ARISE - EFR

Building Empowered Collaboration: ARISE-EFR & Community Partnerships

Tim Mahar

 In this episode, host Bruce Drake engages with Adaptive Design Coordinator, Connor McGough, to explore how ARISE-EFR forges meaningful collaborations with community organizations to enhance support for individuals with disabilities and their families. They discuss strategies for creating welcoming, accessible programs; the importance of mutual respect and shared goals; lessons learned from past partnerships; and how to sustain momentum over time. If you’re interested in how nonprofits, families, and service agencies can work together to create inclusive, thriving communities—this conversation offers valuable insight, practical tips, and inspiring examples. 

Speaker 1:

This is the Arise Exceptional Family Resources podcast, with your host, ceo, bruce Drake.

Speaker 2:

Hi everyone. I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I'm your host today for Exceptional Talk on Disability. I am excited to be joined today by Connor McGough, the Adaptive Design Coordinator at Arise and Exceptional Family Resources. Welcome, connor.

Speaker 3:

Thank you, great to be here.

Speaker 2:

Excellent, Connor. Why don't you start off by telling everybody a little bit about yourself?

Speaker 3:

So my name is Connor McGough. I'm the Program Coordinator for Ar Rise Adaptive Design. Grew up, let's see, we start from the beginning. Grew up in a small little country town, port Leiden. It's kind of in between Utica and Watertown. Couldn't wait to get out of there as quick as possible. Went to RIT after I graduated high school for industrial design. Started at graphic and was always interested in arts and design, fell into that and then realized I really wanted to bring that into the functional world and not just something digital or on canvas. And found industrial design and just fell in love with it and it's kind of like artsy engineering a lot of human factors built into it as well. And, yeah, once.

Speaker 2:

I so, what exactly is industrial design?

Speaker 3:

Yeah, so it's changed a little bit actually, even since I went to college. So it's a lot of product development. When I went, there is kind of how people classified it. So it's not building buildings that's what a lot of people assume or architecture things like that. It's more focused on a product. You see, kind of what's the appeal to that product? How does it relate to the person using it and the approach they take in using it? So you're working one-on-one with engineers to develop something, either a product or an experience. And now it's actually turned a lot more into user experience design since I've been there. But there is that product line of it as well. But it is a lot of creating devices, kind of being a tinkerer, a builder, a maker, all within that, but also thinking about, you know, the end user and their experience with either a product or an experience.

Speaker 2:

Were you always like that as a kid? Were you always somebody who was tinkering with? Things, taking them apart, putting them back together.

Speaker 3:

Yeah, I got that from my grandpa. He was always one of those, you know, always working. I actually grew up on a farm and just building around the farm, but yeah, it was something just ingrained in me from the start. I think I loved pulling things apart, figuring out how they worked, putting them back together. So, yeah, it got me in trouble here and there, but for the most part I learned how to get things back together so they worked again. That's fantastic.

Speaker 2:

So you know, with the merger between Arise and EFR, I've gotten to know programs and I've started to fall in love with a lot of them. But I think one of my favorites is what's happening with adaptive design Can?

Speaker 3:

you give everybody a little bit of an overview of the adaptive design program and what you're trying to accomplish. Yeah, so well, 30,000 kind of foot view here of the program is that we're working with community and we're building unique adaptive equipment that's low cost and very specific to that end user and their experience and their goals of what they want to accomplish, Whether it's, you know, a young child or an elderly adult, it doesn't matter really the age and it doesn't necessarily matter the type of device for the most part, as we're really trying to just solve problems, come up with solutions and ultimately make people's lives more independent, accessible and provide them greater opportunities in their life.

Speaker 2:

So let's back up just a little bit. So when you say solve problems, what do you mean? What problems are you trying to solve?

Speaker 3:

So, yeah, if someone happens to have a disability and they're going about their day and something's keeping them from ultimately doing something they want to do, we're getting creative and trying to figure out a solution to get them to that. You know, over that finish line, to that end goal, they have. Give us some examples. All right, I mean, it can be something as simple as someone wants to open a water bottle but they have arthritis. Okay, doesn't sound like a big deal for most people, but for that individual, throughout their day they're relying on somebody else, right? So it's a big deal to them. But you know, with some creative ingenuity we can. We can jump on a computer or into our workshop and work hands on with them, figure out, you know, how their body, their specific body, works, what their specific needs are, how they would go about it, and then we adapt a product to fit those needs and ultimately allow them to do what they want to do.

