How do you empower young people with disabilities to take control of their lives? One local rural peer-led agency will soon pilot what they believe could be the answer.
Independent Living of the Genesee Region recently secured a significant grant to create a new Independent Living Youth Project (ILYP). ILYP will provide two youth specialists free of cost to young people under 25 years old and their families. The youth specialists, serving Genesee, Orleans and Wyoming Counties, help young people connect with vital resources, apply to programs, learn life skills and advocate with them to reach their goals.
This week on the WBFO Disabilities Beat, Emyle Watkins is joined by Kahlil Simon, one of those two youth specialists, to learn about the impact of these services, especially in rural communities.
TRANSCRIPT
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Well, Kahlil, thank you so much for joining me on WBFO.
Kahlil Simon: Thank you for having me.
Emyle Watkins: To start, can you talk a little bit about who you are and what you do at Independent Living of the Genesee Region?
Kahlil Simon: My name is Kahlil Simon, and I've been here approximately... well, almost five years now. And I started out at Independent Living as a peer supporter, and I dabbled around the department a little bit, went into different sections of the agency. Right now, I am currently a youth specialist here at Independent Living of the Genesee Region. Part of the things that we do as a youth specialist is we provide assistance with advocacy.
We do a lot of information and referral. We do a lot of help [inaudible]... The information and referral part of it is us helping people out with applications, things of that nature. We also do a lot of transition work. Now, under the Youth Specialist Program, the age range goes from the age of birth until the age of 24, and the idea behind that is is that we want to help our young people transition from youth all the way into adulthood because there are a lot of services that are needed pre and post the school years.
So we try to implement a lot of those for them. We also incorporate families in our service because obviously the parents need help with the children on different levels. The advocacy portion of things comes in a lot when it comes to schools. We'll go in on school meetings with parents who have children with diagnosis or children that are in the special ed programs, and they might just need a little extra help to navigate that communication with the schools.
Now, as far as advocacy goes, that can look a lot of different ways. So the one way that I like to approach it is that I like to say we bridge those communication gaps. So it's not a fight. It's not like we're not going in there to combat with anyone. We're going there to gain a better understanding as to the goals that we want to accomplish for that youth. And that's a little bit about what I'm dedicated to doing here to a little bit about me. Work is work and I love it.
Emyle Watkins: And I know Independent Living of the Genesee Region just received a massive grant that'll allow you and another Independent Living youth specialist to work for two years in the Genesee, Wyoming, and Orleans counties area. Can you talk about why that's important and why that's needed in that area specifically?
Kahlil Simon: I'll get a little personal with this one and why... it's going to tie into why I wanted to do the job. It's that it's community and it's all one giant community. And when we see what's happening with the youth and they are our future, we want to strive to help them. And I think this grant is huge. I think this is what we need. A lot of times, we see parents are struggling. They need mentorship for youths. They need a lot of other services that they may not know how to find out on their own. Navigating the internet, everyone's going to say, "Yeah, you can just put a Google Search in."
But having an actual person there to assist you and go through the process with you, it really does help. And I say to all my parents, "I don't necessarily work for, I work with, and we all work together to make it happen." So that's why I think is the most important part of this thing is that togetherness, that working together for the greater good of our young people because they need it. Those with disabilities, especially. Right now, we live in a world in which people may not understand them, and they themselves are trying to navigate with that as well.
So I mean, this is a huge thing here and we're trying to teach them how to get these different skills, life skills, transitioning into adult skills. For my younger kids, they're awesome because I mean the innocence of youth. It's one of those things that they're not sitting there and necessarily self-identifying. So sometimes we may do a home visit. We kind of teach them a little bit of skills here and there.
They want to push their points across from single-digit years, but they don't necessarily know how to do it so that anger sometimes comes out. So we kind of work with the parents on those things. So yeah, I think that one of the most important things with this grant is it is community-based for our young people. It's providing a service that wasn't there a few years ago or may have been there with other agencies I apologize. It's there with other agencies, but now we're a part of that.
Emyle Watkins: Something that struck me about this program, and as you're talking I hear it too, is the focus on you're working with young people, right, and I think a lot of services we see are focused on working with parents. Why is it so important to center the young people who you are working with and serving?
