Episode 16: All Things Independent Living

1 month ago

Kimberly talks to Esther Ratajeski and Grace Jeter from the Statewide Independent Living Council, and Lisa interviews Bobby Begley, a long time supporter of the SILC and participant in the independent living movement in Kentucky.

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 00:04 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 Avvocato press, based in Louisville, Kentucky. Hello, everyone, and welcome to this episode of demand and disrupt a disability podcast and we are going to learn about all things Independent Living canceled today. And what is the Independent Living Council us? Well, you're about to find out. And by the end of this episode, you will know everything you ever wanted to know about it. And joining us first is Esther Ratajkowski. And she is the coordinator for the Statewide Independent Living Council. And it just gets shorthanded for people in the know as the silk SLC. So, Esther Welcome, and thanks for joining us. Esther Ratajeski 00:58 Thank you, Kimberly. It's great to be here. Kimberly Parsley 01:00 So tell me about yourself and how you ended up becoming the coordinator for the CIL Esther Ratajeski 01:06 i The Long story. I came to Kentucky in 1997. As a grad student in geography, totally unrelated, I worked as a geography professor at Morehead State University for four years after my degree was finished. And then I took time off to be a mom. And I was home with my kids for 10 years. And then one of my friends who knew about the opening on the silk and she knew that I was looking to get back into a more professional position, thought that I would be able to do it well and that I should apply. So I said, Okay, why not? And I applied, and I got the job. And I didn't know a lot about independent living. This was in 2020. So it's only been three years. But I knew I had the skills that are needed for the job of working with people writing, reporting, assessment, organizing meetings, all those kinds of things. And I it's been a great job for the past three years, I've learned a lot. Kimberly Parsley 02:10 So tell me what is the Statewide Independent Living Council here in Kentucky. Esther Ratajeski 02:15 It is a cross disability Council of citizens. So that means people with all different kinds of disabilities not just physical or developmental but any kind of disability. The citizens are appointed by the governor. And more than half of them are required to be people with a disability. It is there's one in every state and territory in the United States. There are federally mandated Council funded by the federal government. And the silk has a lot of different duties. But in general provides leadership for Kentucky's Independent Living network, which includes both the council and the Centers for Independent Living. Kimberly Parsley 03:01 So tell me about that. Tell me about the Independent Living network in Kentucky. What that consists of Esther Ratajeski 03:08 it is the Statewide Independent Living Council plus we have centers for independent living that cover about half the state we're really kind of under represented. Some states have their called SILS CISL Center for Independent Living. Some states like Florida, I know they have one in every single county in their state. We don't have that. But we do have Center for Accessible living, which has to locate three locations in the state, Louisville, Bowling Green and Murray and counties near not just one county each but they each each of those covers several counties. And then we have independence place based in Lexington, which also covers a number of counties in central Kentucky. And then Disability Resource Center and hazard which covers several counties in southeastern Kentucky. Kimberly Parsley 04:03 Okay, okay. And so it's federally mandated. So tell me about what that means and why that's important. 04:11 Esther Ratajeski It is set up in the Rehabilitation Act that every state will have an Independent Living Council. What this is for is so that people with disabilities have a say. And they're not just participating in programs run by other people who decide what's best for people with disabilities, but that people with disabilities themselves get to have a say in deciding what programs they need, what programs they want, how to live independently. And so the Independent Living councils are part of that, you know, more than half the people on the council are required to be people with disabilities so they can give people disabilities a voice at the state level. Kimberly Parsley 05:01 And that's, that's very important in the rallying cry in 1990. From when we were trying to get the ADA passed was nothing about us without us. Exactly. Very important. Well, thanks. Thanks, Esther. Thanks so much for being with us and talking to us today. I appreciate your help. Yeah, sure. And now we have with us to learn more about the silk. We have the current chairperson of the Kentucky Statewide Independent Living Council. Grace Jeter. Grace. Thanks for being with us. Grace Jetter 05:33 Thank you so much for inviting me, Kimberly, I'm happy to be here. Kimberly Parsley 05:37 Well, so tell us about yourself, Grace. Well, I Grace Jetter 05:40 have been involved with the disability community since the young age when my younger sister was born with Down syndrome. And since then, I have gotten involved with a variety of volunteer and professional experiences, that we're all somehow related to serving underserved population, mostly relating to disability. I and I currently work at an elder law firm, it's bluegrass elder law in Lexington, and the vision and mission of that often involves