Podcast Transcripts

Self-Advocacy and Youth Leadership with Sarah Goldman

Sarah Goldman is the Director of Administration and Youth Initiatives at the Florida Independent Living Council. Having previously worked as a legislative aid and being a voice for people with disabilities, she talks about her experience and journey in advocacy. Sarah unpacks what it takes to be an advocate for people with disabilities, the challenges she’s faced and how its helped to shape her into the best version of herself so that she can better serve others. Sarah provides us with a lens into what its like to be young with a disability. She talks about how having a disability has given her a strong foundation for resiliency, the ability to adapt, and having an open mind. Sarah is an advocate for youth leadership and talks discusses the importance for self-advocacy for people with disabilities at a younger age.

To learn more about The Youth Leadership Forum and how to apply, visit: https://www.floridacils.org/youth-leadership-forum

SPEAKERS: Sarah Goldman, Tony Delisle

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Florida Alliance for Assistive Services and Technology With Whitney Harris

Whitney Harris is the Executive Director for the Florida Alliance for Assistive Services and Technology, Inc. (FAAST). Whitney is passionate about creating a reality in which all people are equal and have equal access. Her disability advocacy work started in 2008 when she joined the Florida Youth Council and became a volunteer at the Florida Youth Leadership Forum. Being inspired by others who have disabilities has led her to become an active member on the Board of Directors for three national organizations: the Association of Youth Leadership Forums, the Association of Programs for Rural Independent Living, and the Commission on Rehabilitation Counselor Certification. Whitney’s leadership and involvement with these organizations have provided an opportunity to experience examples of best practices to bring to Florida. At the state level, Whitney is a long-time volunteer with the Florida Youth Leadership Forum and Treasurer of the gubernatorial appointed Florida Independent Living Council. Whitney has a Bachelors of Applied Science in Orthotics and Prosthetics from St. Petersburg College, a Masters in Nonprofit Management from the University of Central Florida, and is a Certified Prosthetist (CP).

For more information about FAAST and Florida’s YLF:
Andrew Gurza: http://www.andrewgurza.com/

SPEAKERS: Whitney Harris, Tony Delisle

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Florida Y​outh Leadership Forum

The Youth Leadership Forum (YLF) is a unique leadership-training program for high school students with disabilities. ​Students participate in a multi-faceted series of online leadership training, role playing, mentoring, job preparation, career exploration and activities to build social and communication skills.

We’re joined this week by two previous participants of The Youth Leadership Forum, who now occupy leadership positions in the independent living network. Whitney Harris is the Executive Director for the Florida Alliance for Assistive Services and Technology, Inc. (FAAST). Sarah Goldman is the Director of Administration and Youth Initiatives for Florida Independent Living Council, Inc. (FILC). In subsequent episodes, we dive more into Sarah and Whitney’s respective roles and hear how they continue to advocate for the independent life.

To learn more about The Youth Leadership Forum and how to apply, visit: https://www.floridacils.org/youth-leadership-forum

SPEAKERS: Whitney Harris, Sarah Goldman, Tony Delisle

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Community Resource Paramedicine and Homebound Vaccination with Ariella Bak

Ariella Bak, NREMT, pioneered and manages the Community Resource Paramedicine Program within the Gainesville Fire Rescue department. She created this program while working as a volunteer  for GFS and attending The University of Florida. Her team goes into the community to address the complex needs that are present and helps to identify the needs that align with the services that CIL provides, such as, access to affordable housing, home modifications, wheelchair ramps, to name a few. It’s this level of community collaboration that allows CIL to serve the independent needs of many people within their community.

Ariella shares with us the innovative program they’re facilitating to address the access and functional needs that people are challenged with for getting the COVID vaccination. People with disabilities, the most vulnerable population to COVID, are experiencing many barriers when it comes to receiving the vaccination. The Homebound Vaccination Program has Ariella and her team going into communities with disabled people to administer the vaccination. She talks about the logistics and the challenges in getting the COVID vaccination out to the community.

SPEAKERS: Ariella Bak, Tony Delisle

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Center for Independent Living Jacksonville with Tyler Morris

Tyler Morris is the Executive Director for The Center For Independent Living Jacksonville, covering a 5 county catchman area. His phenomenal staff at CIL Jacksonville provide a wide variety of services to the communities they serve. On this episode, we get to hear insights from Tyler ranging from equality, diversity, intersectionality to disaster preparedness related to people with disabilities. We also spend time talking about the youth and their leadership role in the future of disability. In this new age, Tyler discussed different and creative ways to market Centers For Independent Living so that we can ensure we do the work to get the word out there about how CILs can help people achieve their independent goals.

To learn more and to connect with CIL Jacksonville, visit: https://www.ciljacksonville.org/

SPEAKERS: Tyler Morris, Tony Delisle

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Service Animals and Human Services with Laura Lee Putzback

Laura Lee strives to empower individuals with disabilities to become highly skilled service dog handlers who have access to a safe and inclusive community. As advisory board chair for New Life Medical Service Dogs, Inc. she co-authored the person-centered curriculum which focuses on awareness and impact of disability when using a service animal, dog handling skills, and the rights and responsibilities of service animal owners.  She is certified by the University of Missouri as an ADA (Americans with Disabilities Act) coordinator. As the lead advocate with the Service Dog Alliance of Florida, she conducts business and community education, manages the warm line to support service dog handlers and local businesses with information and referral services, and assists handlers in navigating employment, housing, transportation, and pubic access issues. She has 30+ years’ experience in the delivery, design and management of public and private health and human services.  She has managed community-based programs for the disabled and elderly. Laura Lee is a two-time recipient of the City of Virginia Beach Creativity in Public Service Award (1993 & 1997). As a volunteer her leadership has built organizational capacity.  Those roles have included:  George Dame Federally Qualified Health Center Vice President, Leadership Citrus Board of Governors Chair, NAMI Florida Board of Directors, Florida Local Advocacy Council (Gubernatorial Appointed) vice-chair and United Way of Citrus County Treasurer. 

Americans with Disabilities Act https://www.ada.gov/ 
ADA Coordinator Training Certification Program https://www.adacoordinator.org/default.aspx 
Service Dog Alliance of Florida: 352-410-6500 / servicedogaf@hotmail.com 

SPEAKERS: Laura Lee Putzback, Tony Delisle

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Center for Independent Living of South Florida with Peter O’Connell

Peter O’Connell is the Executive Director for The Center for Independent Living of South Florida, located in downtown Miami. Peter and his staff serve a diverse population, staying true to the independent living (IL) philosophy, and therefore, all of our services are person-centered. The consumer, along with their family and/or support system, identify the services needed, and together with CIL staff, map out a plan that guides every consumer in achieving their independent living goals.

For more information about The Center for Independent Living of South Florida visit https://www.cilsf.org/


SPEAKERS: Peter O’Connell, Tony Delisle

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High School High Tech with Arlene Jennings

Arlene Jennings spearheads CIL’s High School High Tech program, which exists to assists students with disabilities in making better more informed decisions about their career and their futures. HSHT is structured according to the nationally recognized, evidence-based Guideposts for Success: School-based Preperatory Experiences, Career Preparation & Work Based Learning, Youth Development & Leadership, Connecting Activities and Family Involvement & Support.

