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Tim Fulton 00:00
Tim Fulton, welcome to the confluence cast presented by Columbus underground. We are a weekly Columbus centric podcast focusing on the civics, lifestyle, entertainment and people of our city. I’m your host. Tim Fulton, this week, what does it take to build a more inclusive world, one where individuals with disabilities are supported, not just in care, but in community and experience. In this week’s episode, I sat down with Kristen Butler, founder and CEO of ability matters. It’s an agency that provides personalized services for individuals with disabilities, with a particular emphasis on autism. We discussed how Kristen transitioned from public education to entrepreneurship after parents came to her in search of something better for their children, and how she built a growing organization committed to active inclusion, high quality care and international travel experiences for those it serves, from workforce challenges and the limits of Medicaid waivers to rewarding staff with global adventures, Kristen shares how ability matters is redefining what full supported lives can look like, whether you’re interested in disability services, community inclusion, or building mission driven organizations, Kristen’s story offers insight on how compassion, quality and ambition can come together to change lives. You can get more information on what we discussed today in the show notes for this episode at the confluencecast.com enjoy the interview. Sitting down here with Kristen Butler, the founder and CEO of ability matters. Kristen, how are you great? Thank you. Yeah, I’m well, tell us about ability matters, just to get started, absolutely.
Kristyn Butler 01:56
So ability matters was started to help serve kids with disabilities. We really feel that we’re trailblazers in the field. I’ve personally been in special education for years, my entire career, however, ability matters, was started to truly serve the kids in an inclusion settings.
Tim Fulton 02:19
And these are I am incorrect, I think, in that it only serves the autism community.
Kristyn Butler 02:25
Correct, it’s all individuals with disabilities. We do specialize in working with autism just due to the high number, and also we specialize in working with some of the kids that and adults that may have problems somewhere else being served. So we embrace the challenge where others may shy away.
Tim Fulton 02:44
Is there any sir, and you’re about to see that I’m just totally going off script. Is there? I’m looking a little bit for an analogy on how folks can think about the services that ability matters offers as so a someone who is on the autism spectrum, they are a minor, they are receiving Medicaid. What services do they typically receive? Because you had mentioned where they may not receive, they may not be well served in a traditional setting. So what does that look like?
Kristyn Butler 03:18
Sure, so we have a couple different service options. So one is education. We do contract with school districts. We do provide the autism use the autism scholarship as a funding source. So sometimes students may not fit in a large public school setting. So that’s one of the first options for individuals that are minors. Okay? So we provide education services. The second one is the adult service waiver, which is more of what you’re asking about for the Medicaid waiver. Okay, so those are individuals that might need some support after school. Also adult living and home if they move out of their home, we do housing
Tim Fulton 04:02
Okay, and in the and I’m sorry, back to it just a little bit. How would they you are not there are a lot of other services like yours, yes, and these services do not tend to be directly administered by large institutions or the government. Correct,
Kristyn Butler 04:21
correct. Then there are several in central Ohio, but there’s still extremely long waiting lists to receive services. So we personally have hundreds on our waiting list. Oh,
Tim Fulton 04:33
wow. Okay, okay, part of the reason why you’re here today is talk about beyond ability matters, not a new organization, but sort of your nonprofit arm. What does it offer and do
Kristyn Butler 04:45
so beyond ability matters is helping is the nonprofit that helps support all the inclusion activities. So one of our basic values and mission statements is to be inclusive in the community. D and beyond, ability matters. Help support that, because being included is expensive. If you think about going to the zoo, you know now you have you’re going to the zoo, the staff is going to the zoo. You both need passes and to the point even travel. If a family wants to go to Disney World, now they’re taking a staff member that you know to help support their child. Well, now you’re paying for another ticket. You’re paying for airfare, Disney ticket, hotel room, and those things add up. And then we’ve even taken it the next step, to push the boundaries to travel International. Okay, so we really fundraise to help support really pushing those barriers. One of our goals is to travel to seven continents. Okay? And we’ve, you know, we’ve accomplished Africa and Europe, and just recently, Australia, okay, into South America, and we’re getting ready to go to Japan in March. So, oh, wow. And really, it’s the collaboration of working with the airlines working with the cruise ships. We do a lot of cruises. It’s just the most economical way to go, and it’s really the ripple effect of so other families can also have those experiences. So TSA is used to kids with autism going through, you know, through those security checkpoints and 10 pieces
Tim Fulton 06:21
and having a slightly different experience with that. That audience basically correct step back. Talk about the founding of ability matters. Talk about your background and sort of how it came to be.
