Episode 17: Journey toward greater independence

1 month ago

Lisa speaks with Amanda Mobley, Executive Director of The Center for Accessible Living about the history, as well as the services offered by the center. Amanda shares how a house fire led to her father becoming disabled and how this experience gave her a greater appreciation and understanding of the disabled community. Inspired by her father and his memory, Amanda shares how the experience led her into a career helping others navigate disability.

Lisa and Amanda discuss how the concept of independent living doesn’t always look the same for everyone, and that we all have to start somewhere on our journey toward greater independence.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.


Kimberly Parsley 00:00 Welcome to Demand and Disrupt: The Disability Podcast. Here we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Avocado Press, based in Louisville, Kentucky.

Lisa McKinley 00:13 Hello! Welcome to the program, I'm Lisa McKinley. What comes to mind when you think of independent living? Or living life in a more accessible way for people with disabilities? Here at Demand and Disrupt, we seek to help the disabled community and the community as a whole by bringing light to these important yet often overlooked topics. Today we're going to talk about independent living in the state of Kentucky and our next guest is here to help us with just that. Help me in welcoming Amanda Mobley. Amanda is the Director of the Center for Accessible Living here in Kentucky. She is a passionate advocate for disability rights and she works hard to ensure that disabled folks across the Commonwealth are able to live independent lives. Thank you, Amanda, for joining us today! Welcome to the program. How are you?

Amanda Mobley 01:14 I'm good, Lisa. Thanks for having me! How are you doing?

Lisa McKinley 01:17 I am great. I'm very excited that you are here today and I am excited that we have a program like the Center for Accessible Living! Tell us a little bit about yourself and how you came to work in the field of disability rights and advocacy.

Amanda Mobley 01:35 Alright. It's really not a fun story, probably, but I am going to tell it to you. Really, I didn't have a lot of experience with working with people with disabilities until about 2012. My dad was involved in a pretty significant accident (he was actually in a fire at home) which he was in the hospital in UK for, I want to say six to eight months. He came home with very limited mobility and dementia that was onset from the trauma that he endured. It's like we went from no disability to that and that was a difficult thing. So, my family and myself were all involved in advocating for him, because he couldn't do that himself. We made sure he had everything he needed – all his supports – in place so that he could live at home, which he did until he passed away in 2018, which I'm very proud of. My mother took care of him, my family took care of him and that was an awesome thing.

In 2015, I was drifting, because I was never really set on one thing. I didn't know what I wanted to do with my career and I was always changing and I saw it. I was looking for a job, because I didn't have one, I had just come back from Utah, I had moved there. I just came back from Utah and there was an advertisement for a Personal Care Attendant Program coordinator in my area. So, I applied and Jan Day and Keith Hosey, two awesome advocates and awesome mentors for me, interviewed me at the Hampton Inn conference room in London, Kentucky. I just fell in love with them and with the CAL and what we do and what we stand for and that’s just how I got started. It was just a fluke and I'm really blessed that I got started in this when I did and how I did and here I am today!

Lisa McKinley 03:45 Wow, that is an incredible story! I love it when people can use events like that in their life and turn it into something positive, especially when it helps the community as a whole. It sounds like you've really done that. Thank you!

Amanda Mobley 04:04 Yes. Yes, of course! And I'm grateful to do what I do and I am grateful for all the people that have taught me to do what I do now, before. It's been an awesome ride so far.

Lisa McKinley 04:16 You were recently appointed Executive Director of the Center for Accessible Living. Can you tell us a little bit more about the Center and what might be some of your goals as Director?

Amanda Mobley 04:30 Yes. The Center started out off the heels of the Civil Rights Movement and people with disabilities were like, “Hey, we deserve equal rights as well!” They did studies in Louisville and they found out that there was a housing crisis for people with disabilities. There wasn't accessible housing for them. So, in the early 80s, that's where CAL came to be. We were pretty much a housing resource for people with disabilities. It just grew from there and now we’re this huge, awesome Center for Independent Living and I'm so grateful for that.

