Keith Hosey and Carissa Johnson interview Carolyn Wheeler, who simplifies the complicated and often confounding world of disability benefits. If you ever wondered how working would impact your benefits, this is absolutely the episode for you!

Helpful links:

Kentucky Hart Supported Living Program

Life Plan of Kentucky

Community Partner Work Incentives Counselor

ABLE Act in Kentucky

Disability Benefits 101 - Kentucky

Kentucky Office of Vocational Rehabilitation

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.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

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

You can find the transcript in the show notes below when they become available.

Transcript

Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I am your host, Kimberly Parsley, and I am here with two special guests today for our opening segment.  Roving reporter Keith Hosey is with me. Hello, Keith. How is it going? 

Keith Hosey Hi, Kimberly. I'm well. I'm cold on this day of recording, but other than that, all right.

Kimberly Parsley Yes, indeed. And I also have with me Carissa Johnson. Hey, Carissa. Carissa Johnson Hey, Kimberly. Kimberly Parsley And of course, Keith and Carissa have both been on the podcast. They are supporters of the pod and longtime guests and friends of our podcast. And they did a wonderful interview with Carolyn Wheeler. And Keith, why don't you tell me who Carolyn is and what you guys talked about?

Keith Hosey Sure. So Carolyn, I've known Carolyn for probably over a decade at this point, just having been in and around the small circles in Kentucky that involve various disability groups. Carolyn works for HDI at University of Kentucky and is just an all around interesting person. I tend to, there's a few people in Kentucky like Carolyn that I tend to refer as whenever you show up to a meeting, they're one of the smartest people in the room.  So, you know, Carolyn, I just enjoy discussion with her. I think it helps that we're like minded on some things like employment and benefits planning. But she really, she definitely knows her stuff and I always learn something when I talk to her. 

Kimberly Parsley I learned a lot listening to your interview with her about, oh my gosh, about the ABLE accounts that I was not aware of. Our listeners will learn all about that and about the whole thing about benefits. It's so confusing.  And yet she gave us so much information, but made it sound so easy, didn't she? 

Keith Hosey It did. And she's really good at making complex things much more digestible.

Kimberly Parsley Mm—hmm. And I appreciate so much you and Carissa stepping in to interview her. Carissa out there in Murray, Kentucky, do you get a lot of questions and things about benefits? 

Carissa Johnson We do. The Center for Accessible Living, where I work, we get all kinds of questions. And the WIPA program, through the Center and through Goodwill in Kentucky, helps explain benefits to folks and how particularly their benefits are going to affect them. Because for everybody, it's different. I've had some personal experience with the WIPA. I would have never, in my wildest dreams, jumped off benefits if I didn't learn what she taught me about all the incentives that are out there and the safety nets that are out there for those with disabilities that want to try work.  So it's amazing what people don't know, and knowledge is power. So I'm really thankful for the program and the opportunity for Carolyn to let us explain it.

Kimberly Parsley Yeah, yeah, it really was. It is very complicated, but trust me, our listeners will know so much more after they listen to this interview. And yeah, and anybody who wants to reach out to WIPA, which stands for something, I forget what it is. Do you know, Carissa, Keith?

Carissa Johnson I can't build that one, now I'm forgetting.

Keith Hosey Yeah, it's work incentives, planning, and assistance.

Kimberly Parsley Awesome. Look at Keith coming in there with it. Way to go, Keith. Thank you. So they will help you to make sure that you have all the information to make the best choice for yourself. And you can reach a WIPA benefits counselor through reaching out to the Center for Accessible Living,  either through email or on the Web or giving us a call, whatever. And we will put you in contact with someone. And speaking of things that are complicated and messy, Keith, you brought to my attention more than a year ago now about the subprime minimum wage. So can you tell us a little bit about that? Because there's been some movement on that front of late. 

Keith Hosey Yeah, Kimberly, I'm happy to talk about the subminimum wage.

