Christy Kopp joins us to discuss how she learned to navigate the complexities of raising a child with special needs and how her daughter inspired her to start the non-profit Kids Mobility Network which provides children with disabilities complex rehab technology and durable medical equipment.
Speaker 1 (00:00):
Hi, my name is Damian Rosenberg and I’m a curious fellow. I enjoy learning about new things and lately, maybe for the last, 15 or 16 years, I’ve been really interested in the community that I love to work with. Denver’s and Colorado’s disability community. It’s diverse. It’s wonderful. It’s impactful. It hits on all cylinders. There’s a lot of passion so these weekly, monthly podcasts, we’d like to meet people in this community that really shape it and, yeah, come along, come and see what is happening in the town. That’s good. Okay. All right. All right, well, this is great. Hi, Jason. I’m Damian.
Hi, Damian. I’m Jason.
Alright. Alrighty. We have Sarah over here and we have a very special guest who is number two on our list, but number one in our hearts, really Christy I’m not going to say her last name and let people kind of think about it, but she’s been very influential in the disability community for a number of years. She has a lovely daughter who we’ll talk about her daughter, talk about her husband. We’ll talk about her business. I’m proud to, call her a friend. yeah, I’ve known her a long time and I always enjoy seeing her. And I spent a while because of COVID and I started this, today. We got her special pastries. I know she has a little bit of a sweet tooth. We got some pastries for her. yeah, let’s say hi to Christy Kopp. Welcome.
Thank you. Thanks for having me. Thanks, Damian. And thanks, Jason and Sarah for bringing me in. Yeah, so I like Damian am a lifetime learner. I love to learn new things. It’s one of my passions. When Damian, I read his introduction, not the one he just said, but the one on the website and it said that he’s an ally of the disability community. And I really feel like he’s been a giant ally. He’s helped, my family. He’s helped the group organization that I started. And also just up top to tell everyone that I’m friends with his family, I’m friends with him. And I’ve been with PASCO as a CNA for going on 17 years. Yeah. December will be 17 years.
That, that you could see a rated R movie, 17. You don’t need to have an adult – like 17 is a weird one right? You’re not 16. You get your license, seventeen, you can see a rated R. Yeah. Let’s start, let’s go whack. We kind of go back and then we go forward. Sure. You’re a kid from Michigan – were in the glove?
So I’m from Niles, which is right above South bend, Notre Dame. And my mom worked for the University of Notre Dame for her career. And my dad was in the automotive industry and Detroit. And then I went to Ferris state university, which is in Big Rapids, which is where I met my fellow bulldog, Pete Kopp.
Go Bulldogs, Ferris state. And then you met Pete. Pete, Peter Kopp, and then you moved here.
Yeah, we moved around a little bit, but we ultimately wanted to be in Colorado. So we chose Colorado.
You, you moved to Colorado. Do you have lovely Kayla? Yes. Okay. Now tell me about Kayla.
There’s so much we only have an hour. Okay. Well, so it was kind of unexpected. Kayla was born in Aurora, she’s going to be 23 in July. Kayla had a kind of traumatic birth, and that she had to be resuscitated and subsequently had a lot of medical challenges. We just kind of kept going to doctors and kept, you know, trial and error. Look on the internet. Don’t look on the internet if you have anything going on with your kids, nothing to do. But anyway just kind of checking the boxes and trying to figure out what was going on when she missed her motor point. She missed, you know, the sitting up the rolling over the crawling, those types of things, and then getting her to those special places and being so, so thankful that we lived in a metropolitan area that had excellent healthcare and that we had you know, full coverage insurance for her. Critical for having someone with such high medical needs.
How are you? Like I’m thinking 23 years. So this is ’98 roughly. Correct. So Internet’s just nascent. I mean, it’s a baby what’s happening in those. How are you finding resources? Are you learning from Children’s Hospital? You’re learning from your pediatrician, I mean, how do you find other families?
Yeah, it was really challenging. What Kayla has, in particular, is a metabolic disorder. That is one and 92 million, so it’s insanely rare. So it wasn’t like I could run down to the coffee shop and eat with a group of, you know, X people. It was pretty terrifying to look on the internet because you always, you know if you get on WebMD or whatever, you know, you have a, you have a sliver in your toe and you think you’re dying. But so it was hard to see what was on the internet and there really wasn’t a place or a person. We started doing the traditional therapies, PT, OT, and speech. And there when you’re in the waiting room for five, six, eight a week, but that’s where you find your tribe. And that’s where I found my tribe and finding the people that were a couple of years ahead of me in the disability world, not knowing that I was gonna, not only was I in, but I was, I was staying in and I didn’t know that at that point. So but finding those people that would tell me, you know, it’s complicated, it’s expensive, it’s time-consuming, but you know, there’s also great parts of it. And a lot of the great parts of this life are those people before me that have brought me up one being very Rosenberg.
