Speaker 1 00:00:04 Phillip Clark is the founder of enable special needs planning, which serves families in all 50 States of the United States. His younger sister, Sarah has down syndrome and is the inspiration for his team's approach to planning for abundant opportunities today. And in the future, Phil co-created the enable by step planning system that allows families to easily create a plan for their loved one. This system includes an online interactive planning portal that guides families, as they create custom plans from the ease of their own home, Phil is frequently invited to speak at conferences and organizations across the country where he shares this belief that everyone has the ability to be impactful. I'm super excited to have him on the podcast today because for someone such as myself, living with a disability and having it be progressive, my life has changed every few years. And I've had to think about what my built environment looks like and thinking about the work and the lifestyle that I have.
Speaker 1 00:00:59 And I personally don't know where that's going to take me. And so I can see the need for having a plan and whether it be funding or having occupational therapy and just having someone come in and create that plan for what my future could look like or look like. And that's something that this company offers and what Phil's going to talk about today. Also, if you haven't downloaded the app, I access life. It is a mobile app that allows users to rate interview places on disability ranking. So things like the bathroom, the interior of the parking and help to break down those barriers and build transparency or the built environment. You can use the referral code carton, C a R D E N. When signing up. Hope you enjoyed today's episode. Let me know what you think. DM me on Instagram freewheeling with carton, F R E w H E L I N, with Cardin, C a R D E N. All right. Welcome back to another episode of freewheeling with carton. I have Philip Clark here. Should I call you Philip or Phil? You can call me Phil. Awesome. Hey Phil. Thanks so much for joining. How are you doing today? How are you? I'm well, I'm well and excited to have you on you ended up in creating a company and a planning program to help loved ones with disabilities. Okay.
Speaker 0 00:02:26 Yeah. So I actually have a sister with down syndrome and she's been such an impact in my life and I was four years old when she was born. And so my life has always been, since I remember it a proud big brother to my sister and she was my sister. It wasn't my sister with downs syndrome. I was always just so protective and wanting to do everything I could to help her through that through life. And just as any older brother would do, but had nothing to do with her having down syndrome. It was just that I was a proud big brother. So life I've always known. It has always been with her in my life.
Speaker 1 00:03:03 And I think it's so special having that mindset that what you were just saying is it's not my sister with down syndrome. It's just my sister. And I feel like though the world doesn't see that they see the disability as the tragedy or the disability as the inspiration or the disability as the charity. So these are like the different models of how people view disabilities. How would you want people to view your sister?
Speaker 0 00:03:37 Yeah, just what you said. She's her own amazing individual and her abilities and her likes and dislikes and how she contributes to the world is what makes her amazing in herself and having down syndrome has nothing to do with that. And being a sibling. When I speak across the country with different groups, I always get questions from my sibling perspective because so many parents want to know what their sibling or what their children are thinking, experiencing, and feeling. And I always tell them, you know, she was my sister just when we started this conversation with no different than our youngest sister is my sister and Sarah was just as annoying. And just as much of a sibling relationship as my youngest sister was at times, but I see her just like my youngest sister as well. So that down syndrome diagnosis has nothing to do with how, how I view her.
Speaker 1 00:04:36 And that's so important. And I think that's the message that we're trying to get across to everyone is to just view Sarah as Sarah, not as Sarah with downs syndrome and she has limitations, but that's just who she is. And as the annoying younger sister as can be, I was very, I was very annoying to my older brother. He can very much tell you they're very annoying to my younger sister who's. So
Speaker 0 00:05:02 I think, I think one thing that's important that along this topic with parents who asked me a lot of the questions I get are really filtered through, they're asking me, how do we make sure that there's no resentment within the siblings? And I think my parents did a great job of saying it's okay to be frustrated stuff. Isn't always going to be fair because Sarah took a lot of attention and a lot of work to help her get to where she is today. And I was a big part of that. My youngest sister was a big part of that and my parents made it okay for us to say, this doesn't seem fair, or this is frustrating. And having that open dialogue, I think helps so much from a sibling relationship in the future.
Speaker 1 00:05:48 And I think also just hearing how you brainstorm in helping her to be successful, raising her and all of that. So how has that, I guess just not really leadership, but just what you've learned, being an older brother, those skillsets that you've learned transform into your career.
