Transforming Spaces, Changing Lives: How Joy Collaborative Builds Hope for Youth with Disabilities
1 in 6 children in the United States has a disability.
Having the right physical environment for them can make all the difference.
That’s the work that Mark Ostrom and Joy Collaborative are all about.
They bring together a community of builders, interior designers, architects, and manufacturers of products to address the physical space challenges for youth with disabilities that are typically low income or are burdened in other ways.
Instead of a one-time fun experience, these youth have a daily environment that is calibrated to help them holistically thrive. Take a listen for some powerful stories of lives impacted.
They are actively “friend-raising” right now.
Podcast Transcript
Jacob: [00:00:00] Welcome to Impact Stories. I’m here with Mark Ostrom and please introduce yourself.
Mark: Hi, Jacob. It’s Mark Ostrom, Executive Director at Joy Collaborative.
Jacob: Tell me about the good you’re trying to make in the world.
Mark: Joy Collaborative creates empowering spaces for youth with life-limiting conditions. So we solve for young people with complex conditions, whether that’s homelessness, poverty, medical diagnoses, one or more, and the bottom line is we’re really solving for dysregulation. Things like abuse, neglect, neuroatypical, autism, PTSD, or even just where general community support is lacking.
Jacob: How does that work? How do you actually help these youth?
Mark: The Collaborative in Joy Collaborative means we are working with a circle around whoever’s in the center. That could be an individual, or that could be a program that serves a number of people throughout the year. We bring together those who want to support young people and see them thrive. So rather than us, maybe stuffing backpacks or doing something like that, we bring together those in the design community.
That would include [00:01:00] builders, interior designers, architects, the manufacturers of products to address the challenges that we lean into that I just mentioned for those who are typically low income or are burdened in other ways. Keeping them from making significant changes to their physical space. We don’t approach our project as a paint and stickers kind of approach.
We really lean into and dig deep into what are the barriers that are obstacles to your success. And then set the design bar really high and figure out how we can get there, mindful of our volunteer’s time and, and treasure.
Jacob: I’m curious about your personal journey. What was that moment in your career when you realized you wanted to focus on making a difference?
Mark: I think it’s always been in me. This has been a long road. I had the initial concept for Joy Collaborative when I was in college, and the idea was, why isn’t there a firm focused specifically on pediatric design? And I couldn’t find anybody, and I was like, what is going on? So I look at the idea, I’d shelf it, I’d bring it back, I’d shelve it. Finally, I was doing interior design architecture work for a Fortune 10 [00:02:00] company who treated us like less thans. We did not have value to them and going to work every day and trying to rally my team to create amazing solutions just wasn’t resonating with this group. So I said, I’ve had enough. I need to go where my soul is leading me and build the business plan that we are doing now.
Jacob: Give me a sense of the size of this issue.
Mark: One in six kids in the United States has a disability. So, if you put it in the context of a classroom, and let’s say there are 20 to 30 kids in a classroom, now you start to see what the problem is that you’re walking into, times however many classrooms are in that school, times however many schools are in your community.
We have a lot of folks coming to us who are struggling. If you’ve got conditions in your home, you may or may not be able to keep both incomes active. You may be piled on with medical bills. You may need to quit your job because the programming that you need to do for your kid is so intense that there’s no way you can maintain a job.
So, what we’re doing is helping those families, I used family for an example, or using, in the case of [00:03:00] others, a program that doesn’t have the capital funds to renovate. For example, we’re working on a homeless shelter right now in our community that serves kids as young as 10.
The first thing that the youth will tell you when we interview them, is their space is depressing and chaotic. Many of these youth are either kicked out of their homes; or living on the street. They’re bringing in a lot of trauma. We do not need to bring them more.
If I can tap into the goodness of my community, where day jobs might be grinding and brutal, and they can take on some extra time to benefit and meet the people in our community that they’re actually serving, it is some powerful stuff.
Jacob: Can you give me a case study or two?
Mark: I can give you a couple. We had done a project for a boy with a physical disability. He relied on crutches, canes, and a wheelchair often to get around. His parents, as he was growing, were like, he doesn’t have to; these are a default for him because, in their terms, it was easy for him. His dream was to be a major league baseball coach. He’s like 10 years old. I’m like keep that dream. That’s awesome.
So in [00:04:00] renovating his space We figured out ways to incorporate things like a transfer station so he could move out of a chair out of his sticks onto a bench so he could do virtual training with his health care team. There were multiple different ways for him to adjust the space to do different kinds of physical activities.
It was maybe a month or two after the project was done, and, you know, we’re working with these families for maybe up to a year. We get to know them really well, and we become friends. And his mom called me on a Saturday morning, which wasn’t too unusual, and said, Mark, we have a problem and I’m thinking, oh my gosh, like something broke, something got damaged, who knows, a million things run through your mind.