Well, yeah, I think that’s probably with any kind of civil rights or just any kind of movement like you’re standing on the shoulders of the people who came, right? So like you’re leaving a Mark for someone to follow in your footsteps and you’re following it. Doesn’t just happen in a vacuum. You’re learning from those people. And but what were you doing before work-wise before, during Caleb? What was what’s happening?
Right. So I had had a previous career in mental health and I had worked in adolescent psych hospitals. I ran a suicide hotline. I worked a day treatment program and all this was around the time of Columbine. And so I kind of felt like once I had Kayla while I loved working with people with high mental health needs, I felt like after I had Kayla, I knew that she had needs that I needed to tailor a lifestyle where I wasn’t giving, giving, giving during the day, and then coming home and giving her the leftover. I really felt like she is our only child needed all the love, time, money, attention, and zero to five, zero to three, and zero to five in a child’s life. Any child’s life is critical. So I needed to retailer my work life to allow for 10, 12, 18 hours of therapy slash doctor appointments a week.
And I had been in the school system in mental health, and I wasn’t going to be able to go back to a school schedule and say, Oh, by the way, I’m going to go live in the hospital for two weeks. What do you think about that? That’s where honestly, once we got on the waiver when Kayla was eight, she had to wait six and a half years to be on the Medicaid waiver. When Kayla was eight and I started with PASCO, that’s where I was really able to you know, be covered, feel like I could focus on her and not have to be accountable to anything but her health first and happiness. And it, that is a very lovely place to be knowing that you have something to fall back on and people and a place and a tribe that that’s what PASCO has been for me.
People place a tribe. It’s been a learning, a learning center for me been a friendship builder for me, and just a really good sense of community that I can count on.
What waiver was that, that you waited eight years for?
Yeah, it used to be it was called the Katie Becker? Beckett? Waiver or the model 200. And then it was, you know, now it’s called the HCBS. So what makes it different? At the time was that my income would not be counted towards her going on the waiver so she could stand alone with her disability. You know, you have to hit all the criteria, but once you hit the criteria, then the parent’s income is not taken into account. So that was critical for my family, because to that point we had been you know, you’re just kind of almost going into debt and you’re at 50 bucks a pop and your kids go in six times a week. I mean, you know, 300 that’s not even the deductibles, that’s just, you know, they’re just walking around for therapy. So these are expensive people and they’re very expensive to insure.
Well, yeah, I guess, like to go back. So you’re going eight years ahead. So you, you get this diagnosis, benchmarks are not met your beautiful daughters growing up. You’re this is, you’re finding stuff out, you’re learning in waiting rooms. You’re talking to people and trying to navigate what else is out there? I mean, you’re meeting influential. I mean, like you’re talking, we talked earlier, like, who did you meet? Like, what did, how does that look like? You don’t know where to go. This is roughly what, 2001, 2000.
Right. So she was actually diagnosed in 2000 and we were actually sent to CU Med came in, diagnosed her, and then they sent us to Virginia, to the National Institute of health to the University of Virginia Medical Center. And the world’s, the world’s only doctor that dealt with us. It’s called Sjogren Larson syndrome. And it’s from, it’s from Sweden. Although we feel like we’re not from Sweden, okay. So what, like Swedish genes? Yes, yes. Correct. Correct. So Sjogren it’s S J O G R E N. And then second name, L A R S S O N. Those are the two doctors that found it in Sweden. And so when we went to the doctors in Colorado, they’d never heard of it. Interesting, interesting story. How we got to the diagnosis just super quick. Cause I, I love this part that when Kayla was born on day three, she had a genetic skin disorder.
She had it when she was born, but she was diagnosed on day three by CU Med a guy named Gary Bellis and he was a dermatologist. So he came in, looked at her. So I’m going to Gary Bellis and I’m working on her skin and doing all these things. And I said, Hey, Dr. Bellis do you think that the skin and the motor are related? Cause now have motor challenges? And he was like, huh. Well, that’s very interesting. It’s like, I, I’ve never really seen that. I don’t know of that. I’m like, okay, well, let’s think about that because I don’t think it’s cerebral palsy and the skin disorder. And he was like, okay, let’s think about that. So basically I hammer, hammer, mama, mama, mama, crazy mama hammered him. And finally, he said, okay, bring her down to CU Med, when it was at Colorado and eighth.
