Steve Moore talks with Kimberly about the challenges of finding quality personal care attendants and offers tips to anyone in need of personal attendant care. And Lisa and Kimberly talk about Medicare scams, accessible Halloween costumes, and disability friendly underwear. Oh yes, they really do.

Below are links to the items mentioned in the podcast:

Federal Trade Commission Fraud Reporting

New Adaptive Costumes for Halloween

Victoria's Secret & Co. Takes Strides to Support Women with Disabilities

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.

Transcript

Kimberly Parsley 00:03 Welcome to the 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. I'm Kimberly Parsley, and I'm here with my co-host, Lisa McKinley. Hey, Lisa, how you doing? Lisa McKinley 00:23 Hey, good, how are you? Kimberly Parsley 00:25 I'm doing very well. So tell me, Lisa, tell me if this has ever happened to you. You go, you're going to sit down to do something very important. Let's say you're going into the meeting, or you're going into church or I don't know, maybe you sit down to record a podcast, and your phone rings. And what is it? But a scam phone call? Does that ever happen to you? Lisa McKinley 00:50 All the time, all the time. Kimberly Parsley 00:53 And lately, those scam phone calls, though they've been more than petty annoyances, haven't they? Lisa McKinley 01:00 They really have. And so we're coming to you today with a warning. Scammers are really targeting persons enrolled in Medicare and Medicaid. So we've got a lot of Medicare and Medicaid phone call scams going on right now. And one reason being is open enrollment for Medicare. And so what scammers are doing, they are calling folks. And oftentimes it will start with a robo call, where you're getting an automated call, telling you to press one for more information, or press two to be removed from the call list. So what happens, you press one for more information and you get connected to a live operator. And this is where the scam comes in. They will try to get sensitive information like your bank account number and your credit card number. Medicare will never ask you these things over the phone. You may get a call text or email from your from your state agency telling you it's time to enroll. But they won't ask for credit card numbers or bank information. So that's the number one red flag. And if that happens, you need to hang up immediately. And you can report the scam to the FTC. Some of the red flags to look out for are asking you for money, asking you for your credit card your bank accounts, threatening you saying if you don't act within a certain timeframe, you're going to lose all your benefits. It's really it's really scary. I don't know if you've received any of these calls. Have you Kimberly? Kimberly Parsley 03:00 I have Yeah. And it is scary for those of us, especially for whom our healthcare is so important. You know, even if we know better, we know this is probably a scam. But my gosh, we're all so afraid of losing our health care that we're like, well, maybe I'll risk it. I don't know. Lisa McKinley 03:24 It's really - it's not even just phone calls. There's a lot of mail scams even going on with Medicare. We just received a letter in the mail saying my mother's benefits were going to be decreased, like by two thirds. And it's like there's no reason for this. And of course, they give a fake number but you know, it looks legit. So anytime you are in doubt, contact your, you know, your state agency, contact your local office, take the letter in or tell them about the phone call you received and make sure things are really legitimate before you act upon any kind of letter or call you receive. Kimberly Parsley 04:12 Well, that's good advice. And number one always, never give out personal information over the phone. Never give out your bank account information over the phone. Is that right? Lisa McKinley 04:21 Never Never, never never. FTC says if you are asked either your bank account information or credit card and information, that it is a scam and to hang up immediately and to report the call. Kimberly Parsley 04:40 And how do they do that? How do people report? Lisa McKinley 04:42 You can simply go to report fraud.ftc.gov And there will be a place there where you can fill out the details of the call and the fraud. Kimberly Parsley 04:55 Excellent, excellent. That's very important. That's a step I don't think I mean that's a step I've never taken. I bet a lot of us haven’t, you know, so great information. Lisa, thank you so much for that. Um, something since we're talking about scary things, it is October, which means Halloween is nearly upon us. And one of the things I have been looking into is Halloween costumes for the disabled. And I looked up a wheelchair like additions to costumes for wheelchair users in particular, like for your little one. Apparently one of the most common costumes is Batman. And for wheelchair users, there's like a Batmobile you know, edition that you can buy so that the wheelchair is covered in like a Batmobile