This week we bring you a very special episode from our Independent Life community of advocates who join us to share their personal stories in an effort to demonstrate the human and economic return on investing in the JPPAS program. This will be accomplished through meeting several of the recipients of the program and learning why JPPAS has been so instrumental in achieving their dreams and Independent Living goals. Whether you’ve been following along on our journey from day one or are just joining us today, we encourage you to contact key senate and representative decision makers to advocate for increase funding for the program for its sustainability and future growth to add more people onto it.
The James Patrick Memorial Work Incentive Personal Assistant Services program provides financial assistance to persons who are gainfully employed and have severe or chronic disabilities that require assistance from a personal care attendant (PCA) for at least 2 activities of daily living such as self-care, including ambulation, bathing, dressing, eating, grooming, and toileting, and other similar tasks. The program is primarily funded by the Tax Collection Enforcement Diversion program which provides the deliquent tax owner an opportunity to pay back the taxes instead of being prosecuted and serving time in jail.
Do you qualify for the program?
- Dug Jones: Clark University, Program Manager
- Salim Nasser: Nasa Mechanical Engineer; Inventor of ROWHEELS
- Christina Martin: Vocational Rehabilitation Consultant; Ms. Wheelchair Florida 1999
- Carey Larabee: Disney’s Wide World of Sports Guest Services Representative
- Mark Brisbane: Wheelchair Ramp Program Consumer Specialist
SPEAKERS: Jane Johnson, Tony Delisle, Carey Larabee, Dug Jones, Mark Brisbane, Christina Martin, Salim Nasser
Christina Martin 00:00
I’m a workaholic and JPPAS has been just an absolute godsend to me, because each and every day, I was wondering how I was going to get from one place to another and get to the office and how it’s going to make everything go. so stressful. And I was on the waiting list for a couple of years, once I came off, it was just like a weight had been lifted from my shoulders, it was like, Oh my god, I can just work now, just have a little hand up to be able to help me, you know, make the day school easier and get help for the assistant, everything has just been incredible.
Carey Larabee 00:34
You know, your PCA just gives you a lot of confidence to know that you’re gonna have a chance to get to work and do what you need to do, be independent, and also have a purpose and feel like you’re contributing to society to your country, and you’re, you’re an asset to your company.
Dug Jones 00:53
It made it possible, I was afraid. When I started looking at jobs, I was afraid of not having Medicaid and then how to pay for my my support and my help. If I chose to leave Miami and not have the support of my family, JPPAS was a godsend, I would not have been able to do it.
Tony Delisle 01:25
And I want to say in today’s episode, I’m very excited to bring to you all a group of people that are extraordinary, fascinating, and will not be able to get to the depth of what they’re all about in this episode. But in the timeliness of the moment, we’re going to be talking about a very important program that allows people with disabilities to attain, maintain and sustain meaningful employment in the state of Florida. That has been nothing short of a godsend for many people in their families, and for our communities and society. And here, we have a really good opportunity to meet some of the people that are related on this program. And it’s just amazing. Each and every one of them, hope to have them back individually for an episode to get to meet them more and to dive in. But for today, I just wanted to get to know the group a little bit better myself. For some of y’all. This is the first time I’ve come into conversate with you. I was invited to one of your socials to talk with the group of participants that were in on that there’s a roughly eight ish people I think that were on that and talking about health and you know what it’s like to be a wheelchair user and the implications of all of the lifestyles and wonderful conversations that I learned so much from and you are so open and receptive. And also know some of you all from professional relationships as well. And I consider dear friends and it just this is just a great opportunity, I think for everybody to get to know you all better. So I’m going to I’m going to lead us through some conversations. My first question is how is disability impacted your life? In other words, you know, what does it mean for you to live with a disability? And especially if people don’t know about disability, you know, what would you like them to know about through the lens of your eyes and your life?