Kahlil Simon: Well, that part is very important because we're teaching them. When it comes down to it, we've all been to meetings before sometimes when it comes to school meetings and things, and the children are not involved in that. It's just the parents and teachers and faculty, things of that nature, or even with therapists and things of that nature.
It's very important that a child is present on the scene and part of the process because, yes, we're doing it for them, but we want to do it with them because then instead of just kind of giving instructions like, "You do this, and you do that," you're teaching them the whys as to why we are doing this. They're in it with us. They see the struggles. They'll see the successes, and it's their individual success. And that's huge about it.
It goes hand-in-hand with the parents because I do work with them too, but it's a togetherness with it because you want to teach that child how to be successful. You want to teach them. You want to give them the right tools that they need to be successful. And in turn, what you'll see is is that there's a bigger bonding with them and their parents. There's a bigger bonding with them in schools. There's a bigger bonding with them in society because we have to make sure that, when they interject with other members of society that they can, they're able to, they know what they want.
Emyle Watkins: Are there unique challenges or barriers that young people and their families experience, especially in rural areas like the ones you serve?
Kahlil Simon: Yes, there are unique circumstances with that whole thing. I mean, we... there's a lot of provider services that are not available in rural areas or they are available, but they're just harder to access. And that brings me back to the information referral part of what we do with parents and youths. We try to get that information to the parents. We try to get the resources that they need to surround them. So I think in the rural area, that's probably our biggest challenge, I think, is just having as much resources as an urban area has, and I mean and we understand why.
It's tougher to get to. Everything is miles apart, but we're striving to do that. One of the things that we do is like I mentioned earlier, I sometimes do like a home visit because I think that's very essential for parents to have that person come into the atmosphere so we can see it hands-on. So yeah, we're trying to bridge these barriers. But if I had to think of the biggest barrier that we may run into, it is just that just getting a lot of these services implemented, the distance between families and agencies, and things like that to get to.
And just as a major point, I want to say all our partnering agencies and all the agencies in the surrounding areas, they're doing very good job. They're trying their best. Right now, we're in the middle of winter, well, towards the end of winter, but it doesn't seem that way. So I mean obviously there are those challenges too, to provide the optimal service, but we are attempting it and other agencies are attempting it. But if I had to come up with one barrier, yes, that's the unique circumstance that we have in a rural area is the distance to get the services to these youths and their families.
Emyle Watkins: What are some things you've learned about working with young people with disabilities that you think other people who work with young people with disabilities could benefit from? Are there certain ways you've learned to accommodate or provide access to them that you feel like people who work in services that provide support to kids with disabilities could benefit from?
Kahlil Simon: Well, first and foremost, and I'm going to start out by saying be patient. You got to take everything one step at a time. Disabilities are going to vary, and what we do is we try our best to adjust to that person's disability. And when I say adjust to the disability, we want that person to be able to express themselves in the best way possible.
Now, for youth that may be nonverbal, you have the physical communication, the pointing, or it takes a little bit of figuring out, but the patience has to be there in order to assist that youth. And as they grow and you see the growth and the confidence building in that youth, it's amazing. It's amazing because... And I don't want to use it's self-rewarding to me because it's not really about me, but the right word I'm saying is I'm proud of them because I think society tends to leave kids up by the wayside. They'll say, "Oh yeah, [inaudible] in special ed."
But what society doesn't really realize that I'm starting to notice with a lot of our youth is that they become self-aware and they start recognizing certain things, and it's up to us, parents, caregivers, members of society to basically let them. Let them navigate through that life. Let them understand life the way that they want to understand it. We are there to assist, not to dictate.
Emyle Watkins: What kind of culture are you hoping to create for kids with disabilities? Is there any certain ideas you hope they recognize about themselves or a future that you want them to see for themselves?
Kahlil Simon: I want to create within that youth with a disability, I want that feeling of, "This is me. This is what I'm going to do. This is who I am." Goals are tough to accomplish, and with a disability, there is a challenge to accomplish those goals as there is with everyone else, but the challenge is multiplied to a degree, but I want them to know that that doesn't stop them. It doesn't stop you from sitting there and having these goals and wanting to do these things.
It doesn't stop you because I have some of my youths that may not be able to read, but here we are. We're going to sign up to the library anyway because we're going to start this. We're going to do this. I want them to be able to have that confidence to go in anywhere and just be, "I have a goal, and I want to accomplish it." And with the proper tools in place and the proper help in place, that is 100% possible. I'm doing it every day almost. It doesn't struggle some days. I'm not going to sound arrogant about it.