Kimberly Parsley —Subprime. Yeah, did i call it subprime like subprime mortgage? Yeah, sub-minimum wage—

Keith Hosey Right, right. That's all right. So for those who may not be aware, a long time ago in 1938, there was a Fair Labor and Standards Act signed into law. It did a lot of wonderful things. One of the things it did at the time was make a provision where people with disabilities could be paid lower than minimum wage. And the idea at the time was to be helpful. The prevailing view of disability was that people with disabilities could not do or work at the same level as individuals without disabilities. Of course, now we understand that that is not true. There are people with disabilities out there in all types of careers and fields doing all types of work. Yet, this Section 14C of the FLSA is still in existence in 2025 as we're recording this. So what happened a couple years ago is the Department of Labor said, we're going to take a look at this. And they did. They did some analyses. There are already several states on the state level that have gotten rid of sub-minimum wage for people with disabilities. So those, I believe Delaware is one. Vermont, possibly. There's a number of them, several on the West Coast as well. And what they did was phase it out. They just didn't just say, hey, we're done tomorrow, right? Because there's lots  of systems in place that we have to look at and we have to support the individuals that might transition. But what did happen is the Department of Labor came out with a proposed rule. And proposed rule sounds to the normal person, to the average Joe, that this is an idea that we might  want to float. But when government departments get to a proposed rule, they're saying, this is  what we're going to change the law to, but we want public input. So they released a proposed rule late 2024, and they opened up just earlier this month. From about December 20-something through, for about a month, through about January 18th, for this comments period, for individuals to comment. And plenty of people did in different ways. But what the proposed rule says is that based on its effective date of a final rule,  which is the next step after you get a proposed rule, they got input. And so they didn't come up with this out of a vacuum. I want to make sure people understand  that. They got a lot of public input before the proposed rule. So now they're submitting  the result of that public input for more public input. And then when they take that, that's very government, isn't it? Kimberly Parsley It is. [laughter]

Keith Hosey So when they take all that together, then they'll form a final rule, which will look very much like the proposed rule. So they are proposing to cease any new Section 14C certificates from the federal government.  That means no new organization can get a certificate to pay people with disabilities sub-minimum wage. And then they're going to have a three-year period where they're going to phase it out. So they're going to have supports for agencies that may do that work right now to be able to transition their business model to an agency that does employment on a competitive level instead of the sub-minimum wage. So it's really exciting news for the Disability Advocacy Committee, community, I'm sorry.  And so hopefully we'll see that come to fruition. You know, oftentimes with changes of presidential administrations, regardless of your political preference, if it is a change, then those new people will have new priorities.  So this was a priority of the previous Biden administration. That doesn't mean that the current Trump administration won't follow it through. It just means that, you know, it's not as certain as it would have been if it happened a year ago. But I'm still pretty hopeful.  You know, disability has consistently been a bipartisan issue. You know, Republicans and Democrats alike have family members with disabilities, know people with disabilities and in general support good disability policy. And so I'm still hopeful to see that happen. 

Kimberly Parsley Yeah, absolutely. And of course, here on Demand and Disrupt, we will keep everyone informed and aware of how this proceeds. And I'm glad, Keith, that you gave us some background on the law because, you know, I think it was good intentions, a good idea that vastly outlived its usefulness, don't you? 

Keith Hosey That's a great way to put it.

Kimberly Parsley Yeah, so...

Keith Hosey Good idea at the time, and yeah, you said it perfectly.

Kimberly Parsley Yeah. So great. Good stuff to report here on this cold January day. Good things to report and a great interview. You all are going to learn a lot when you listen to our interview with Carolyn Wheeler conducted by Keith and Carissa. Thanks guys. 

