Let's be honest, that momentous road trip where everyone sang songs, counted license plates from multiple states, and no one asked, 'Are we there yet' -- was still stressful. Factor in a child or adult with intellectual and developmental disabilities and that stress can be amplified. On this episode, you'll hear from two travel experts, who are also advocates for travel inclusivity. Ohio and every other state need more accessible restrooms with adult changing tables. Kim Boulter from the Ohio Changing Spaces campaign shares how they are helping make that happen and where you can find an interactive map. Plus, Boundless Community Integration Specialist, Hope Johnson, provides her best food, beverage and mental health tips for loading up the car and heading out. She has learned lots of lessons taking adults with disabilities out in the community for years!
Let's be honest, that momentous road trip where everyone sang songs, counted license plates from multiple states, and no one asked, 'Are we there yet' -- was still stressful. Factor in a child or adult with intellectual and developmental disabilities and that stress can be amplified. On this episode, you'll hear from two travel experts, who are also advocates for travel inclusivity. Ohio and every other state need more accessible restrooms with adult changing tables. Kim Boulter from the Ohio Changing Spaces campaign shares how they are helping make that happen and where you can find an interactive map. Plus, Boundless Community Integration Specialist, Hope Johnson, provides her best food, beverage and mental health tips for loading up the car and heading out. She has learned lots of lessons taking adults with disabilities out in the community for years!
Well, school is out and the sun and summer are here. But now wait a minute. That also means there is more time in the day to fill. That can be a challenge. Travel can also be a challenge for parents and caregivers of people with autism and with intellectual and developmental disabilities. Hey folks, no worries because this podcast is all about creating a toolkit for summer trips. Whether you're driving downtown to COSI, or driving 18,040 miles exactly from Columbus to the Grand Canyon, we've got you covered. Welcome everyone to this episode. Our guests today. Hope Johnson is a Community Integration Specialist for the WoW program here at Boundless and Kim Boulter is a parent and she leads the Ohio Chapter of the National Changing Spaces campaign. I'm your host, Scott Light. Kim, Hope, welcome to you both. Before we get into the specifics of our travel tips, I want to ask you both a personal question about travel. Do you each have a Thank you. favorite road trip from your childhood? Or your adulthood? That we can start off with. Hope?
Hope Johnson:Sure. I'm the oldest of five children. And I think my favorite trip was when we went to Niagara Falls. We went to the New York side, but then we ventured over this was before passports were needed. We've ventured over to the Canada side. We did drive from Ohio, to New York. And we were all of the age where we could entertain ourselves. So that was a good time for us. We went through many trips while we were growing up. But that was my favorite one because we all entertained ourselves. We didn't pick on each other. We just did our own thing. And then at the end, we all got together and sat by the falls. And my mom brought her guitar. And we all just sat around and just like it was just a peaceful ending to our trip. And that was very memorable to me.
Scott Light:That is really, really cool. Did you get wet by the way? Did you wear the poncho and get wet?
Hope Johnson:Absolutely, did all of the water activities.
Scott Light:Okay. Kim what about a favorite road trip.
Kim Boulter:The favorite road trip from my childhood, we would often go to drive to Lake Erie to go to Put in Bay. And it was about every other year we would go to Put in Bay and then the off years we would change it up and go somewhere completely new and different. So we had a family friend who had a boat, of course that's the best friend to have.
Scott Light:That's right. That's right.
Kim Boulter:And we would go to Put in Bay my parents would rent a little ramshackle cabin. And we would stay in the cabins with other families and and cruise around on the boat.
Scott Light:Those are great memories. That's great. Well, we want to remind our listeners our podcast, as always is brought to you by Boundless. Boundless is a nonprofit that provides residential support, autism services, primary health care, day programs, counseling, all kinds of things to children and adults. Our mission is to build a world that realizes the boundless potential of all people. And you know what, speaking of people, we have a very special person here because Hope Johnson folks is the DSP of the Year for the state of Ohio. That's kind of breaking news here. Hope I just found this out here. Uh, congratulations. What does that feel like? I mean, that's that's a tremendous honor. It's very humbling. That is the word everyone's asked, you know, what's this feel like? What's it feel like? It's a humbling. I don't do this for the recognition. I don't do this for the honor. You know, the awards. So to be picked up among, I think it was over 300 people was a pretty big deal for me. And it was amazing. I we went to Chicago. It was humbling. I was one of the first, I think I was the fourth person to accept my award. So I got to sit and listen to everybody else's stories. And everyone's you know what they do and how much they affect everyone's lives. And I cried. I cried so much. And everyone kept saying, Wow, you're, you're crying. I was like, yes, because this is so it's so humbling. It was I just took a step back. And it also gave me the fire again to keep going. So great. Yeah. Congratulations again. Thank you. Well, let's get to our subject du jour here. So Kim, let's begin with you. Tell us about tell us more about your son Aiden. And we also understand he's one of the reasons you became a leader in the changing spaces campaign which advocates for accessible restrooms with universal changing tables.