Speaker 0 00:06:10 Yeah. A great question. I always tell people that Sarah has taught, well, a question I've gotten before is what's the greatest thing that you have taught your sister and I, when I get that question, I always spin it around and say, Sarah has taught me so much more about life than I could ever teach her. And she has allowed me to see the world in a different view. And she just allowed me to appreciate so much more and celebrating the large and small wins in ways that maybe we wouldn't, if she wasn't in our lives and we shred blessed to be in our lives. And so I think there's so much that she has added to not only our family, but to our community. And that just brings joy to everybody. And she's such a catalyst to joy in our family.
Speaker 1 00:06:55 I love that. And so downtrend down syndrome is a range of, of uh, how physical or, um, limiting the disability can be. Is Sarah verbal nonverbal? What is her range on that scale?
Speaker 0 00:07:12 Yes, she's verbal. Uh, she has a great ability to express her needs and wants and desires. And obviously there's limitations in that. And there's things that we did early in her life to allow her, I believe to have those abilities. You know, when she was born, my parents heard the words that so many families across the country have heard, and it was I'm sorry, your daughter has down syndrome. When my parents heard list after list, after list of things that she would never be able to do. And one of those things, the doctors told my parents was most kids with down syndrome, usually don't learn to read and they should expect to sing. And that limited mindset is what my parents were just thrown into from doctors and professionals. And if we were fast forward to today, Sarah is now working in a second grade classroom where one of her duties in that classroom is tutoring the kids on their reading abilities.
Speaker 0 00:08:11 And so it's just the same thing. The doctor said she would never be able to do herself. She is now teaching others and there was so much work and so much attention and effort that our whole family poured into her to allow her to use those abilities. That, that if we would have bought into these limitations, maybe she would've never been able to read, but we believed in her so much and believed that she had purpose to her life and she could add tremendous value to others. And that's really where that push to allow her abilities to thrive came from.
Speaker 1 00:08:41 And what I'm hearing you saying, and this is a common theme with doctors is they will generally say, I'm sorry, and this is the recipe of what the rest of your life will look like. And I was told the same thing. I have a progressive muscular disease, and I was told you're going to be in a wheelchair. And this is the worst thing that can happen to you. You probably won't be able to breathe at a certain age on your own, and this is a tragedy. And instead the conversation I don't know about you, but I would love to hear is these are the possibilities that can happen. And we want to make sure that you are mentally prepared, but also that we can set you up with resources and services to thrive so that you don't face this alone. And again, they aren't the exact all end all in what the disability is going to look like. And I think this is also true, very common with spinal cord injuries, right? They say, you'll never be able to walk again and you see time and time again, people going against what the doctors told them. And yeah, totally.
Speaker 0 00:10:01 Yeah. It's so much of that is mindset, right? And you mentioned that earlier mindset, I believe is so powerful. What we think about what energy we focus on and our outlook dictates so much of our daily actions, which then affects our future and how we think about things I believe is what the outcome is going to be is. So if we focus on limitations, if we focus on what others are saying, that we can't accomplish, that's exactly what we're going to get. But if we can move into more of an abundance mindset, I believe, and focus on the abundance that life has to offer, we have so much potential and opportunity in our lives and our loved ones lives
Speaker 1 00:10:44 Very much so. And so you obviously have taken that abundance and run with it, and all of your personal experience with Sarah and being a great older brother, you then went on to make a career out of it. And so talk me through that.
Speaker 0 00:11:03 So from a young age, just being involved in everything that Sarah was part of, as I mentioned, I was a proud older, big brother, and I wanted to be able to provide opportunities however I could for her. So I was always involved as being a special Olympics coach for her and being involved in best buddies. And, and just throughout my life, Sarah was just a common theme of, I just wanted to pour into her and make sure that she had every opportunity for success as possible, along with my parents, along with my other sister. But that was something that was always a common theme for me. And I knew whatever I did with my life. I wanted to serve families that were much like my own and helping them. I don't think I knew it at the time, but shift that mindset from a limited mindset to an abundance mindset.