Keith Hosey Keith Hosey here, along with Carissa Johnston. We're here with Carolyn Wheeler. Carolyn is a native Kentuckian with over 40 years of experience in program development, training, and advocacy on behalf of people with disabilities and their families. From 1990 to present, she's been employed in a variety of projects with the Human Development  Institute at the University of Kentucky. She was instrumental in developing the Kentucky Heart-Supported Living Program, which we'll  put a link in this podcast, and the promotion of person-centered planning practices. She's a founding member of Life Plan Kentucky, which we'll also link in this podcast, which is a pooled special needs trust. Carolyn is certified as a community partner work incentive coordinator, and we'll put the Choose Work website on there as well.  And provides training on the positive financial impact of working for people who receive social  security disability benefits. She was also involved in planning efforts to implement the ABLE Act in Kentucky, which is known as the STABLE Accounts, which we will link as well.  Since 1980, Carolyn has voluntarily served as a legal guardian and power of attorney for three different individuals with intellectual disabilities whose parents were deceased. In this role, she's helped each of them to live a good life in the country. Carolyn, welcome. Thanks for being here. 

Carolyn Wheeler Well, Keith and Carissa, thank you all for the invitation. It's an honor to be with you this evening. 

Keith Hosey Thank you. So I want to touch on just a couple things that I read out. Heart Supported Living, named after Hannah Hart, of course, is a huge program, a hugely beneficial program in Kentucky for individuals with disabilities and just a wonderful resource for Kentuckians with disabilities over the years. And then I want to talk a little bit about the ABLE account. When we passed the STABLE law here in Kentucky, I was serving on the Commonwealth Council for Developmental Disabilities, and we advocated for that as well. Oftentimes when our listeners hear about advocacy here on the podcast, we talk about how it's not just a one-person thing. While one person can absolutely change the world, oftentimes it is a group effort to get these things. And that's a wonderful resource for Kentuckians who receive Supplemental Security Income, SSI, the STABLE Counts and ABLE Act have allowed for those individuals to really be able to get out of poverty a little better while in those programs. Carolyn, I wanted to ask you about being a guardian and power of attorney. And how did you kind of get into that for these individuals?

Carolyn Wheeler Well, thanks, Keith. So I guess like many things sometimes in life, they came into my life. The people came into my life. So when I was in graduate school in Syracuse, I was introduced to  a man whose first name is Gary, who was virtually, I guess, or basically his parents had not been able to care for him at home or chose not to. So you all can possibly relate, even though you're a lot younger than I am. But Gary had lived, was born in 1950, had lived in a number of state  institutions in New York, because at that time, that's what we had. These Medicaid waivers that we now know about and just value so greatly, they didn't exist. And, but Gary had been able to move out of an institution and, but he was basically not quite homeless, but close and just, again, met him through a series of circumstances. And at that time, just becoming his guardian was kind of all I knew to do in order really  to be able to hopefully get services for him. And so I was able to do that. I also managed his SSI payment at the time and actually applied for a HUD section eight apartment for Gary in 1980. And he lived there until maybe about five or six years ago. And now he needs more support, but he's still living, you know, pretty independently. And then the folks here in Kentucky, I met man by the name of Clinton Montgomery, when  I worked for seven County services and was asked to go visit him at a personal care home. Now you all probably know enough to know that personal care homes, these are not the kinds that maybe older adults go to and pay four or $5,000 a month to live in. These are personal care homes worth that time, Keith and Chrissy. You may or may or may not know, but they essentially took pretty much all of your benefits. You didn't, maybe you had your personal needs allowance of 40 bucks a month. And so I met Clinton and actually his dad lived there. And again, guardianship for me was a way to be empowered to act on his behalf. It's not, if you read the guardianship statute, it really is to help people make decisions, but also to lead good lives. And I was able, again, as his guardian to access services and eventually help him go And he worked in a sheltered workshop, which you may or may not remember that, and then was fortunate because of supported employment coming about. He was hired on a full-time basis at the Courtyard Marriott in Louisville, and he was able to actually, I was able to help support him to buy his own home.  So I think that, well, and so it's a good segue then, you know, Keith and Carissa, just into the power of work in people's lives. Just the power of work, the transformative power in terms of relationships, but also income. And that was pre, you know, the WIPA programs you all are, I'm sure, familiar with, the Work Incentives Planning and Assistance. So depending on where you're living,  you can click on that Choose Work link and you can find out the Work Incentives Planning and  Assistance program in your state. You want to get connected with them. But it was through the help of a friend named Lucy Miller, whom you may know, Keith.  

