The Voice - AiLA with Leanne and Kyle

Join VAD as we speak with Autism Independent Living Association (AiLA) and learn about their association.  We speak with Leanne and Kyle about their experiences and the work that AiLA does in the community.

Transcript

Teresa Makarewich, VAD Program & Services Manager

Welcome to the voice of Albertan with Disabilities podcast for July 2024. I'm Teresa Makarewich, your host and VADS program and service manager. Thanks for joining us today. Voice of Albertans with disabilities gratefully acknowledges that what we call Alberta is the traditional and ancestral territories and gathering place for diverse indigenous people whose histories, languages and cultures continue to influence our vibrant communities. We make this acknowledgement as an act of reconciliation and gratitude to the many First Nations Metis settlements and the 6th region of the Metis nations of Alberta and Inuit who have lived in and cared for these lands for generations. Hy Hy. 

VAD has been talking with local agencies to learn about the resources that are available to the disability community. And in today's podcast, I'll be talking to Leanne Carr and Kyle Lobb from the Autism Independent Living Association. AiLA’s goal is to build an intentional supportive housing community for artistic adults in Edmonton. Please join VAD in welcoming Leanne and Kyle on the podcast. Together, we hold the power. Morning. Can you please take a moment to introduce yourself, Leanne?

Leanne Carr, AiLA 

Thank you, Teresa. Yeah, we're very excited to be here today. My name is Leanne Carr and I am one of the Co founders and the vice president, Sorry president of autism Independent living association. We actually go by AiLA just to make it easier. For everyone I am involved with AiLA because my son is on the spectrum and I'm trying to build the housing and support model that he needs for his, for his living. So that is why I'm involved with AiLA.

Teresa Makarewich, VAD Program & Services Manager

Perfect. Thank you for that. Kyle, can you tell us about yourself?

Kyle Robb, AiLA

Yes. Hello. So my name is Kyle Lobb. I am a young gentleman of the autism spectrum myself and I joined a lot for two reasons. One is to discover and implement my own dreams of independent living and moving out. As well as to Help the autistic community in Edmonton and help other people with autism recognize their own dreams.

Teresa Makarewich, VAD Program & Services Manager

That's wonderful. I have a few questions about autism Independent living association to gather information for our listeners. Can you tell us what autism Independent Living Association is for those that don't know?

Leanne Carr, AiLA 

Yeah, I can start and then Kyle could chime in if I've if I've missed anything. But so we're in charitable organization based in the Edmonton area. We are an autism led and autism focused organization and we have a long-term goal of building an intentional supportive housing community for adults who typically don't get government . Or persons with developmental disabilities funding .  We're not, you know, saying somebody who does does get PDD funding is not eligible to live in in the development, but that we're kind of reaching that demographic, that typically  Does not get any of those types of supports and fall through the the gaps right. And so as part of our long term goal to build the actual intent like the actual development, we also have several other kind of pillars underneath us with one of them being self-governance. So that is where our  board, like right now, 60, about 65% of our board members are on the spectrum and you know, so they're involved in all aspects of of running the organization, you know, developing the housing, determining who we're going to partner with different things like, That . We also have a Resident Council program where Members are learning skills on how to run a Resident Council, which will be one of the sustainable driving factors in the development when it's when it's actually built. We also offer training opportunities to our members and we also encourage them in whatever You know, independent living skills and not just specific to housing, but anything that they might be interested in, like for example Kyle, that's one of the biggest reasons why he is our Vice president and also attending this webinar Because, you know, he's looking for leadership and public speaking skills. So maybe, Kyle, if you wanted to. Expand on that you could.