Speaker 0 00:11:48 And so when I graduated from college, I realized I wanted to help plan for the future. And early in my career, as I joined different firms, who said they did quote unquote special needs planning, I was shocked to find out what special needs planning actually meant, because I found out very quickly that the conversations from that traditional approach, we're only focused on helping my parents answer the question of what happens when you die. And that was it. That was the only conversation that was being had in regards to special needs planning. And I agree that that conversation has to be had in every single family, right. Because that's the reality of life. Don't know what tomorrow. Yeah. Yeah. But I looked at that from a proud big brother standpoint. And I said, no, I believe that planning should be focused on my sister. Planning should be focused on and allowing her to live a fulfilling and happy and purposeful life every single day from now into the, her, her future.
Speaker 0 00:12:53 Not just what happens when my parents are no longer here. And so I, for years, I tried to help firms understand what families much like my own needed from a conversation and being a person centered planning approach. And each of them kept saying, you can't talk about that. This is not what special needs planning is. Here's what you need to do. And I'm not one to take no for an answer, I guess you could say that I'm stubborn. And so that's when I realized that I, if I was going to change the conversations that families were having, I needed to do it on my own. And that's five years ago when I started enabled is when we started changing the conversations that were families were happening across the country.
Speaker 1 00:13:35 And so walk me through, I'm a new client. I have, let's say I have a child with a special, with special needs. Talk to me through that interaction. And what services do you provide and what plan would you support?
Speaker 0 00:13:51 So the very first thing, and this is my favorite step of our planning process. And I believe it's the most important stuff is understanding what is the vision of a great life for your child? What are the natural abilities that you see in them that you want to continually develop? How do we want to show, or how do we want to plan so that they are impacting the world and in turn feeling fulfilled and purposeful with our own life. That is so important. And the biggest piece and why I feel like this is the most important step of the conversation is shifting that mindset. Because so many families across the country, I talked to, when I tell them, when I asked them to tell me about their child, they start telling me about what the doctors have told them or what professionals or what the media. And you can tell that they are, even though they have high hopes and dreams for their child, they still are stuck in that limited mindset. And if I can help them move out of that and move into a mindset of abundance for what the future can be, the plan just becomes so much better and the conversations become so much better.
Speaker 1 00:14:57 You're basically like the life coach. I see a life coach as well. And that's basically what they start out with is tell me what you envision for your future and how do you want to feel fulfilled? Yeah. What do you want to manifest? And it sounds like that's what you're helping to create that realization.
Speaker 0 00:15:18 Yeah. And as you would agree with me, that mindset piece is so important. Right. And if you're not thinking that if you're not focusing on that, there's no way to manifest that reality. And so getting them in that mindset and helping them little by little, and sometimes families are easy to move to there. Sometimes it takes time, which is great. I just want to be a resource of support to help them move into that abundance mindset.
Speaker 1 00:15:45 And so, okay. So I've crossed over into that abundance mindset. Maybe it took six months, maybe it took a few years. What is it then that you suggest for planning?
Speaker 0 00:15:57 Yes. So through that vision planning process, and no matter how long it takes to get there, we have a idea of what a great life for their child looks like. What does a great life look like today? What does it look like five years from now? What are we planning for? What does it look like 10 years, 20 years and beyond. And obviously that vision plan is always going to change for you and I were to sit and talk two years from now, you know, the vision of our lives are gonna look very different than what we thought it was going to be. And so this vision plan is always an evolving conversation and plan. It's never stagnant, but once we have an idea of why we're planning in the first place, what does success look like? What does impact and fulfillment and purpose look like? That's when we're able to put those pieces together and we're able to make sure the team is in place, families have got to have a team to make this dream become possible. They can't do it alone. And so one of the services, what are the organizations who are the individuals in their community, but also across the country that they need surrounding them to make sure that that becomes reality.
Speaker 1 00:17:01 And so if we were to take it back to Sarah, what was it that you envisioned with her help? And what did you create? Was it to make sure that she has a job and that she has income? Is it social support? Is it physical therapy, OT? I mean, are those the kinds of services and organizations that you bring in as well?