Kim Boulter:Yes, my son Aiden is 10 years old now. And when he was being born, he suffered a birth injury. So he has cerebral palsy and multiple disabilities. And when he was a baby, I we weren't sure if he would, you know, live because his injuries were severe. And he he lived and you know, we kind of got through those first three years, few years of adjustment, kind of feeling like our lives were took a 90 degree turn and weren't sure what we were doing and we got on our on our feet and got our footing. And then we just, you know, because he lived through such a traumatic event, it made us realize that we couldn't take life for granted. And we want him to have the best life he can have, and live his life to the fullest. And we want as a family to live our lives to the fullest as well. So when we started to try to do more things in our community, and, you know, go beyond just living but thriving and enjoying life, we realized how many barriers there were in the way for people that have a disability or, you know, utilize a mobility device like our son does. There are just a lot of barriers still in, in, in our communities, and many people that don't experience disability in their lives, or are, who have never cared for someone who needs care, just have no idea how many barriers there are, because they don't face them in their lives. And everyone kind of usually says, but what about the ADA? Isn't that, you know, protecting people from having these barriers in the lives and the fact is, there are still many barriers, despite the ADA we need to go beyond it, what it requires and look forward to how can we make our communities more accessible. So one of the major barriers that precludes our whole family and from going places is not having access to a safe and dignified and private place to change our son because he utilizes protective undergarments. And he, you know, is in his wheelchair, and we can't always get him to a bathroom. And many people can't use a standard bathroom facility. And because he's 10. now, you know, he cannot lay on a baby changing table, he is too long for it, he's over the weight limit. And there's just nowhere to change people that need that accommodation, people end up changing in the grass in the park or on the floor of the restroom. It's just unsafe for caregivers to be lifting their loved one or their person, they're caring for down to the floor and back up into their wheelchair. So many things could go wrong. And so many people could be injured. Though, I was lucky enough to connect through Facebook with another mom. Her name is Jennifer Corcoran, she's in the Dayton area. And she has a 22 year old son named Matthew, who is also a person who requires total care and who needs a place to be changed as well. And Jennifer had already laid a lot of groundwork in Ohio for the momentum that we're having now. She had contact her contacted her legislator and had legislation introduced into our legislature in Ohio a few times, unfortunately, there were barriers in the way COVID happened that didn't pass. But she created a lot of awareness of this issue and this boundary. And she also sat on the committee that wrote the New International Building Code section on the adult changing stations. So she was already laying all that groundwork. And then when we met and we started to get Changing Spaces Ohio off the ground, then we started getting some real traction in Ohio. So
Scott Light:I was gonna say speaking of your website, you've got some really good statistics and those that's a good baseline here to mention out of the gate. 16 million Americans live with a cognitive disability, more than 8 million people in America need help with daily self care and more than 20 million have limited mobility. Hope these individuals can be excluded from society due to that lack of accessible restrooms with those height adjustable and adult changing tables can they that you were just talking about. So hope with your work here at Boundless? It does involve taking adults with disabilities into the community every single day, kind of helpless to round out that picture as well. What are the needs out there? When when you're out with folks here from Boundless?
Hope Johnson:I agree absolutely. You know, we have individuals who would love to go on a day program out during the day and be out for multiple times or hours. But depending on the situation, they might be in a Depend or whatever it may be or just you know, spilled water on their shorts, whatever it is, and they need changed. And so that either cuts it short because they have to go home, or we find a place a private location, which thankfully family restrooms are big enough. Now that we have you know, if we have somebody in a wheelchair, we can do a transfer, but to be able to have the changing tables and even handicap bathrooms. It really is life changing for us because then we can give them the value and the quality of life to be able to be out longer than two hours or 30 minutes. If we're going on a two hour or 30 minute trip then they're out for 30 minutes before they have to come back home to get changed, or whatever it may be.
Scott Light:We're going to talk more about the changing spaces campaign as we go here. Let me broaden out a little bit with this to both of you, when we talk about travel in general, and I asked you both about those memorable road trips at the beginning of our conversation, it is interesting, you know, when we look back and think about those road trips, they are momentous, and we do think about the good times. But then, you know, in real time, let's also be honest, travel is stressful, especially if you've got that car packed. And you know, you've got kids that are that are hungry, and they need to go to the bathroom, whatever the situation may be, and you've got hundreds of miles still to go to get to that destination. What are some of the best tips that you could share with our listeners, when it comes to travel?