For more information: http://www.abletrust.org/
Contact: ajennings@cilncf.org


SPEAKERS: Arlene Jennings, Tony Delisle

Tony Delisle  00:00

Did you know that if you’re a student with a disability in the state of Florida, your graduation rate is around 65%. So 65% of people like you, as a student with a disability will graduate high school compared to around 88% of high school students without a disability. Did you know that the Center for Independent Living of North Central Florida offers a program called the high school high tech program, a program that we offer in five of our counties, a program that’s run in 40 some odd counties in the state of Florida, has a graduation rate of around 99% of students in its programs, does graduate high school, not only do they graduate high school, but once they graduate high school, they are by far more prepared for what life out of school looks like. These students have been in school for 12 or more years, the majority of their life, you know, nearly if not more than two thirds of their life has been spent in school, and now they’re out of school. And that’s not the time to try and figure out what you’re going to do. High School, high tech offers the immersive opportunities for its participants, the students with disabilities to explore different career opportunities that they may want to get into after they graduate high school. They do this through a different amount of program components that you’ll learn in this interview. But this is such a critical program and other programs out there like that, that are delivered by Centers for Independent Living that focus on what we call youth transitions. youth who are teenagers transitioning out of high school into post secondary life young adulthood. This is a critical juncture in the human growth and development. What happens during this transition can be largely predictive of the quality of life and even the longevity of life of people throughout their lifespan. This is a key transition in our growth and development. One that we are very excited to have a program that helps people succeed during this critical time in one’s life. So I’m very excited to introduce you to Arlene Jennings. She is the staff program coordinator for our high school high tech program. She’s got a tremendous amount of experience lived experiences and professional experiences that just make her an excellent resource for parents, for students and for her co workers that helped to deliver this wonderful program that is so just critical for students with disabilities to become successful young adults, older adults with disabilities and to live the best independent life that they possibly can. So I’m just so excited for Arlene Jennings to be with us today. All right. All right. Welcome back for another episode of The Independent Life and I am so honored to be joined with Arlene Jennings. She’s comes from our high school high tech program. She is the program coordinator for the program that program staff coordinator. She has a lot of experience in working with this great program which has to do with high school students with disabilities. Before we jump into this, Arlene, I was reflecting coming into this interview about one of the reasons I just really loved the high school high tech program and always have since coming on to the center, I think it largely has to do with when I was in high school, one of the most influential adults in my life ever, up until that point outside of my own mother and father was my high school biology teacher who also happened to be my swim coach, the impact that this man had on my life and the trajectory that it was on and to this day, the values that he helped to instill with me lives with me. So I did go on to be a high school teacher and coach and did many of those kinds of things, the largely due to his influence. And when I look at the high school high tech program, I see yourself and I see the other high school high tech coordinators who offer that same kind of opportunity to students to be this transformative adult figure in their life. Where if the students are open to it, you all would have I believe the same impact that this his name was co tre had on me. And it is a beautiful thing. And wonderful that you’re in that position to offer that and that’s one of the reasons when coming to the center here. I just really love that this program is offered and it is out there and wonderful people like you are on the front line. So you tell me online, the high school high tech program, what does it look like? What is it?

Arlene Jennings  04:50

High school high tech. Wow. It’s a lot. We can definitely sum it up to a career exploration program for high school. Students with disabilities but we definitely have so many goals in mind. But the main three is definitely to help them graduate through this really tough time. You know when high school it’s a jungle out there, but the the main goal is definitely we want successful graduation rates, high school Tech students have 99% success rate going through the program versus not with students with disabilities. For sure.

Tony Delisle  05:30

Yeah, high school graduation rates, I don’t mean to cut you off statewide for students with disabilities just around 65%. So it’s insane, a 99% graduation rate for students. So So first of all, how many counties does the high school high tech program?

Arlene Jennings  05:46

Um, I want to say it’s, it’s almost in every county, there’s a few that are left out? Definitely.

Tony Delisle  05:55

I believe we got Marian or…

Arlene Jennings  05:57

For our catchment area you’re talking about? Oh, well, yeah. Marion Levy, we have alachua, lateral, rural Bradford county and Putnam County at the moment. And then we’re looking to expand for sure.

Tony Delisle  06:11

Yeah, good. So you were in five counties. And I do believe that the high school high tech programs offered in about 40, some odd counties wide? Yeah. So out of the 67 counties, I think they’re in about two thirds of the ones I would never ask you to. County, is it’s hard enough name in the 16 that are in? Yes, it would be great to cover High School high tech program and each of those counties. So you’re in five counties, and roughly what around eight or nine high schools spread out throughout those counties? Yeah, at the moment, in each of the high school, high tech sites, so there’s eight or nine of them that are spread out there through those counties, how many at each of the sites are students enrolled in the program, so how many how many students per high school?

Arlene Jennings  06:55

Yeah, per county we try to go for, we have 15 students per County. And that may sound like a low number, but we do that, because this is such a, it’s such a great program, and we get really personal with the students. For the coordinators, that definitely takes a lot of time. And in order for that, for the program to be successful, we take the time with the students. So we need that the time in the low numbers, but they get so much, you know, out of the program, not just workshops, and you know, the guest speakers and that, but we go beyond reaching to the families as well.

Tony Delisle  07:36

Gotcha, gotcha. And so one of the things that I’m hearing there that’s really important is that it’s a holistic approach that you know, you really do get immersed in the lives of the students, and that does take a lot a bit of time. So that’s really good to know. Again, I really do believe it’s these connections in the close relationships that you all offer these high school students that are going to be the really transformative piece of really seeing the opportunities that are now out there because they’ve opened up themselves to you in the program and what has to offer So tell me, what does the program look like like you mentioned their workshops with you know, someone enrolled into this program, what are the different program components that they would expect to go through once enrolled into it?

Arlene Jennings  08:15

So once they get in there, but you know, we have bi-weekly workshops that we cover, like a vast range of different topics, whether it be interviewing skills, job skills, we work with, trying to prepare them as best as we can. So they will be ready to to be employable to get a job and then also to to go into a post secondary education you know, whatever track they want to go into, just prepare them for the real world out there. We bring in guest speakers of different backgrounds, we first start off with a career assessment just to see where they’re at what their interests are. And we can kind of build from that we also know not just the assessment like okay, it says if you want to be you know, a doctor but so we’re just gonna bring in doctors but also you know, what, what they might have interest other interest for. Our goal is to seek those different industries and careers in our local area, and then bring them to the students. So like I said, the guest speakers we also have industry tours, that we definitely love pre-COVID.

Tony Delisle  09:33

You’re, you’re going on site to some really exciting places in the community. Yeah, no, that really universities and other really high tech industries that are on the cutting edge of doing some things and even some, you know, industrial manufacturing some wonderful things. Yeah.

Arlene Jennings  09:50

Yeah, definitely we’ll all backgrounds but now actually, now during COVID is even I think they have a bit more opportunity. there because we’re doing virtual industry tours as well as field trips, and job shadowing. So on a weekly basis, we send them that information and still keep the information flowing to them. So that way, now that you know, they’re at a computer screen, but they can still get that tour, and learn a lot more about this particular industry. So they’re still getting that information.

Tony Delisle  10:23

It’s really good to hear technology being used for those means. So to summarize what you said, the high school high tech program offers bi weekly workshops on topics that are relevant to the interest of the students, and perhaps career paths and opportunities that they would maybe want to consider depending on their interests, the career assessment that you did at the beginning, and then bringing in the different guest speakers that might be in those industries to talk to them about what is really like the idea of it, and the reality of it, you know, kind of coming together. You also said before COVID, it was on site, it tours of industries, campuses, universities, but you also mentioned job shadowing, and internships, you know, and those are offered in the summertime, and many of the students take advantage of paid internships to be placed in some of those fields and industries that they’re shopping or seeming to be interested in. So yeah, that’s a lot to offer there, you know, throughout their experience, and what I really enjoy about these program components are is that it really is aiming to prepare them to be in the best position possible for when life happens after high school, post secondary is what we call it, that transition there from gubin. In high school, very structured, very, you know, kind of you’ve been in that system for 12 plus years is really what you know, for the majority of your life is that, and then to go into what’s life afterwards, like that, and to not be prepared, make that very difficult times, but it just sounds like what this program, they’re constantly being exposed to opportunities for, when that time does come, they’re gonna have way more insights into what they like or don’t like, and where they want to go and take their lives during that formative years. So you know, that’s just…


Yeah that’s important, that’s the difference between, you know, regular school, and then High School high tech, because it just gives them that holistic approach to what they want to do. And our goal is just to make sure that they are, they basically they can narrow it down to now they know, and they’re confident on what they decide on and then can focus on that because a lot of times, when you don’t have, you know, students don’t have that opportunity to leave, you know, job shadow or do an internship somewhere there, you know, out there, and then just trying, like, it’s just basically trial and error. And it’s like, if they can get that done, while in high school, then even better, they’re, they’re on their way to doing what they love. So are you know, we’re trying to figure out what they love, and it’s just like, oh, man, that’s a great program, I wish that this program was around when I was in high school, for sure.

Tony Delisle  12:59

It’s such a formative time in our, in our brain and body and the social things that are going on during the same time, and you’re trying to navigate these important decisions of what you like, and you don’t like and, you know, I imagine you’ve gotten some really good insight into some of the experiences that the students with disabilities who were in high school go through. So what are some of the challenges that you see across the board, in terms of students and or their parents with disabilities while negotiating? 

Arlene Jennings  13:26

Yeah, just trying to find resources out there, you know, because I hear a lot of complaints from parents of, there doesn’t seem to be much for my student out there, you know, and who do I go to for help when they when they need even advocacy, you know, for an IEP, you know, getting their, their accommodations, and they have a lot of challenges out there. And so we’re there not only as high school, high tech, we do advocacy for them, you know, when it comes to like, say, their IEP, and they’re not, you know, getting their accommodations and stuff like that we don’t we also join them in their IEP meetings, just to make sure that they’re getting those services and other services that they may be missing out on. And definitely another challenge for those students is, after high school, they’re like, well, now what, you know, and I seemed like a lot of times they feel like their student, or their child is left out, you know, the regular, I will say, you know, the normal thing after a student graduates like, oh, we’re going off to college, but it’s like, well, there’s, there’s so much to that process as well, you know, and a lot of times we have grandparents that are raising their, their grandchildren, and they have to figure that part out as well. There’s so many and I connected them into the community, just like Well, where do I go for this information and thankfully, though, definitely is a big resource for them. You know, not just high school, high tech, but you know, other programs and so that high school program is That, that gateway for them, then they go in and get the help that they need not just for them but their family. And then their family goes and spread the word as well.