Carey Larabee 03:09
Well, I think for me, you know, I don’t look at myself as different, I don’t really know any better. I was born with cerebral palsy, obviously, you know, we do things a little bit different. We need a little extra help in terms of care providers and different things to make life more accessible. But I’ve been blessed, you know, to have a great parents and, you know, I had a great education graduated from the University of Michigan, made a lot of good contacts there, I worked for the Center for Independent Living in Ann Arbor helped develop some sports and recreation programs for people with disabilities. And so and then I moved down here in 2005. And I’ve worked with Walt Disney World ever since at ESPN Wide World of Sports, most recently with the Tampa Bay Buccaneers on game days. And so to me, the key with living with a disability is you have to surround yourself with the right people. And if you can do that, then you know I don’t look at myself as is different. Obviously, this the JPPAS program, and FACIL has been a big part in helping me maintain my employment, which has also given me a great deal of independence and empowerment.
Tony Delisle 04:36
To boot, from what I understand you won one of the most prestigious awards there at Disney World’s Wide World of Sports. It was like a legacy honor. Is that is that correct?
Carey Larabee 04:45
Yeah. So the Legacy Award is really need. It’s given the 2% of the company but the great part of it is you’re nominated by your peers and they do a vote every two years. For the Legacy Award. And I was fortunate enough to be a recipient. But one of the things I really enjoy, people ask me all the time, you know, how did I receive it? I don’t know, I was just being myself. But one of the things I really enjoy about my job, in particular at the sports complex and being able to work with our guests with disabilities, so being able to be a part of some events like Atlanta Braves spring training, to help kids with disabilities and their families, do kids run the bases after the game, do some reads with autographs and pictures and things like that. And then also had an opportunity to work with Make A Wish in the NFL Pro Bowl. And then Prince Harry’s Invictus Games. I don’t know if you guys have heard about that. Really, really cool event that happened in 2016 for veterans with disabilities, really, really an inspiring event to be a part of. And so that was a pretty big honor. So anytime I get a chance to give back I mean, to me, that’s, that’s what it’s all about. To make it easier for other folks and to give them confidence that they too can be independent and live a successful life.
Tony Delisle 06:22
Well, that’s what we’re really hoping to promote here is the people to be the best version of themselves so they can live independently and help to serve others. So I want to bring in here to the conversation as well, Dug Jones, talk to us, you know, what would you want people to know about how disabilities either impacted your life or what it’s like to live in the day of a life of someone that has a disability?
Dug Jones 06:40
Yeah, sure, you know, and I acquired my disability as a high school student. So I spent a little bit of time is a person that was able bodied and then acquired to disability and, and I think one thing that I can appreciate about the perspective I have is this was before ADA. So you know, I, I spent time as a able bodied person, I spent time as a person with a disability before ADA, and then time as as a person with a disability after ADA. And you know, I was blessed I think as Carey mentioned as well to have had a the kind of family support in friends and opportunities that made the transition manageable for me, in terms of, you know, of understanding pretty early on that I was the same person, even if the things that I was going to be able to do might be a little bit different, my focus might be a little bit different. But at the core of who I was, I’m still still the same person, just just somebody that that would need to do things a little bit differently, because of the disability. And those couple things that I think I highlight for people are, for me, at least, I need needed to become a little more outgoing and comfortable encountering people who maybe would be standoffish because of their own lack of experience with people with disabilities. So for me, if I wanted to have a broad friend group, you know, I needed to show people that I was comfortable in my own skin, enough for them to be comfortable to interact with me. And then the second piece is, is just the planning piece. And you know, when I’m fortunate that my injury level is such that, you know, that I can do many things for most things, but they still will require some level of thinking ahead and planning you know, if you if you decide to go somewhere, and you might need a rental vehicle, you know, you need to plan ahead to get one and then you need to call them the day off and make sure that they actually did prepare one with hand controls. Same thing with accessible hotel rooms, or Airbnbs so, so one of the biggest differences beyond the interpersonal relationships for me, is just the need to be a little bit intentional and to curate your experiences a little in advance so that you don’t waste time in create uncomfortable or awkward situations.
Tony Delisle 08:58
So I heard in there adaptability, being very adaptable to having the social fluency to be able to really interact with others, but also that all stems from, you know, having good self awareness and being authentic to yourself and being the best version of yourself possible. If I’m not mistaken. I was trying to like weave that thread that you’re going through.
Dug Jones 09:15
Yeah I think you’ve paraphrased it. Exactly.