And he said I teach, he said I’m a dermatologist, but first I was a pediatrician. So he went to school to be a pediatrician at CU med. Then he said, well, this is boring. Not what I want to do. So then he’s like, well, I think I want to do dermatology. So when you went back, got dermatology. And then he said, well, dermatology, you know, okay. A lot of its genetics. So we went back a third time to do genetics. And then he said, Oh, of course, he was so cool. If you go three times to med school, they throw in a Ph.D. I said no they do not.
Gary Bellis, doctor, doctor, doctor.
and he married a doctor. Yeah. So anyway so we took her down to the basement way in the bottom of the med clinic and they took her skin, blond hair, urine, fingerprints, video, walking, everything.
And he just basically gave it to the third-year students and said, all right, she is never going to let me live this down. Unless you people find this on the earth, go find it. If you find the connection, which she swears in all of her bones, then then I will publish with you and you’ll get an A for the semester. And so this was in July when the new residents came in to train October, he calls and he said, I had a hit. And I said, okay, tell me about your hit. And he says, well, it’s from Sweden. And I said, okay, what’s the incidence one in 92 million. And I said, okay. So we’re both carriers, Pete and I are both carriers. And I said, okay, well, I need to do the testing to make a definitive it’s $2,000. Can you bring me the cash in the morning? Your insurance won’t cover it. So when Pete got home, I said, Oh, Pete, guess what? You’re spending 2000 dollars on it, but that’s what it was. And what makes you, what, what you eat makes you not able to walk? Is that not crazy?
I mean, I don’t understand any of that.
It’s metabolic. So when you eat it, your body can’t particularly yeah, it’s just incorrect absorption and it actually clogs her brain or her neuro neurological system.
How many do you wonder? How many times where? I mean, again, there’s a form of advocacy saying, I think you’re onto something, but I think it’s also this. And how many times is it moms or dad? I mean, it’s always moms, right. Dads or wherever, somewhere in the background. But you know, it’s always the advocate, the mom, who are saying, I think you should also look into this cause you hear about it, right. It’s not like the doctor only focusing on one thing, especially when it’s so rare when you’re like, Hey, just check it out, just do me a favor. Would you, can you look into this? And then they’re like, Oh my gosh, you’re right. Like, that was, Oh, that’s really cool.
Yeah. And then he sent us to the world specialists. There’s one person and his name is Bill Rizzo. And he’s the doctor that took this on in the world.
Where is that, Is that a clinic?
It was, He was in Virginia now he’s in Omaha. So we go to Omaha a couple of times a year and keep Kayla with him at all times. But now I didn’t have anybody before me or anybody to talk to or call or anything like that. And now you have a giant Facebook, not giant, but we’ve got like 40 families on Facebook. And I mean, we have a private Facebook group that we can talk about everything. So that’s, that’s our new community.
That’s amazing. Like that’s the internet too, right? Like all the crazy stuff on web MD, but also like Facebook, like you can find people like, Hey, did you ever hear of Sjogren Larssen? Yeah, I saying that right? Sjogren Larssen? I was in Sweden and they did this with their mouths, just indicate like, okay, good. All right. So, so you’re, you’re, you’re, you’re finding this out, you’re doing this and now you’re in Denver. It’s 2000. You’re working or you’re out of work. You’re not working now. You can’t work anymore.
No, I started tinkering around with ideas on things to put on her skin, just for her skin disorder. And
Now, what does that look like, her skin disorder? If you don’t see it,
It’s red it’s itchy. She actually makes more skin than we do. So “Icthy” is fish scale, like in Greek or and so she makes more skin. So like, if she’s out here when she got up, you would be the vacuum cleaner. And so it’s, it just slips off type thing and really nothing can do anything about it from the outside, because it’s actually from the inside. So she’s like lacking an enzyme to hold her skin to the other. So anyway, but I started cooking, making potions at my house. Yes. And this is before we had, you know, so many great organic products. So I was literally at the vitamin cottage because we didn’t have whole foods or anything you couldn’t order on Amazon or anything. So I was just baking things, you know, cooking things in my kitchen. So I started putting things on her and then I gave them to friends and that became popular.
It’s sort of spun out of control. And then that was my new job. So I did a little party for my next-door neighbor and I was just like, Oh, this is something that I’m doing. Don’t you think it’s fun? And they were like, yeah. And I need six of those and eight of these and can I have them by Friday? So when I came home, I said, okay, Pete, you build businesses. I, you know, here’s all this money. What should we do with this, this, this a thing? And he was like I don’t know. Maybe it could be a thing. So we decided to,
What is it you’re making though, like a soap?
No. Well, so we had like a body butter first and then we had, and it went on to lip balms and bath bombs and bath salts and bath bodies.
How are you learning? How to you just making this up as you’re going?