Speaker 0 00:17:25 Yeah. Early on, absolutely. That sure is because those are so important. Those resources are important to be able to build those foundational abilities so that we can continue building upon that these questions are always tough for families because the unknown in the future always stumps them. You know, what does 10 years look like down the road? How do you answer that question? Right? And so those foundational resources are so important. And I'll give you an example of what I mean by that. So when my sister was going through school, she absolutely hated school. She dreaded it. She would hide from her teachers whenever she got a chance she would sneak out of her classrooms. And I always joke with families when I speak in public and this topic comes up, you know, I don't know how many times I got pulled out of class because the teachers had lost Sarah.
Speaker 0 00:18:15 Again, she was hiding somewhere in the school. And right now I look back at that and I think that's pretty hilarious. She was smart. She didn't want to be, she figured out a way to get out of the classroom, but I guarantee you, my parents, when that was going on, didn't think that was funny. And I wonder how many times they looked back and said, we're the doctors, right? Will she never be able to do XYZ? Whatever that is. And so I share that because if my parents were to have been told that she would be now working in a school, they'd have said, you're crazy. There's no way that Sarah is going to find fulfillment and purpose in a school setting. But over time through her plan, we worked on her reading abilities. We worked on her physical and occupational therapy, and we worked on social interaction skills over time. And it just so happened to be that she loved kids. And she just developed a strong, nurturing relationship with kids. And she just has a connection with them. And we found opportunities along the way to give her more of those interactions. And it just so happened that she found, she found a role in a school system that gives her that fulfillment every day. And so those foundational plans are so important and financial resources are so important because that's going to provide opportunities that might be unknown at the time.
Speaker 1 00:19:37 I wonder also because she was a flight risk, essentially fleeing the classroom if she didn't like it because no one actually took the time to teach her in a way that she actually liked and in a way that she could actually receive that information and digest it and then regurgitate it, you know, back into the form of a test or something of that nature. So is that something as well that you look as a variable when you are planning, let's say you do have a child who is a flight risk, you know, analyzing, well, why are they running away? Sure,
Speaker 0 00:20:16 Sure. Yeah. I think that gets into a whole nother conversation that we could probably spend hours on is our education system right now and how we're teaching our kids and not just kids with special needs and disabilities, but everybody know now one person learns the exact same way. And so I see a lot of families looking for alternative ways to educate their children because they're frustrated that the education system is failing their child. And a lot of reasons we could get into a lot. They're not blaming the schools because I truly believe that most truly want to allow our loved ones to succeed, but there's just not the resources. And so it really falls onto the parents and the team surrounding the parents to figure out how we're going to allow our loved ones to learn to their best of ability and to find those abilities to impact the world.
Speaker 1 00:21:12 Yeah, I do think, I mean, in general, I mean last week I was talking to an educator who works in education curriculum. She creates curriculum for children who are deaf and hard of hearing, and that's a whole nother ball game, right. Of how do we set up our teachers who are hearing up for success to help students who are deaf or hard of hearing. And it is true. Everyone learns differently. So you don't just look at school or whatever. You're looking also at the home, are you
Speaker 0 00:21:47 Looking at the home yet? We become almost an extended family member of the families that we serve because we strive to first seek to understand what's going on. What are the challenges, where are the stumbling blocks? What are those hopes and dreams that we see? And we've got to really be understanding of what's going on so that we can help find solutions to allow this great life to happen. And that, that vision plan is the start of that. Like I said, then we've got to make sure that we're assembling the team, but then we've got to make sure that it actually works. We got to make sure from a financial planning standpoint that we can plan for abundance for the entire family, including the individual that we're planning for. And we've got to make sure from a legal planning standpoint that the entire family is protected. That no matter what happens, this individual I use my sister, for example, always is that my sister can always live this life. That's fulfilling and purposeful to her.
Speaker 1 00:22:41 So I guess, can you explain why we would need legal protection for that?
Speaker 0 00:22:46 Yeah. So the, a couple of different reasons, one there's, what's called a special needs trust. So many of our loved ones are receiving government benefits. And part of the government benefits stipulation is that Sarah, my sister can only receive, or can only have $2,000 in her name, anything above that, that is what her government benefits go away. And these benefits are so important for her and her freedom and a way for her to feel personal impactful, because she has a job coach. She has transportation to get to and from her job. And there's so many things that allow her to feel purposeful that the benefits provide. However, we need to make sure that we have and the ability for her to have assets above and beyond that $2,000 and a special needs trust is one vehicle that allows us to plan for that. And that's really the biggest piece of a legal planning process that we need to think through.