Tony Delisle 09:18
And that’s what I love about you. So what does it say about your character in terms of your illustrious career as a competitive wheelchair basketball player, because you’re very well known if the audience doesn’t know you got a very illustrious wheelchair basketball career, quite the competitor.
Dug Jones 09:33
Well you know, that and that was something that was important to me in large part because I was very interested in athletics and focused on competitive athletics before my disability. And you know, I changed sports, you know, to wheelchair basketball after I became a paraplegic in large part because that was the sport that was the most well developed, you know, back in 1974. Since then, I you know, been able to to involve myself in a lot of other recreational type activities, you know, whether it was swimming or skiing, you know, snow skiing, so those things have come along nicely. And probably the other really important thing about the wheelchair basketball experience for me was that it introduced me very early in my disability, to other people who were active, productive, go getters, you know, in in people who had disabilities and acknowledge their disabilities, but for whom that disability wasn’t the only defining characteristic, or in many cases, not even the central defining characteristic of who they were, it was, it was a part of the tapestry of who they were, and they were in the game of wheelchair basketball, more to play basketball, then ,it was more of the basketball than the wheelchair in and that was useful for me, because I also had got to learn a lot. vicariously, you know, people to tell me the things they had learned, so that I didn’t have to learn every lesson on my own, you know,.I didn’t make the mistakes that I could have made, you know, little things like two door cars. Open the door has a wider swing, and it’s easier to put a wheelchair in than a four door car. Yeated pants look good standing up, and they don’t look as good. sitting down You know, a million just little things like that, that I was blessed to get a running start to have known because of that those associations.
Tony Delisle 11:29
Yeah, they say wise people learn from the mistakes of others, right? Yeah. Well, Christina, I’m gonna bring you in here in the conversation, as well. What did what are some of your thoughts on how disabilities impacted your life and what you would want others to know about disability?
Christina Martin 11:45
A little bit similar to Dug’s, I was 19 when I had my spinal cord injury. And it was a car accident. So I was 19. So I’ve been injured for 29 years. So about you know, I’ve been in the wheelchair for longer than I was prior. And I was, you know, an active regular, young 19 year old girl, and had graduated from, you know, high school and was active. And then it was devastating, you know what happened, but then people surrounded me and I got to know people and Tampa General, the staff there kind of surrounded me, and they encouraged me to be Miss Wheelchair, Florida, which was a neat experience for me, and I got to meet a lot of people all over the state of Florida. And along the way, you know, voc rehab came into my life for me to be able to go home from the hospital. And full circle is I work for them now. And I’ve been with oak rehab for about 10 years, congratulations, went and got my master’s degree in rehab counseling. And pretty much, you know, saturate myself in my work. I’m a workaholic, and JPPAS has been just an absolute godsend to me, because each and every day, I was wondering how I was going to get from one place to another and get to the office and how it’s going to make everything go, so stressful. And I was on the waiting list for a couple of years. So once I came off, it was just like a weight had been lifted, you know, from my shoulders, it was like, Oh, my God, I can just work now. And I’m just, you know, to have a little hand up to be able to help me, you know, make the day school easier. Get help for the assistant, everything has just been incredible.
Tony Delisle 13:23
Thank you, Christina. Really appreciate you sharing that. And I really appreciate you saying how you know it’s a hand up and really a lot of ways I’ve heard the J pass program is one of those programs that really teaches people how to fish and you’re not something just like given fish away, but it’s really something that, you know, without a fishing pole, personal care assistance or net, we couldn’t catch all the opportunities that are out there for us, especially in the realm of work and Salim, I like to go to you on this one. You know, being a mechanical engineer working for NASA, an entrepreneur, from what I understand with Royals, what is work meant for you as somebody that it seems to have really accomplished a whole lot they’re in a very competitive field. That is just fascinating work. By the way, what is having the ability to work meant to you and the impact in your life?