Kristyn Butler 06:35
Ability matters started with a group of families that came to me, and they came to me very sad. They came to me crying, I’ll be honest. They came to me saying, We just toured adult services, and we can’t do this. There’s nothing here. We know you’ve been in the public school, we know you’ve been a superintendent, director of special ed, but can you please start your own business? And I had never started. I was always in the public sector, so everything was already mapped out pretty much for you, but talking to the parents, they are the true champions, and they are always behind of whatever we develop, we still go to parents. What do we need? What do we need to do? So I said, okay, and that was 10 years ago, and started providing services. I still joke they tricked me into housing, because I’ve always been in public school. Yes, you know kind of when you’re
Tim Fulton 07:29
done, talk, so you talk, can I think of and we’re talking strictly about the for profit right now. The correct the business, it is activity services. It is housing and it is
Kristyn Butler 07:43
education, education and intervention services. So we also mentioned so intervention services are for the some of our most challenging individuals that we work with, more profound autism. So that word is coming back. It used to be don’t say profound, but now they’re saying bring bringing that word back. So we actually opened an office downtown, just close to where you are here, and for a lot of our staff might live on the east side, and it’s a little closer. But intervention specifically is working with Children’s Services, Children’s Hospital other contracts where some of the kids might need to be going to residential, okay, were that inter hopefully, were can help stabilize that before that would happen?
Tim Fulton 08:29
Should I think of that as intake like, sort of like, Hey, you are in a you are having a problem existing in the environment that you currently exist in. Let’s come up with a plan, whether that be residential or maybe you just need a homemade to come and check on you, or you don’t have dependable transportation to Yes, or your dependable transportation isn’t putting up with you anymore because it is a challenging situation for them. Here’s here are the thing. Here’s how we can surround you with care, or how you can surround yourself with care, and here’s the recommendation, yes, that’s
Kristyn Butler 09:06
absolutely what we do. Okay, cool. Take that in
Tim Fulton 09:10
from also, and this may be a policy question or a business question, I’m actually not sure why the waiting list like, what prevents scaling to because these folks theoretically have funds, or you have they have a way to be guided to have funds. What prevents the scaling of ability matters to get to a point that it can service everybody that needs service,
Kristyn Butler 09:35
and that’s primarily the reason also, I’m glad we’re doing this because the biggest reason we are not able to scale is also because we need staff. Oh, so you need and we’re very picky. We like high quality staff. Yeah, unfortunately, this industry historically hasn’t had a very high bar for staff. And not that that is that there were. Poor workers, or, you know, inexperienced workers. It just wasn’t as active of a job as what we do. So a lot of times it was more aligned with like home health care, making sure you’re okay at home, cooking, cleaning, where we are very active. Part of our pillars are, you know, they’re working out every day. We’re volunteering in the community. We’re doing a social activity. We’re on the go. So if they’re at home, just relaxing a lot, then we’re probably, we personally, are probably not the agency or the service for them, because we like to be very involved in constantly moving
Tim Fulton 10:36
and and this is normally a term of art, how do you refer to the people to whom you are giving care. We the
Kristyn Butler 10:44
funding agency, because they’re not a patient, correct? They like to use the word consumer, okay? I personally like the word individual, individuals that we serve,
Tim Fulton 10:54
but the term of art would be consumer, because they are providing the funds or resources to you to give a service. Got it, and so is it? Is it truly just a staffing thing? Like, you’re not limited by regulation on, like, how big you can be?