Tony Delisle  15:10

The best way to spread the word and speaking of words, tell Nova Joy we said hi. Thank you for sharing mommy for the interview. Beautiful to hear. can see the beautiful, beautiful? Five months? Yeah. Okay, Nova Joy. I love it, I love it. So I’m really glad that you brought up the biggest challenges is resources. In our field, Human Services is typical, understaffed, underfunded on having the materials as well. And that’s certainly out there. For a lot of families and students with disabilities. That is a reality. However, there are often resources many of us are not even aware of, right underneath our nose sometimes, and it is coming across an agency, like the Center for Independent Living, or the high school high tech program. And that can be a doorway, like No Wrong Door is sometimes being talked about now is like, once you go through this door, we can lead you to other doors that have resources. So no wrong door once you get to us. So I love that you brought up that point of this aspect of the program, but also the habit. So above and beyond the bi-weekly workshops, and whether it’s virtual, or on site, industry tours, or the job shadowing, or the internships, it’s real advocacy. And this is where he said I think the holistic approach at the beginning, where you really let off and saying, we really get into the lives of the people that we’re working with. It’s real immersion, like a lot of this is immersion, you know, immersing people into the experiences versus telling them about it, all these emerging kind of things, and to be a part of an Individualized Education Plan. Meeting, IEP meeting with parents shows a level of trust and assurance that we’re here for them to advocate on their behalf during these important times where decisions are needing to be made with school officials and school officials can know that we’re here to also be an ally with them as we’re trying to really work together and those kinds of things. So I really am glad that you’re highlighting, you know, that important part of it and everything else. And to that end, do you have any like recommendations like if you, you know, in terms of being able to collaborate with schools, I know you also do a lot of work with the high school high tech program on that. And as all the other coordinators do, in terms of building relationships with the high schools to get the approval to run the program. Often you’re asking, we’re asking the schools for your time and space and access to information. And so it’s a relationship that obviously has to be forged there. So do you have any like recommendations or tips or experiences and in what it’s like to collaborate with schools and to get buy in for programs like this or anything like that they can get the inside scoop for other people that are really talking?

Arlene Jennings  18:00

Yeah. Definitely the statistics, showing the numbers and letting them you know, being transparent and letting them know like, this is a great program, we do we keep numbers, we can show them the success rates, graduation rates definitely exceeds. And then also, we focus on getting testimonials from parents and students, past students as well. Because word of mouth is is most important, the results speak for themselves. Once you left, the school officials know what we’re about what we do, the commitment that it is from the student and also you know from them, it’s minimal commitment, really, we just need the help of you know, just help us select the students because they know which students are most you know, motivated and just ready to go and that’s pretty much it, show them the numbers and once you’re in the program will speak for itself. But definitely I think schools who can see that their students with disabilities need more support is great, because when the schools can be there to support the ones with disabilities, especially because the numbers are climbing, you know, each year, there’s different diagnosis of disabilities that are out there. So when it becomes like the majority then it’s like, okay, we have a lot of these students and they need resources, they need help. So it’s like why not have high school high tech in there along with VR and you know, all the other all the other agencies because they need as much help as they can get, you know.

Tony Delisle  18:07

Yeah, it’s a real all hands on deck, you know, approach when we really look at like you were saying the, you know, the sheer number of students that there are in the school system in the state of Florida, it’s a very big state, and then that percentage of students that have disabilities, and then the resources that are potentially there for them again, we always can do better and, you know, having more qualified professionals who have their heart in the right And, you know, more funding to do some of the services and programs and materials and everything. I want everybody to hear what you said about how, when you make contact with schools, you shown the data from the program, I know the abl trust who holds the contracts for these high school high tech programs to be run has a lot of benchmarks and are very quiet, you know, viable and their assessments or their programs, and you have these important numbers about the benefits of the program, the graduation rates, all these other kinds of things that really, you know, speak to the logical rational data driven, you know, kind of mindset of decision makers and public schools would say, like to be very data driven, but then to have the testimonials I’m really glad that you brought that in, you know, from hearing it, whether from students or parents with this program is meant to them, what it’s done for them, and all those other kinds of things then gets to the other side of the heart. And and, and I really do think both of those levers of the mind and the heart really need to be pulled in when we’re working with, you know, you’re collaborating with people, and certainly the high school high tech program has got both of those going for it. So what have you found? Have you found like in the, in the COVID pandemic? Are there more barriers? And if so, like, what have you done to you know, get get around them in terms of collaborating with schools?

Arlene Jennings  21:13

Oh, yeah, for because, you know, everyone is used to them soon be the old school face to face. That that definitely is challenging, when you can be there in person to, you know, give a presentation and say, Hey, you know, this is what our program does is what we’re about, you know, because you can, they can feel that once you’re there, you know, that that’s a bit of a barrier, you know, especially like reaching out to them. So we’re trying to, you know, tack them down with emails, and sometimes it’s not always, you know, yeah, for sure.

Tony Delisle  21:54

Yeah. Well so speaking of that, you know, with COVID and being distanced and the importance of like you’re saying contact and I can’t think of a more important time in terms of you know, human growth and development that is more important to have that peer to peer contact than in adolescence then in high school and here they are in a time where they’ve been stripped away of a lot of that on top of having to go through high school and then you know, negotiating that with a disability so you can you talk to some of the experiences that you’ve seen from the students that you know, have disabilities what are their challenges now? Are they are you seeing anything unique or anything else like that, or you know, that connectivity?

Arlene Jennings  22:33

You’re talking about right now, what you’re seeing right now? Yeah, for sure. Because they definitely especially the ones that we had, you know, years prior they they definitely see the difference? You know, I hear a lot I wish we didn’t have our meetings, you know, together again, and we know we can go on industry tours, of course, you know, and then even trickles down into internships because they’re not able to do an on site internship as you know, as much as they were able to before so they definitely miss seeing each other being there as a group together. They do enjoy the virtual workshops that we have on zoom, and at least getting to see their face. You know, we did something really different this year. We always have a holiday party in December and we, you know..

Tony Delisle  23:26

Ended the year especially. Yeah, another program component that is really fun.

Arlene Jennings  23:32

Oh yeah. The month yeah, I feel like they enjoy that a lot. So we that looked very different this year, we did it we had a virtual holiday party. And you know, they play games and had fun and you know, to all of our surprises like that was it was fun, you know, as fun as we could make it. And they they really enjoyed themselves and then we distributed like prizes later on. So everyone who participated definitely got you know, a prize and we just had to deliver that at a later date. Things are possible.

Tony Delisle  24:07

Very creative. Yeah, I think at the end of last year when everything was shut down for graduation, and we usually have an end of the year celebration and really celebrate all the participants and you’ll give out some awards and have even some alumni come back so in this year, I think you all delivered a lot of like goodie bags and all kinds of other treats and assortment acknowledgments out to people where they lived and that was a huge.

Arlene Jennings  24:31

They really enjoyed that, they did and you know, and each coordinator can be as creative as possible. So I, I didn’t believe they have the graduation balloons. And we do a certificate or participation graduation certificate and just really thanks them for being in the program and to show that we appreciate them that’s really at the end of the day, you know, just being acknowledged is important to them, but when we actually got to go to their house and deliver it, you know, that was that was the whole Another element there yeah and the parents definitely really appreciated that as well yeah I think it was just that next step that you won’t get from school you know school they’re gonna kill her stuff but you know you know it’s definitely good I call it you know we’re like another parent Just think of it as like another I would say it’s not really a parent like oh you better do you know as in discipline but just more of an ally another link because they say it takes a jungle to raise a child right? But and so it’s just like once they are in the program they it’s much more they become a family they become part of the family and then it’s just like I make it my personal duty that just to be sure that they’re okay checking in on them not just the students but the parents as well. And is there anything that you need asking that question Is there anything that you need to know Yeah, and when you’re able to sit and listen you learn more of what’s going on or even if they like they say no, but you know, I’ve been having this issue with getting food and it’s like oh, did you know that we have a program that actually you know that has food you know, and we can and then arranging that setting that up just makes it so much more you gain their trust with that if they know that you have their well being at hand you know, and…

Tony Delisle  26:26

Yeah, we’ll wrap our big service arms around these families like he said, we were able to get some food over to some families that were experiencing some food insecurities because a program that we picked up and I love it when our programs work together across each other and this has definitely been one program hi sky tech, you know Vinny that does a lot of this you know cross program working I know you do with our employment programs as well. What is it you would want other people to know about high school students with disabilities and their families or anything that they’re there about? we’re doing we’re working with them for so long as you have been you know, I’ve know you’ve probably met so many and all different kinds of types and what would you want people to know through the experiences that you’ve had with them?