Salim Nasser 14:11
I mean, it’s, it’s everything. It’s gives me my independence, which is the main thing I lost as a result of my disability. Like a lot of people here I got injured my first year of college, also a car accident and I’m a C5 quadriplegic. So as independent as I am, when I’m in my chair, I am fully independent when it comes to getting ready in the morning and going to go into bed at night. That’s an expensive proposition. If you if you choose to live alone, which I did, my family is all in Miami, right? I’ve working at the Kennedy Space Center. Just since I graduated with my master’s here, it would have been extremely difficult, especially at the very beginning to do that without JPAAS without the support that they provide. My carer is $20,000 a year just for caregiving. So when I first started as a junior engineer that would have been, what, 40% of my pay, just to sure pay for my support. So it’s a, it made it possible, I was afraid. When I started looking at jobs I was afraid of not having Medicaid and then how to pay for my my support and my help. If I chose to leave Miami and not the other support of my family at JPAAS was a godsend, I would not have been able to do it, if it wasn’t for that I have received opportunities that other Space Centers, promotional opportunities, and I have had to decline them because it would have been essentially either even or a pay cut because of the loss of the support for JPAAS. So it’s a it’s a godsend. I really wish that other states had this program, and provided this kind of support to people with disabilities, it’s a shame that it’s only available in Florida.
Tony Delisle 15:50
Yeah, I think you’re pointing to something here, that’s really profound, I got the chills as you’re saying that, it’s just having the opportunity and means for personal care assistance. And it’s allowed us to have social mobility that you otherwise would not have had in afforded these great opportunities that you have there. And it’s just wonderful testament to real return on investment this program has an human and economic costs. And so I want to go over to you Mark Brisbane and talk about the importance and the role of personal care assistance, a PCA, in one’s ability to work and why that relationship or having that ability and service is so important for working.
Mark Brisbane 16:28
I’m not slamming Dug an guys, ladies on the call today have a significant spinal cord injury to face, if you have limitations in you know, in regards to doing what you have to do to get ready for the morning, and get ready for the knot. Especially if you have a job and you’re employed. You know being on the JPAAS program, having that money coming in extra that helps you to afford someone that’s dependable. Having that person that you know is going to come in help you do the things that you’re not physically able to do is comforting. Because one, it’s very expensive, two you can’t always get someone that’s dependable. And you know, I’ve gotten older, you know, I’m in my 50s now and I’ve been a quad, quadriplegic since 1983. You know, there’s times that if I can’t get my spouse, I have to have someone doing the heavy lifting, or transferring. So there’s a lot that comes into play. And without the JPAAS program, you know you’re paying out of pocket, it can be really expensive. Salim said like you said $20,000 a year, it can be around that sometimes it could be more, it’s just according to what level of care you’re going to need. If you’re working a full time job to get ready for the day. And as you get older and you’re working, you’re going to need more help. Because you’re not going to be as strong as you were in your 40s or your 30s. I love hearing these stories. And I already asked Jane for permission, but I’m on the Oversight Committee. I’m the Vice Chairman there, and to hear the stories and also work for the Center for Independent Living, doing casework there for consumers. And just knowing over 37 years, 36 years of being in a wheelchair, there was nothing back, me and Dug, he’s probably been in a chair longer than I have, maybe the same time. There was nothing like this back in the 80s. You never heard of anything like this. And now this point in 2021. There’s times I think back that what did people do that didn’t have a job. How did they afford? Who did they count on if you didn’t have a family member? So there’s a lot that comes into play Tony and I can talk talk talk, you know it till 12 o’clock and not about it, but it’s very beneficial. And we’re very fortunate because not all states have a program like this to help us.
Tony Delisle 18:57
Dug Jones 18:58
I think Mark’s pointed of the timeliness even is a significant one for me because as I’ve gotten older and I’m you know, I’m, gosh, 40 some years as a wheelchair user now 44 maybe, and I’ve been full time employed for 35, the most recent 35 of those. And just you know, when I learned about this program, two or three years ago, maybe three years ago, I was just reaching really a point to where you know, because of my shoulders and elbows and my waning abilities to be as independent, I was starting to question, do I need to go ahead now and retire and you know, and adjust what I’m you know, doing so that I can be you know, preserve my joints and make it through the day. And then I found out about the program, you know, so now I’ll work through social security age and you know, that’s another four years and so, probably not only opened the door to be able for some people to work. For me it extended the amount of time that I’d be able to work full time.