Keith Hosey Chrissy, you probably know Lucy,  too. Carissa Johnson I do. [laughter]

Carissa Johnson So Lucy was doing, you know, benefits counseling before people got paid to do it. And we all know of her extensive knowledge. Clinton and I actually took her to dinner and I had a letter from Social Security I didn't understand. And so she explained it to me. And then she explained to me about this thing called substantial gainful activity. And then she explained to me something called impairment related work expenses. And all that to say is that I took what she told me. I took her advice. And Clinton had impairment related work expenses. So I was able to maintain Clinton's full Social Security disability insurance SSDI payment on his own work record, his own work record, and his full-time employment. And that's how he could afford to own a house. 

Carissa Johnson So. that is awesome.

Carolyn Wheeler So it's just that and again, Clinton is a person didn't go to school, man, a few words, but like to work and through supported employment was provided with some low tech accommodations to accommodate the fact he didn't read, didn't tell time. So I just want our listeners to be, I guess, just curious if you've thought about going to work, but you're afraid you're going to lose your benefits. So I want to encourage you to be curious, to get factual information about that, because you're so limiting.  Frankly, you're most likely holding yourself hostage to your payment when now, especially substantial gainful activity is going to be over sixteen hundred dollars a month next year. I mean, you could earn some real money and still maintain your full SSDI payment and still some SSI.  So you can tell I'm pretty passionate about it. 

Keith Hosey And that's exactly why I said I need Carolyn Wheeler on this podcast and we need to talk to her. You know, you're preaching to the choir with Carissa and I. We both cut our teeth in employment when we started in the disability field. And I love, I just want to go back to one thing real quick before we walk away from Lucy. I want to get an angry email from her. So I'm going to say what her nickname was when she was coaching her daughter in high school. 

Carolyn Wheeler I can't wait.

Keith Hosey They called her the Cussing Coach.

Carolyn Wheeler That sounds like Lucy. [laughter]

Keith Hosey So, the other more serious thing I wanted to go back to was, Carolyn, when you were talking about, you know, being power of attorney for these individuals, you said you're empowering them. And I don't think a lot of people associate the words empowerment with a power of attorney. And certainly, the reason I brought you on here is I want to talk about employment and how people can dig their way out of poverty level. And like you said, trapped, maybe even a hostage. And to me, the longer I work in the employment field, the longer I believe that misinformation about benefits. Is the number one barrier to people with disabilities going to work. I can get an angry letter for that, too, because someone's going to say, no, it's transportation. And of course, we have a lot of big issues. But for me, until that person understands how their benefits are going to be affected and how they can benefit from working, you know, a lot of people will stand in their own way. And I would, too, probably, if I had the wrong information. So, I appreciate you equating the empowerment with those and he owns his own house now, which I don't know the exact percentage, but it's less than 20% of individuals with developmental disabilities own their own home. So that's. 