Kim Boulter:Sure, my best travel tips will be to prepare for what you can prepare for. And try to make a lists of what you need to take extra of things. And just remember that certain things are beyond your control. And when those things happen, you just have to try to stay positive, and go with the flow and react in that moment and do what you need to do to kind of get it back on track. It makes me think of a road trip our family took this past winter, we went to New York to Pekin peak resort, we wanted to take our younger son who's eight skiing for the first time, we bought our DSP for our older son with us. And 10 minutes into the trip, we realized my son's G tube formula had leaked all over the van floor. And we had to pull over, we were not even 10 minutes into the five hour road trip. Pull over. Luckily, I had a roll of paper towels. So we mopped up the floor of the van, we continued on. And about an hour later, we got a flat tire that it took us maybe another three or four hours to get that tire changed. And eventually we got to be complete New York, but I had prepared all the medications, all the diapers, all the you know, extra clothes, everything we needed. And some things are just outside of your control. So you just have to try to stay positive and try to make fun of it in the moment and your family will be okay, if you can bounce back and just still have a good time.
Hope Johnson:I was going to bounce off of that as well. Over prepare, but under expect that is something that I live off of in my life, but also at work. Also, when I'm out with these, you know, we're a four to one ratio. So I have four clients in my van to with just me. So I can have all the snacks and I have all the drinks and anything to keep them entertained, you know, but I have to also remember that something could go wrong, just like the flat tire, you know, anything could happen in that moment. And also, remember that they bounce off of your, your energy and your positivity. So if you're like, Oh no, they are going to start stressing out and they are going to feel that. So one thing is just, you know, stay positive, stay positive. Otherwise, it could really result in multiple meltdowns instead of just you know, one little one, it could be four big ones.
Scott Light:Let me flip that question. So Hope to you now. Tell us something that you tried, maybe that didn't work, maybe a lesson learned.
Hope Johnson:I'm gonna bounce right back and say, I can say from personal experience, that when I overstressed in a situation, that's when things went bad. We had went to the Velvet ice cream place in Utica. And I had no phone service. I'm not from here. I'm from a really small town. So when we're going outside of my regular ABCD spots, I use my GPS. Well, when your GPS doesn't work in the middle of nowhere, you start distress. So I have four clients in the back of my van, and I'm going I don't know where to go. My GPS is glitching I don't know what I'm doing. Oh, no, oh, no, no. And I was panicking. And next thing I know, one of our clients is also panicking. And he is saying, hey, hey, hey, we don't know where we're at for lost, we're lost. So now I have myself panicking and he is panicking. He has his friend panicking. And it was I actually had to stop the van and pull over and I was I said Okay, guys, we're just going to wait till the GPS catches up with us and then and then we'll be okay. Well, thankfully, one of our other vans caught up with us before my GPS did. So I said, Okay, we're good. We're just gonna follow them. We're fine. Yeah, it's fine. And they were fine after that. And that's when I realized that if I stress too much, anybody in my situation in my van, in my car will also was stressed down to my dogs. Yeah, they will also stress off of that.
Scott Light:Yeah, that energy transfers, right? It does it does. Kim, what about a lesson learned?
Kim Boulter:So have another travel scenario that went wrong with our family. We have many that went right. It seems like I'm only talking about the ones that went wrong. But last year I took my my kiddos to Florida for spring break, I always get a case of the winter blues and I need to get out of this cloudy Ohio that we live in. So about a month before spring break, I thought we're getting out of here. So I booked kind of last minute plane tickets, we went to Florida. On our way back, we had a three hour weather delay, we missed our second plane, we were stranded in airports. Eventually, we got to Cincinnati airport. And my son needed to be changed, like ASAP. You'd been sitting on planes all day. And I asked some of the employees at the airport, do you happen to have an adult size changing table where I could change him? And they looked at me like I had spoken another language? And like they didn't know what I just said? And they said no, we don't we don't have anything like that and kind of showed me system different places showed me to the mother's nursing pod, which this tiny little bench and I said that's not going to work showed me to the family bathroom with the baby changing table. I said that's not going to work. So I ended up changing him in the women's room on the countertop and kind of trying to shield him from any girls or women walking past. And my lesson learned from that was that I need to tell places that they need. If they have accommodations, they need to have signage, they need their employees need to be aware. And from that experience, and from other experiences that my co leader Jennifer's had as well and many other people, we decided to make the universal changing table map, which is a free resource to any provider, any family, any person that needs to locate an adult size changing table. Because a few weeks later, after being in Cincinnati airport, I noticed online someone had posted a beautiful picture of a huge height adjustable adult size changing table in Cincinnati airport. Wow. Yes, just the staff didn't know was there and there weren't any signs. So from that experience, I thought you know what, this has to be fixed. We made the universal changing table map, it's anybody can see it www dot universal changing table map.com. And it's an interactive map, you can see where any of the changing tables are near you in your area. And if there aren't any, that's a really good way to show that to let's say your city council or leaders in your area and say, look, we don't have any accommodations in our area. Let's let's do something about it.