costume? Isn't that cute? Lisa McKinley 05:51 Oh, that is cute. Kimberly Parsley 05:53 I thought that would be great. The princess thing you could be Cinderella in the, you know, the awesome Cinderella carriage. There were all kinds of these and they are sold at Amazon. Disney makes a bunch of them. And I'll have a link to some of those in the show notes. For anyone who's interested, I think there may still be time to get the costumes. And, you know, I was thinking about this when I saw it. And I thought, you know, I wonder if this is the kind of thing where like people who use wheelchairs, maybe they've known this, maybe this has been around for years and years. And I'm just now figuring it out that way. And I think it's cool. And so I wasn't even sure if I was going to talk about this topic today. But then I thought, you know, our roots in this podcast are as an offshoot of the original Disability Rag. And one of the things the Rag did was to educate people with disabilities, educate them about people with other disabilities. So, I mean, I think I would like to continue that. What do you think? Lisa McKinley 07:14 I mean, I think you're right, I think it's really important. We don't always know, crossed disabilities, you have your certain disability, that's familiar to you. I mean, for us, it's, it's blindness and but you're not always aware of the struggles or, or the things other people might be going through or the equipment that's available to them. And I think it's important to educate ourselves and, and to be open to, to hearing about other disabilities and what might be available. And not to get offended. You know, it's, it's easy. When you've been, I don't know about you, but it's really easy. I think when you've been walking in a certain disability for so long, to kind of expect that everybody knows exactly what you deal with on a daily basis. And to get offended. I sometimes get caught up in that. I don't know if you do but I think, you know, by talking about other disabilities, it might help. Kimberly Parsley 08:31 Yeah, I think so. I think so. And you know, also that, unfortunately, just because you have one disability does not, does not make you immune from getting another one. As I know, all too well, you know, so. So I just think we can't ever stop educating ourselves. And then sharing information because, you know, sharing, let's share stuff with each other, you know, let's share information. And since we're sharing, so I gotta tell you, there's something else because I went down an internet rabbit hole, like you do, and also found out this great thing, sort of dealing with costumes, sort of not, but Victoria's Secret is now making, they have a line of clothing for people with disabilities. A line of bras and panties. Isn't that exciting? Lisa McKinley 09:28 That really is, but tell me about them. Like how does that work? Kimberly Parsley 09:32 Well, the thing that I found exciting was that they have magnetic closures. So you know, there's like the, you know, the hooks for brawls and things that you can't do one handed, you know, you just can't. Magnetic closure, that seems more doable, you know, so Lisa McKinley 09:54 I mean that can like revolutionize certain people's lives. I mean really like I mean, even for us that are getting a little older, I mean, I've pulled a muscle just trying to reach back there and clasp the little hooks. So you know, and I'm not the only one. I've heard lots of women, apparently you get 40. And things just aren't as flexible anymore. So there you go their uses and purposes. Kimberly Parsley 10:24 No, no, right. None of us are getting younger. So I'm very excited about this. I wanted to share that information with everyone. Do with it what you will, that's what I say do with it what you will. Lisa McKinley 10:37 So who are we interviewing today, Kimberly? Kimberly Parsley 10:40 Well, today, I had the pleasure of interviewing Steve Moore. Steve does our transcriptions for us. He's so kind to do those for us. Steve is a wheelchair user. And he's also going to talk to us about the Personal Care Attendant Program. And the changes that that program has seen over the last year, the pros, the cons, and just tell us some about that. So a really, really positive really wonderful person. So I was thrilled to get to talk to Steve. Lisa McKinley 11:10 Oh, how exciting that we get to hear from Steve and he gets to transcribe us talking about bras and panties. Kimberly Parsley 11:18 I know. Oh, you're right. While I should, I should maybe apologize to him in advance. So is it really an apology if he has to type it up, though? Seems unfair, anyway. And now for my interview with Steve Moore. Hello, so today we are joined by Steve Moore. He does our transcriptions for us. So thank you for that. And welcome, Steve. Steve Moore 11:47 Hello, Miss Kimberly, it's great to be here. Great to see you. Kimberly Parsley 11:51 So tell me a little about yourself. Steve Moore 11:54 Well, I'm a quadriplegic from a motor vehicle accident, been doing this for a while. It happened back in