Carolyn Wheeler —or maybe even less or maybe even less and I should add actually so Clinton actually died unexpectedly not that you would have known that Keith but in 2003 and that's I had met his sister so a sister has an intellectual disability as well but again circumstances very interesting  circumstances how it come for her to be back in Clinton and then my life because in Clinton is  not a person again man a few words he doesn't know his date of birth I mean he but I want to but I do want to say for the listeners benefit this is a man a few words but one of his favorite expressions was and he would say it in a sing-songy voice, “no work no money” and that is a smart man. [laughter] I don't care what his IQ was. He was a smart man and he had a really strong work ethic. He really wanted to work.  And so I'm grateful for the sheltered workshop that kind of launched him and then grateful for the support employment folks that helped him get this really great job. But when Clinton died, I thehard-pressed take on this role in his sister's life. So his sister, Linda, who was a bit younger, was living in a kind of a group home out in Shelbyville. And so I petitioned the court and I was initially, again, her limited guardian. And then when that expired, I'd been power of attorney for my own family members and had just seen how it works. I mean, it just works. If you have a good power of attorney, again, we may all at some point not be able to manage our own medical care, financial affairs because of cognitive, as you get older, your cognitive decline or illness, you know, that you just, you can make your, you make choices, you can make your needs known, but you can no longer navigate the complexity of some of those things. So I worked with an estate planning attorney here in Lexington and became Linda's power of attorney. Linda knew if she signed again, she executed the document that I could still do for her everything I did for her. And both Clinton and Linda would refer to me as the money lady. I mean, I just, I've managed their money and I do a good job of it. So that's the empowerment, Keith. It gives me the, that and being the representative pay you a social security, but just. It gives you the ability, again, to do things, again, with but also on behalf of a person. I mean, Clinton would not have understood how to sign all the forms to execute a mortgage. People who don't have an intellectual disability probably don't even understand what they're doing, but they could if they chose to read it. Clinton doesn't read. Similarly with Linda, I was able to help figure out how to get her moved to Louisville, and she actually lived in Clinton's house for a while with the same person he'd lived with, and I was able, again, to access some services there, employment-related services for her.  So those are things neither of them could do, and just being somebody's friend doesn't make you, I can't just sign forms for them. I can't give consent. Does that make sense? I had to consent. I had to consent to voc rehab. You have to consent. You need a legal authority. So what I love about power of attorney is that Linda, rather than the court, is giving me the authority to act on her behalf. That's what a power of attorney does. You're giving someone else the authority to act on your behalf if or when you can't. So it's empowering that way to me. I'll just tell another quick story. April of 2020, can we all remember where we were? You know, did you even have a decent mask? I didn't. Linda fell and fractured her pelvis. Now, Linda lives in Louisville. I live in Lexington. So just I do end up coming to Louisville. We end up calling 911, take her to Norton's on Brownsboro Road. And I was able to present my power of attorney to the ER emergency ER nurse with my cloth mask that wasn't worth much. Then go sit in my car for three hours while they figured out what was going on. I mean, people call me, you know, call me because I have the authority in that document to act on her behalf. And that way it's empowering.  

Keith Hosey Yes, and in the way that you know what her wishes are, too, more than a court does, for sure. Let's move on to employment, because one of the reasons I wanted you on here, Carolyn, is sometimes I feel like I am speaking German to a French audience, and Carissa's laughing over there, because she's heard me tirade about this before a hundred times, I'm sure, but, you know, there are so many obstacles for a person with a disability to go out and get a competitive, integrated job, and we don't need to make the unknown another one, and so that's why I'm so grateful for the Work Incentive Planning Assistance Grants out of Social Security. Center for Accessible Living is one of the recipients in Kentucky. Goodwill is the other recipient in Kentucky. They cover all 120 counties. And they are able to sit down with someone and tell them exactly how their job will affect their personal benefits. And while I'm thinking about it, I do want to mention DB 101—

Carolyn Wheeler Thank you, Keith. I was going to if you didn't. Yes.

Keith Hosey So there is a self-serve website out there that is specific to Kentucky Benefits that Voc Rehab and possibly other partners paid to get customized for Kentucky Benefits. And so people can go on there and they can register an account or they can put general information in and they can figure that out. But the great thing about the WIPA project is they sit down one-on-one with a person and it may be over the phone or video. But it's one-on-one and they're talking about that person's benefits. And for the many years that, well, in continuing to this day of working in kind of the workforce realm for individuals with disabilities, I never want to have someone lose money they didn't think they weren't going to lose. If I lose $5, I'm upset.— Carissa Johnson I say, too, not only did I cut my teeth on employment, I'm a product of this. When I started thinking about going to work, I was on SSI and scared out of my mind because of the health benefit, most of all. But whether or not I'd be able to work, a lot of people told me no. A WIPA coordinator told me yes and was able to explain that to me. So that is so important, so empowering. Keith Hosey And I mean, yeah, you are a testament to the way the system can work to benefit people. Because guess what? Carissa is a homeowner and a mother and a full-time branch manager of a nonprofit agency. You took advantage of that. And, you know, that progress, people don't understand. And Carolyn, you alluded to it earlier when you said, and then, you know, once you work out an SSI, you get on SSDI. And that's your own work record there, too. And so that's based on the work that you had put into the system. And it's such a big jump. Obviously, Medicaid and SSI are true welfare in the term, in the sense that they are the payer of last resort. For individuals who cannot pay. And once you bridge that gap and you start getting that SSDI, then Carissa, you didn't have to worry about how much money you had in the bank.