Scott Light:Are there more being added to the map?
Kim Boulter:All the time.
Scott Light:Really? Yeah, awesome. Every week? Every month? Every...
Kim Boulter:I got two submissions yesterday, oh, he's all over the country. I'm calling to verify changing table locations, ask for photos. Make sure we have really accurate data so that people when they go through the front doors, they can know exactly how to get to it. They don't need to stop and ask someone who may or may not know where it is, or they may not want to ask, they might not want to say I need this accommodation, they may feel like that's private information. They just want to be able to locate it. So we have all the information there.
Scott Light:That's great.
Hope Johnson:That's wonderful.
Scott Light:It is let's talk about road trips in another way. How do you set expectations with children or adults with intellectual and developmental disabilities again, whether it's going to COSI for a couple of hours, or a three day long weekend.
Hope Johnson:I would say tell I tell my, my clients everything that we're doing. So we're gonna go here, we're gonna go to the gas station, we're gonna go to COSI, we're gonna sit at COSI for 15 minutes, and then we're gonna go inside, and this is what we're gonna do. They all love seem to love, I can't say all, most of them seem to love structure. They love knowing what is happening, you know, they love to be treated as a typical, they want to know what we're doing, you know, just like we're sitting here talking to each other, they want the same thing. They want to know that structure in in a lot of them. I say this is the plan. It might not work out like this. But this is the plan. So then if something doesn't work out, they go but but that's okay, because Ms. Hope said it wasn't going to all work out like this.
Kim Boulter:I'm a former educator and that is something that was drilled into all of all teachers is that kids, people in general like like that structure, they'd like to know where the boundaries are, and what to expect. Preparing for what you can prepare for, I tend to over prepare, I'll have extra of everything all my mind will go to every possible wayward scenario that we could find ourselves in and I'll try to have a plan in my mind, and then just go for it. And in my experience with my kids, I've I am starting to realize I think should probably scale back a little bit. I get a little bit too ambitious, sometimes with our travel plans. And I'm going to I'm scaling back to kind of closer places, exploring Ohio, exploring our neighboring states to kind of something, attack something that's really that's manageable for you, instead of trying to do and around the world cruise. Just do it around the Ohio roadtrip,
Scott Light:There you go. Do you keep a "to go" bag?
Hope Johnson:Absolutely. Sunscreen, it doesn't matter what time of the year, we always have sunscreen. We also always have bug spray. I've, I've realized that we live in Ohio. So it doesn't matter what time of the year it is or where we are. bug spray. Also snacks. Now obviously that depends on the individual and how their diet and what not. But snacks and water and believe it or not flavor packets, those sugar free little you know, those are game changer because sometimes water gets boring tasting. And you know, just add a little cherry in there and they're happy. Also, nowadays, you know, you see popits and you see like the spinning things, things that keep their hands busy. That is such a big thing we have in my van alone, we have five popits on my badge, I carry a puppet. They're everywhere for us. Because if they're getting you know, antsy, they just want to do something. And sometimes it's not just eating.
Scott Light:Yeah, expend a little energy.
Hope Johnson:Yeah, yeah, absolutely!
Kim Boulter:Something we always take, and I always have in my van is a picnic blanket. So that if we need if we're on an unexpected, unexpected stop, my son gets tired of sitting in his wheelchair, you know, any of us it'd be tired of sitting in the same position for hours. So I tried to get him out and let him lay down on the picnic leg, it's just a stretch movement muscles get a little different position, get the blood flowing before we get going again.
Scott Light:Nice. Nice. Let's come back to the changing spaces campaign for a little bit. So Kim on your website, there's some real success stories and some real momentum. Governor DeWine has included funding for adulting changing tables in his budget, you have nearly 30 locations across Ohio, that number is going up all the time, I'm sure. And again, those range from churches to YMCA, to Children's Hospital to COSI we've talked about COSI a couple of times to the Columbus Zoo, tell our listeners how they can get involved on the advocacy side to talk about this even more.
