October is Spina Bifida Awareness Month. According to the CDC, spina bifida occurs in one in every 2,875 births. This week on the Disabilities Beat, we feature a local organization supporting people with spina bifida throughout their lifespan - including with resources the healthcare system does not always provide.
WBFO's Emyle Watkins interviews Nick Heilig and Elyse Carlson from Spina Bifida of WNY to discuss their work providing mobility aid grants. This conversation has been edited for length and clarity.
PLAIN LANGUAGE DESCRIPTION: Elyse Carlson and Nick Heilig, board member and president, respectively, of Spina Bifida of Western New York, discuss the organization's mission to empower, advocate for, and provide community to people with spina bifida. The organization, which supports the eight counties in Western New York, serves both children and adults. SBWNY hosts events including a Walk and Roll at Cheektowaga's town park and a meat raffle, which raise funds for programs including their mobility aid grants. The group offers grants for mobility aids, typically up to $500, to help reduce barriers, including insurance limits for equipment.
TRANSCRIPT:
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Hi, I am Emyle Watkins, and this is the WBFO Disabilities Beat.
October is Spina Bifida Awareness Month. This week on the Beat, I'm joined by Nick Heilig and Elyse Carlson from Spina Bifida of Western New York to discuss their work providing mobility aid grants. This conversation has been edited for length and clarity, but you can read more about SBWNY on our website at WBFO.org.
Elyse Carlson: My name is Elyse Carlson. I'm 39 years old. I'm one of the board members of Spina Bifida of Western New York. I've been with the board since its founding.
Nick Heilig: My name is Nick Heilig. I am the president of Spina Bifida of Western New York. I've been with the board for about two years. I'm 43 years old, obviously living with spina bifida.
A little bit about our organization, our mission is to empower people that are affected by spina bifida, just to live full and enriched lives, advocate with them, support them, and just have a strong community around us.
We do promote inclusion and work with both children and adults, families in Western New York that are affected by spina bifida. We are an all-volunteer organization, and we do support the eight counties of Western New York.
Emyle Watkins: As we're talking, I'm remembering that maybe not everyone is familiar with what spina bifida is and how it impacts people's lives. I'm wondering if you would feel comfortable talking a little bit more about what spina bifida is, and what are some of the barriers that people with spina bifida face in society?
Elyse Carlson: Me, personally, I can walk assisted with braces and crutches, and I do use a wheelchair for long distances, and I can transfer. But getting in and out of buildings, whether that's with my crutches or in a wheelchair is difficult. If there's stairs, even one stair can be difficult at times.
Transportation is a challenge. If I didn't have my mom, I probably wouldn't be out as much as I would if I didn't have spina bifida because one of just... where I happen to live and otherwise, I don't have a car. So in that respect, it limits me as well.
Nick Heilig: Just for people who might not know what spina bifida is, it occurs when the spine and the spinal cord don't form properly. Spina bifida in Latin means split spine, so like the nerves and the spinal cord and the spine don't form properly. So it's a type of neural tube defect, a birth defect.
As far as overall limitations, if you want to call it that, I am in a wheelchair full-time. I am able to transfer really well and things like that. Also, I'm lucky that I do have my mom for transportation and things like that because public transportation is difficult, especially in the winters in Western New York, things like that. So from that respect, I am lucky to have her for things and to go out, doctor's appointments and different events and things like that as well.
But a lot of it for me, like day-to-day stuff, yes, you'll have challenges and things like that. But also I'm the type that will look at the positives and things like that, and lucky that I am able to be involved with this organization to be able to do the things that I am able to do. We have our walks, we have the meat raffle.
I am lucky to be able to do the things that I have been able to do, even with those challenges and having 30 surgeries at this point in my life. But you got to make do with what you have and things like that. That's the way that I've always looked at it.
Emyle Watkins: Thank you, and thank you for sharing so much.
I asked that question about barriers because I think that a lot of times people see people with disabilities and they think about what barriers we might have because of our conditions, but I know there's also a lot of barriers that exist because of just the way society is set up.
I know that you both use mobility aids, and I know something that your organization has worked on quite a bit is helping people access more mobility aids because I know insurance can put limits on what people can obtain, or you can only get a wheelchair and you can't also get crutches, different limitations like that.
So I'd love to hear more about the work you've done as far as mobility aid grants and why that's so important, especially to the community of people with spina bifida.
Nick Heilig: It's definitely important, and as we've started to grow, I mean, we're still relatively small and have tried to gain in outreach and things like that. But we do have, like I said, the grants available for individuals to, whether it's mobility aids, any other types of assistive things that they may need, things like that, and just support overall is something that I think is really important.
We might not have the answers to everything either, but we'll also try to find the answers that we don't have and vice versa.
Elyse Carlson: And I got my Free Wheel through this organization, some had been donated. And we're trying to expand that to a broader coalition, a broader group of people, and just letting them know that that is out there. If you have a manual wheelchair, we have this device that can help you get over grass and gravel, and so you can go so many more places.
Emyle Watkins: Could you talk a little bit more about the size of the grants you give out and some of the devices or needs that that has gone towards? Because I know the Free Wheel is something that, from my understanding, insurance doesn't usually cover, but like you mentioned, it really does help people have more access and freedom.
Nick Heilig: As far as the grants, they're generally $500 at this point as we are growing, things like that. But as far as the grants go, crutches, braces, there are limits in terms of insurance and how often they'll cover things. So somebody who needs what they need because they're outgrowing their current situation, that's something that we would always also take a look at in terms of the needs.
Because as far as insurance goes, I think it's every four to five years for certain equipment that you can go for. So especially when somebody's going through a growth spurt or something like that, that might need something quicker, that bit might help them and to advance what they need and things like that.
Elyse Carlson: We have caps on our grants, but I think we would work with the individual to get them what they need.
Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript in plain language description for every episode on our website at wbfo.org. I'm Emyle Watkins. Thanks for listening.