Right now, I want to make sure that we're moving to provide the services that people need and I think those needs for people with disabilities change all the time. So, I have an expansion committee together at work. I've put that together, I have some staff that are on the ground. They're the ones that are in contact with consumers and they are going out and figuring out what is the need, what people need the most, what can we help them with that would allow them to live more independently. And we're trying to find grants and programs and put things in place for those specific needs.

Lisa McKinley 05:51 When I first was exposed to the idea of independent living, I thought that just meant living as a disabled person by yourself and doing everything independently for yourself. I now know that's not exactly true. Can you tell us a little more about independent living and how it's not always living on your own, but maybe more embracing the things you can do?

Amanda Mobley 06:22 Yes. It's funny… Every person's idea of living independently is different from someone else's. It’s never going to be the same, it's not going to be strictly, “Hey, I'm moving out to my own apartment, I'm gonna live by myself.” I think it depends on that person and their situation and how they want to feel independent. So, it's a matter of meeting with consumers and identifying those goals consumers have for themselves. It may be someone may want to just be able to cook a meal for themselves. That's what makes them feel independent. They live at home, they don't really want to move out and out of the place where they couldn't move out or feel comfortable moving out, but they want to be able to cook a meal. We can help them with that. That would be that person's independent living goal. I think being open and understanding of the independence is not a cookie cutter thing. Everybody's is different.

Lisa McKinley 07:16 Do you see once a person gains independence in one area, it kind of motivates them to try new things and to try to branch out and gain even more skills?

Amanda Mobley 07:30 Absolutely! It's a beautiful thing, actually, to see. We see it every day. I get to see it in Louisville. When I worked with PCAP, I worked remotely at my home office and I did see that somewhat. But now I'm in Louisville and I'm really there, I see it all the time and it is an amazing thing to see and it is an amazing thing to witness! I think it's so awesome to see someone come in and they're only goal was to budget better. And then they see they can do that and they're like, “Hey, I think I really could move out on my own now that I've got this budgeting down!” “I've learned how to cook. I think I can live independently on my own! That's what my goal is now.” I think that's so neat to see that happen! And it's really awesome thing to watch.

Lisa McKinley 08:19 I'm sure! It's important to really celebrate those milestones. I remember moving to my first apartment and the dumpster was, I don't know, maybe 1000 feet from the apartment and finding my way with the cane with the big, old garbage bag to the trash can. I was so excited, but I didn't want to share that with anybody, because I thought, “You just took a bag of garbage to the trash can.” But it's those little things I think we need to celebrate and those really help encourage people to move forward and take on other tasks. Thanks for being in that role and encouraging people in that way. Can you give some examples of how you've seen people really grow and start their journey to independence?

Amanda Mobley 09:11 Yes. Like I said, I see it every day at work. It really is a constant thing and I read the reports that all the staff give me and they all have amazing things happening. But specifically, I've seen a consumer specific that, he actually works in the Louisville office and he came there for some work study. He just wanted to work on employment supports and things. Now, he’s looking for his… He's volunteered with us and now he's looking for his first full time job. To me that's just awesome because I saw him when he first came in and he was so nervous, but the sweetest little guy, and then now he's ready to move on and he's ready to do big things! I think that's just great and awesome for us!

Lisa McKinley 10:08 That's amazing! I recently read a story where a young lady she had a learning disability and a reading disability. At 16, she couldn't read or write and it was discovered through the school system. She joined a program similar to CAL, the Center for Accessible Living, and they were able to address those issues and help her and now she has a graduate degree from a university! That is where the Center really is important in joining alongside people and helping in that manner.