Kyle Robb, AiLA

Yeah. Yeah. So, like, I started off just like as a member at large. And then I was put in charge of our health, Wellness and slippery committee. So it was my responsibility to find fun at events and things like that for the group to view. So it's not all just work, work, work. You can actually build the community by doing, you know  Fun things like going, festivals, shows, all sorts of things like that. We've actually delegated that responsibility to another one of our Members. As I'm coming in to step up as a vice president, you know, Leanne, you know, was nice enough to find a lady who's gonna be mentoring me in that role. And kind of explaining to me about what it means, what my responsibilities are, how to ask for help and stuff like that. But I've also LED a couple of well, some of our events to help raise funds, like for example, a silent auction. So going out to organizations and reaching out to them, telling us who we are. And what we're trying to do, can we set up a a booth or something at you Or a Place to help us talk to, you know, parents and especially with parents of special needs children. And that went, you know, really, really well like had evaluated that for for my Toastmasters speech that I had to do. So I do it. I am with Toastmasters as well. Yeah. And again, you know, trying to make a lot of changes in my life like Careers and going back to school and things like that and then still Having my responsibilities with AiLA and making sure everything is run to a tea, and I've also found that it's been a very supportive environment where people actually understand where you're coming from, from what your personal struggles are, and you know what an effort it takes to Overcome them so that you can help other people and their struggles as well.

Teresa Makarewich, VAD Program & Services Manager

That sounds like a great support group too. Awesome.

Can you tell us about the history of the association and how it came to be?

Leanne Carr, AiLA 

Yeah. So my son was diagnosed when he was 13, and I had actually worked in the disability field for altogether  It's been 20  Some years I worked in the disability field. So when he was diagnosed, I already started thinking, you know, what is he going to need when he becomes an adult and stuff like that  Right. And so I started kind of reaching out just to see what kind of supports  Were out there and because he, his IQ was too high  Of course he doesn't qualify for any of the the government funding and and so I started looking at, OK, well, what would be a good housing solution for him when he turns 18.

And through my connections within the autism community, I came across another gentleman on the spectrum who was already working with a group that was going to build some housing. And so I met with him. His name is Michael, and he was actually working with the student staff and faculty at U of A. And he had actually presented them a model of of doing housing supported housing for autistic adults who don't get that funding. And they had said they were going to dedicate 8 units to this project. So the two of us came together and we started talking about how can we make that happen. And so, the organization that was doing this development community test, so they kind of focus on cooperative housing, They encouraged us to start our association. So that's kind of where AiLA came from. And so we incorporated in 2014 So we're excited to celebrate our 10th year this year. We got a big celebration coming up in September.

But yeah, so and then we had that development and we worked with them for, well a couple of years before we became an organization and probably at least a year and a half after. But then unfortunately the community has was not able to proceed with the larger development and the city wouldn't subdivide the land. So we actually lost That development, so that was a bit of That was a huge set back really in reality. So we kind of all went our separate ways. I guess you could say and kind of had kind of dropped it for a while and  Stuff and then in 2017 -  my son, due to an emergency situation, he had to move back home with me again. Right. And it really just kind of brought back into my head that, you know, you know, you can't just ignore, you know, it was easy for me to ignore the problems he was having because he wasn't living at home with me anymore. Right. You know, but once he came back home, it was like, OK, you know what  This is still a problem. This is always going to be a problem. I need to do something about This, so I kind Of reached out to some of our original members and I said, you know, we really need to to get moving with this again. So we got a new board, became a bit more formal because at first it was definitely very much an informal group. And then we started kind of focusing on trying to get the word out to people about who we were and what we were trying to do. But when you're a small organization, it's really, really hard to kind of get traction, right. So we had joined with the City foundation down in Calgary. They had started a provincial housing committee. So we we joined that and started making. Connections throughout the province with different people that were trying to Do  The same type of thing, and we met up with the developer who actually had a model down. In red deer that we just  Loved and he basically built it and he managed it and then he leased it to organizations like ours and like one of his organizations down in Red Deer was Catholic Social services, right. And so  So I approached him and I said, you know, are you interested in working with us here in Edmonton? And to my surprise, he was. And he had a personal, like his son was on the spectrum, right. So. And his son was actually going to U of A. So I think that was part of the reason maybe why he was interested in working with. Yes. So again, we were kind of on step #2 and we were kind of moving forward with him and with him having the developer knowledge, he was meeting with the city and looking at zoning and all of that. So things were moving along really well and stuff like that  But then unfortunately COVID happened. And so that kind of kiboshed  That opportunity, because he had to like, just like with everybody else, we had to kind of shrink and and kind of focus on yourself and your. For for you know, responsibilities and he just couldn't take on the extra challenge of trying to take on breaking into a new market and everything like that, right. So so unfortunately we lost that developments, right. So but instead of letting us drag it, drag us down, we decided to take the first couple of years of COVID could we couldn't really do much else. Right. So we really looked inward and really solidified our process, right. We became much more formal. We developed, you know, policies and procedures and guidelines and you know all these things and organization needs to do right. So that by the time things started opening up again, we were ready to hit the ground. Funding and that's kind of where we are now like we have. I'm not gonna mention any names because nothing's been finalized yet, but we have a couple of different organizations that are interested in working with us to build something. We hope to be able to announce something within the next couple of months of some potential forums that we might be doing around looking at how can we get this going right. And then we're also continuing like again we've we have our health, Wellness and Social club, which is now moved into also our movie club as well, we've got  Fundraising activities like almost monthly. Now we're doing some kind of fundraising activity we just completed. A paint night, which was it was coordinated by an autistic member, and so and the space and everything was donated by the Nina Haggerty. We're doing it. We did a garage sale and we have our final garage sale this coming Saturday. We have our 10th anniversary coming up in September. We just finished the documentary. Which hopefully will be airing in the early spring. But yeah, so we we've had a lot of really exciting things going on, right. So it's really like it's we're taking off. 100%.