There is a lot of work involved sometimes. Sometimes, you spend times going to three or four different meetings, but I want my youths of today's society to understand that you don't have to be stagnated by a disability or what someone else tells you. My youths that in special ed, I want you guys to graduate. I want you guys to be able to transition into adults. I want to be able to help them do that.
I want them to go through their adult life not feeling that, "We need to take a lesser pay or we need to... we can't get a certain job because all my life I was diagnosed, and this is what it is. And people told me that, 'Yeah, you'll never get that high-paying job.'" I want them to own things. I want them to accomplish what they want to accomplish.
Emyle Watkins: As someone who works in these rural communities, are there certain places where you see certain barriers or attitudes that could improve? Like through this work over the next two years, are you hoping that any services also change and improve for these kids and their families?
Kahlil Simon: Well, I think one of the things in rural areas because... And in fact, as a disclaimer, I grew up in Brooklyn, so I grew up in a huge urban area. So I often find myself comparing it to when I was younger. And in the rural areas, when I talked about resources earlier, there's simple things that I find that, at times, kids in this area get bored. So then it often leads to disciplinary things. It often leads to you're going right instead of left, left instead of right when you should go the opposite way, which is fine.
But in the rural areas, I just feel as though, again, kids need to be surrounded by a little more services, a little more events to keep them active in the community. I feel as though that with being where we live, yes, we understand there's everything. We can say financial reasons. We can say a lot of different reasons as to why it is the way that it's, but I do think that not having certain services in place, mentorship services for youth, after-school programs, we have, but some age ranges don't.
So that's another thing. And we don't have them as in abundance as in the urban areas, so to speak. So then, sometimes, you just kind of find kids trying to find their own thing to do to stay entertained, and it's not always a good decision by... on their part. They're younger and it's what's there for them at that time. So that's one of the barriers I would say with that portion of things and where it leads to a slowdown then if you want, in the behavioral development of youths.
Emyle Watkins: I know you were a peer specialist. I know that Independent Living is primarily peer-led. Why is it so important for these kids to have access to peer-led services?
Kahlil Simon: Before I started working at the agency, to tell you the truth, I didn't really understand what all that would look like, but now I truly get it because kids, especially, they're going to spot something that's not genuine. You have to live what you speak, and by being a peer, I talk a lot about my lived experience, and that's always been huge. And right now, I'm 45, and people say, "Well, how can you connect with youths?
Well, because I go home after work and I play video games for a few hours. Once my wife and my daughter in bed, I'm a child." So I tell everyone, I say... And that's my ongoing joke about it. But honestly, the peer-led system that we have here to me is genuine, and it is as good as gold because we can empathize versus just sympathize in some situations. Not every situation you're going to empathize in. I think empathy comes as it goes based on the situation, but it opens up your heart to understanding that person a little more.
It makes you a better listener because with all the services that I've worked within this agency, and I've worked with the elderly when I was in CDPAS, the Disabled into CDPAS program, different things, once you start listening, you start making genuine connections with people because of you being their peer, because you having a disability of your own, or you just living that life that they've lived, and you hear it, you listen to it, and it helps you.
In your mind's eye, you start thinking, "Well, what would I have wanted for myself if this service was available when I was younger? Or what would I have wanted for myself when I was down in the dumps, so to speak?" So I tell people in the housing program, I mean, I was homeless at one point too so I get it. So, again, I mean, it wasn't a lengthy time of being homeless, but there was about a week in there where I was struggling to find somewhere, couch to couch, and everything else.
So I tell people, I said, "The peer system that we have here by having peers work with our consumers, it is amazing. It is one of the greatest ideas that I've seen because parents and children," and now I'm going to go back to my youth program on this one, and I say, "When I come in, I'm not going to pen and pad you. I'm not going to sit there. If you see me jotting down a note, it's because I got to input certain things into my computer program, but this is not a pen and pad session."
Because what a child does today is going to change tomorrow. It's not going to make a difference. It's going to be like you... there's some days I might walk in and that youth might be happy to see me, and there's other days where he or she may have just gotten home from school, and guess what? They don't want to talk to you. They're like, "Nope, we're not doing this today." And as a peer, you understand that because you can relate to it a little better.