Tony Delisle 20:09
I think you’re bringing up a huge point there that as Yes, as we get older, you know, Father time is undefeated. No matter you know what we’ve done to maintain a healthy lifestyle, the overuse and use of wheelchairs, y’all can talk at nauseam about it very, very hard. The famous Indiana Jones said it’s not the years it’s the mileage, right? And all the wheelchair basketball and all those things do they add up and you have to be able to still be functional? So Christina, or Salim or Carey talk to me about what you feel the importance of having a PCA, and your ability to work is and or what working means to you and the impact that has had on your life?
Christina Martin 20:48
Well, it made all the difference, because I mean, I kind of my identity is my job. I mean, it’s pretty much consumes most of my day conversations and and you know? The first question somebody asked you, you know, when you go somewhere is what do you do, it’s rewarding to be able to say that, you know, that I’m a, I’m a VR consultant. And it kind of surprises people that, that I’ve accomplished that in that type of job. And it’s full time, it’s the 40 hour the week, you know, it’s in and out. And there’s travel with different things that we have to do as far as training and different, you know, aspects of going to the schools and dealing with students and the adults and stuff. And it’s really rewarding, giving back. And I have a real perspective, because I’ve actually been there, I’ve been a client, and now I can provide the services to other people. So it went from, you know, one day I was like, I think I’m just gonna give up, I just don’t think I can keep getting from point A to point B, to Oh, my gosh, I have somebody now, that’s their job is to make sure that, you know, I’m set up, and I have everything I need to make the day. And I’m the most independent, when I’m at my desk at work, I’m productive, I actually do something, it is the most rewarding of anything that I do. It just went from night and day to wondering how I’m going to do this to, Oh, my gosh, I’m able to do this, so that now if I have an opportunity to do a promotion, this would be the first thing I would say, because that’s one thing that they’re gonna look at me and say, Well, if you want to be, let’s say, supervisor, and you drop everything and be in an office, you know, at the drop of a hat, I can actually say, you know, my assistant, yes, I can be there. So it would make a difference in if I’m even able to get a higher position than I have now.
Tony Delisle 22:36
Wow. Beautifully said, thank you, Christina. That that really to me just harkens to the fact that, you know, having a personal care assistant to me is almost like you know, just as natural as having a wheelchair ramp into a building, any kind of accommodation that someone would need to be able to, you know, maintain and sustain employment that should just be there out there, you know, for everybody that would ever need one. Fortunately, there’s a program here that doesn’t allow that. And thank you for sharing that. Salim, Carey, do you have anything to add to that what she said about the importance of PCA and one’s ability to work?
Carey Larabee 23:10
Yeah, I think, you know, your PCA just gives you a lot of confidence to know that, you know, you’re gonna have a chance to get to work and do what you need to do, be independent, and also have a purpose and feel like you’re contributing to society to your country, and you’re, you’re an asset to your company. One of the things that I try to impress on my PCAs, when I interview them is that this isn’t just your regular, you know, nine to five job. In other words, if you don’t show up in the morning, I don’t get out of bed, which means I don’t get to work. And so it’s really, really important. It’s really important to find someone who’s dependable and accountable, and it’s made all the difference in the world for me. I was never able to play sports, but I’ve always loved sports. And I’ve found different ways to be a part of sports, whether that be play by play broadcasting or working in community relations aspects and doing all kinds of things related to sports and things that I’m really passionate about. And without those PCAs you know, none of that would be possible. Particularly with the transportation aspect of it.
Tony Delisle 24:36
Huge. All of this, your way you’re describing this as like being a part of this program is almost like winning the lottery in many ways. So that doors of opportunities and the lifestyle that allows people to have who are willing to work hard for it and it’s just amazing.
Salim Nasser 24:52
For me, it’s it evens the playing field, is what it does kind of evens where we were already we’re already at a disadvantage right? Look, able bodied people don’t have to worry about paying somebody to get up in the morning or go to bed, right? Right is the most basic of necessities. For me, it’s kind of helps level the playing field. So I could, you know, I can participate and not have to be at a disadvantage, particularly economically because I have to spend so much money just to get it just to get ready for the day or night. So that peace of mind for me it’s peace of mind, because I’ve acquired it. But the worst thing about being a paraplegic, is that having to depend on somebody for getting the bed getting to bed or getting up I can deal with everything else there anything else I can deal with? Yeah, that depends that depends that part of the you know, that everything in my life to try to become as independent as I can, I drive, I live alone, you know, I, I have everything set up. So I don’t need anybody during the day, but they’re getting the bed and getting up in the morning… There’s no getting past that. And so having the ability to pay and have somebody show up in the morning and night reliably. For me, it’s peace of mind. It’s It’s nothing more than that.