Speaker 2:

So you have an individual who can't open a water bottle because they have arthritis so they can't grip the cap. So what do we make so?

Speaker 3:

what do you make? So we work with 3D printers. So for something like that we would probably jump on what's called CAD software. So we build an item on the computer, develop it, design it on the computer, send that to a 3D printer. That 3D prints it out. So there are some products on the market that could help with that, but they don't always fit a user's need or sometimes they're just too expensive. So, for instance, like a little bottle opener can cost somewhere around like $20, $30. And and sometimes they're cheap and they don't work great, they break, you lose it. So you're paying that multiple times and usually it's not just one item a person needs throughout their life, it's, it's multiple.

Speaker 2:

If they can't open the water bottle, maybe they can't open the toothpaste or something similar.

Speaker 3:

Open a door, yeah, usually usually that accounts to a lot more than one task throughout the day. So those things add up and there's a cost to each of those. So the more we can bring down that cost for somebody, make their day more accessible and allow them to keep a few more bucks in their pocket, that's great. We're happy to do that. And so our 3D printers cost a fraction of the cost of like something on the market would cost. So a 3D print could cost probably something like that would be 30 cents, and usually that's something we don't really charge for. We just say hey, here you go. If you want to make a donation to the program, that's great. We appreciate it. It helps us keep the lights on and keep helping others in the mission we have.

Speaker 2:

So, again, sticking with your example, right, I understand how you're designing something that I assume that you're putting on the cap to make it easier for the person to twist. Where does the person's specific needs come? Do you bring in a physical therapist or occupational therapist, or does someone have a background in that, or is it kind of trial and error?

Speaker 3:

Great question, it's kind of all of those things Anytime. So we kind of have our design triad, our pillars that make up our approach to each project is we have the individual, and they're the most important part of this design process. We really want them coming to us, telling us what their goal is, what their needs are, and really trying to drive that design process so they're you know they're in control of their product, their idea and, ultimately, their solution. Then we put the people in place to help make that a reality. So the next most important part is a clinician. We try to help make that a reality.

Speaker 3:

So the next most important part is a clinician. We try to always encourage that person if they have a physical therapist, occupational therapist, speech language pathologist to come in and join them, be part of the team and their own network, even family and friends of theirs who know them well and want to help them. We encourage them to come in as well and be part of the process. And then there's the makers. So we have myself and we have a fabricator in our workshop. We happen to have a few interns right now too, which is great, but we do rely heavily on community involvement too. So we have a lot of outside help just makers, tinkers, hobbyists. We have some engineers in the community that come in and help us and also PTs, ots. But yeah, we try to get that clinical information and help and match that up with someone who knows how to take that information and build it into a product or a solution and really make that dream come true for that end user.

Speaker 2:

Let's talk about demographics. So where are the people coming from that you support? How old are they? Where are they hearing about us? Who are these people?

Speaker 3:

Big questions. So we have people coming from kind of all over New York right now. So I have a few people from up in the Adirondacks right now coming to us. I have some people out near Rochester. Most of our folks come from central New York around the Syracuse area but we do have quite a widespread footprint in New York because there's not many other programs, other solutions out there for people where they can turn to. So we're fortunate to have something like this in the Syracuse area. New York actually has three adaptive design programs one in New York City, one in the Hudson Valley and then here in Syracuse.

Speaker 3:

None of us are truly like affiliated with one another, but we all connect and collaborate and help, share our ideas to better, you know, better help one another. But the way people hear about us it's really a lot of word of mouth. We've really spread the word, tried to connect with clinicians because that's a great direct contact to the individuals who a lot of times are needing solutions throughout their day and in their life. We also connect with a lot of schools. We do a lot of work with kids and pediatric realm and, like BOCES programs, they usually typically have an OT or PT program as well, and you hit like a whole district that way. So that's a great way for people to learn about us is, you know, by their child going in and those PTs, ots, recognizing, oh, this child might benefit from something like an adaptive tool, and here we can turn them to the adaptive design program in Syracuse.

Speaker 3:

That's great so, but we, but we will work with any age, so it's not just we do a lot in the pediatric realm because there is so much need, but we will work with any age, and I want to promote that too, because a lot of people see a lot of the pediatric stuff but don't ultimately necessarily know that we can help with adults too.