And she said, my biggest fear that I never articulated to you was that my son would grow up alone. The problem we have is now I have 10, 10-year-olds in my house that won’t leave, and she’s crying and I’m crying. And here we go, that was her biggest fear. And that then brings more energy, more excitement, more motivation for him to do other things.
And that is where I just get super excited. We had a very similar example for a [00:05:00] family whose son was healthy from the outside, but he took 40 pills a day, 40 pills. He was 11 years old. He wanted an outdoor play space because he wanted a space to just have a zipline and just have a great outdoor space and connect to nature.
His dad pulls me aside later after the project’s completed and he’s getting very emotional. And he said, our son takes 40 pills a day. My biggest fear is that one of his organs goes out. Because if that happens, he’s gone. So you’ve created a space that he’s bringing friends over.
He’s being physically active. He’s going out and doing things that he never did before. He’s doing more creative work than we’ve ever seen come out of him. And because of your work and the volunteers that you brought to us, we have a completely different person in our house. Who we see beyond thriving, was his phrase.
Jacob: Both those stories are beautiful and thank you for sharing. Does your work tend to center around installing things in people’s homes or is that just a small subset? Paint me a picture of the breadth or kind of the types of projects you do.
Mark: Absolutely. The company was founded doing renovations in individual single-family homes. After a couple years of doing that work, we were [00:06:00] approached by other organizations like Ronald McDonald House, For Healing is a known clinic here in our cities that is a burn recovery space very similar in its model to Ronald McDonald House.
Both of those organizations who are clients now, serve a very large population, and they were realizing that they didn’t have space that supported the community that was in their space. So we’ve gone from single family to program space, to now our JoyMobile, which is a mobile sensory unit. We were working with public schools that did not have physical space, yet had, like the statistic I mentioned, a number of people who needed help in the sensory realm.
They didn’t have real estate to give up, so we created a mobile version of a sensory room that now can go to community events, schools, clinics, wherever. We were just at the Minnesota State Fair, which is the second largest in the country. We saw 2, 000 people in just about a week.
95 percent of them found relief in five minutes or less.
Jacob: Wow.
Mark: These are people coming to us in panic with a kid who’s melting down at a fair where you could imagine [00:07:00] is easily over-stimulating for people. But not only that, it helped the parents, it helped veterans with PTSD, it helped people who are experiencing sudden panic attacks.
Oftentimes these people would come back. In the same day, they would go out, they would come back. They were like, this extended my time here, and now I’ve got more time with my friends. I’m feeling much more relief. I love coming to the fair now! Some of these people, it’s stressful to even think about going to an environment like that so if we can bring relief to you in the form of something mobile, we’re finding that’s really pretty remarkable. To expand on our scope of service, we are a non-profit, and fundraising is difficult, as everybody on this call probably understands.
So, what’s really fantastic and exciting for me is now we’ve got other organizations or individuals coming to us saying, in the case of a family, we typically follow a low-income guideline in order to qualify. These families are not in that category, so could you design a space for us and we will pay you for that service?
We’re doing that for individuals. We’re also doing that for [00:08:00] larger scale organizations like the second largest children’s hospital in our state. For us to go from this small individual footprint project to something that’s significantly larger and can help lots and lots of people through a year is pretty exciting.
Jacob: Yeah. What do you feel like are the most common misconceptions people tend to have about this issue?
Mark: I don’t know if it’s a misconception. I would say, Jacob, it’s a lack of knowledge. It’s a lack of exposure. We were talking the other day about the Mall of America is in our backyard, the largest mall in the country, and I was
talking to a group and I said, how come we never see people in wheelchairs here?
It’s never been supported, they’re starting, but it’s never been supported. It’s been hidden and it’s not been welcomed and that’s one thing that I think is really beautiful about Joy Collaborative. We really, like I said, we embrace, we lean into these folks who may have been marginalized, who may be isolated, who just want to have an awesome life like everybody else and there’s not the resource there to help lift them up and bring them into a place that is more safe, that is more brave, that is more supportive of their specific needs.
Jacob: As a non-profit, tell me about how [00:09:00] funding tends to work for your organization.
Mark: It’s pretty much a three-way split between corporate foundations, grants, and individual donors.
Jacob: Those that do choose to donate, there are plenty of other places for their money to go to do good, why choose Joy Collaborative?
Mark: Rather than guess, what I’ll tell you is what I hear from our supporters and our donors is they see us as a unique organization.
We don’t approach a project as paint and stickers, we are doing deep design work and making transformations of space. And people see that in our portfolio and they see that in our videos where we’re talking to the people that are our beneficiaries. You don’t have to go too far to talk to people to say, yes, I grew up with somebody down the block, or my cousin has this condition.
So that is kind of baked into a lot of the population already. I know what they see is our tireless work and leaning into these difficult problems that a lot of people just would shy away from. Our first Make-A-Wish project was that very example. There were designers who backed off the project because it was such a challenging project.