I, yeah, a lot of it was trial and error and I would you know, they say not tested on animals. I had every neighbor up and down the street, you know, testing. And so it ended up, it was called elements HomeSpot and it ended up that we had 250 reps repping this stuff all over the United States and kind of like Tupperware parties type thing. And I just figured, Hey, if it works for Kayla, it works for everybody. And it was, you know, organic and handmade. And so we did that for, for quite a few years, right up until Kid’s Mobility. We actually sold that too, it was called Elements Homespa.
Wow. You guys are you, you’re hustlers, you guys you’re good at what you do. You’re good at setting up businesses.
Well, I mean, when you have
You really compliment you and Pete really compliment one another very well.
Thank you. I think we have different skillsets. I have a bigger mouth.
Yeah. All right. No, but so who did you end up selling that to?
And another group that was coming up kind of behind us when wanting to do the same thing. I just kind of switched my passion switch to then going into equipment. And once I saw that there was a need, I knew that I would always have the skills to make it for Kayla. And so at that point, I was kind of ready to move on to the next.
So now you have some capital behind you and then you’re so, but what was the Genesis? I guess is what, so she’s in a wheelchair. She’s a, what, what kind of device was she in at that time?
Right. So she was in a little Walker and then she had like a baby wheelchair and how it kind of tipped off how I kind of moved from one, one business to the next was that I was at the children’s hospital gait lab. And if you guys have never seen that is one of the coolest places on earth.
And they hook electrodes up to your body. And then you’re kind of walking with your skeleton and space and time. And the technology actually came from like green screening and movie production. But what it does is it tells the doctor how each of your muscles is firing or not firing correctly. And so Kayla has actually done it 10 times. It’s, it’s so cool to watch. But I was there and I had this little Walker and I said, Hey, Kayla’s outgrown this, what should I do with this? And they said, Oh, Christy, that’s not a thing. That’s not like, I’m like, don’t you have, can I drop it on the way home? Flip a card, you know, who do you know? No nobody’s doing that. That’s not a thing. And I’m like, okay, well where on earth does all of it go?
How much is that? I mean, those are expensive, right? I mean, how much does something like that cost even back then?
Right. I think that was about $750. Now they’re up to about $1800, just for a walker, which is literally just like four pieces bent, you know? So they said, well, you can leave this one here because we’ll use it here in the clinic, but no, that’s not a thing. And that was the light bulb on the way home, the whole way home. I just decided this is my new career. This is my new business. I’m going to help these kids. I’m going to somehow make it into a nonprofit. And so I came home and started digging, trying to find like you’ve said before, you know, don’t recreate the wheel or whatever. Trying to find somebody else who did what I was looking for, that I knew this need in my community. And I felt like if I can do it, why not do it? I have to do this.
Okay. So for Kids Mobility, there’s nothing like this for kids, but what about for adults? Do they have, I mean, like you hear about like lending closets that have like, is that would be the only thing comparable to that.
Well, okay. So how kids and, how kids and adults are different in that kids outgrow their equipment every two to three years, just like, you know, typical kids outgrow, you’ve been through those shoes, coats.
I wanna have a business where you do shoes. Yeah. Like anybody make the shoes and then they’re out of them in 10 minutes. I can imagine. Yeah.
So like Kayla’s wheelchair that she’s in right now is $8,500 and it has no power. It’s just a manual wheelchair. And so it’s she, she actually has two, one is the rope Broncos. One is orange with blue wheels. And the other one is blue with orange.
Nice represent Kayla.
But but they are incredibly expensive. And I’m sorry I already forgot your question.
No, no, I do. But there’s nothing like that for kids at that time,
Adults, they just adults wear their stuff out. So hitting curbs, they’re going into RTD, they’re going over stuff. And and so they’re going to get their full life out of that equipment. Once an adult has a piece of equipment, you don’t want it back. I mean, they, they’ve taken it in and out of the car and, you know, it’s been hit and beat and sat in and lived in, kids are much lighter on their equipment and they’re, they’re smaller and they don’t have as much torque and they’re adorable. They’re not heavy users on the equipment. So the equipment is actually in great shape. But you said that lending library, we think of lending libraries like, okay, an average person broke their leg and they get a wheelchair from their church or some crutches, but that’s really not what we’re talking about. What we wanted to have was a full specialized system.