Teresa Makarewich, VAD Program & Services Manager

Shoot me some information about your 10th anniversary in September and I'll throw it in our newsletter.

Leanne Carr, AiLA 

Sure. Right now the only thing we have confirmed is the date - September 9th and it will be I don't have the address, but Kalina is So they have a event space and they'll be the ones that will be catering it. But that's really kind of the only details that we have formed up right now.

Teresa Makarewich, VAD Program & Services Manager

So OK, so just to save the date.

Kyle Robb, AiLA

Yeah, and it'll be I'm emceeing that event. So I'm pretty excited about that.

Teresa Makarewich, VAD Program & Services Manager

Nice. That would be wonderful.

Kyle Robb, AiLA

Ill be putting my public speaking and interpersonal skill to good use.

Teresa Makarewich, VAD Program & Services Manager

Which Toastmasters Group are you with?

Kyle Robb, AiLA

I'm currently in the TNT Toast Nest Toastmasters Club. We meet on the South side of town at metal with Mark, and I've been there for four years now. I've completed 2 pathways and I've started a third one on humorous speaking and I got involved with Toastmasters in college. I'm also depending on how my work and school schedule is going to be like in September. Like to get started as an area director because it's it's a goal of mine to become a distinguished toastmaster.

So completing PATH 2, pathways being in Vice vice president position at like at my at club mentoring and then being in area director.

Teresa Makarewich, VAD Program & Services Manager

That's wonderful. I was in toastmasters for a few years. I have my competent toastmaster and then my leadership  Designation as well, so that's right on.

Kyle Robb, AiLA

Yeah. And I find that working with AiLA and Toastmasters can sometimes go hand in hand and they can combine projects that all, so one will help the others with a lot of a lot of fun.

Teresa Makarewich, VAD Program & Services Manager

That’s right on what are some of the challenges to building supportive housing and communities for autistic adults?

Kyle Robb, AiLA

May I answer Leanne?

Leanne Carr, AiLA 

Sure.

Kyle Robb, AiLA

The first one is, you know, individualized because you know, as the old saying goes, if you've met one person with autism, you met one person with autism because they are individual people, you know. Who may not only have, like you know, individual severity on the spectrum, but also individual likes, interests, tastes, things like that. And you know, trying to find like a 1 size fits all  Really doesn't work like you know. You may have one person who is non verbal and another person who may have intense sensory issues, or you may have someone like me who's a little bit more high functioning but needs extra support when he's in a new environment and there's. Doing new experiences. So yeah, in that individualized approach and challenging and like  Getting the right types of specialists, like everything from an occupational therapist or perhaps let's see our recreational therapist or someone who helps people, you know, match their money, go to appointments and, you know, be in new environments as well. So that transition from, you know, maybe a child living at home to a fully functional adult might. Be a little bit More  Perilous than than some.