But that’s what we’re here to [00:10:00] do. That’s what we’re here trained to do. I’m not here to do paint and stickers. I’m here to solve a problem that’s getting in the way of you advancing on a daily basis and that’s what our population is looking for. And that’s what our donors see in us.
Jacob: You’re doing the design, you’re doing the build, is that all like your own staff, or is it all volunteer, contracted out?
Mark: It’s a hybrid. It depends on the client and the project and what the setup is at the beginning of the project. Some of our projects where the program has a very significant low budget, or in the case of families, if they’re underneath federal income guidelines, with our board’s approval we will do that at no cost to that group or individual that we’re serving.
And we do that through the donor support, but then also leaning into the contractor designer manufacturer lens that I talked about at the beginning. If the project is larger in scale or if it’s a fee for service, oftentimes we’ll contract with another organization. We will co-design it together, and that creates a really great experience because we’re bringing our portfolio of experience to them, and they are bringing their expertise in putting drawings together, or maybe they do have [00:11:00] expertise in this space, and we can really elevate the design solution.
Jacob: What are you most looking for right now? As a nonprofit, the fundraising need never goes away, right? Maybe it is beyond just fundraising, but if it is, paint me a picture of what an ideal donor looks like for you.
Mark: I love the word friend-raising and that’s probably overused in this community, but I love the conversations where this isn’t a sales pitch. Where they understand the deep impacts that we’re bringing to people who otherwise may have been ignored. Those are the kind of conversations I like and we decide together what the outcome is. If they want to be really engaged with us we’ll invite them into the design process if they want to be involved or if there’s some people who just believe in us and want to support our mission and say, here’s my gift and thank you for doing what you’re doing. It really depends on their point of view on what they want to achieve with their gift, but I am not one to just say thank you and run out the door with the cash.
We really want to understand what their goals are and why we were even having the conversation in the first place.
Jacob: What are you looking forward to in the future?
Mark: This next year will be [00:12:00] continued growth for us, which is wildly exciting. We’re expanding our team. We’ve got diverse skill sets to focus on shoring up our operations because we’re growing, we need that foundational support.
Obviously the fundraising, as you mentioned. Exploring new product offerings that can actually help us control our revenue stream, so we’re reliant a little bit less on the fundraising side and lean into products or services.
What I’m looking for is just expansion and being able to serve more. Right now we’ve got 7,000 people accessing our spaces in the Twin Cities. If we do our job right, we will easily get to 10,000 by the end of next year, and we are just four years old.
Jacob: Are there any plans or desire to expand that geographical footprint?
Mark: We get requests from all over the country. And for now, we are staying tight to our backyard. There is such a demand in our neighborhood. We can do a lot right now from where we are. The demand is pervasive and all over the country.
For us to do a more broad-based service offering, I think is a couple of years out. I don’t discount it at all, it’s in our 10-year plan. [00:13:00] But in the next immediate year, the next couple years, I really see us really keeping our roots here and really making sure that we just do design excellence. That we do excellent work.
That way we’re building up more experience that then we can move out beyond our footprint.
Jacob: If someone was interested in learning more about this topic about your organization, what resources would you point them to?
Mark: I would direct everyone to our website, joycollaborative.org. My phone number’s on there. My phone line is always open. I love talking to folks about the work that we do or the interest that they might have in supporting us. I’m particularly active myself on LinkedIn and post stories about the amazing volunteers, the projects that we’ve done, or other inspiration, that I find I love to share.
So, certainly, there are multiple ways to connect.
Jacob: Any last words before I let you go?
Mark: Anything you think that we’ve missed that you have a question about?
Jacob: No. I feel like you hit all these things quite well. If there’s a family in Sacramento or Florida they can’t access your physical offerings, but are there things on your site that help those [00:14:00] people too?
Mark: Sure. I would expand on that answer and then just say the Joy Mobile is a mobile unit and the problem that we’re solving for is a global problem. If somebody is interested in either supporting it as a program or getting it to Sacramento, that’s something we need to talk about because this problem is very pervasive. So certainly we can serve in that way. I was thinking more of our physical projects. But also I’ve done consults with folks over the phone. They’re like, hey, we’ve got this space. We’re struggling with this issue. Can you give me some help?
Unless my calendar is overloaded, I will certainly carve out time for folks to give some insight and maybe give some ideas about what has worked for us, or maybe some cautions about, hey, you’re going down this road, maybe you want to think about something else as well.
Not a hard landing critique, but just some guidance maybe, just based on what we’ve seen. I’m happy to provide that.
Jacob: Fantastic. Thank you so much, Mark. Thanks for the good that you do and wish you all the success in the world.
Mark: Thank you for the opportunity, Jacob.
Jacob: Awesome. Thank you.
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