Arlene Jennings  27:21

I want them to know it’s just it’s a great program and you just become part of such a bigger family you know, definitely build a lifelong lifelong memories that you’ll you’ll keep and you’ll always you know you’ll always have that and then also you make lifelong friends as well a part of that a lot of the kids they they now they’re from even from different counties they stage numbers just because you know we went on a field trip together and now they they’re friends you know and so whenever they meet you know, over at a workshop, you know, a virtual workshop now that we can all see each other more like Hey, how’s it going and then join me We’ll talk later and also and this great, it’s really great, it’s a great great family and then also you know, students they reach back out to us once they graduate you know, it’s not over it’s not over then you know, we’re here. We’re kind of like, like honestly, it’s just a family.

Tony Delisle  28:25

It’s like the mafia family family you know. Arlene you got so much energy and enthusiasm and joy in what you do and you lead with it and and so what what is it that motivates you about this program? It seems something that really inspires you you know, what about it really inspires you and makes you so enthusiastic?

Arlene Jennings  28:52

I have a love for helping others really think with anybody who works in this they have to have that passion though to help others but also working with students with disabilities I can identify with that and understand especially in high school high school was a big struggle for me was the ending like senior year I didn’t think I would make it through even though you know I maintain A’s and B’s and you know, I was that dude I can make good grades but you know, the support at one point I didn’t feel was there and I struggled so much to the point where I didn’t think I was going to graduate you know, and having a mentor there and I feel like that would have been amazing. That’s part of that’s what I needed. That’s what I needed. And I also was a teen parents. So I know I got pregnant in high school, because going through that it will just rough it was it was tough, and I felt like there were no resources or I didn’t know where to go where to turn and so I definitely like Every day is like, I don’t want a student to go through that, you know, if they don’t have to, oh, that’s like, that’s, that’s why I’m here. Like, you’re not going to go through that, you know, what I did so.

Tony Delisle  30:13

So do you feel like those experiences and challenges you had, as a student, you know, your high school career and as a teenage mom have prepared you to be a better High School, you know, high tech staff?

Arlene Jennings  30:26

Oh yeah for sure. And I think my first year I had a teen mom. And I definitely like I kind of like clung to her and it’s like, Listen, you know, don’t give up you know, I’m here to like a lot of family support as well, but it’s just like, I just I, you know, just want to make sure you know, that they get everything that they need, even just reaching out if it is just reaching out to a teacher, and letting her know, because a lot of times my… But um, a lot of times, like even the teacher like didn’t know, so of what’s going on or, you know, if you’re struggling or Yeah, and if you’re struggling with work, or, you know, giving them that confidence, the lesson like hey, just tell your teacher, you know what’s going on, or just and if they don’t feel comfortable doing that, at least having someone that they can reach out to giving them their options, because at that time, it’s important to know what your options are at a time. Because if you don’t know, then it’s like, how would you get there? You know, so…

Tony Delisle  31:34

Yeah, it’s about knowing where your resources are, you know, again, you know, going back to that just even knowing what’s out there. So would you say that, you know, again, like, those tough experiences allowed you to have, then the skills to that are benefiting you now, and the ability to reach parents reach students and everything else like that. So I guess in other words, you know, we can really learn and grow from our challenges and our struggles, and perhaps, I don’t know if sufferings, overstating it, but you know, just those kinds of things that we go through, can then all of a sudden be what really propels us forward. And other aspects of you give back because of that, that’s just for me, if I’m, if I’m being challenged, or if I feel like I’m suffering through something, or are going through those things, to have a purpose and a for a reason and to give back to others is couldn’t be a better reason that are going through those challenges, or that might be suffering and those other kinds of things. So it’s good to give back, it’s good to give back. Well Arlene, to kind of summarize, you know, and put a bow on everything that we talked about the high school high tech program is run through 40 some odd counties in the state of Florida, in our catchment area of 16 counties, we’re in about five of the counties across about eight schools. And within the each of those is around 15 students per program in which they get immersed into experiences that can really help them better understand what they would like to do once they graduate and leave high school. And those manifests into bi weekly workshops about topics and things that are relevant to their interest, guest speakers that are aligned with what they are interested in doing nowadays is more virtual tours and virtual job shadowing, but still doing internships, as well, some holiday events that happen providing resources to families, like you said, you know, making sure that people know of all the different things that are out there and available to them to be supportive them may be that bridge in connection to all those wonderful things. But also you said as an advocate, you know, to sit in on those IEP meetings to sit next to those family members to work alongside the schools and to be able to do that. And you also you know, really, I think put it, quite frankly in bluntly about how to really get people to collaborate. Show them the numbers shown that it’s effective by that and then pull on their heartstrings. And by doing both, you’re probably more likely to get buy in and, and I love how you’re motivated because of your real life and lived experiences. I don’t think anyone can be a better expert and living through the experiences that you have, you know, being somebody that you said, you know, Did, did have the challenges and difficulties their senior year, being somebody that you know, as a teenage mom, and going through those challenges, you now have a lot of wisdom to share other people that are going through it and can be of comfort and support to them. And I got to tell you, that was really meaningful to hear you share that and it makes sense that you’re such a high quality, professional, but also one that delivers that personal heart along with it. And when you reach out and touch people so I want to acknowledge you for just like somebody that’s just like any for all the right reasons and experiences and connect with so many different kinds of, you know, people and various personalities and especially with high school students. So let me ask you that as a question, you know, what is some of the keys into relating to high school students with disability? That takes a certain skill set, right? Give us some tips! You seem to do it quite fluently.

Arlene Jennings  34:50

It takes some work, but you gotta just keep it real with them because it’s like, you know, it is like, fresh meat walking in. They’ll sniff that out .If you’re not real, like they’re, you know, they definitely, you know, be yourself. Right? Yeah. And just show them that you’re there for them. Because once you go in and and start bossing them around, it’s like, oh, yeah, that’s another person, you know, it’s…

Tony Delisle  35:19

No one likes to be told what to do.

Arlene Jennings  35:21

Right, then if they look at you, like another teacher, too, sometimes they kind of, you know, you have to show like, we’re more like, we’re more than just the teacher, okay, you know, for sure how. I have an open dialogue, you know, ask them what they want to do, you know, because I, I think the most with, even though it’s like four years, I feel like it’s been a while, you know, but each year, I want to do better from the last year, but I realized that it’s what they make it, let them design the course. And you just kind of go off of them, asking them those questions like, Okay, what do we want to talk about what industries we want to get into, you know, like, because I’m, I can give you guys anything, you know, but I want to know what you’re interested in. And even if, you know, you may not want to know, you may not know what you want to do. Because we get that a lot. You know, like, I don’t know what I want to do. And I feel a little insecure about them. It’s like, you know, that’s not fair to ask you what you want to do for the rest of your life. You know, it’s just like, what do you have an interest in? And then, you know, and go off, go from there, and kinda we fill in on? We build on top of that. Yeah, you know, so I think you gave some real good tips there. So so be real, be yourself, be authentic. Don’t be opposed to trying to pretend you’re right, you know, and it’s hard at that age before putting all kinds of masks out there. Yeah. But you know, being being your authentic self and being open, like you said, be open, and communicate, don’t boss people around telling them what to do. And ask them what they want to do. And you know, have them have a hand on the wheel, and creative freedom, you know, to do those kind of things. So those are, I think, some really good applicable tangible tips for any one of us out there that might be wanting to really connect with people in high school.

Tony Delisle  36:52

Let them know you’re there for them. Really, it’s like I’m here for you. So to do this, you know, Show up, yeah, show up and show me don’t sell me. Yeah, they can sniff that out. Well, Arlene, it’s wonderful having you on, thank you so much. For all the great work that you do, I look forward to bringing you and perhaps others, the students, alumni from the program back on here and just talking to them about their experiences, what they learned, you know, where they’re at, where their aspirations are, you know, what challenges, you know what their purpose is, as well and get a better lens into the life of students, high school students with disabilities.

Arlene Jennings  37:55

Thanks for having me Tony, and I’m sure that, I know, I’m sure there’s some that are out there, they would love to be on this show and share their experiences.