Tony Delisle 26:05
Peace is priceless.
Salim Nasser 26:06
Tony Delisle 26:35
So the urgency of this conversation has a lot to do with that. Right now the state legislature is considering a budget, a budget that would allow an increase in funding for this program from general revenue that I would like to bring in Jane Johnson to provide a quick summary of what’s in play here and why this conversation matters. In terms of where we are right now in the legislative process, which I believe we’re in the first day of a three day cooling off period, where they’re going to be considering the House and Senate version, so their budget and some reconciliation, all these other things that Jane Johnson has been teaching us on legislative updates. If you haven’t seen them, go see them. But anyways, Jane Johnson, talk to us why or set the context for the reason why this conversation is so important and why people need to hear it.
Jane Johnson 27:19
Alright, but Tony, you can’t get mad at me if I correct what you just said. Okay, so this is the change to the funding for JPAAS is coming through a bill that will impact the budget, but it won’t be a budget appropriation. The way this program works is that FACIL contracts with eight State Attorney’s offices around the state to go after people who have not not paid their sales tax. So the State Attorney’s, actually they work with the Department of Revenue, they find people who haven’t paid their sales tax, and they work out settlement agreements with them in lieu in exchange for not getting criminal penalties. And that money that they collect goes into a pot and this program gets it gets half of it. And then the other half of it goes into general revenue for spending on everything from schools, to healthcare to whatever. So for the past several years, that has worked well, but the amount of money coming into the program has gone down. And so every year the program actually loses money, we operate at a deficit. So we’ve gone to the legislature and found two fantastic sponsors. Senator Aaron Bean in the Senate and Representative Jenna Persons Malika in the house, they sponsored bills to increase the percentage of those funds that we get from 50 to 75%. And that change will cover the deficit. So we’ll be in good shape, we won’t have to worry about cutting the program or reducing the benefit that you receive. Because as Salim mentioned, it’s like a tax. It’s like a special tax that you all have to pay just to work, which is not fair. And it’s just the cost of you working and in addition to you paying PCAs, you’re employing people to so you are both employees and employers, which to me is a double economic benefit. So anyway, so that’s where we are the bill in the Senate has passed the bill, the Senate unanimously and all three committees it was heard by up until last week, it was passed unanimously in the house, it has passed through three committees unanimously. And tomorrow, it’s supposed to be coming up in the house, the house is going to take up the senate bill and vote on it. So if it passes, then it goes to the governor’s desk and the governor has to sign it. It does impact the budget because it will, there’ll be funds that won’t be available for for general revenue. But the the House and Senate have not yet agreed on a budget as of this afternoon. They are hoping to come back possibly later this evening or tomorrow, but they do have to get a budget finalized and on the desks of of the legislators 72 hours before Friday, because the budget has to have a cooling off period which is that 72 hours or three days. So we expect to see a final budget tomorrow. So there’s kind of two things going on at the same time. But for JPAAS though, it is a legislative issue that impacts the budget, but we hope there’ll be a vote tomorrow. So this program is so timely because what I’ve heard today is such a perfect testament to the return on investment and the vital social and economic importance of this program for people who want to work and realize their their full potential and find their identity and work and contribute to society contribute to universities, to NASA, to, to VR, to Centers for Independent Living, it’s just, you guys are really amazing. And I feel more committed than ever before to this program after hearing your stories. So that’s where we are, your stories will be a powerful tool to demonstrate both to the house and to the governor, why they need to approve this, this increase so that you can keep on working and remain independent.