1. I quickly realized after rehab and, and getting physically as far as I could, that I wasn't gonna be able to do the same old hands-on manual types of labor that I used to do so. And I wanted to do something with my life still. So went back to school, and I got my bachelor's degree in business, finance major, and worked for Chase Bank for 13 years full time till I got that to where I couldn't work anymore because of pressure issues and ulcer issues so I had to retire. But I've tried to stay occupied and stay healthy. And that's the biggest job I have now. Just turned 60 Thursday of last week. Kimberly Parsley 12:58 Oh, happy birthday. Steve Moore 12:59 Oh, yeah. Thank you for the condolences. I appreciate that. That's about that's about the gist of it. Kimberly Parsley 13:08 Well, you know, they say the thing about humans is that we're adaptable, right. And so it sounds like you adapted and went on to, to do things. So that's a, that's great that you were able to do that. Steve Moore 13:22 I was fortunate to realize, early on that life goes on. And if I didn't do something with myself, I was never going to be happy. So I just, I just pulled up my big girl panties. Kimberly Parsley 13:39 There you go. So tell me about your experience with personal care attendants. Because I assume that's a big part of your life. Steve Moore 13:46 Yes, it is, you know, being a quad, you know. Of course, you know, quads vary. All of our disabilities vary so wildly. Totally dependent on all of my ADLs (activities of daily living). So it's vital for my well- being and function. And early on, of course me so long ago and of course being a new challenge. It was really difficult. Resources weren't available then that are now, not that it's a piece of cake now, but nothing used to be available. You know, and I ended up going to, whenever I started in the school, you know, I had was living back with my parents here in Louisville. And it was really so difficult to not only to get care but to get transportation to and from school. So I had found out about a Voc Rehab Center down in Eastern Kentucky, southeastern Kentucky, Paintsville, the Carl D Perkins Center. So I went and toured that and decided to stay there and I was the first person there that that they started the program of taking out taking students to, or transporting students back and forth to and from Prestonsburg to the community college for classes. And so I lived there, I lived there for about three and a half years on the medical unit and got all of my physical and occupational therapy, and earned all of my credits that I could that would transfer back to Louisville. And, and then, at the time that I got all that done and had to move back to Louisville, I had been on the Personal Care Attendant Program waiting list for a while. I don't recall the length of time, but it came open for me soon after I got back to Louisville, moved back to Louisville, and I was able to utilize that to start getting care. And before that, because I was in college, voc rehab helped me cover home health. So they worked out that way. And especially with the personal care attendant program, I was able to hire and schedule my help my caregivers, and keep a good class attendance and so on so forth and finished college and then set out on my job search. Kimberly Parsley 16:28 Now, recently, there have been some changes to the personal care attendant program, can you can you tell us a little about that? Steve Moore 16:35 Yeah, I can probably give an overview, the program itself was had always been coordinated and administrated by the Center for Accessible Living offices. I don't know exactly get all the nuts and bolts work exactly, but, you know, someone at each of the offices had their areas and their scope of responsibility, you know, for administering the program. And then, you know, bi weekly, like consumers will turn in their paperwork for their caregivers, and then those offices process it with the basically, finance in Frankfort, you know, what, to, what to pay who, and those funds, you know, would come to the care to the consumer, and then go, you know, from the consumer to the, to the caregivers. The state decided that if they could take it in house with the Department of Aging and Independent Living in Frankfort and do it from there, centralize it, that they could save a lot of money doing it and thereby provide consumers with more funding to hire caregivers. So that's what they did and they had to transition over at what at the beginning of the year, or the end of the year, 2022. And for me it's been fairly smooth. I haven't really had any trouble Yeah, so that's been a relief because you know, you always have those worries anytime there are changes and it's so vital. The assistance that provides us is so vital to most everyone as far as retaining assistance so that's been a blessing. Kimberly Parsley 18:42 So what have you heard from other people? Has the transition been as smooth for others as well? Steve Moore 18:49 I really don't know I haven't. I don't know anybody else personally who benefits from the program so I really can't comment. Kimberly Parsley 19:00 But when those big changes come and you know they're coming up at It is terrifying, isn't it? Steve Moore 19:04 Oh, it can be it can be because especially you know when you've experienced dead spots before you know, Oh, no. What am I gonna do now? Yeah, I was really fortunate. As I went through the process after moving back home, I had super supportive parents and family and thankfully I didn't have difficulties but for the most part, things fell into place. Pretty good and I was I was an oddball. I wasn't I wasn't, I was a statistical, what do they call it a statistical - Kimberly Parsley 19:42 Anomaly Kimberly Parsley 19:49 So many of us are statistical anomalies Steve Moore 19:53 Really are if we think about it. Kimberly Parsley 19:56 So what kind of changes would you like to see going forward for a personal care attendant program? Steve Moore 20:03 Oh, I'd love to see it expanded to become available for more disability, disabled Kentuckians, the need is so great. It's not like I said, you know that things have changed a lot over the past 39 years to what they were. But, and there are comparatively a lot of other resources available and helpful, that is still not enough, there are just so many people who are affected with their well being and independence and so forth. And to provide, you know, even a little more