Speaker 1 00:23:49 Got it. So you have this, this trust so that she has the financial resources and benefits to assist her. One thing that I've really gotten into is city planning and just as a hobby and learning about that and affordable housing and ensuring that there is housing for individuals with special needs, intellectual developmental disabilities, and having these services in place. Do you see any like neighborhoods or I guess, homes that have the services in place already, such as transportation and job assistance, coaching and stuff in that housing community? Sure.
Speaker 0 00:24:40 Yeah, there's, that's an ongoing project that I find so many families and individuals are so passionate about finding that solution for a longterm housing situation and what that looks like and how to make it sustainable and how to make it so that it's not a hundred percent based on government dollars, but how to make sure it's a thriving community that supports itself. And there's a few organizations and communities in our area, we're from Indianapolis, Indiana, but I connected with families and organizations across the country, but there's a few here in Indianapolis that I see that they have a model of that I really think can be replicated and thriving because they have jobs in their communities and they have, they have ways that attract outside members of community come in and support that community through coffee shops and the shops and different restaurants and that sort of thing that will allow that community to thrive on its own. What have you gotten into and what do you see being a possible solution for that?
Speaker 1 00:25:45 Well, I've really, I mean, just came across my mind just a few months ago, so still very new to learning about it. But in terms of just finding accessible housing, at least for wheelchairs, such as myself, I used a wheelchair and just finding housing, that's actually accessible is very difficult in Atlanta. And you have to go to some of the newer units. You can't leverage the older units because they're just not equipped. Even though they may say they're equal opportunity housing, you don't have the ability for a roll in shower. You have a tub and you don't have equity. You don't have enough space around the toilet to allow for a lateral transfer. So, I mean, just in general, the built environment is still very limiting, but for other services, it would be nice. I don't have a car. So I just rely on mass transportation.
Speaker 1 00:26:42 Transportation would be huge and not relying on our city's train and bus system. So they have a paratransit solution, but it's only if you can't use the regular trains and buses, which I can. So I don't qualify for paratransit. So having access to, you know, kind of like this own private, I guess, transportation in a community that also has other individuals that would benefit from it would be helpful. Sure. And I'm sure there would be other benefits to having other services available, like, like this, for example, the planning and life planning and ensuring that they have a job coach and are setting up for success. Me personally, I'm very independent, I'm verbal, I'm of an active mindset. So I personally have that ability to go out and create what I want in the world and, you know, acquire that. Um, but I know there's a number of individuals that can and need that extra support. So,
Speaker 0 00:27:53 And I think that's where the planning process of helping families adopt that abundant mindset comes into play. It's so important because while we want to hope that there are our government does the right thing and plans for opportunities, I share with families that we can't control those outcomes, but we can control the actions that we take as a team to create opportunities for the future. And so I think a lot of that really falls into the, the actions and the hands of families in creating those opportunities. I do have a question for you. I'm just curious, where does your abundant mindset come from? Cause I love the way you think in the Europe abundance in life.
Speaker 1 00:28:35 I think the abundance mindset for me came from w so I was diagnosed at nine years old. And so at a very young age, I showed symptoms at four years old, not being able to blow out birthday candles very well. My eyes went in fully closed that night, and I could never do a sit up. I could do a pull up, I play competitive fours, everything else under the sun, but I couldn't do a setup. And it was very bizarre. And you know, all the doctors told my mom that she was crazy and she was a helicopter mom. Um, eventually found a specialist that says, I know exactly what you have and I'm going to get you tested. And it came back confirmed. And my mom has been such an incredible resource and she has been such an amazing role model because she was the one who stepped up and said carton.