Tony Delisle 30:47
Thank you, Jane. And with this episode, we’re going to be linking up show notes with information of key legislators are related to this conversation that people can contact and you know, let them know what you think and what your thoughts are. For me, it makes from a human and economic costs such a return on investment, you know, for me, first and foremost, because it’s the right humane thing to do, like you said, it’s just equalizes everything. And it’s just the right thing to do. And it makes economic sense, like you said, people are employing people with this as well as working, you know, just from a conservative, fiscal conservative, being somebody that’s not also requiring benefits here and there. But you know, actually contributing to the new taxes that get put out there. It’s just, it’s a win win, you know, just makes sense to me. But if any of you all here, and this will be a full on jump ball response for any of you all, but if you had to say anything to somebody that might be listening, that’s a decision maker or somebody that would be willing to advocate and contact any of the people that might be linked up in the show notes to let them know what their point of view is, what would you have to say to that person, that decision maker that potential advocate for a program like this?
Carey Larabee 31:53
Just to know that, that their decision is really impacting lives, and how powerful that that decision is. I think many of the assisted daily living activities that we’ve been talking about are many that, you know, able bodied people take for granted. And I think, you know, with their vote, they can really make a difference. I mean, it’s just huge.
Tony Delisle 32:24
I can see where people take it for granted. Go ahead Dug.
Dug Jones 32:26
I think, you know, to expand a little bit on a point that you made, no matter how you analyze this, whether you look at it from the feeling perspective, in terms of whether it’s an opportunity to help people, you know, have success and dignity and in those types of important characteristics, or whether you look at it just simply from return on investment. It’s it’s a, a yes, decision either way. You know, you look at the amount of taxes paid by by persons with disabilities who are working persons with disabilities, you look at the cost avoidance piece of what the expense would have been for someone who didn’t do that. And even for somebody who isn’t persuaded by the, it’s the right thing to do for human beings piece. They should be persuaded as well by the business by the business logic behind it as well.
Tony Delisle 33:19
Thank you, Dug. It makes financial sense. It makes heart heartstring sense. It’s one way to be a no-brainer. Anyone else? What would you want people to know who are going to be a decision maker on this and or somebody that you could be an advocate and voice their perspective about this topic?
Salim Nasser 33:36
Carey and Dug put it pretty, pretty, pretty well, I can’t I can’t help how I could expand on that. I mean, it’s a no brainer, as far as I’m concerned. I’m not sure how you would think that it wasn’t a good decision to make.
Tony Delisle 33:48
Right? I think it’s an awareness piece. And Jane has been very helpful. And so have you all been really helpful in raising attention and awareness of a program like this. And as you all know, just the knowledge of the opportunities or resources out there is a barrier, and people not knowing about this, and I hope more people can learn about this program, whether they’re deciding on it for now on the budget, or want to advocate for it or be a participant on it. I think the more people know about this program, it just makes sense to be supportive of this program. So yeah, that’s huge that you all right now coming together and been such advocates for the program, because I know we wouldn’t be having this conversation right now if it wasn’t for people like you going out and telling your stories. This isn’t the first time you told your story, been on a platform and advocated for this program, you’ve done it many different ways in many different levels. And here we are having this conversation because of that.
Jane Johnson 34:37
And Tony, if I can just add real quickly that we wouldn’t be at this place where we are where these bills have passed to each of their committees unanimously. Because I know that you all of you have been reaching out to your House and Senate members and asking for their support. It really makes a difference. It was not anything… I mean, I’m up here, letting you know what’s going on in Tallahassee, but really the difference is when a legislator can put a face to a program or a face to an ask. And they can actually understand what it’s about that it’s not somebody lobbying, it’s a person, person explaining an economic solution to a vexing problem, that usually costs 10 times more, because people are getting public welfare benefits. So I have to really give the credit to all of you on the program for your advocacy, I cannot stress enough how important it is for individuals to have their voices heard by your elected officials. So thank you. Thank you.
Christina Martin 35:26
One thing I tell people is like disabilities can happen to anybody at any day. So any walk alive, so you sometimes you can be born that way, sometimes you can, you can hit you at any any life point, you know, so it could happen to anybody. So just set yourself back and say, you know, what you want someone that would be be there to be confident, and an advocate for yourself that would allow you to do things that, you know, maybe some things that were taken away from you. And so it just, I tell people, and it’s by word of mouth, it’s just, it’s the way you live. And that’s, you know, it’s you appreciate everybody that’s in your life. But you know, that there’s also that, that point that it’s business, that it’s just nice to have that confidence that, you know, it’s, you’re not relying on loved ones, or people that are, I don’t want to say that they’re obligated, but they’re doing their job, like just like you’re doing your job, and it’s business. And it’s it’s a, it’s rewarding that way, It’s great to be about it and not just talk about it, that’s for sure.