That would be exactly like you would get if you have insurance. And so we didn’t want it to be better than what you had. We want it to be excellent for you. And so all of our pieces are custom built and designed and or redesigned for the end-user. And so what it looks like when it comes into our organization might not be what it looks like when it goes out. And we have a full service behind that product. So it’s not just a product or a place. It’s a service in that. We have someone that is licensed in wheelchair technology set up that piece of equipment. And when we look at what a person needs, what I mean by that is what do they need for safety from their head to their toe, for their body safety in space and time going on in the world, but also what supports do they need from the time they wake up until the time they go to bed. So, you know, knowing PASCO and all the, we call them the ADL’s activities of daily living. What does that look like for that person? Because our primary is to keep the person safe, obviously. So we wanted it to be a full-service system to where it wasn’t just better than you had. It’s excellent. Now it might say Bobby, instead of Billy, it might be green instead of blue, but when it leaves our shop, it’s in excellent condition.
No, that’s interesting. So that’s all going through your, I mean, obviously not all that, but that’s going through your head. You’re going back home. Are you living in the mountains at that time? Were you living in Franktown?
Nope, we were in Highlands Ranch.
Oh, Highlands Ranch. So you’re leaving University and you’re like on Colorado Boulevard getting on to whatever road and you’re like, Oh my gosh, nothing’s happening. This is, and that’s where that light bulb. Pete’s in the car with you, Kayla’s in the car.
No, Kayla was in the car with me.
Are you talking to her saying, “Oh my gosh, this is a…”
Before you ever talked to anybody, you know, on cell phones in the car. But when I got home, I was just so excited to tell Pete. And he, he just looked at me and he said, okay, so you want to sell a company. So mom works for the company. Dad works for the company, it pays all the bills for our special needs person. He’s like, you want to sell this company and just like give stuff away to all these people. And I’m like, yeah, I just decided that’s my new thing. And he’s like, get another new thing.
So you hadn’t sold yet with other companies. Okay. Yeah. Yeah, yeah. Okay. So Pete’s looking at you and his mouth is just agape. What are you talking about? Christie? And you’re kind of the crazy, like…
I said I said, well, I think we should figure this out. So I started taking things into the garage and that was either going to be the tipping point, you know, where he was just going to,
How much stuff do you have at that point?
Well, I mean, just things like if it into my garage, but I convinced him that we needed to start the non-profit and he said, he said, okay, honey, you know, my little, he thought it was my little pet project and he got me a little, UHaul place where you pull up the, you know, a monthly UHaul place. And he’s like here, here’s your little area that you can get the stuff out of my garage and keep it over here. And now, you know, 15, 16 years later you know, we’ve put out like going on $7 million worth of equipment.
I saw the numbers and you’ve helped 1500, 1600.
Yeah. And some of those people have been multiple times, which just makes sense when they outgrow their equiptment that they come back to get our equipment. So,
I mean, you could potentially by the time, I mean, so you’re saying every two years, someone’s growing out of something roughly.
Correct. And the state doesn’t want to back and the insurance company doesn’t want to back and you can’t take it to Goodwill. What do they do with, so that started
In 2005. Correct. And then you sold and then when did you become, so, so you told all your friends, you’re meeting this community at this point in 2005, you’re talking to Christie Blakely, like uh kid, Kelly, Kelly, Stahlman that usual suspects in Denver. Okay. And then they’re hooking you up with other people. Yep. They’re hooking you up with other people. And then you were telling me a story and I think this is how our paths kind of crossed our family’s paths. You’re at a, something to talk about what’s happening in the waiver world. What’s happening with kids with special needs at this point in 2005, 2006?
Well, we have a giant waitlist and I know for well, for lots of things at that time, but we were trying to get on the Katie Beckett waiver, which was the model. It was called the Model 200. And now I think it’s morphed into the HCBS waiver.
Right. And we’ll link that just some history of the waiver. Cause it’s pretty interesting how that goes.
Yeah. And so that was going to be something that would help our family tremendously financially
Because you make too much money for her to become on Medicaid. Correct. Okay.
And yet you’re kind of like, you’re kind of in this special kind of hell in the middle where the expenses for your human are upwards 50, 60, $70,000 for the therapies and the doctors and the medications, even if you have primary insurance just things that, you know, your deductibles or things that are outside of your plan, which it’s amazing how many things fall outside of your plan, but it’s just farrier expensive. And Kayla was on a six and a half year wait-list to get that. So we were down at the Capitol and it was kinda my first, first day down at the Capitol, which was exciting. And I’m meeting with different people,
Just throwing rocks and bullhorns, both what’s happening, tear gas, what’s happening.
So that was so we had, you know, it was, it was just so sweet. So we had this big gathering of families and we had grandmas and we had babies. Then we had balloons and dogs and
Very effective, you know, the market, right. Like they know like, that plays well.