funding so that we could actually attract and retain assistance more easily. It's really difficult when you lose a good attendant. Because it's usually a process of hiring, and trying different people over time to find someone that's this really good again. And so you know, that's the thing. That's one of the, that's one of the things that might would help, you know, if you were able to pay to attract more qualified or more motivated, folks, Kimberly Parsley 21:19 So you interact with these people constantly, right? I mean, the quality of your life is in, in a lot of ways dependent on the quality of your personal care attendant, would you say that's correct? Steve Moore 21:34 That's absolutely right. You know, you can't leave the, whenever you have anybody that's not thorough or not reliable or not sufficient in their, in their care. Then you know, that that really takes away from your, from your attitude, from your, your personal sense of well being and your worries, lows and so forth, to have caregivers who are who are responsible and know their jobs and are motivated. It's just, it's makes life so much easier compared to the alternative. Or even you know, compared to an institution or a nursing home one time I had about a 30 day stay to recover from surgery, I swore then that I'd never go back to one. I don't know that I won't never know about your future, likely. But to be able to have your own care at home, to be able to decide it yourself, to direct it yourself. And to hire your own people, or replace your own people, et cetera. There's just no, there's just no comparison. There's nothing like it. Kimberly Parsley 22:49 We all want that choice, don't we? Steve Moore 22:53 We really do. It’s incredible, the difference it makes in your life. Kimberly Parsley 22:59 Yeah, same, same here. Same here having, having choices is well, it's critical to your well being You're right about that. So it let's say it, there's someone listening, and they are at that point or on the cusp of needing personal care attendants. What do you advise? What do they need to do? Steve Moore 23:18 Well, don't give up as for sure. Try to think of all the resources possible, you know, be in contact with your local Center for Independent Living or the Department for the Aging and Independent Living, talk to other people too, especially if you know anybody that is in, you know, the same boat or has had the same experience for ideas, you know, do brainstorming with other people, you know, look online. There's a one website that I'm that I'm aware of is called care.com. And you can advertise there for help, you know, you can even get on get on PCAP list as quickly as possible. If you're already on that list, you know, you can use those funds to pay somebody you know that you hired to care.com or you know, general health one at as long as that waiting are difficult but expensive, but I don't even know what the Run Now fortunately, I haven't had to look for anyone for quite a while. Kimberly Parsley 24:20 How long is the waiting list right now? Do you know, you know that? Steve Moore 24:22 No. I'm not familiar. I know. It's too long. Yeah. Yeah. You know, the brainstorming with others, you know, I think is an excellent idea of coming up with solutions with alternatives. Kimberly Parsley 24:37 It's just simply nothing that compares to having someone who's well compensated to help you out for those kinds of things, though, is there? Steve Moore 24:48 You know, you don't want somebody to be just totally motivated by money. But, you know, it does help with the recruitment and retention of some, you know, a lot of us, you know, we don't need somebody around the clock or for multiple hours stretches, you know, like, like half a day or six or eight hours a day. You know, so sometimes it's really difficult to get somebody that can just come for two or three hours, you know, for your, for your morning cares or your night cares, etc. So, you know, being able to pay you more is more attractive to for somebody that, you know, looks at the hours and says, Oh, gosh, I need to earn more than that, you know? Kimberly Parsley 25:40 Well, what else? What else have I missed that you think's important for our listeners to know? Steve Moore 25:45 Just know that your efforts will pay off. Sometimes you, you know, may have to do repeated hirings. And, you know, that involves interviewing folks, talking to folks on the phone, and, you know, screening. Another good idea is to, you know, come up with decent questions to interview folks so that you can get an idea of their skills and one helpful tool is to come up with good screening questions, for your, for your folks that you're looking into possibly hiring hire. You're gonna need to talk to folks on the phone and set up interviews sometimes with folks and good questions can give you a good idea as to how the person feels about such a job, and the requirements of the job and so forth. The Center for Accessible Living has a great employment package that, you know, if you are on the personal care attendant list, but you know, they can provide you or they might even provide you one, I'm sure they would provide you one, even if you're just on the waiting list, whether you're on the list at all, it's just a good idea to do that. And, and just keep trying, keep trying. And the more you try, the better you're going to come out. Sometimes you're going to have to hire people and let the same people go in a short time because you’re really not satisfied with them, or are they don't work long and they leave. It really takes a special person to do this kind of work and to care what about they're doing and, and be really motivated, you know, other than financially, but you know, it pays off. It pays off in dividends all the way through as long as you stay with it. Kimberly Parsley 27:56 Alright, well thank you very much, Steve, for educating us about the personal care attendant program and your own issues with that. And thank you very much, and everyone else. Thank you for listening. We will see you again soon. Bye bye. 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 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 demand and [email protected] and put transcript in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Onken for our theme music. Demand and Disrupt is a publication of the Avocado Press with the 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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