Amanda Mobley 10:49 What’s funny, too, is that I started out… I've worked really hard my whole life. At every job I've ever had, I've always worked really hard. I had a good work ethic and I’ve always liked things particular, never realized that I had a disability until 2020. I lived my whole life (I’m 37 now, giving my age on here…) but in 2020, I was very picky, I was moving into new roles at work, I was taking on more tasks. I wanted things done a certain way and it was really getting difficult for me to do that because my schedule was getting fuller and I had more things on my plate. I was like, “This isn't [right]. Something's off and I don't know what it is.” So, I started doing some telehealth and I was diagnosed with obsessive compulsive disorder that they said I probably had my whole life based on how my childhood – my answers and things were – as well as attention deficit. I have ADHD, I think I'm saying that right. I only know about ADHD, so I'm probably saying that incorrectly. But, yes, it's so… Now I look at it and I’m like, “Hey, I lived my whole life and I didn't even know that I had that. Now, I am doing it and I'm doing this great thing that I probably, if I had known, I don't know that I would have ever made it, if I'd had that big plate full before. But here I am!”

Lisa McKinley 12:16 Wow! And people don't really, I don't think they give a lot of credit to disorders like ADHD and learning disabilities and reading disabilities and how much it can set you back if you don't have the proper networks in place to help you along the way. That you were able to recognize and overcome and do what you're doing now? I'm sure you can use that experience to help other people in similar situations. Do you assist anyone with things such as that?

Amanda Mobley 12:54 Yes, I do. When it first happened, I didn't really know what to think because, like I said, I lived my whole life before I even realized it and I just thought I liked things particular. So, now that I realize it, I'm very open to people at work and I’m very like, “Hey, this person…” When someone comes to me, a staff comes with a problem and they're like, “I can't get this consumer to do this,” they very well could have some undiagnosed disorders like that, because I know I'm absolutely connecting with them on this level because that was me! So, I do, I try; I try to meet with the consumers that are dealing with that. I try to mentor them as much as I am able to.

Lisa McKinley 13:41 I think nothing puts a person more at ease than being able to speak with someone who has been there and who has been in their shoes and has overcome. This program has actually helped me in that way: learning about all the things you all are doing and that there are disabled people out there taking control and getting it done and not letting things hold them back. You all are responsible in part for some of that so, thank you!

Amanda Mobley 14:14 Yes. I'm really proud of the work we do and for people like you. Look at you! You're an advocate for us and we love that.

Lisa McKinley 14:23 What types of disabilities do you see quite frequently? I don’t think people are aware of all the different types of disabilities. You just think of maybe blind people or people with mobility issues, but there are so many out there.

Amanda Mobley 14:37 Yes, there are. When I came to Louisville, I saw more because with PCAP, it was mainly quadriplegics that I dealt with mostly on that program because they had mobility issues. We did have some paraplegics but for the majority, it was those consumers with mobility issues. Then, I came to Louisville and it's so much more than that and we are seeing a lot more recently of the mental health disorders and things like that. So, I think that's coming into play a lot more now. That's kind of where we are also, when I tell you that we're looking at other needs in the community. We're seeing that those needs are not really being met the way they should be.

A lot of that's coming in. I think that can be the catalyst for a lot of other things. The housing issues [for instance]. If someone has some mental health needs that aren't being addressed, they're gonna have probably issues in finding housing or maintaining/paying their rent on time. All those things, they're gonna have trouble with that. We’re seeing a lot of that. We do see a lot of mobility issues, especially in Louisville. There is a lot of that, but I think right now, to me, the most pressing and the most common that I'm starting to see, the biggest increase, is the mental health.

Lisa McKinley 16:04 Are you able to help get consumers plugged into resources like therapy and counseling that can help them?

Amanda Mobley 16:12 Yes. Yes! We're working on a lot of partnerships. Currently we refer them out, because we don't [have the expertise]. But with independent living skills, they can still teach people with some mental health issues. They can teach them, “Hey, this is how you can do a budget.” I needed someone to do that with me, actually, and I didn't/they never did, but I would have had a lot better finances if I had. So, we do still help them on that level. But we are working with partnerships throughout the state on being sure that we're there and we're getting them what they need when they need it as quickly as we can possibly get it to them.