Carissa Johnson No, I didn't. It actually saved me when I took a sabbatical from the job for a little bit. I was able to go right back on my benefit and look for another job. So there is so many different avenues for folks. 

Keith Hosey That's right. I forgot you took advantage of expedited reinstatement. Carissa Johnson I sure did.

Keith Hosey Yep. Fantastic. Yeah. Yeah. So I just, I don't, I don't get, sometimes I feel like I'm talking to walls when I talk about this. And it's, unfortunately, sometimes it's the people who are providing employment services to the disabled individuals. And they may have preconceived notions that this person doesn't want to work off their benefits, for sure. But that's not always the case either. 

Carolyn Wheeler Right. Well, and, you know, Keith, people is. Well, at least Clinton and Linda, I mean, they both kept their benefits and worked. I mean, it's not it's not an either or it's really not an either or there's I mean, you can work your way off benefits, but you can also work and still maintain your benefits. Again, depending on perhaps how much you can work, what kind of work you can do. But so, again, I think help is that people can just can be I don't know if we're using the word be curious, but just be interested, be interested. And thinking about what how you'd like your life to be better. I mean, money does play a part. It just does, you know, in terms of where you can live or where you can what you can do with your free time. And just work also brings lots of other benefits. I'm assuming we would all agree with that. It's make friends, socialization. Absolutely. Yeah. So there's so many benefits. And then to the stable account, you know, Keith, to your point about that. So again, I don't know if our listeners are just here in Kentucky or if they're outside  of Kentucky, but you can go to the ABLE NRC, National Resource Center on ABLE accounts, find out about your state. But this allows you to save up to, you can actually save up to $18,000 a year and more if you work, but you could have one ABLE account, multiple people could contribute, and then you can use it for qualified disability expenses. Like maybe that modified van or that much better wheelchair or for Linda, it's her transition lenses, you know, that help her to be able to function better.  So there's no longer the reason of, you know, that I can't earn too much because then I can't, I'll have too much in the bank. I mean, we just have lots of, I guess, savings vehicles, opportunities for people to really have a better life. And I will just add, when you work, you're paying payroll taxes. And so you're really, that money out of your pay. Check is really going toward your social security account. So when you, if you go, if you're on SSDI, actually, you'll get a raise at some point  in your SSDI payment. And then when, yeah, so, I mean, it's just all good. It's just all, it's just all, it's just all good. And then Linda gets a very substantial retirement payment from her own work record. She worked a long time, you know. And so she's living large compared to if she'd never worked, which is more like Gary, the He may be getting a benefit off of a parent's work record, but, you know, SSI is going to be $967 next month, starting in 2025. And that sounds like a lot of money, but no. 

Keith Hosey It's certainly, no, not at all.

Carolyn Wheeler Not at all.

Keith Hosey And people do amazing things on that budget.

Carolyn Wheeler That's exactly right.

Keith Hosey But, you know. And when I talk about it, I say, do you want more or less? Because if you work, we can have a path to more, or we can stay where you're not allowed to have more than $2,000 in the bank. And thankfully, these ABLE accounts are allowing for that because the crazy thing about people with disabilities is we have unexpected medical incidences. And I don't know many that are less than $2,000. 

Carolyn Wheeler Absolutely. And actually, you could have an ABLE account even if you have a qualifying disability before 26. And Keith, you know, that increases to 46 January 1st of 2026. Yes, sir. And that was in large part because of veterans. So you could have the account, even if you're not on SSI or SSDI, and the money grows tax-free. So what's not to like about that, as long as you use it for qualified disability expenses? So it's a game changer. But again, to me, if you are getting $967 a month, you don't have any money to put in one unless you go to work. 