Kristyn Butler 11:13
No, no, it is 100 and our quality, I we expand. Like, you know, even just talking financials, a million dollar gross every year. Okay, so that just shows you, we’re growing every single year, and we’re growing fast at a super, super high percentage, but we really want to maintain our quality, and that is the most difficult part. Now, we do have some wonderful relationships and partnerships with Ohio State University, which has really helped us with that. We have internship program every semester for undergraduates. We also fund master level and PhD level students, okay? And that is just been a win win, because there are students that really can’t afford school, but they want to work out, you know, where they want to work in their field. So it’s perfect. Yeah, and a postdoc. We actually have a postdoctoral student scholar this year, so okay, that really helps our quality too, because we have a good training team.
Tim Fulton 12:14
And are they helping with so they’re helping with training. Are they sort of with their expertise and their learning, helping lay out curricula, or like, Hey, here’s what the research or what the what the because, as you said, things are evolving in this space. We are not going to get into policy today, but do do they help influence like, Hey, here’s the best practices that should be administered when you’re doing these outings, or when or within the homes. Like, is that coming up? Absolutely. And how would you compare yourself to other agencies? So you mentioned the quality of staffing, what? And we’re not trying to not say anything pejorative about somebody else. But what do you pride yourself on with the organization? Right?
Kristyn Butler 13:04
Really being active. Okay, I do feel inclusive. We provide all of our services in the community. So not many agencies do that. Historically, they’ve been maybe like they have a day service, or they have an education, and they’ll stay in one place where our day might look as you know, we start at nine o’clock, we go to the gym, we work out. Then maybe they go swimming, they meet their friends for lunch, go to volunteer at the food bank, and then finish up maybe with bowling or something, so you know, throughout the day, or grocery shopping, yeah. So it’s a it’s you’re moving. You’re constantly moving, you know, and, of course, relaxing in the evening. It’s all individualized. So some might relax a little bit more, but some are off doing Special Olympics, or, you know, we have some people that are participating on their varsity sports teams, and it just varies. But we’re we really pride ourselves in keeping moving and staying busy.
Tim Fulton 14:05
Talk to me about because we’re talking about also trying to find folks to fill the staffing pipeline. Talk to me about company culture and like, what somebody may expect when they come to work. For ability matters.
Kristyn Butler 14:18
We really culture is extremely important to us, so we really tried to do have flexible, flexible schedules. We’re the highest paying agency in the state, okay? And we really want to embrace and reward people who work in this field, which I don’t think historically, they have been have have happened in the past. It hasn’t happened. They are working two or three jobs and paid $10 an hour, so we really try to pay more. Reward them, flexible schedules, support, working parents, and then the travel is a big component. Yeah. Really rewarding. Staff, you know, to travel all over the world at no expense. For them, we pay for everything, okay and so, and a lot of times for a small fee, they can bring their plus one. So, yeah, so that’s been that’s been fun.
Tim Fulton 15:14
That’s great, well, and in exchange for that, again, you expect a not even necessarily, higher caliber of employee, but an employee that’s more engaged than they may have been in another home health care situation or something like that, there’s, there’s a high expectation. Yes, got it talk. What are the struggles with sort of the you’ve talked about wanting to get these folks in front of others and like, that’s a part of bringing them out into the community. It’s part of the travel. Even you talked about the TSA agents at large. What do you think is a misperception about folks who are on the spectrum, yeah,
Kristyn Butler 16:05
the individuals who have less obvious disabilities, sometimes people will look and wonder, you know, why is this person staring at me? Or why are they not giving me eye contact? You know, so just sometimes facilitating that communication and interaction. So just, you know, almost coaching along the way, per se and coaching both. And then most times, people that do have strong social skills will pick up on that, yeah, some of the more obvious behaviors, or autistic behaviors that you’ll see, flapping, screaming, rocking a lot of times. So for example, before we start any flight, I will go up to the talk to the flight attendants and even the pilot, and say, okay, just so you know, if someone’s screaming or this person’s banging or hitting, we have it. We have two staff we’ve positioned them appropriately, and it’s okay. We don’t need to descend.