Tony Delisle  38:02

Lets get them on, let’s get them on, I want to I want to dive deeper and expand into that world and into the lens of the world. You know, I think it’s important for all of us to recognize and realize, you know, it is our future, they’re real people, and they have so much to offer and to contribute. And you know, we were all in high school at one time, you know, and I don’t know about you, but like, I know, when I talk to other people, we almost I almost feel like I still am 16 in some way. Like there’s this timeless spirit energy, like feeling of, you know, that age and life. And there’s something special about it. And in independent living, and especially in those years for anyone with or without disabilities is is a huge, important aspect that people are going to be growing into and learning. And this program positions, people that are in it to succeed at that critical transition that really sets the trajectory for certainly young adulthood into middle adulthood and late adulthood that transition there. You know, it, it can predict a lot, it’ll predict a lot down the road on what happens. So it’s really wonderful that, you know, you champion a program that really positions people to be in the best place possible to be as successful as possible in a whole list of ways.

Arlene Jennings  39:11

Yeah. And I just encourage, if anybody wants to learn more about high school, high tech, they can go on the website, theabletrust.org. Yep. Yeah. Definitely has a lot of information, resources, but you know, because it’s not in every school. And it looks different in every county to depending on you know, which county you go into, like in the Orlando area, they’re in the school system, you know, and it’s like as a class so on their website, you can see county by county and what coordinators that are out there and you can contact them and then go from there.

Tony Delisle  39:50

Well, it’d be great to have this program in all the counties and certainly we’ll work towards you know, doing that with Abel in our in our catchment area. That’d be wonderful. All right. Well, Arlene Thank you so much Thank Nova Joy for sharing you. Yes. So Arlene to you and The Tndependent Life, we’re out. Onward and upward. Till next time, take care.

Amy Feutz  40:18

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us cilncf.org@gmail.com for call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

The Florida Independent Council with Beth Myers

Beth Myers is the Executive Director for the Florida Independent Council (FILC). She joins us today to talk about how her role and FILC’s role with the independent living network aligns. We hope this conversation helps our listeners better understand the independent living network, how it can better support people with disabilities, and to serve and meet their needs. FILC is responsible for ensuring that Centers For Independent Living have access to effective communication and programs needed by people with disabilities to live the independent life.

For More Information about FILC: www.floridasilc.org
Contact: beth@floridasilc.org


SPEAKERS: Tony Delisle, Beth Myers

Tony Delisle  00:00

Never underestimate the ability of a small group of dedicated and committed people to change the world. Because truly, it is the only thing that ever has. And that comes to us from Mahatma Gandhi. So on today’s episode, we have Beth Meyers, who is executive director for the Florida Independent Living Council, otherwise known as FILC. Coming on our episode to talk about how her role with FILC and FILC’s role with the Independent Living network all aligns. This is a very important conversation to better understand the Independent Living network, how it can be more supportive of people with disabilities to serve and meet their needs. filk is a very important part of the Independent Living network is responsible for a many different things that ensures that we make sure that people with disabilities we Centers for Independent Living, are have access to effective communication and programs that they need to live the independent life. So she’s going to be on board with us today to talk about her role in the Independent Living network. We are, you know, a relatively small network within the you know, different types of services that state and federal agencies that are charged to do their work with, but we are very powerful one. And so that’s why I started the quote, with the ability of you know, small groups of people to make significant and impactful changes in the world. And our need to be dedicated and committed to this change. Because this is really the formula needed to make the impact that we want to see in ourselves, in our community and in the world. So I look forward for your you to meet Beth, she’s an amazing person has a great story and experiences related to disability that she shares as well. So I hope you enjoy this guest will know a little bit more about her, and the Florida Independent Living Council as it relates to the Independent Living network. Enjoy. I am so excited to have you here, Beth and answering some of the you know, questions that are very important for us to hear from you, you know, you and I go back a little ways here and we’ve done so many things together. I know we got really close, you know, during some of our efforts related to disaster and emergency management and preparedness in so many different things. So it’s wonderful to have you here and thank you so much for participating in our in a conversation and and sharing the wisdom that you have.

Beth Myers  02:36

Thank you for asking.

Tony Delisle  02:39

All right, so you know some questions for you. There’s a lot of synonyms for the word disability that has been thrown out there. I wonder if you could share with me a few that you’ve heard not ones that you necessarily would recommend that we use, but but have been synonymous with the word disability, we say disability a lot in this podcast. So I want to kind of like, start asking some of the guests, you know, some of these questions because we do use this word a lot. And words matter. So want to get the perspective of people, you know, so what are some of the synonyms you’ve heard?

Beth Myers  03:09

Okay, well, first of all, it’s yeah, it’s these are words we definitely wouldn’t support using anymore, but it does show the evolution of, of language, words matter, and that the ADA is really a living, breathing component, because the words are changing all the time. In fact, our state laws and federal laws, they’re not even matching sometimes, because they’re always changing. But words like handicapped, challenged, people that might be special needs or mentally challenged, impaired, crazy, things like that. Those are words that you know, historically have been used, and there’s a lot more, but it is evolved. And it’s kind of ironic, because it’s evolved at a very special time in our in our country at unique time in our country. So a lot of things are evolving. And so this is a great opportunity to embrace the, the appropriate language and an understanding that it’s changing. Because it is a new law. Ada is new. So you know, there’s a lot of things that are that are changing with that, relatively speaking as a law goes for our country.

Tony Delisle  04:29

There’s many other books for a while, were 30 years and now and, you know, the D in ADA is disability, it’s used in the medicine, it’s used in education, it’s used in employment law, it’s used in legislature, it’s the adopted word, it’s a word that we use here on the podcast. And and I know it’s a charged word. So just you know, we’re gonna be asking some of our guests that question back and forth, but is there a word that you would replace it with if you had the change it to something better than disability.

Beth Myers  04:57

Well, if you would have asked me maybe six months ago I would have said 100 words I would have said differently abled or our unique ability, something like that. But since we’ve really kind of gone through a journey of understanding that, you know, the, the history and the words and the language and the inequities, it really is about what that individual chooses to identify with, and being open enough to just be flexible to accept that. And that is a that’s, that’s hard, because we would want rules. And you know, we want the, the the words all approved and checked. But you know, I think that this is it’s a different type of, or a different place. And so identity first language is pretty much opposite of what people first languages, which is where we were told to go, you know, your person first not the disability. Sure, now we’re really what’s happening is the identity first language is kind of taking a hold of, of that. So I think we just have to be open to understanding who you know, our fellow human and being okay, and, and being okay with saying, if we say something wrong, saying, Okay, what would you What do you choose to be called, and then understanding what that means, and, and then adopting that, and just saying, you know, my apologies, this is okay, I’ve learned something new today. And that, that spirit of trying to do a little bit, meeting the individual human with the human type of concept?

Tony Delisle  06:43

Well, yeah, you know, and I appreciate how, you know, you threw out there, there’s been a lot of softeners to the word disability, handi capable, you know, whatever, you know, can can be that, but it just seems like there, there hasn’t been, to my knowledge been a consensus on a word that people would land on, and everyone would agree that Oh, yes, that is the word that, you know, we all agree to. And then even people will say, Well, why do we have to have a word? Why do we have to have a label, that’s another interesting discussion, you know, to have as well and I look forward to continuing the discussion. As it is important, I think you bring up a really important part of there and people first terminology saying person with a disability versus a disabled person, and now this shift towards, you know, well hey, you know, want to you know, that’s a part of my identity, that you know, I’m not ashamed of and actually, you know, want to put out there on display as a part of my identity. First and foremost, there’s almost a you know, a lot of pride to the best word, but you know, people that might be proud and want to, you know, have that first and, and there’s there there there is that, but I guess it does go back to the individual in many ways, and you know, how they kind of see it and feel and that is appropriate and respectful. So, a lot a lot to be said here for that. So, another thing I wanted to, you know, kind of unpack with you and get a better understanding from you is, what is it you would want people to know about people with disabilities, so, you know, one of the things that this podcast that we’re trying to offer is a lens into the world of people with disabilities and who they are and what they are about. And even if people have those experiences, I think hearing from someone else, you know, about what they see, you know, people with disabilities and you know, what it means to have a disability and and, and how they see it when other people to know about their experiences is an important part of it. So I would wonder if you could take us through what you what you would want people to know about your perspective and experiences and disabilities?