Speaker 2:

I think the pediatric stuff. When you see it in person, it's pretty exciting to look at. Why don't you talk a little bit about some of the more popular items? I know you do everything as individualized to the person and their needs and the problem they're trying to solve, but there are some certain things that you do multiple of, and why don't you describe those a little bit, yeah.

Speaker 3:

So, oh man, the pediatric stuff is fun. So there is a lot of needs. Kids are growing, they're changing right, needs are always evolving and their skills are also evolving and the parents and the therapists are all trying to figure that out and what kind of the best approach is to helping that child. And we're there, just yeah, to do the same to assist them. But we can really intermix play into those pieces of equipment, which is really fun. The more we can blur the lines between play and therapy, the better. Ultimately that device is going to be successful for that kid.

Speaker 3:

So with children we actually work with. Everyone thinks it's wild when they first hear it. We work with a lot of cardboard actually. So we work in industrial strength cardboard. It's triple ply, so it's like three layers of your typical Amazon box right Stacked together. So that stuff is heavy duty. That's what they're shipping refrigerators like melons and the stuff holds a lot. We actually have in our workshop a couch and a chair built out of it for adults to use. We've had over 700 pounds sitting on that couch.

Speaker 2:

I can attest to that. It's 6'5" 250 pounds. When Connor told me I was sitting on a piece of cardboard, I was stunned.

Speaker 3:

Yeah, and it's not budging either. But yeah, we can do a lot with that. It's quick to build with it's lightweight, it's very forgiving as a material. You can take some off, you can put some on, so you don't have to worry too much about making mistakes, which is great when working with volunteers and bringing them in and getting them up and going quickly. But we do have a lot of repeat requests.

Speaker 3:

Once we put something out, we solve a problem for a child. We will ultimately see therapists see that out being used either in the school or at home and be like oh, I have like three more kids that could benefit from this. Can we make them for them? And we try to individualize those, you know, still to that unique child and user. But a lot of times they have a similar functionality and feel to them. But yeah, standing frames are a big need. We're making a lot of those supine, which is going from the back to fully upright standing and anywhere in between. Prone, which is more kind of on the belly, facing forward a little bit, taking some of that weight off the legs, and then a full upright stander as they progress too. So we do a lot of those getting kids up, standing, playing, engaging with other kids and siblings so they can start bearing that weight and building up that strength and functionality in their lower limbs.

Speaker 2:

That's fantastic and having seen them in action, it's great to see. So we're running out of time, so we're going to do some quick questions for you. You know 10 seconds or less on the answer. So how much does this cost for families or individuals who need the services?

Speaker 3:

Right now. We don't typically charge for equipment. We ask again for a donation. We kind of give an idea of what the product costs. We also ask our families to promote the program to their network. So they encourage, you know, small dollar donations from all their friends and family too, and that ultimately helps.

Speaker 2:

If I'm someone who's interested in volunteering with the program, what type of skill set do I need?

Speaker 3:

You can come with any. We'll teach skills. You can come with skills. We love when people have clinical knowledge or engineering knowledge, design knowledge. But if you just know how to sew or you just have an interest in painting or just helping in general, come see us and we can find a way to get you involved and do you have a wish list for your program?

Speaker 2:

Is there stuff or equipment that you wish you had, that you don't? Oh, yeah, always.

Speaker 3:

Our own CNC laser cutters. There's a laundry list of equipment that if people wanted to get a hold of us, we could Even just paint polyurethane small things like pool noodles, like little things like that. Even those ultimately add up over time. So any little bit of help we really appreciate.

Speaker 2:

Connor, I think we should have made this a double session. I could sit here and talk to you about this for ages, but before I let you go, why don't you tell people the best way to reach out to you?

Speaker 3:

Sure To reach out to me. You can dial me directly at 315-671-5104. That's my office number. You can also reach out to us through email at adaptivedesignatariseincorg. That's A-R-I-S-E-I-N-Corg. And yeah, you can reach out through the website at wwwariseincorg. Excellent, Connor, thank you so much for finding the website at wwwariseincorg.

Speaker 2:

Excellent, Connor. Thank you so much for finding the time to talk with us today. Ladies and gentlemen, that was Arise Exceptional Family Resources Adaptive Design Coordinator, Connor McGow. As always, thank you all for listening and we hope you join us next time as well.

Speaker 1:

This has been the Arise Exceptional Family Resources podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios. For more information, visit our website at contactefrorg. You can also follow us on Facebook. Thank you for listening.