And that’s, you know, that’s, that’s who we are and lots and lots of wheelchairs. And so we went inside the Capitol and met with different representatives and talked to them about what that looked like the needs that our people have and how great they are. And I think a lot of them were surprised and I actually kind of got Kayla to to talk herself. I gave her some talking points. She had some handouts with her picture and kind of some little stats about her and the different things that she uses in the community as far as needing resources. And so that was kind of our introduction and we met lots of great people there. Cool.
Nice. So so I guess, and then you meet, you know, all these people you’ve heard about PASCO because now we’re doing the family, the family program. Right. But you’re not on, you’re not allowed to get on that cause you’re on the waiting list.
Then you get off the waiting list. Eventually, Kayla is eight, eight years old. So eight years you did without any of this.
Correct. And it was very expensive and we went into debt to get her above and beyond. You know what I mean?
And I mean, because your guys’ business acumen, you’re able to stay afloat because you have a lot of, you have a lot of things in the fire, then all sudden you find out PASCO, you probably knew about PASCO and then you finally got on. Correct.
Once we were on the waiver and had a number.
Okay. So what year is that for PASCO? 2003?
No, I was, I was calculating your, your anniversary. Right? Right.
Yeah. So that was great because that would help me have the extra income I needed, but also the insurance being self-insured is so, so, so expensive and having the group insurance and having the training and the support and the day-to-day having a home care nurse who we still have the same nurse, her name’s Tammy. She’s awesome.
Tammy is great.
Did you do the class when we had it with that Jim? I did too. Back in the day, Jim, he was like this old army guy, I think an old army nurse who taught the CNA class and we used to do it in person at our old office, pretty funky,
Well, you’re already performing all these skills, for Kayla. So what was the additive for actually going through like the CNA training?
Sure. Well, I think it was the camaraderie of the group and being in a larger group and not feeling so isolated and being able to do, you know, the extra trainings, like the CPR or, you know, the different ADL courses first-aid type thing. But just like having someone that you could, if something did happen that you could call, or if you had a question that you could, you know, kind of go through a system and, and, you know, and talk to other people, then when you come to the actual physical place of PASCO meeting the other families, like in the events, like I’ve had so much fun at the barbecue and at the Halloween party. And, you know, there used to be a Christmas party that was so, so fun. And, and then just, you know, knowing that there were people out there that every hour that you’re kind of, you know, drudging through and you’re like, okay, I’m helping my person with this again. You know, even though you love them the most and you know, they’re funny and great and smart and you know, you want them to be their best some days it’s like, Oh my gosh, you know, if I have to do this one more time, but knowing that there are other families out there just like yours, I mean, I’ve made some, my best friends through, through this group. And I just,
Did you make friends in that class?
I do. I have. I have friends from that class that I have scheduled my, my SkillsDen with, and then we go to lunch with a margarita to celebrate.
And the couple of years out of the 17 years that I haven’t been able to meet up with my, my buddy due to sickness or somebody is traveling or something, heck you know, I feel like, Oh my gosh, this is my, this is what we do after we do that.
That was something that Barry had mentioned. He said, you know, oftentimes families were just like this island unto themselves and they come into these classes and then they’re probably shy first. And then you start talking in this, this. Well not you, you’re Loud mouth McGillicutty but you, you all of a sudden like, now you have this shared thing and then you get like, Oh, my kid has a seizure. My kid has a seizure. What are you doing? Like, how do you, I mean, and again, just that community, that this was small enough in that
Have you passed on any of your recipes for skin?
I do sometimes, I make things and give them to people. You have a robust?
Well, we’ll talk later.
Do you have a rash you need to talk about, Jason?
That’s a different show, that’s a different podcast. That’s Jason’s rashes. We’d have the rights to that one
That’d be a lot of editing.
So we’re, we’re to PASCO. You’ve got the, you got the waiver Kids Mobility is up and running. I meet you probably in 2006, 2007, or for plugging along now, where’s Kids Mobility now. I mean, it’s a lot, we’ve done a lot in those last couple of years,
A couple of things I want to highlight within the programs too. As we’re talking about Kids Mobility, but what we really wanted to do and just to kind of give an idea, an overarching historical view of it, that Kids Mobility. We came up with the name because we wanted kids to be our scope because they outgrow the equipment, Mobility that we will only really wanted to do wheels. So we wanted it to be, how do you get from here to there? What supports do you need that would be wheeled, Mobility equipment, and then network. We wanted to be the network family in-between the family that no longer needs the equipment and the family that desperately needs the equipment. So what is a business system that we could put in place that can be replicated over and over and over that we could put liability insurance around, under and over to make sure that we were covered for liability?