Beth Myers  08:38

I’ll start with saying they are the reason I even that I’m involved with this community for you know, almost 30 years is because of having a great grandmother, who talked about her sister who was institutionalized and, and died in the institution and how her father who was a physician could not even get out of that, that that institution, and she went into for something that was, was a concern of the families and she couldn’t get out. And so I watched the really the pain of my great grandmother who had to take that with her, knowing that that’s where her sister was, and and she did not have the right and could they could not get her out once she was in. So institutionalization, to me, was really the primary focus of when I started becoming involved at even, you know, at an early age and understanding people had rights. And so people with disabilities have rights to live, where they choose to live and participate in life where and how they choose to participate like everyone else. And And quite frankly, anyone at any time could become disabled. So you know, we have to we have to be We have to understand that it is, at any moment whether it’s a sickness or an accident that we could become disabled. And so back to the your questions of what do I want people to know is I want them to know that it could happen many times to any one at any, any time. And that dignity and a right, the innate right to fully participate in our community is, it’s not a consideration, it’s the right in our country, this is the right, and we should care about that, because we should all care about that. And I think it is really important that there is a self control component. And that’s why I love night owl so much is because of that self control, self determination, you know, that that part of IML philosophy, like speaks to my heart, because it is, it’s so important that people have the opportunity and option to participate in what I think is about as basic of a human rights as you can, is, can be, you know.

Tony Delisle  11:10

I do and thank you for sharing about your grandmother and working to have her in a place where she could be more in the community and less than any institutional care and that really I can see where it has driven you have a tremendous amount of experience in the Independent Living network, both working at you know, the center’s and from what I understand the city and, and now as executive director for the Florida Independent Living Council. So, you know, you you serve a very important position there in the Independent Living network. And one of the things of having you on is, you know, in addition to get your insights into the, you know, different conversations that are had to be around disabilities, we’re going to start to you know, better understand what it is that the Florida Independent Living Council is your role there, how it fits into the Independent Living network, and and, you know, some of the things that people can learn to better understand what it is all about that, that that’s near and dear to your heart here. You know, I was gonna ask you first, what do you see is some of the, you know, current challenges, the biggest issues, areas that are related to people right now, with disabilities that you see out there?

Beth Myers  12:25

Well, you know, taking COVID just putting that on the, on the side for a moment, it’s so important that we keep keep talking about this, because it’s the same challenges that have been around from really the beginning. And so we still have so much work to do. So, you know, when we have education, employment, transfer, they all transportation, they all go together, everything goes together, they interlock, so incredibly, it is something that we can, you know, we can’t get away from, because we’re gonna have to look at this as a broad picture, and then and then start breaking down and making adjustments as we go because education impacts employment. employment is impacted by transportation and housing, health care, is a is a, you know, a 300,000 foot but own, you know, you know, type of thing. But, you know, are you even able to go, you know, receive a mammogram, if, you know, you use, you know, a wheelchair, what, what is what, you know, where are we at with that? And is that not, you know, something that is so incredibly important. So it’s sad that it’s the same kind of topics, however, we’re getting better, but we’re not there. We have a lot of work to do. And and I think the conversation is going to be ongoing with that. COVID is different, a different topic. But…

Tony Delisle  14:05

No, I’m glad you brought all this up. This is why we’re having you on is to really kind of throw out the current issues in the ever present issues and starting out with the ever present issues, people with disabilities are less likely to, you know, graduate from high school, their unemployment rates are two and a half times greater at any one point in time in the economy, whether it’s doing good or bad. The unemployment rates usually two and a half times more in people with disabilities. And we look at health outcomes. Unfortunately, the data shows that people with disabilities are more likely to, you know, have the chronic diseases that are the top causes of death, then people without disabilities, and these are preventable diseases. And people with disabilities are less likely to have access to adequate and affordable housing and transportation and all income, you know, and socioeconomic status and all these other kinds of things are intertwined together. Like you said, is an ever present issue and one that, you know, I you know, it’s really wonderful to be a part of an independent living network that’s really advancing, you know, the the conversation around these areas and to do better and promoting equitable outcomes. And, and and all of it we have our work cut out for us, that’s for sure. Yes, well, you know, and go into COVID, you know, we’re in the midst of, you know, recording this in a time where there’s a race to get people vaccinated, getting people with disabilities as a priority population, to get vaccinated, you know, how people are getting vaccinated in the state of Florida, depending on the county, getting the information out to people getting people registered for it, getting people actually vaccinated, all the access and functional needs that are in play, there are plenty, and certainly can be some, you know, points of discussion for this discussion, and many more to come to have you back on here. Because you and I certainly have a long track record in terms of the mileage at the very least, in terms of, you know, working together with emergency management, Department of Management, emergency management, and ensuring that, you know, we get the needs of people with disabilities met during times of disasters, and this is certainly one, and it’s so wonderful to be, you know, working with someone like you, that’s actually helping to coordinate efforts to make sure that, you know, those, those barriers are mitigated and overcome along the way, and that’s something that we seek to go and do along the way with this platform here is try to get the best communication out that we can get to people about a lot of these issue areas that are unfolding before our eyes in real time. So feel free to feel free to open up that can of worms anytime in this conversation.

Beth Myers  16:48

Okay, by then I think that and I appreciate, you know, what you said and, and I think, you know, for, you know, it’s it’s when we are, when we are making sure that there are distributing, you know, 7000 vaccines are vaccines to the 7000 nursing homes. And and, and knowing that 50% of the individuals who have who have died are It’s the result of nursing home and that type of institutionalized care, saying that we have so the vaccines are going into the the group homes, nursing homes, and, and what we see is program access, which means that, you know, people are not able to get the vaccine, who live independently. So here we have the individuals that live independently that don’t live in, in a institutionalized care facility, and yet our highly are vulnerable population, and their their PCs are going back and forth between people and without being a priority to receive the vaccine, as frontline workers are in hospitals, and and people are going from, you know, home to home to home to home, and with no vaccines available. And so I think we have to understand that, you know, the isolation of COVID has been, it’s been just catastrophic, really, I mean, just unbelievable for our children, in education for our seniors that are at home for our individuals, that people that we serve people with disabilities in home, that are that are trying to follow the rules, right, but they are there, they’re isolated. And in addition to that the process to get the vaccine is not as accessible as it could be because of the communications. All of the communications are down to the counties, all the counties are doing it differently. Some counties are doing fantastic. other counties are not because they they just don’t know. So you know, our skills are so important to to our counties, the sills provide a very specific skill set and knowledge and we know that keeping people at home it’s better for our it reduces cost. And it is you know if we want to talk about the business side of it, but more importantly if an individual is is is sheltering at home and they are at home. We need to make sure that we understand that they still have the access to the vaccine is everybody else you should have act we should have access to it.

Tony Delisle  19:41

I 100% agree Beth and we just had Dr. Vince Venditto. He’s a professor of pharmacology at the University of Kentucky and his studies, you know, vaccines and their efficacy and Immunology. And, you know, we talked about You know, the prevalence of, you know, the impact of COVID on people with disabilities, you know, has been, you know, significant people disabilities are more likely, you know, to have the secondary risk factors that are associated with the COVID vaccine, I’m sorry, the COVID, you know, virus, but yeah, it’s not a priority population, at least in the first round to get vaccinated, unless you’re a person with a disability that’s institutionalized. But there are many people with disabilities that you know, are living at home, that are still just as, you know, physically, you know, vulnerable to getting the COVID vaccine and dying from the COVID vaccine, they’re just not in institutionalized care, but they are in their homes and, and are less likely to be leaving their homes because of their risk. And, you know, what is their, you know, ability to access this, you know, especially when it becomes, you know, their turn to get vaccinated, you know, there’s so much to unpack there in terms of their ability to find out, you know, how, when, and where to get registered, and to get the vaccine and all the different, you know, needs that they’re gonna have along the way, perhaps for for accommodations to be had. And this is a massive lift to get so many people vaccinated, and to ensure that people with disabilities, you know, the most likely to be excluded from something that requires program access and effective communication, to ensure that along the way, is also going to be a huge lift, and I look forward to, to working with you and others and independent living network, and with other people that are responsible for making that happen to make it happen. And being a conduit, you know, to get the right information out to people about, you know, how to do this. And to work with people to mitigate these any of these access and functional needs that we see along the way, it can be very common, and we communicate appropriately about these issues. And and we definitely are creative enough to come up with the solutions, you know, will I think be able to do some real good here in terms of getting the vaccine out to folks?

Beth Myers  21:56

Yeah, I agree with you. I think that what what I’ve found is that, you know, there is a misconception, I feel like within some not all government entities, but some, there’s a misconception that that disability rights are, that’s a negative. And it’s not a negative at all. When we take care of our people, that are Floridians, all Floridians, all taxpayers, all human beings, all people, if we are taking care of our citizens, this is not a negative. It’s like watching something that two pieces of metal that won’t change, you know, won’t give won’t well, budge.

Tony Delisle  22:49

My gears are all jammed up. Yeah.