serving the disabled and aging communities. So it kind of walks hand in hand with the silk in that way. And last month in April 2023, I was elected Chair of the Kentucky State red Independent Living Council. Kimberly Parsley 06:23 Oh, great. Great. How long had you had you served on the council before? Is that when you began? Grace Jetter 06:29 I believe I was appointed in November of 2019. Kimberly Parsley 06:33 Okay, okay. Well, congratulations. Thank you. So tell me about the history of the silk as an organization here in Kentucky. Absolutely. Grace Jetter 06:43 So it's extra covered a little bit. It is a federally mandated nonprofit organization. And it was established under the authority of the Rehabilitation Act in 1973. And council members are appointed by the governor. And the silk is has the purpose to develop the state plan for Independent Living support, others Centers for Independent Living, monitor and evaluate the state plan and just provide support and direction to this build as Kimberly Parsley 07:14 needed. Okay, great. And tell me how members are chosen to be on the silk. 07:21 Grace Jetter Absolutely. So anyone interested in serving is supposed to reach out to the coordinator of the silk or the currently serving Chair of the nominating committee. And the nominating committee consists of a portion of the council usually about four members, because there are 16 members overall. And the committee collects application materials from anybody who's interested, and recommends, who to appoint to one of to the full council at one of the quarterly meeting. And then at that point, once the council votes on who they would like to appoint, we've done that recommendation to the Governor's Office of boards and commissions, and they make it official, of course, with the way state government works, that is a simplification of how it gets done. There are several layers, but that's the gist of it, Kimberly Parsley 08:07 or does it take a while once someone fills in their app fills out their application, Grace Jetter 08:12 it depends when they fill it out. Because typically, the nominating committee will meet a few weeks before the regularly scheduled quarterly meeting. And then the quarterly meeting will have to come and it will be voted on. And then once it submitted to the governor's office that can take a few more months. So it really depends where in the year they submit it. But also I want to know that people are able to serve on the subcommittee's without being officially appointed by the governor. So anybody who's interested, is welcome to serve on our different committees. We welcome anybody's expertise in interest Kimberly Parsley 08:48 in that. And what kind of committees are there? Well, currently, Grace Jetter 08:51 we have the nominating committee, as I just mentioned, we had the public awareness committee, and then a committee for the state plan on Independent Living. And so that was kind of self explanatory, but they, you know, create the state plan and discuss the changes and discuss what the goals should be for the independent living network in Kentucky. And then lastly, we have the Finance Committee as well. And so they kind of manage the budget and take a look at where the money is going and make recommendations in that area Kimberly Parsley 09:24 as well. And that would be money that comes from money that comes from Grace Jetter 09:29 federal grants and other grants come through as well, on a case by case basis. Kimberly Parsley 09:35 Is that money that comes in from the federal grant, is that one big, you know, pile that comes in or is it come from several different sections of the federal budget? Grace Jetter 09:44 I'm not sure from what section that the federal budget come. It does come in a few different designations and I think Esther would probably be best to clarify that but there are some in different sects, portions of the money is designated for different imperfect Kimberly Parsley 10:00 from the federal government. And why is such an organization important to the well being of Kentuckians with Grace Jetter 10:07 disabilities? Absolutely. So the purpose of the silk is to promote, basically a philosophy of independent living for Kentuckians and maximize the integration and inclusions of all individuals with all sorts of disabilities into the mainstream of society. And of course, as Esther talks about earlier, at least 51% of our members have a disability. So it's really important that we incorporate opinions of people with disabilities to make sure we're really doing what's best and independent living itself is really important to the well being of disabled Kentuckians because it basically is a movement of people with disabilities who work for self determination, equal opportunities and self respect. And it doesn't necessarily mean doing everything by yourself and not needing anybody to help. But just to maximize the integration into society and live a full life and reach their full potential. Kimberly Parsley 11:06 Thank you. That's so important. It really is. And what are the priorities that the silk is working toward right now? Grace Jetter 11:12 Currently, in February 2023, we actually got approved by the IRS as a nonprofit organization, or a 501 C three. So right now, we are just working on that transition to fully establish ourselves in that way, and just put new policies and procedures in place so we can increase our effectiveness and supporting the assaults across Kentucky. Kimberly Parsley 11:33 Okay, what issues do you look forward to taking on in the future. Grace Jetter 11:37 And I can kind of point to our current state plan for Independent Living themself as well