Lisa McKinley 16:50 We know there is a mental health crisis here in America. So, the fact that there are organizations ready to walk alongside and offer help and guidance to people struggling with mental disabilities or what have you is something that we shouldn't overlook. It's very important and it’s great that you all are doing that! Do you have any advice for someone who is disabled and they’d like to be more independent? They know they're maybe not as independent as they should be, but there hesitant to leap out and step out in faith and take the first step? What kind of advice would you give them?

Amanda Mobley 17:41 I would say two things. One, I would say contact CAL. This is my plug for accessibility, the Center for Accessible Living. But absolutely contact us because we can help you figure out what that next step is. But also, don't be afraid to make that next small step, because I think it can be [like], “I'm in my house all the time. I'm scared to go outside. I'm afraid I'll fall.” The fall risk. Start going out to the porch. Make those small steps to where [it becomes], “Hey, I'm starting to do things more. I'm starting to be more active. I'm feeling more independent in this.” Make those contacts to people, but definitely if you reach out to us we can we can get you in contact with the right people or we can help you in any way we're able to.

Lisa McKinley 18:24 Now you have offices where at in Kentucky?

Amanda Mobley 18:28 Our main office is in Louisville, Kentucky. We're on the corner of 2 nd [Street] and Mohammed. We have an office in Bowling Green. It's a smaller office, but it's there. It's on Destiny [Lane]. It’s off of Destiny Lane. And we have one in Murray. I think it's on 16th Street, let me make sure. Yes, it's off 16th Street. Those are our three main offices, but we also have remote workers throughout the state and if we aren't, if [your area] isn't in our service area, if there's another place that is in [your] area, you can still reach out to us and we will absolutely get you in contact with the right place.

Lisa McKinley 19:12 Is there anything else that we haven't talked about that you'd like to mention about the Center? Any [additional] goals you all might have?

Amanda Mobley 19:23 Yes. Right now, like I said, we're focusing on the main needs. If you're listening out there and you're like, “Listen, this is a need that we don't have filled here. I'm in rural, far Eastern Kentucky. This is a need we have and it's not being met,” [for example]. You can email me directly. Email me, I'll talk with you, we'll meet up, we'll figure it out and we'll do… I'm doing my very best to get things taken care of like that or at least start them. Obviously, I can't take on everything.

It's funny. We just appointed a new Assistant Director which is Lauren Mountz and we also have the Coordinator of Services which is Erika DeSha in Louisville. Those two are my saving graces! They help me so much I don't think I could get through the day without them, because Danny they're always the remembering a meeting for me or remembering something that I've forgotten or working on something for me that I need. I'm so grateful for those two, but they also keep me in check, because I’ll tell you, if I could take on every single thing in the world, I would do it! That's how passionate I am about independent living! But they are kind of keeping me [like], “Hey, let's work on this thing right now and we’ll work on this bigger thing next.” So, we’re working on it; we’re really working on drawing, I think we went back to basics. We lost quite a few programs, we're starting back at basics and we're trying to grow and really provide those services that people need right now.

Lisa McKinley 20:49 So how do people find out more about the Center for Accessible Living or get in contact with you or your offices?

Amanda Mobley 20:58 They can go to our website, which is www.calky.org and that has all of our services. We are updating that, that's not a very up to date page. We're working on that. In the next month that should be updated. Or they can reach out to our individual offices. For Louisville, Kentucky the number is 502-589-6620. For Murray the phone number is 270-753-7676. For Bowling Green the number is 270-599-0911.

Lisa McKinley 21:39 Thank you! And we will be sure to put those numbers and information in the show notes. Thank you, Amanda. It has been an absolute pleasure speaking with you today and thank you for everything you are doing on behalf of the disabled folks across the Commonwealth!

Amanda Mobley 21:58 Thank you, Lisa. I appreciate all you're doing for us! Let me know if you guys need anything. If anyone needs anything out there in virtual world reach out to me.

Lisa McKinley 22:08 Thank you. And thank you listeners for joining our program today! As always, tune in next time.

Kimberly Parsley 22:19 If you liked the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all! Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Ankin for our theme music. Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities,” in our show notes. Thanks everyone!

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Kimberly Parsley