Beth Myers  22:51

Yeah, the gears are jammed, and you want to say, wait a minute, this is an easy fix, we can help you. I think we have we’ve been doing that during our, our hurt hurricanes that we’ve we’ve had, we’ve stepped up and we’ve done more, and there are there is a wave of pause that where people are saying, hmm, they really helped us with this. And it wasn’t that they weren’t looking at that we help them we’re serving the population, if people were charged for serving, and what they don’t understand it, program access might just mean a process change, it doesn’t mean $5 million, this is gonna cost us to do blah, blah, blah, this is a process change, and your government people will be better equipped to serve all people, all citizens with disabilities. And so I find it interesting that it’s, it’s a negative because it’s not a negative, you know, when I was at a coordinator, I if I did my job, right, I serve our community, and I also protected the process of our government. It can be if you do it, right, both things go to the top. And it’s not, it’s not difficult. You know, disability is like a natural part of humanity. For some reason, I feel like it’s been put in a different category, it’s just a natural part of humanity. So embrace it

Tony Delisle  24:22

That’s one of the things that we really want to put on Front Street here is that it is a part of human nature. You know, I think for many, it’s it’s hard to embrace, you know, it’s a natural part of what it means to be human. And I think it’s synonymous with death, because that’s a natural part too, you know, one that people kind of run from, and maybe disability is you know, kind of a microcosmic of that life can be different after having a disability, whether it’s short or long term. And so it means the death of doing certain things that you might have had, you know, been able to do before seeing yourself as Are you wrapped in your identity and it’s a death of identity or who knows what it is. So maybe there is a you know, that kind of a you know, barrier to talking about it. But I think that those of us that, that do an exercise in that muscle and being able to have, you know, go through that, maybe if people are uncomfortable with it is so liberating. Because on the other side of that uncomfort is the ability to, you know, just, you’ll be real about a inevitable part of life and in to embrace it and not run from it. And you’re kind of like, perhaps the movement of people that want you know, disability first identity first, you know, terminology, you know, to put that out there and, and wear it on their sleeve and not be hidden from it, you know, like many, many people are, you know, so

Beth Myers  25:37

Well, I think it goes, right, it’s so interesting, because you go, if it goes, I feel like we’re talking about the medical and social model of the IOP philosophy that was like, from back in the 60s, we’re having that conversation because having a disability and being disabled mean two separate things. And one of them, you know, you know, it’s so, so under, so I feel like we’re having conversations of, hey, there’s nothing like you can’t you know, you’re you don’t try to fix me, I’m good, don’t try to fix me, I am who I am. And, and that, that, that concept of accepting that in society is what I feel like we’re going back to that medical social model that we used to teach way back when, and it’s like, coming full circle. Yeah. Do we want to or not?

Tony Delisle  26:30

And that’s new for some people, too, you know? Yeah. So. And it does evolve and I think it is an organic conversation. There’s nothing ever written in stone and you know, as time progresses, things, you know, in perspectives, and that’s what’s wonderful about this space, is we get to, you know, have conversations like this about a moving target. You know, that’s why why I’m asking some of those kinds of questions before we really you know, dive deep here on to more specifically about you, Beth Meyers, Executive Director for the Florida Independent Living Council, you know, which represents you know, one piece of the Independent Living network and that’s something that we’re trying to really explain more and better to our audience because it is you know, a vast network that is interconnected, we started explaining about what Centers for Independent Living are, you know, the how we all you know, deliver five core services and some of us have supplemental programs or most of us do, but you know, different programs may look different depending on the area that served and you who qualifies, you know, for programs free, you know, to people and all disabilities, all ages and all these other kinds of things, and grew that out to having, you know, Jane Johnson, Director for the Florida Association for Centers for Independent Living, you know, another piece of the Independent Living network were in the directors for the various senators which are 15 in the state come together and foreign membership, which does all kinds of wonderful things. So that’s another piece of the Independent Living network. And as is the Florida Independent Living Council, so there’s a lot of words here that are acronyms you know, so Florida Association for Centers Independent Living we call FACIL, but for you, Beth, Florida Independent Living Council, and where you are in reside, we call FILC. As a Florida Independent Living Council Executive Director, I want to first and foremost, kind of ask you about your organization, and what it is that FILC does, but more importantly, and as you know, for me, the most important question is why why is FILC needed? Why is FILC important? Why should FILC exist? You know, so definitely a little bit about what FILC is, but you know, why is FILC so important and valuable to the Independent Living network?

Beth Myers  29:00

Okay, you know, just the The major difference between the two FACIL and FILC is that that FACIL can lobby and they can lobby and and and tackle problems differently than the Florida Independent Living Council. The Florida Independent Living Council is called FILC but it is actually a state Independent Living Council. The state Independent Living council there is one state Independent Living Council and every one of our states and including councils.

Tony Delisle  29:36

Spiffy, SILCs. State Independent Living Council, yeah, and I’m pleased about there. SILC.

Beth Myers  29:44

Yeah, we’re actually so itself kids like a go dog go. I know I might do something with that anyway, so I know. So um, So why does Why does thought matter? And why does Why does every state have one? You know, there’s a reporting mechanism that is in our Rehab Act about tracking these federal dollars and ensuring that, that the Independent Living Philosophy and those core services are being delivered in your state. And then it’s, it allows a roadmap or a process of describing what happens when we receive the state receives funding? Where is that funding going? When in relation to IPL? And then in addition to that, what does the State say? So we have public forums, and we reach out at these public forums to gather information and get input from individuals with disabilities. And we will, we would historically go to a cell and have a public forum. Well, now it’s everything’s virtual, and it’s a little different. And we’re getting creative on how we, you know, get that public input. But we wanted to know, what were the top challenges? What are the things that need to be addressed in our state plan for Independent Living, which is the document that we are charged with managing and the state plan for Independent Living is a contract between the federal government and the state on what we are doing and and how we are providing these services to our citizens with disabilities? And have we found areas in which we need that need to be addressed? Maybe we need additional skills? How do we how do we go about that, maybe that we need to change our focus from a goal that we had set forth to another goal, maybe we need to include housing this time. So we have four goals. And we had four goals this year, because there was so much work to be done, within the goals that we have set forth. The state plan is a three year plan, it’s only three years. So every three years, we are instructed to create a new plan. And your new plan has to have new deliverables, new actions, and new information, new data. And so if you are appropriately writing a state plan, you are ensuring that topics that are important to our citizens, and to our cells have been brought forward, and that we are going to prioritize them. So it’s a three year it’s really we were a group, a council that Governor appointed of members that are charged with managing a state plan, and then created a new one every three years. So we have a staff here, but we also are one of the few states that cover every county in the in the state, we have 67 counties of believers there 68 counties, 67, 67 counties, we have our 15 CILs, we have some satellite offices, it is a huge commitment to our citizens, Floridians with disabilities, saying that we have that we will do our very best to cover these 67 counties is a very important thing our state Independent Living councils because they really provide the necessary support to oversee that state plan and that state plan is that contract between the federal government and our state and ourselves. It kind of flows down that way but it is it’s very important and it’s codified in federal and state law and statute so…