Mark Brisbane 35:55
It is all about attitude too, when it happens, oh, man, you kind of just, everything slams on the brakes, and then your mind starts clearing up some. And then you start getting an idea of how you want to approach it. And where do you want to go? Me personally, and I’m not speaking for these guys, and we’re maybe I am but I made a choice at a young age that I didn’t want to be home. I didn’t want my mom and dad taking care of me, I’m going to roll the dice, I’m going to go somewhere, I’m gonna jump outside of the box, I’m going to head to Orlando, Florida, leave a little small town up on the Florida Georgia line, learn how to be independent, get a job, and keep going the best way I can to be what the term normal as I could be with a disability. And I’ve been doing it now, man, this makes my 24th year straight of working 12 at 1, 12 now, in Gainesville, the Center for Independent Living almost Well, it’s very rewarding if you push yourself to accomplish those things, and not give up, don’t quit. If you quit, then that’s it, you know, life expectancy, you with your disability is just going to jump on top of you, you’re going to have a much tougher time. And then you’re going to you know want to depend on people to do for you. That’s the wrong thing. You know, I got twin girls and a wife. But I still, as I try to look at it every day, personally, like I’m all by myself, you know, I’m living by myself, I try to do as much as I can. So it’s not all only on, you know, there’s enough on my wife already and anyone I have to bring in to help me do things. So but it gives you confidence, it helps a ton with your mental and as well as your physical, physical and emotional, you know, mindset. But um, I just wanted to add that. I really like the way Christina put that.
Tony Delisle 38:28
Me too, you’re like you were saying it, persistence is so needed to get through these tough times. And as you were saying, Christina, when when you’re at a time where you didn’t know what was going to happen, and then here it is that you have a program that can really allow you to continue on. It takes persistence plus opportunity sometimes. And it’s just wonderful to hear what you all have done with this opportunity to make the most of yourselves and to achieve and to be the best version of yourself and then to give back to others. Seemingly everything that I’ve heard today, one of the threads that you all have shared, is that your interest in wanting to help other people that are going through perhaps what you’ve already been through, as well. And I just want to acknowledge you all for that as well as that this year lifting yourself up, but you’re lifting so many other people up by being who you are and allowed to live that independence.
Carey Larabee 39:17
One question I have for you guys. It’s kind of a trivia question. But I think it really puts into perspective what this program is all about. And that is what’s the biggest room in the world? Does anybody have a guess? The biggest room in the world is the room for improvement. So it gives us the opportunity to get better every day.
Tony Delisle 39:46
Mic drop, that is beautifully said. I look forward to inviting all you all on for one on one interviews another time too as well to get the gang together and talk about other things that I think would be really important for us to talk about that go well beyond even what we’re here to talk about in terms of the JPAAS program that I know you all have to offer and share about a wide range of topics and issues. And I think you all taken the time out of your very busy schedules to be able to be here, whether you’re working in nonprofits, whether you’re working at universities, whether you work in a NASA for the state of VR, the Wide World of sports, for the state of Florida associations, percentage for Independent Living, you all are movers and shakers, until align the orbits where everyone can get together and have an important conversation that needs to be heard. It is much appreciated. So thank you for lending your voices. Thank you for lending your time. And thank you for all that you do. And until the next time, onward, and upward.
Jane Johnson 40:40
Thank you Tony. And thank well thank you all, but this was great. Really, really great.
Christina Martin 40:44
I enjoyed it very much. It was… Yeah, it’s nice.
Mark Brisbane 40:48
It’s awesome, Tony.
Tony Delisle 40:52
Well, we’re gonna be linking up in the show notes contacts for key representatives and senators for deciding on this and the governor, for people to advocate for whatever their point of view is about this program. And whether or not it is worthwhile, but from a human and economic cost. It really makes sense. It’s a huge return on investment in both areas. And here’s a conversation with a group of people of why that just makes complete sense to be able to support what we call a no brainer and hear, and meet some very exciting people who are recipients of this program.