And also that the group was covered. You know, that the organization, I am not the organization, the organization stands on its own, but I’m the executive director and you know, help with the day-to-day operations, but it is a 501(c)(3) nonprofit with the state of Colorado and with the federal government and it’s owned by the people. So it is a charity that is, is donated to, by the people and supported by the community. And so PASCO has also been a great community supporter and come out and helped us with different events. And you know, been a great supporter. So we appreciate that
And so how do, how does someone get involved? So I’ve got a child she’s grown out of her chair. I call Christy…
Damian was saying, please don’t leave it in the front, which I know that sometimes people do. So basically, yeah, if somebody had equipment that they had outgrown and they no longer needed they would drop it. At our Centennial location, we just have one place. It’s a giant warehouse and so they would drop it off and then they would get a tax deduction receipt for their piece. Now it just makes sense if they’re dropping something off Jason, that they might have a need on the other side. Right. And so then we can address that need at that time, if they, if they don’t need anything, then that’s a, you know, thank you for your equipment. One of the things that that came about that I wasn’t really expecting, I wanted it to all be, you know, happy and, and puppies and rainbows.
But one of the things is that I know PASCO knows this, that, you know, our clients have passed on and then families will bring all of the equipment. And for them, it is a service in that now you know, not to the point of like organ donation, but, but it’s the service that they know that Bobby’s wheelchair is going to go on to another person and be able to help somebody. And that, that part of Bobby lives on and I was, I was not expecting that. I hadn’t planned for that in my business plan. And boohoo I couldn’t stay the rest of the day, the first day. So but I think just, you know if you have insurance and this is so expensive an $8,500 chair, you know, I have Kaiser and then Medicaid picks up the rest, but I can’t just let that sit out in the rain.
You know, I have to make sure it gets to someone else. And so the system, the system really works. And I think that there were so many families, you know, were in complicated situations where maybe there’s a divorce and mom can get it at her house. Mom has the equipment at her house, but then dad, you know, they can’t schlep it back and forth. They don’t have a car to shlep it back and forth, whatever grandma needs a feeding chair at her house, or, you know, maybe they need a piece to get on the bus or for school or for camp. And there are just a hundred million ways where we kind of have those holes. And it could be, you know, the supports again that they need from head to toe or the supports that they need for morning, tonight. What does their day look like? You know, do they need a specialty piece for, you know whatever. So one of my favorite parts, and I don’t know if you want to tie this in now would be adaptive bikes. And so coming into spring-summer, I would say probably my favorite part of my job in the year is when we can get kids into recreational equipment and something that we’ve come across as a great benefit to people that have the children’s extensive
Yes, the CES Waiver
Is that I think a lot of people don’t know if your child is on this waiver and they’re under 18, you can access a yearly benefit of $1,000. And you would go through your community center board CCB for short mine’s Developmental Pathways.
So DDRC or North Metro, Rocky Mountain Human Services, all these are going to be on the, it’ll be on the website as well.
Okay, great. So you can access this through your case manager, your CES case manager. I don’t know that they will know about it, but we will tell them about it. So I have all the information I can send it to your case manager. So just call us and Jason, we’ll put the contact information, call us and tell us that you have the CES waiver that you’re interested in getting your child an adaptive bike. We can handhold you through the process. We are, I’m just going to say, adaptive bike experts. And so, I mean
I saw your tattoo earlier…
It’s very challenging though because you can’t just run to the Walmart and get this bike and you don’t know, and it’s, you know, it’s expensive and
How much do these cost usually, if you’re paying out of pocket?
So ith this with this particular waiver we have deep discounts with the bike providers. And so with the discounts that Kid’s Mobility has and the CES $1,000 benefit, we can get it down to between like maybe like $200 for a family out of pocket for like about a $2,000 bike that is super sturdy. I can actually ride my own daughter’s bike. These bikes are great and they last forever. If you take care of them, keep them inside. But the other benefit that you can do with this is they also have a, you can do a jog stroller. So say mom and dad, you know, want to go out or they want to get out in the community. But their person has higher needs than a stroller they can get at the mall or whatever on Amazon. So they can get a, a specialty jog stroller that will help with head placement and specialty belts.
These are fitted. These are not like I mean, they’re fitted they’re, they’re not, they’re specialty made,
They’re specially made. They don’t necessarily have to be fitted. They do, they do need to be sized correctly. So so that would be one thing.
But it’s not like a Bob stroller, whereas this is different, right?
Correct. So the bikes are actually we spec them out custom and they’re built-in Rifton New York and then they’re shipped in, but we will do the fitting. We will put the bike together. We will help you get it in your car. We’ll show you how it works. And this is the particular bike that my daughter has at home. It’s R I F T O N. If it’s .com or .org.
And they’re Mennonites there?
Yeah, and they built our own system to build this equipment and it’s, it’s great.