as representatives from all of the Centers for Independent Living across Kentucky have agree on these goals. And the first one is to engage local and state policymakers with the needs of Kentuckians with disabilities, particularly regarding housing, transportation and disaster response. The second one is to basically spread the word and make the make sure people know who we are, and just what independent living services are available to them. For him to do this through presentations, attendance at community event, we plan to create and launch a website and also kind of increase our collaboration with other disability related organization. Our third goal, we want to create an emergency response plan, especially after COVID and some other weather emergencies that we've been experiencing. And we just want to grow in our ability to prepare Kentuckians with disabilities for these types of disasters. And mostly to have a coordinated response in place because we kind of we realized that we didn't have a adequate response when all of these things were happening one after another. And then we're also continuing to establish the nonprofit of the silk and increase our capacity to carry out our duties. And of course, that goal that's always been there is to continue to provide our five core services, our information and referral, independent living skills training, peer counseling, individual and systems advocacy and transition. Excellent. Lisa McKinley 13:16 I'm Lisa McKinley. Today I have the pleasure of speaking with Bobby Begley. Bobby is a longtime council member of the Kentucky Statewide Independent Living Council. Hello, Bobby, how are you? Bobby Begley 13:31 Good. How are you doing? Lisa McKinley 13:33 I'm doing very well. Why don't we start by you telling us a little bit about yourself? Bobby Begley 13:41 Well, I'm 72 years old. I'm a former underground coal miner for 15 years. And then I have a stone in doubter. And four grandchildren and my bed and I started losing it went to cow retina, pigmentosa RP for sure. And actually, in January, February of 85, I was diagnosed with that Laos. And I was told I would eventually go blind, but it wouldn't be at my age, it probably go slow and it was Tom would be so went to Hazard Community College, Nanny one and nanny three. Our continued non traditional student at my age and from nanny three to 2000. I won't move it they earned a bachelor's degree and K to 12 LBD or two is learning and behavior disordered with Mannering that was just released. And then there were applications out in summer of 98. And then in the fall 98, I went back and got my master's in secondary education, gardens and camp. Lisa McKinley 15:23 That is quite an accomplishment after receiving a diagnosis such as retinitis pigmentosa. Now you are a council member of the Kentucky Statewide Independent Living Council. Tell me a little more about that. Bobby Begley 15:41 Well, we are boarded under the da de la Department of Aging and independent living before that about four some years ago, we were under OVR wanted outfit for rehab a vocational rehab Department for the Blind at the start what we do we have three standards and Kentucky that we collaborate with wanted and I like dunk all the happy place here owners and local cow cow dinner for a stash co living and we have one and hazard disability ratio center and their main offices and not for Tennessee we come up with date Independent Living plan, ideal for Independent Living and getting information out for people who wish to get information from the centers or it's basically a referral place where people can call dad up upon my time meet with these centers go to get information about independently and Lisa McKinley 17:31 so you get people connected with resources across the state for Independent Living. Bobby Begley 17:40 Yeah, we getting information and we are reviewing 30 what other states are doing with thirstiness got we got to go by the state and federal regulation well we can do and can we get them the information for the people who want it but we don't. And money after we got a budget that we have to go back and did a plan we're switching over to 5013 C where we can start in October and daycare or we can set up fundraisers and things like that create another way of that we can people can add this to the you know the web that and so on. Of the problems that we were we tried to hide that information through them and if we made any made any individual depending on the location of where they live in a stadium in Turkey, give them their information. What dinner and other available resources are close to the area so they can get in contact with. Lisa McKinley 19:33 Now, Bobby, I know that lots of different things come to mind when people hear independent living for some that means to live completely on your own. For others that means you know less help from from outside sources. What does Independent Living mean to you Bobby Begley 19:57 have freedom to move around him? apply for one day. That is, I mean, there's limitation to what you can do for us, Dale. Lisa McKinley 20:14 Great advice. That was Bobby Begley with the Statewide Independent Living Council. Thank you, Bobby. And thank you listeners. Until next time, I'm Lisa McKinley. Kimberly Parsley 20:26 If you like 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, it makes a huge difference for us. If you'd like a transcript, please send us an email to demand and [email protected] and put transcript in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Duncan for our theme music demand and disrupt is a publication of the Advocaat opress 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