Leanne Carr, AiLA 

For sure.

Teresa Makarewich, VAD Program & Services Manager

Did you want to add to that?

Leanne Carr, AiLA 

Yeah. And I was, you know, like thinking too in terms of kind of on a like on a broader scale, there's stereotypes a little bit, you know, even within the autism community, you know, working in the disability community, I've worked with, you know, everybody with all ranges of abilities and stuff like that. Right. So lots of experience there, but  As as parents, you kind of only see your child and kind of what your child needs, right? So even within the autism community, there's a bit of a well, we need it more than you need it. You know, without, you know, you would be fine. We're not, different things like. That right, so. It's it's even kind of coming to A to an agreement that everybody on the spectrum. Needs some level of support, right? You know. And just because one person might need 24/7, the other person might only need a couple times a week. Doesn't invalidate how much the support the 24/7 or the the individual, who only needs a little bit of support. They still need it right in order to be successful adults, right. And that's my goal with my. Sons, you know to be a happy, successful adult, right? Not just a functioning or, you know, just living. Right, so you know, so. So that's a bit of it, you know. Then it's also too, I mean funding as well. I mean with with all levels of government, they really just focus on the people who are on the street, right. Not ignoring the fact that really, I mean somebody who's like in their 30s. Living at home, they're technically homeless as well, right? You know, if their parents were to die tomorrow, where they going to go? Right, you know, so you know, just because or like in my son's case, he's living on his own  But I'm providing support on a daily basis multiple times a day sometimes, right. So you know, so that is a big challenge as well, right? And then managing expectations too, you know, like you know the expectations of the adults, the expectations of the parents, the expectations of the service providers, things like that, you know? Yeah. So there's multi levels of of challenges. Right. And it's it's when I started this like 10 - 12 years ago. I never, ever anticipated it would take this long and take this much work to get this done right, you know, but we have such an amazing passionate group. Some that have  Followed us all through these years -under still involved with us, right? Still supporting what we're trying to do because they know that it's desperately needed and we're breaking ground. We're doing something that no other group is doing right now and that's because of the autism led piece of it. Every single person who's involved has a say in what. What we're doing right? So yeah.

Teresa Makarewich, VAD Program & Services Manager

That's great. Please share your thoughts on how autism Independent living association betters the lives of individuals with disabilities.

Kyle Robb, AiLA

Well, I would say first of all that we could create a community for people who are not only likeminded, but also struggle with the same things and you know can come and be like, OK, this person knows what I'm going through because they're going through it as well and I want  Be in this group of, you know, like minded individuals and to help them like  get into the next part of their lives, from people who understand what their issues and problems are. So I think that's a great way that we  Help , so AiLA helps people with autism. They're also teaching like very Like,Lifestyle skills that are transferable. So for example, doing things like having mock meetings about if you're in a condo board and their problems, how I'm gonna go about that, you know how we're going to go about explaining them, You know what the process is, you know, and giving those skills so that it's not like. You're throwing them to the throw to the wolves, so to speak, and being in a situation where when they have like limited social interactions and they don't know, you know, am I saying the right thing? Am I presenting myself in the right way and my taking the other parties point of view as seriously as I need to? Stuff like that.

Teresa Makarewich, VAD Program & Services Manager

Great.