Keith Hosey Yeah, I mean, in that financial, and you alluded earlier, Carolyn, that, you know, there are so many benefits to work like socialization and, you know, having the extra money to live in maybe a nicer place. You know, employment, along with neighborhood and some of those other things you mentioned, are all social determinants of health. And so when you look at employment, I kind of call it a super social determinant because it touches so many of the other social determinants of health. And there's a lot more data coming out now around the actual medical benefits of employment. You know, there have been a number of studies now that show that individuals who are employed utilize the medical system less. They go to the ER less. They have less inpatient stays. Physical and mental. You know, the higher global functioning, you know, and just the last probably 10 to 15 years, the literature has exploded over the physical and psychological benefits of employment as well. So it really, it's not just that paycheck. It's all those other things, too, that we get from going to work. And, you know, I think your question, you know, what would it? Kind of what would it look like if you did? You know, that really gets people's juices going. I think, you know, just that really gets kind of the wheels grinding. What would it look like if I went?— 

Carolyn Wheeler What would it look like? And social security actually puts out a really good booklet. You can get it off their website. It's called, Working While Disabled: How We Can Help. You can get it off ssa.gov and literally in like about three pages, it will just tell you if you're on SSDI, here are your work incentives like expedited reinstatement that we talked about. If you're on SSI, this is how it works. So actually believe it or not, social security, you know, it's not, you can, again, you can go to work, still maintain your benefit. You can go to work and work your way off of a benefit. And for people on SSI, they could actually have their SSI payment go to zero and still maintain eligibility for Medicaid because of an incredible work incentive, but you'll need an ABLE account because you've got to have somewhere to put all that money because unless you can spend it all. [chuckle] So golly, life could be good. Life could just really be, life could be better.  

Keith Hosey And I truly believe for almost everyone, some amount of work would be beneficial. You know, I've been hard pressed for anyone to present someone that wouldn't benefit from work, but I never say never. So I just I think that there are a lot of opportunities now, especially with those ABLE accounts for people to go out and to try work. And it really is. It's trying, you know, the work incentives that we've been talking about are really kind of a try it before you buy it for working for individuals with disabilities. There are these safety nets. You have, you know, extended period of eligibility is a safety net. And, you know, trial work months are a safety net and all these safety nets so that people can go out and try, have the dignity to fail and try again. And and and then decide on what level, because, like you said, you can work and keep your benefits, too. So it's not all or nothing. You're right. There are a lot of people I know that work part time jobs and also have SSDI and are very happy with their work-life balance. 

Carolyn Wheeler That's right.

Carolyn Wheeler That's a good way to put it, Keith. Yes, you can have work-life balance and you can maintain critical benefits, maintain critical health insurance and still have more money. Because again, in general, most people's SSDI benefit is probably not going to be enough to get them the life they would like to have. I think people may have a misconception that it's based on, I don't know, the severity of their disability. Well, no, it's based on your contributions through working or a parent. And again, you're paying yourself. When you work, your payroll taxes are going back toward your Social Security account. So it's just, you can tell I get excited about it. So I just appreciate the work that you all do to encourage, to support employment. to just really help people to cast a, you know, maybe a little bit bigger vision for their lives. 

Keith Hosey I think I love that, “a little bit bigger vision for their lives.” You know, in my day job, I work partially with the homeless population and I often have case managers in meetings say, you know, Mr. So-and-so, you know, we got him an apartment and we got him a couch and a bed and and he's just really bored. And so he drinks every day. Well, have you thought about work? That's something that could take up a large part of the day, maybe. And just that, you know, we got him. There's a roof over his head. So what else would this person need in life? And we've got to get out of that. I think was it one of the President Bush's said the slow segregation of low expectations. I believe it might have been Herbert Walker. 

Carolyn Wheeler Well, probably because he was there when the ADA was signed, wasn't he? He was there when the ADA was signed. So somebody may have written that for him, Keith, but he may have said it. But absolutely. And again, as we know, there are office vocational rehabilitation or there are services to help people to go to work if they want to go to work. And they don't cost anything. There's no charge of the services that the VA provides to people to go to work. 

