you know, people that might not be as familiar with it, and like how family members could utilize self direction for their loved ones to live a more independent life?

Sure. I think that's a great question. That's something we definitely need to do. More communicating about. So I appreciate the opportunity. You don't know how many times I talk about my work. And people go, Oh, my gosh, I didn't know that was out there. That sounds great. And so self direction. So our company we work with state Medicaid programs, so most of the people that we serve our people who are Medicaid beneficiaries, and Medicaid. Surprisingly few people know this, but Medicaid is really the largest payer for long term services and supports, they're the only public payer for long term services and supports. So as people age or become disabled, or you know, work with their intellectual or developmental disabilities. The Medicaid is the is the entity that provides the services that help you to remain independent and those services range from nursing homes and institutions, which we in this country are are getting away from moving more towards home and community based care. But and, you know, those services also can be services to support you to stay in your home or To interact daily with your community, so help you get your errands done help you participate, any activities that you like to do and all of these things, these services help people to stay part of their community. And they also save the public health system money by by preventing institutionalization, which is, which is the last option that I think we need to look at in terms of house. Take care of people. Yeah, well, that's a long way of saying, within that context, you can choose and most states have self directed programs. In fact, I think all states have self directed programs. Now, you can choose to say, you know, rather than having a traditional homecare agency or third party provider deliver the service, I want to, I want to control that myself. So working with, say, a Support Coordinator in a Medicaid program, you might choose to have a company like gt independence, help you hire your own in home support provider, or personal assistant or vocational services provider, and have them help you with those things that you need to to really live out your idea of what your life should be like. It goes hand in hand with the concept of person centered planning. Because people's strengths, we focus on their hopes and dreams, rather than diagnosing what's wrong with them. So that they can design for themselves, how their lives should be waived. And these are all these things go towards helping people live more fulfilled lives. But in and in doing so, really making public funding for these services. go as far as it can. I'll say one more thing came. Yeah. People, people, regardless of whether they receive health services from Medicaid, will want to do want to live as independently as they can. There is lots of evidence out there that says that people want to retain as much choice and control of their lives as possible. And so everybody, or a very large number of the people in our society will at some point, need long term services and support. It's not just people who are born with a disability, it's people who are going through the aging process. And so, so this idea of self direction, self examination, it really is universal.

Yeah, no, I agree. And it's something that I, as I mentioned, the Leadership Network really values, you know, a lot of our advocacy work is along those lines to really, you know, allow people with disabilities to have more choices and more control of their lives, with their family, you know, support systems. And, you know, while some people might not be familiar with self direction, I hope this is helping them understand this concept, which, you know, when when you boil it down, it's just like how you can live the life you want. And so it really matter them and the money matters, and how you are able to use and control that money really matters. And so it seems like that's really the essence of the work that you do at gt independence, which is so important. So thank you for sharing that. Is there anything, any advice or anything else that you think you want it would want to share with other siblings of people with disabilities from your perspectives? You know, before we conclude today, any other thoughts you have about you know, your sibling perspective that you'd like to share?

Oh, man, I, I've always thought it's important. I've sort of tried to get this across to my son, as he's a sibling, is to be that sibling first. You know, be there be available, you know, be an advocate for sure. But be a sibling first. Great.

Yeah. And I think it's real simple for, for me probably a long time to enjoy. Being a sibling, there is there is much beauty. And there is much, there's much to enjoy there. The perspectives that I've learned. And I do say learn from my older brother, our core perspectives for me that has guided me through my through my career and through my life, and I would not be who I am today. Without them.

Yeah, I think that I know, I can relate to what you're both sharing and I think a lot of people within our sibling Leadership Network and siblings in general, can relate. I know for me, you know, my entire worldview and my career path was very much Influenced by my sibling experience. And so you know, as we know, our sibling relationships are often the longest relationships of our lives, you know, that we have with each other. And it really is a powerful relationship. I want to thank you both john and Dan for sharing more of your sibling story. I also want to say that we're so grateful for your support gt independence support of our upcoming sibling Leadership Network conference, our conference for those of you that don't know it is going to be virtually this year on June 18, and 19th, with post conference sessions on June 22 23rd, and 24th. And this, this is not going to be a typical conference where you just have kind of information shared through zoom, it's going to be really interactive, we're super excited to have spaces where siblings can share their stories with each other can connect can get peer support, which is so important, as well as learn a lot of new information for navigating the system for handling some of the unique things that have come up related to the pandemic. So I hope I want to thank you both again for supporting the conference and invite people who are listening or watching today to feel free to check out more information at sibling Leadership Network that org. So sibling leadership.org, I should say. So, thank you again, john, and, Dan, really appreciate all that you do and sharing your sibling stories and the support you provide to so many families, including siblings of people with disabilities. My pleasure, Katie, and we'll see you at the conference. Thanks a lot, Katie. Thank you Take care.

Please join us for the eighth national sibling Leadership Network conference on June 18 and 19th with post conference sessions on June 22 23rd, and 24th. Find all the details and registration information on sibling leadership.org. That's SIBLINGLEADR sH IP dot o RG. Thank you for listening and we look forward to you joining us on many more episodes to come. find resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.

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