Leanne Carr, AiLA 

Yeah. And I wanted to kind of expand on that too, like we have our Resident Council program and about a year and a half ago, we received funding from the Community Housing Transformation Center, Community community based tenant initiative grant. So with that grant, we developed this Resident Council and the ideas That individuals are on the spectrum as well as their supporters. So they're we started out with seven people and then three parents were involved in and having a facilitator involved in that to to teach them the skills on how to run a council, how to run a meeting, how to make sure everybody gets a chance to talk and, you know, make sure everybody has their say. And and being respectful and things like that. And then also, you know that we go through like. Various little place scenarios. You know, the one that we just did there was if we've got a landlord or a management body that just is not being responsive to the tenant needs on a consistent basis, how are we going to deal with that as a Resident Council, right? So that was one of our role plays. I can't announce who was funded us, but we've just received another Grant to run phase two of that program as well. So and that's bringing in more of a autism focused learning you know where instead of a more tech space which is what we currently have, we're trying to bring in more infographics, more video, more things like that. And the idea is we're creating a video library so that future generations of adults who may live in that development can then ohh, OK, this is ohh. OK, so they had a similar problem in 2025 and this is how they dealt with it. Maybe we can kind of learn from that, right. Because with autism, you know, sometimes Learning in one situation doesn't really translate to learning in a different situation, so that's where this video library and kind of examples of of solutions can be used in the future, right? So so we're really excited to move into phase  Two of that. And the feedback we've got from the participants have been just amazing like you. Know that they've. Felt more comfortable speaking in public. They've felt more confident in managing their time and managing their expectations better. Definitely have increased their problem solving skills and the ability to take other. People's perspectives, things like that. So it's really, really and myself, I'm just seeing the growth in individuals, right? You know how at first people were not speaking up, they weren't really Saying much and now they're active participants in everything that we're doing, right. And I just see that huge difference and it's just amazing. When I when I see the progress everybody's making so. Not to mention the sense of community people are like they have each other's text numbers. They're constantly texting and social media, and this and that. I don't even know what's going on, you know, looks like they're planning all kinds of things. And I'm great. I'm happy. That's what I want. Right. That that sense of community. So yeah.

Teresa Makarewich, VAD Program & Services Manager

Perfect. How does someone get a hold of yourself at autism Independent Living Association?

Leanne Carr, AiLA 

So right now our website is being redeveloped, so that's why you can't see us or Find us through that. So they can either e-mail us at autismindependentliving@gmail.com or they can call us at 780-719-4620 or they can reach out through social media we have  Both Facebook and Instagram, we have a YouTube. But we're not quite there using it actively yet, but yeah, definitely. Facebook and Instagram is an easy way to get a hold of us as well. So there we asked people to join as a member and we have 3 categories. We have an autistic adult, a family or other supporter, and then a professional supporter we limit,So for membership for voting, we asked the professional supporters, we put a cap on 30% because again we want  To make sure it's the the Of adults and family driven focus, right. Yeah. Yeah. So we have a variety of memberships, and then there's no cost to our membership. And then that way you can get on our distribution list and get notified of all of our events.

Teresa Makarewich, VAD Program & Services Manager

That's great. What do you hope to see in the future for AiLA?

Kyle Robb, AiLA

Well, sorry, learn myself again like. You know. OK, having like  Housing situations for people on the spectrum, but also to really expand and diversify or Within all the autism organizations in Edmonton and then maybe  Other organizations that deal with children with special needs have a career path. I'm actually looking at pursuing myself as a you see a special needs child, especially with adult, and to really, I guess yeah, diversify and really, really expand. And you know, As for myself to continue to be the, you know, public space or like a liaison for a lot, for parents who are like, you know, hey, my kids aren't going to be a kid forever. What's gonna happen down the road?

Leanne Carr, AiLA 

So as an organization, we also hope to be able to develop a model that other groups and other, you know, areas of the province or country can take the model and run with that, right. So we're currently looking for funding to run our knowledge transfer portion of the Resident Council. Which would then put together a toolkit that other organizations can do use to do the same thing. And ideally, we'd like to have you know whether it's AiLA that does it or other organizations that do it, maybe other parent groups, right. But ideally we'd like to have more developments using the same model so that people can have the opportunity to live in different places. You know, so if somebody moves into our first development, which will be a rental development and they're living in a one bedroom. Let's say they get married and they want to have some kids and they want to move into a three bedroom. There might be another development that has the same model of sustainability and support that they could then potentially move into, maybe even a Purchase, right. So we want to, you know, our original model is a rental and it's affordable housing, right? For people on AISH. But we also recognize that there's a lot of people on the spectrum that do make a good living and want to be able to purchase something, right. So maybe that's something that can be done down the road. Right. So. Yeah. So kind of creating that sustainable model and you know maybe going to forums and and conferences and and presenting on what it is that we're doing, right, so.