Kim Boulter:Sure, so something I have learned is that if you want something to change, you have to use your voice. And you have to keep at it and not give up. If you hear a no or we'll think about that. That just is your opportunity to follow up in another month, and then again in another month and to make people understand this barrier is not acceptable. And the only thing that we will accept is total inclusion, because every person deserves to be included. And our society is better when everyone is included and everyone's voice can be heard and everyone's presence can be felt and everyone's gifts can be shared. So without having inclusive facilities, we are actually all missing out on what individuals with developmental disabilities and other disabilities can offer and can bring in enrich any situation. So find your voice. Know that if you're advocating for inclusion, it's not frivolous, it's not asking too much. It's, it's important. And you can whether you're advocating for like we do for an adult size changing table or anything else, just come prepared with what you want to ask for. And ask for try to find that person at that facility or at that place that can actually do something about it, you know, if you approach the person at the front desk, they may not be the person with any power to change the situation. But if you asked to meet with or get the contact information for the building manager, or the city manager, for example, kind of need to find that person who can really actually do something about it and then set a meeting and try to follow up later. For changing table adult size changing tables and for Hoyer lifts, which we also advocate for we have a lot of downloadable fliers on our website that anybody can access and download print. take with them, I keep a stack of them in my car. So if we're somewhere new, like this summer, we hope to go to the Columbus Art Museum. And we hope to you know, take some fliers and we'll go there. We don't think that there's any accommodations there. Because most of the time there aren't. This is kind of a new newer movement. And we'll go and we'll, we'll enjoy ourselves. We'll also take a flier and see if we can talk to who's in charge of that building and just spread some awareness because usually people are, like I said before, just not aware. But after they learn of the boundary, then it's their responsibility to do something about it. I wanted to mention to you the way to download those flyers is by going to our website, which is changing spaces campaign.com and then clicking on resources and then our advocacy toolkit. One other thing for people Think about as not everyone has the time or the energy to go out advocating in their community, and, you know, approach places to ask for accommodations, and it does take time and energy. So if you feel strongly about our state becoming more accessible at Changing Spaces, Ohio, we have branched out. And we've established a nonprofit organization called Inspired Access Foundation. And we're brand new as of December 2022. And we are beginning to raise funds. And our goal is to fund projects around Ohio that will make any space more accessible and inclusive. So sometimes if you don't have time or energy to advocate, you can donate. So our website is www dot inspired access foundation.com. And if you'd like to make a donation, we're a nonprofit organization, it's totally tax deductible. And we will put those funds to good use to making Ohio a more accessible and inclusive place.
Scott Light:I want to pick up on what you were talking about awareness and inclusion and hope that brings me back to the work that you do here. Because when you and and others take people out in the community when they are included and when it is equitable out there that makes that experience all the more full. Right? All the more enriching.
Hope Johnson:Absolutely. I will give a quick example of being included. We go to Bob Evans, every other week, because we love food. But we have we go there at the same time, same people, same everything. We have a server who from the beginning has learned she she never once questioned anything. She asked our names. She's talking to the to our individuals. They know her name, they know who she is, she knows who they are. She sees our vans and gets our drinks ready. I mean, this woman is phenomenal. And when we leave, they're like oh, she she didn't mess anything up. And you know, they love that they love feeling like just a regular. That's just they absolutely love it. Another location that we go to all lot is Get Air in Hilliard, because the manager there is so phenomenal with them. He sees us come in, he knows their names. He asked how their week's been. They just talked to him like they're just like, they're typical. And it's it's a game changer for them. Even if they can't respond, they smile and they they laugh at him. And it's the it's I guess the little things but also the simple things that people were you know, we're like, oh, well, that's just another person. But to them it it means so much because there's so many times that they just get overlooked. And they you know, if they say hi, there's one client and he will say hi to anybody, everybody that he says hi, hi, hi. hi. And if you don't respond back to him, he feels like it's an attack on him. Whereas whenever you do he will sit in there and talk to you and Hey man, what's going on? He just he just loves that interaction and a lot of them do even if they can't respond to you, they can hear you and they can see you and and they feel you and they'll remember you because you made them feel included.
Scott Light:That's a great way to wrap up this episode. This has been really great. So Hope, Kim thank you both very much for joining us today. To our listeners you can always be part of episodes to come you can email us your questions comments at podcast at I am boundless.org and again don't forget to give us a review that yet another way we always want to hear from you. This is the Well-Being podcast brought to you by Boundless.