Speaker 1 00:29:25 We're going to figure this out together. And at the time my dad was very much in denial. And so he just isolated himself. But my mom said, you know, it can't just leave my child. I think that's just a mom's instinct typically. I mean, she just, I very distinctly remember her saying I was on her bed and I was crying when I was about 10 or 11 years old, because we recently had just received that, you know, the worst thing that was going to happen to me was that I was going to use a wheelchair and I never wanted to use a wheelchair because I loved playing sports. And she told me and said, carton, you have two choices in life. You can either cry about it and be really upset, or you can choose your own path and we will work together to create a better world for you. And so having her as that rock it starting out so early, when I was at a young age, I was still an adolescent, totally transformed the way that I thought. And I very much am her reflection in the way that she thinks and that abundant mindset. She's very much a go getter, very much an advocate, always using her voice to stand up for change. And so, yeah, that's, those are the traits that I acquired from my mom. It's amazing.
Speaker 0 00:30:50 And I mean the different trajectory that you were on after that moment, right. It's night and day different. That's amazing. I love that.
Speaker 1 00:30:59 Totally transformed. And not to say that the last 15 years haven't been difficult, right? I mean every year is a different year. You know, I went from playing really competitive sports to love running and then slowly not being able to run to not running at all. And then walking became more difficult, no longer walking upstairs, walking then stopped. I started tripping and falling everywhere, fractured my skull. Like it was a whole escapade, um, started using a scooter. I denied that for about eight months. It sat in my house. I was like, I don't want it. Yeah. And I just remember, and I think a lot of times people with disabilities don't like accepting help because they feel that they're so independent and they need that control. But I remember the first time that I wrote in the scooter and I wrote down the neighborhood, it was just this feeling of freedom of just feeling like everything in my head is all ego. And to just let that control go. And then I was like, no, turning back here. And then I eventually the progression I transitioned to using a power wheelchair full time. So I roll all over the world and very much an advocate in my community.
Speaker 0 00:32:20 I love it. I love it. And just through this podcast that you do and just everything else that you do, you're impacting so many others. That's amazing.
Speaker 1 00:32:29 Yeah. Same to you. One question, the thought that came up when you said you almost become like a second family member, has anyone invited you over for Thanksgiving giving? No, but
Speaker 0 00:32:40 I'd be open to that. I love Thanksgiving so I could spread my Thanksgiving dinners out over a month and we can make that happen. So, um, I do get invited over to family's homes for dinner quite a bit, and we travel across the country, speaking at different events. And so when it just so happens, I'm in the city of families that we work with, I would definitely always get together and is great. As zoom is in connecting us from different parts of the country in the world. There's something about a personal face to face meeting is just so amazing. So, but yeah, we do, we do develop a longterm lifelong relationship with our families. So that's the best part of my job.
Speaker 1 00:33:19 What I was going to say is the relationship. What is the average relationship length that you have with your clients?
Speaker 0 00:33:26 Honestly, it's multigenerational because I mean, there's families that we have gone through some pretty, very difficult life changing situations and events, and my family is there to help the next generation continue the plan. And so while we might be starting working with the parents in planning for their child, unfortunately, because I've been in this industry and this business long enough, I have seen when the siblings, the other siblings are now loving and caring and supporting for their brother or sister. And so it becomes a we're here to support the entire family, but mostly the parents transitioning to now our role is to guiding the siblings to make sure that that individual's plan continues to happen no matter what.
Speaker 1 00:34:15 And the other question that I had was, do you only focus on disabilities and special needs or do you help with any families?
Speaker 0 00:34:23 No. We only help families who have a child with a disability or special needs. That's the passion that I have that I bring into this. And that's why we, I just saw such a void in such a need in these bigger picture conversations that it's passionate because of my sister. And it's where I feel like we have the most impact. Yeah. You have that niche. Yeah.
Speaker 1 00:34:46 Just really specific. Yeah. Well, how do people get in touch with you and how do they enroll in your planning services?
Speaker 0 00:34:55 So our social media is at enable S N P as in special needs planning. And that's Facebook, Instagram, Twitter, even tick tock. There's not many interviews on there, but there's a few, but, um, that's how they can get in touch with us. With social media. Our website is www.enablesnpasinspecialneedsplanning.com. And that's where they can find more information about our process of what we, how we guide families and how we inspire hope into families and their future.
Speaker 1 00:35:31 Wonderful. Thank you, Phil so much. And I'll include that all in the show notes. You're welcome. All right, well, take care.
Speaker 2 00:35:38 Have a great day. Thanks for having me. Thanks. Thank you friends for listening, please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.