Tim Fulton 17:04
Know how to I literally was on a flight yesterday. I’m like, I would have been freaked out, but like, you know how to de escalate. It is a and that’s part of why your company exists, is to sort of allow for these folks to have experiences that all the rest of us get to have, and that they are not sequestered away. And
Kristyn Butler 17:27
also, we always assign one person that will de escalate the situation and one person that will talk to the people on the plane or the flight attendant. Hey, you don’t want to do both, yeah, and knock on wood. I know we really haven’t had to do that. We had one time someone wanted their water and they couldn’t get up to get their backpack to take their vitamins, and they didn’t like that, and they screamed. But besides that, we’ve been very successful because we do a lot of prep. We do a lot of prep. We do social stories, which are like stories about what’s going to happen. Okay, we always are reminding everyone, first we’re doing this, we’re going on the plane, then it’s this amount of time, then we exit the plane. So we’re constantly coaching and prompting, and that helps too.
Tim Fulton 18:14
I promised we weren’t gonna get into policy, but I’m gonna, are gonna limit it in the financial what the current state of things with both state and federally? Are there risks to these folks have getting the services that they need? I
Kristyn Butler 18:33
think there’s always risk. Okay, I don’t I think there’s a little more publicity to it right now. Last month, I was just a parent, one of the parents of our individual we serve, and myself, we’re in Washington, so we spent two or three days in Washington with our senators and also House representative from our area. We really received some positive feedback this govern. Governor dewine has also been very supportive. He’s increased our rates over the last year or two. With that being said, you just don’t know, right? Also, Bobby Kennedy has been, they have been talking about autism, which no one’s ever talked about autism. You’ve never heard anyone say at that level talking about autism, but typically it is a bipartisan support so the Autism Cares Act just passed recently, in the last couple months, and it was 100% okay voting, which I’m not sure other bills what? Who else can say that that is a lot of you just don’t know. We have to keep our eyes on it. This is the first year that I really I hired lobbyists to make sure that we’re keeping our eye on everything and making sure we’re involved in that process more directly. Okay, so, but I’d have to say this current administration has been pretty open so far, but we’re keeping a close eye
Tim Fulton 19:58
talk about. The you have a fundraiser coming up for beyond ability, back, yes, golf outing, correct? Tell us about that. Yeah, July
Kristyn Butler 20:07
31 and the Dublin golf club, golf club of Dublin, that is just really a way to come out and support, really provide, have a good time, but also be a part of donating to a beyond ability matters. So we can be giving back to the community and giving to the kids we work with and the adults. And
Tim Fulton 20:30
what is the with that organization has been around for a bit? What is the what does the 990 look like at the end of the year for it like? Is it? What’s it pulling in and donations and
Kristyn Butler 20:41
fun. Yeah, we’ve gone anywhere from some personal donors that have gone from 20 to $40,000 you know, individual checks, to but our average is about 20 to 30,000 a year. So we, we, we feel that’s pretty good. This is the first year we’re also going to look to give to others in the community. I reached out to Dublin City Schools. We have a great partnership with them. Also another agency that we work closely with, and, you know, giving grants of 500 and $1,000 to promote inclusion to other agencies. So we’re really excited to do
Tim Fulton 21:17
that. Are you receiving grants as well or pursuing not
Kristyn Butler 21:20
yet, not we’re not opposed to it, right? We have not come to you
Tim Fulton 21:24
and says, fill out this four, right, right? Absolutely. Talk about growth and like, where you where you want to be in another Let’s even say five and and 10. I don’t know if you are thinking about that, I hope
Kristyn Butler 21:40
always, always, every day, every day. So really, to travel, the travel and inclusion we do really want to go to all the continents, right, and that we feel is just a huge accomplishment in terms of service delivery, our goal has always been to try to reach as many families as we can. Yeah, I personally can’t even talk to people that call in or be on intake, because I would take everyone, and then the business would close because we don’t have staff, and I disappoint everyone. It’s really, really hard to have anyone on a waiting list for a service so important. Yeah. So my goal is really and our goal at ability matters, is to reach as many families as we can and maintain our high quality is, is staffing
Tim Fulton 22:24
the only hold back? Yes, truly, truly, you could scale if, how many would you need? Like? How much like? Because you Sorry, I don’t know this. You have a staff to individual ratio that like, yeah, it’s 1.5 staff for every or one to one or right point five. Like, do you know that? Yes.