Teresa Makarewich, VAD Program & Services Manager

Cool. Just a side note, I just did a podcast with no limits  Collective. Have you heard of them?

Leanne Carr, AiLA 

No, no.

Teresa Makarewich, VAD Program & Services Manager

They're through Red Plaid developments. It's a city within a city.

It might be something that you guys might want to look into. They're trying to build accessible housing for individuals in, like nanny suites and backyard buildings.

Leanne Carr, AiLA 

OK, what did you say the name? Of it was.

Teresa Makarewich, VAD Program & Services Manager

No limits collective.

Speaker

Who?

Leanne Carr, AiLA 

OK, definitely have to look into that, yeah.

Teresa Makarewich, VAD Program & Services Manager

Yeah, if you read, if you listen to the last podcast that we just did, it's Adam Arseneau. He might be a great contact for you guys.

Leanne Carr, AiLA 

OK, perfect. Yeah, we're always looking for contacts. So yeah, that sounds good. So.

Teresa Makarewich, VAD Program & Services Manager

What is an interesting fact about your organization that everyone should know?

Leanne Carr, AiLA 

Our caramels. Yeah. So yeah, we just started our social enterprise. One of the moms, she her and her son who's also on the spectrum. They like to to bake and cook and everything like that. And so she started kind of looking and experimenting with caramels, so.

Caramel and came up with a recipe that is just it melts in your mouth. It's just to die for it. So good. And so we are now. Right now we're just doing small batch handmade caramels and they're called caramels by AiLA, right- Totally Autismal treats. We're hoping, you know, a development we're hoping eventually to have a commercial. Kitchen, where we can do like shared cooking and maybe a collective kitchen. The thing and in that then we would be able to expand on that and and turn it into a more commercial operation as well. So yeah.

Kyle Robb, AiLA

Yeah. And I also like to cook and bake. I do that with a lot of the children that I work with as a respite work. So I'd be very up for that as well.

Leanne Carr, AiLA 

Yeah. So hopefully eventually we'll go. Yes. Yeah, you did have a chance to try it. Right. Exactly. They are so good. I have a bunch in my freezer right now. And if I'm not careful, I'm going to use up all my money buying them.

Teresa Makarewich, VAD Program & Services Manager

They're pretty good caramels.

Leanne Carr, AiLA 

Yeah, for sure. So they're amazing. So yeah, and right now they're only sold at our events, but hopefully eventually we can offer them an larger scale so.

Teresa Makarewich, VAD Program & Services Manager

Thank you for your time and energy today. Leanne and Kyle, your support of the community is a value to all. Is there anything else you want to say today that I haven't asked you?

Leanne Carr, AiLA 

No, I don't think so. Yeah, for sure. No, we really appreciated this opportunity to to come on here and be able to tell you about our organization.

Teresa Makarewich, VAD Program & Services Manager

Awesome. Anything from you, Kyle?

Kyle Robb, AiLA

Have no im good thanks.

Teresa Makarewich, VAD Program & Services Manager

OK. Well, thank you again for joining Vade podcast, Voice of Albertans Disabilities is a cross disability nonprofit organization. Of and for people with disabilities. We are guided by the principles of accessibility, equity and inclusion. Learn about our services on our website at VAD society.CA or call 780-488-9088 for more. If you have a topic you would like to hear more about in a podcast, please e-mail Teresa at vad@vadsociety.ca with topic ideas, speaker suggestions, or your feedback. Signing off for the day together, we hold the power.