Cool. So, so that’s a really great what great program that is and that’s brand new-ish?
It’s, it’s actually not, a lot of case managers don’t know about it, but it’s highly, highly underutilized. And I would love, love, love.
There’s bikes to be had.
Bikes to be had. Bikes, bikes and more bikes.
I just had a great meeting with Adaptive Adventures and they’re doing a lot of these bike things too, but that could be something that they could find out about as well. We’ll link with Adapted Adventures then. Okay. So people talk to their case managers. I, I always enjoy seeing you, it’s always just kind of fun just to hang out and chat. What else you got going on over there? Anything else you have your golf tournament coming up,
We do. We’re having a golf tournament at Meridian Golf which is a really nice golf community. It’s a, it’s a private club, but it’s a beautiful, beautiful place and we buy it out for the day. And so free beer. It’s June 21st and we’re still looking for sponsorship and also golfers.
Did you say gophers?
No, I’m the gopher for the day. I’ll go for, to get you a new beer.
Nice. okay. So that’s June 21st at Meridian, a lot of airplanes overhead. It’s nice. It’s near the airport, Douglas County airport,
Do they have their own airports at Centennial? I had no idea. Let’s end, let’s see. Any good Kayla jokes? Jason,
I got, I got, I got one for someone new coming into this since you are 23 years in, do you have any advice you’d give to like a family starting out or just how you navigated this whole complex system?
Yeah. And I’m not sure if I already said this, but I really think you know, like I said, I want to be a lifetime learner and I’m really a sponge as far as trying to learn from other people. And it’s really about the people that were in front of me that had already been a few years ahead of me in the disability world with their kids and the things that they had already learned. And now that I’m kind of in that, I’m kind of in that position where I’m getting older and I’ve been through a lot of the systems and the change and you know, the, just the different programs, things like that, that I want to be that person for the other people. And I think, I think that because it was given to me to who much is given, you know, you need to give, and I’m happy to do that. So it doesn’t just have to be about equipment. If you talk to me, it just doesn’t have to be that I want to be the PASCO. You know, one of the PASCO ambassadors, it doesn’t have to be that it could literally anything. If I have that knowledge, I don’t think, I don’t think that’s fair to, to hold that in because other people helped me. And so I want to help other people it’s al, al, al, always to me about community,
It’s like resources aren’t proprietary. What’s the like wiki, Wiki model. Like there for everyone it’s open-source, right? Like all these, there are people that like, I’d rather not share my resource, which is such a weird thing. Why wouldn’t you share it? No, I don’t want to share where I get this. Right. Yeah.
Especially if it helps kids, right?
No, it’ll benefit more kids. You’re not going to lose anything. I don’t know. I don’t know if that example is good, but for my, my example, but yeah, you’re really good at what you do. You, you, you are. I think what I see you, I think you’re very generous. I mean, I think you’ve lived this life like you said, and you’ve kind of, you know, I think you’re chatty, but you’re good at this. And I think you make for a really good ambassador from what you do and, and the community in general, but I think people appreciate it and I’m sure younger people who are starting off and maybe they get a diagnosis that’s unexpected. You know, I think like how you looked up to people before. I think people, you know, you’re like we just said, as we walked in, we’re older than we’ve ever been right now.
Right. So I think, you know people are going through this and I think it’s, it’s a different chapter. It wasn’t the chapter you were expecting. And you’ve been yeah, I don’t know if I really say like inspiration because I don’t think that’s real, but I think you’ve turned it into something that’s like, Hey, we’ve, we’ve helped a lot of people, you know, and those numbers speak to that and you guys are good at what you do. I always enjoy seeing you and hearing what else is happening.
Thank you. I mean, I think if you can, you should, and you can, and you know, Barry built this, and thank God he did, because it helps my family every single day. You know, not that I don’t use chocolate and liquor and humor.
In that order.
So Christy, what’s the next business idea that we could steal from you?
Kid’s Mobility was actually number eight. So I think I’m going to ride out into the sunset with PASCO. I think, I think my brain is tapped.
Any good jokes from that kid of yours?
Yeah. I just want to say that she’s hilarious and she’s great. And she, I learned from her every day and okay. One of her favorite jokes, she’s such a jokester. She loves, loves, loves to tell jokes. Her PASCO person, when he calls, he knows he better slam in 15 minutes. So so one of her jokes for Valentine’s day was what did the octopus say to his Valentine? Okay. I want to hold your hand, hand, hand, hand, hand, hand, hand.
That’s great. That’s good. Thank you. This is always a pleasure. We’ll see you soon, my friend.
Okay. Cool. Thanks, Christy. Thanks. Have a great day guys.