Kristyn Butler 22:44
So most everyone we work with is one to one, okay, have a handful of individuals that we work with that have two staff, okay, to one individual we serve. And
Tim Fulton 22:53
so those couple 100 people on the waiting list would need a couple 100 more people got it
Kristyn Butler 22:59
correct, and that’s just for eight hours. Yeah? So, if you think about, yeah, so that’s the part, I know. And if you think of a housing so if we took on one person for housing, they would be, say it was seven to three, you know, for 40 hours. So you need two people during the day for a week, and then you need the second seven to, you know, I’m sorry, three to 11, and then you need an overnight person, yeah, two. So you really need 246, to eight, and that’s if they’re full time to maintain. Okay, okay, so staff, staff is important. Really important. Anything
Tim Fulton 23:35
else you would want folks to know about ability matters or beyond ability matters before we
Kristyn Butler 23:40
wrap up. No, I think you’ve covered everything. Okay, great, John, I do
Tim Fulton 23:45
ask the same question of everyone at the end of an interview, what do you think Columbus or Central Ohio is doing well, and what do you think it’s not doing so well?
Kristyn Butler 23:55
Columbus, Ohio, we are really lucky to have, especially Franklin County developmental disabilities, they are very supportive and creative. They’ve had a couple individuals there that have really spearheaded services for people with disability, and I feel also in Cleveland and Cincinnati, so the larger cities have done better, a better job. The people in Columbus are just so warm and they’re so welcoming. I mean, when they say that Midwest, I mean, we are truly Midwest, and we really haven’t encountered someone saying, oh, this person can’t come here because they have a disability, right? You know, I’ve been to other states where we’ve been doing certain things, and that’s not always the case. You know, they’ll be like, No, we don’t want that person or that type of person here. So we really have not experienced that in Columbus. And it’s, it’s absolutely wonderful. It’s absolutely wonderful. What are we not doing so well? What are we not doing? We do. Need to promote the workforce more. And I feel we have Ohio State right here. I mean, there’s 1000s, 40,000 individuals and that age group that I feel we could be collaborating and partnering more. I think COVID set everything back a little bit in terms of collaboration. Even if you’re downtown, there’s just not as much hustle and bustle and people that I would like to see. So more partnerships, more collaboration. You know, people working together absolutely makes everything better.
Tim Fulton 25:32
Kristen, thank you for your time. Okay? Thank you. You announcer, thank you for listening to the confluence cast presented by Columbus underground. Again. You can get more information on what we discussed today in the show notes for this episode at the confluencecast.com Please rate subscribe, share this episode of The confluence cast with your friends, family, contacts, enemies, your favorite caregiver. If you’re interested in sponsoring the confluence cast, get in touch with us. We can be reached by email at info at the confluencecast.com our theme music was composed by Benji Robinson. Our producer is Phil Cogley, I’m your HOST. Tim Fulton, have a great week. You.