Keith Hosey That's right. VA and voc rehab. I'm a product of the Kentucky State voc rehab system. You know, they helped me financially with my bachelor's degree to a certain extent.

Carissa Johnson I was going to say they still help me with my vehicle, being able to make that accessible so that I'm able to drive back and forth to work. And I've been working for about 20 years. 

Keith Hosey You know, that's a great point. I don't know that a lot of people, even those that are familiar with Voc Rehab, realize that they can help with maintaining employment for individuals as well. So you mentioned your vehicle to get to work. I know some people get other mobility aids or hearing aids to help them better navigate employment. And oftentimes we talk about Voc Rehab as the front door to employment, but they can also sometimes be a support in employment.  So thanks for bringing that up. That's awesome. Yeah. 

Carissa Johnson Can we talk about or now about another thing that you were involved in to keep the multitude in the beginning because I also utilize this program and I'm very grateful for it. Heart Supported Living. It's a grant for those that don't know that you can apply for anything that would make you more independent, whether that be an ongoing support, like somebody to do your yard work or to what i applied for a couple times and got, which was one-time supports and it can be anything. I'll give you an example with me, one of the times that i got this work was to put a roof on my front porch so i didn't get wet when i was unlocking and locking my door. Really simple thing but expensive. So how did you get involved in that? Let's talk about that.

Carolyn Wheeler Oh, well, that's an interesting story, Carissa. So actually it's named after Jane Hart, Keith, whose daughter is Hannah, but I knew Jane Hart. So Jane was a formidable advocate as a parent, as a parent, and we were, I think at that time, we were just both really frustrated. There was just no movement in terms of expansion of any kind of supports to help people to live in the community. So we thought we'd learn about this. We learned, I don't remember how we heard about it, you all, but it was, we'd heard about supported living. We actually went in some other states and studied it and then decided we'd just, we'd write some legislation. And so I was involved in helping to write the legislation, learned a lot from other states. And it really was, it's always been participant directed, which is what we now have in our home and community-based services. So to your point, Carissa, I mean, you do have to apply, but you have to say what you want. And if you're going to hire people, So there's a very, there's a lot of responsibility on the person or their family who applies, but then it does give you the freedom to do, to hire people and to hopefully make, again, to provide the supports that you need. And we also, because I was involved at that time with helping or to work, working with people, how about working with high schoolers who are deafblind to transition. People who are deafblind typically don't qualify for any of these waivers because the criteria is for someone with an intellectual or developmental disability. Or nursing home level of care. So it was also trying to create a program for people who meet the ADA definition of disability, which I really like about it. So I do wish there was more money, but I'm glad to know it's been helpful to you, Carissa. And a lot of those one-time expenses have, can be life-changing for people, whether it's making a bathroom accessible, building a ramp onto your house for you, assisting with keeping your modified van running. I love that story about a roof over your porch because getting wet or slipping or you're, your wheelchair spinning or whatever, if there's ice, I mean, again, can be— Carissa Johnson Ooh, straight down a ramp. 

Carolyn Wheeler Yeah, i mean, So I love hearing some of those stories. So that's how I was just really fortunate. You know, I've known Keith for a really long time. I mean, there's just a community of people in this. I mean, Dave Mathis. I mean, how long have we known Dave Mathis? [chuckle] But just a community of people who really had this shared vision and then do work together to try to make change. So I've been very privileged, very fortunate. So thanks for asking. 

Keith Hosey I don't know a better way to end it than what you just said. I also feel very privileged to be involved in a community of advocates who are trying to make a change and continue positive changes here in Kentucky.  And I'm glad that you're one of those individuals, Carolyn. I appreciate you and all the work that you do. 

Carolyn Wheeler Well, thank you all. I appreciate being with you all this evening.

Kimberly Parsley Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Kimberly Parsley Our executive producers are me, Kimberly Parsley, and Dave Mathis.

Kimberly Parsley Our sound engineer is Michael Parsley.

Kimberly Parsley Thanks to Chris Ankin for the use of his song, Change.

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Kimberly Parsley Thanks, everyone.

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