Tony Delisle  33:51

You know I want to you know, kind of summarize what you said because you said a lot there and just so people you know that are you know external or just kind of learning what the Independent Living network is like a Florida Independent Living council, FILC is not Florida Association for Centers for Independent Living, FACIL that clarifies what it’s not. Alright, we’ll start we’ll start off with negation. First in the Florida independent Council is a state you know, part of the Independent Living you know, network, you know, where, where you’re, you know, you do, you know, kind of have a governor appointed board and, you know, all these other kinds of things that obligates you to certain guidance. Like you said, I’m glad you brought up the 1973 Rehab Act we want to remind people that’s where, you know, Centers for Independent Living got funding to provide services, which FILC as Beth is saying is the state Independent Living councils and FILC are one of the main obligations they have is to have oversight of those dollars that come through the 1973 Rehab Act to fund services for Centers for Independent Living, to assure that those dollars are being well spent and spent on people with disabilities, to receive services to live more independent. And so that’s a very important role. So it’s a steward of the good taxpayers money, that centers have to be able to go and do the wonderful work that we do to ensure that people with disabilities can live independently. And it’s a very transparent process and one that, you know, is very important that filk does. And then Beth, you talked about the state plan, state plan, warning, again, alphabet soup warning, we’ll do this along the way, just so that, you know, maybe people listened to more than one episode can start, you know, stringing along and reading the alphabet soup is state plan independent living. So the spill we often call is, is still as a state plan for independent living. And that, you know, is something that every state has to do as well, you know, is come up with a three year state plan for Independent Living, that the, you know, cilex, the state Independent Living councils, like ours, FILC, and the other centers, you know, and their designated state entity often participate on and come together into work and to draft and then to enact, you know, and directs the next three years of kind of efforts, resources and attention, you know, that many of the centers will be doing in terms of delivering that. So that’s a very important thing, I think, for people to know that the state plan does direct a lot of what we do, people should pay, pay attention to it. And when it comes around your time to you know, write the news bill, which doesn’t happen too late after we enact this other one, it’s almost, you know, we’re learning as we go. And with a year and a halfway through, we’re already started thinking about writing the next one, because there’s such a process to we get a public input, and to get public input on on it is one of the key variables to it, because that can drive what goes into it. Because we are driven by the people, the people we serve, and who better to know than the people we serve, and to what should inform our state plan, and where we direct our resources to be able to participate in advocating for that. So we want to make sure that this is also a platform where people can, you know, learn more and put in their feedback for it. So another good part of that, but I also want to add one more there if I can, you Beth, about why, you know, FILC is, is an important, but it’s also as a resource for, you know, the Centers for Independent Living, y’all don’t, you know, or deliver services by any means, but you understand some of the different services that we do, and how they’re consistent services that we provide across the board. But then how certain centers have unique services that they do tailored on the needs of their community that they serve, and you have a really good snapshot of what we all do, and you are often, you know, circulating with me and I know other directors to say, your What are your needs? What can I do better? How can I be informed and marshaling us together to tackle important issues, and have conversations together, which are, you know, very important conversations to have about, you know, how we run, you know, the centers throughout the state and, you know, ideas for doing it better for the future, and marshaling us, as well as being a resource and ensuring good communication happens, which is so hard to do, because there’s so many people doing so many different wonderful things, you know, that’s just a web of things to have to really navigate. And you do that as well. So I wanted to add on there some other things that I see FILC doing as well, and then the board that you know, FILC has a to it, it tends to be really well represented board, since I’ve been on that seemed very dedicated to really advancing, you know, the cause of, you know, independent living for people with disabilities. And so, you know, I look forward to fully appointed board for you all moving forward, something that you all deserve and need. So…

Beth Myers  38:43

I appreciate that. And you’re right, I mean, there’s a FIL or SILC here, as a state Independent Living Council, we really are charged with education and training, when required and providing communication platforms and we play a pretty big role during storms and, and we host other weekly platforms for aisle network group to come together that’s rather organic, and they get to work through some of the executive directors get to collaborate and share ideas. But really to provide that communication platform, we have grown with our emergency support by having a seat inside the emergency, the EEOC, the state EEOC, and part of that is to ensure that there’s clear communications for ourselves who are part of the solution and are able to reach and provide that expertise to our local counties that are that are necessary to serve it citizens. So we do educate and train and we are changing how we do business. Now that COVID is here because it’s everything looks a little bit different, but thank you, I appreciate you for your summary.

Tony Delisle  39:57

Well, yeah, and add that to the list too, is you know, a partner, a public private partnership that is going on right now in disaster preparedness. So you mentioned that the Independent Living network through your efforts has a seat at the state’s emergency operation center. This places like NASA when emergencies happen, and there’s an emergency declaration, the EEOC, the emergency operation center for the state gets activated, and it runs support for the county’s emergency operation center. So 67 emergency operation centers at the county level one at the state level that kind of runs back up as you know, if you need something, you know, that’s gonna be a lot of resources that the state’s on the standby to backup any county that asked for requests for any of that kind of information. And at the same time, because of our involvement with prior hurricanes, and everything that we did, having a seat at the state’s EEOC means that our network was there when Department of Emergency Management, the Red Cross, other first responders, other community based organizations that are on a very large scale, delivering resources and helping people prepare and recover, are they’re at the table talking about getting things done, and to be there and those conversations at the large systemic level, and to be able to always, you know, be in people’s ears and saying, okay, that’s a great plan. Now, how do we do that, to make sure that we get full access to everybody with people with disabilities, and to have them listen, and to want to listen and to have been invited to be there at the table. And for you to be at that table, I just want everybody to take a step back and think about, there’s not a lot of other disability organizations necessarily, that have that kind of access at that critical juncture, of decision making about these kind of disaster services and communications that are going out to people in real time with the COVID pandemic, what’s going on, it has led to so many great collaborations and opportunities and even new services for the COVID pandemic, at least, that have happened through that partnership.

Beth Myers  41:51

Yeah, right. And 100%. And I’ll add one other thing is that, you know, one of the reasons why, you know, I’m so passionate also about our Centers for Independent Living the IO philosophy is because it doesn’t matter the disability, it doesn’t matter the age, we are really very unique in that sense. And that is a difference. That’s why that’s why we’re in the Rehab Act, and not a lot of other agencies are, we are charged, federally charged to serve our citizens with disabilities and it’s really it doesn’t doesn’t matter the age or the disability, it they’re those five core services, you know, have to be you know, kind of punched through, but the ADA and our centers, many times what, what we know is that if a city or a county is operating off of and making good decisions and have good policy, many times, it’s because their Center for Independent Living is part of the solution. And that’s something that we have to you know, we should appreciate because that is something that is very much kind of like a cornerstone of the organization and the i o philosophy I’ll network so it’s really, really important that we give the credit to ourselves who are doing the work that nobody else is, really is nobody, nobody else is doing it, just like we’re doing it. So I’m, I’m proud to be associated with, with everyone, our IO family here.

Tony Delisle  43:28

I think you make a great point there, the next we have is that we serve all ages, all disabilities, and related to programs that promote keeping people in the community and living independently. And that is a unique space and when we do take all commerce in terms of what it takes to keep people in the community and that manifests into a lot of different types of services and programs that we could be offering and even new ones that we may not be offering but yet we know if it’s a need, and we don’t have it and we’re going to build it. I think that’s a very important part of you know, what we do that makes us unique and special and different. So Beth I’m interested to know we unpack a lot about what FILC does and and what’s what it’s not but you’ll take me into you know, you know, we got so many different things going on. But what do you what do you envision FILC doing and the independent living our being in the future that we can create here for Floridians with disabilities you’re envisioning you know, thinking 1000 mile vision and those kind of things. This is an opportunity to be maybe not necessarily over the top grandiose but also optimistic to at the same time I think a lot of us here as we go, especially with COVID can oftentimes feel the exhaustion of the resilience needed to keep going. We definitely have the ability to keep going but sometimes I think it’s always always good to hear someone’s vision of a better day in the future and of what it can be and people with disabilities and and what you have in store and in mind for film. So you know, feel free to take that wherever you want to go.

Beth Myers  44:54

One of the really important things was understanding Our use numbers and and what are barriers for some of our youth coming, you know, into their CILs, we saw the RS numbers going up, these are CILs, youth numbers for the first time going down. What does that mean and understanding. So the commitment was, let’s find somebody that’s going to be able to spend, you know, 100% of that time on dissecting that understanding that developing it, and really creating some synergy with our youth. And that’s why we hired Sarah Goldman and Sarah is amazing. And we’re very excited to have her brought on the full team. So Sarah is going to be able to focus specifically on the youth in rural for Florida, and and some of our populated areas, work with our youth, program managers, sharing data, sharing other resources that are available for programs, so that we can understand how we can get this done taking it back to, you know, our state agency and saying, okay, we need this to happen, and we need those referrals. And we need to work together. But I think it is an area which has been neglected by our team and Tallahassee a little bit. And that is developing a statewide youth program that can feed their our CILs, get ourselves connected and empower their youth program managers and really kind of evolve our YLF, which is now hosted by FACIL.

Tony Delisle  46:36

Youth Leadership Forum, another acronym, another acronym.


Right. But we’ve made the commitment to provide Sarah in her capacity to work with basl and NB, the staff that’s required to put on this large event. But this is a really important component of understanding and connecting our youth with the IL philosophy, understanding that they’re not a problem to be solved, but we want to encourage them to be the best version of them. And I think that that that in in a state where we have FSDB, and we have the Florida school for the deaf and blind sorry, is another acronym. And we have, we have a lot of wonderful services out there that we have an understanding of the community that is unique to us. And we are going to tackle that youth component and see our youth numbers go up as they should, because the IL philosophy is critical. It is it is critical for the community and that’s why the ADA is part of our Cornerstone so I’m really excited to see what happens in the next before the next bill is written. So in two years, where are we going to be because Sarah is already just doing a wonderful job and she is someone who went through the Youth Leadership Forum herself and she has her master’s degree in social work, she’s amazing. And we are we’re really excited about that addition, saying that the other concept is is the sills are such a critical part of response, our state response during emergencies and we have got to identify appropriate funding so our cells can do the job that they’re they’re there to do and I think that improving the funding and addressing the misconception of how much things cost is going to be critical but also really being an organization that’s at the table and we’ve delivered you know I feel like we’ve done time together a little bit you know Tony. We’ve done our time.

Tony Delisle  48:50

We earned our stripes a little bit in the fire together. Yeah

Beth Myers  48:54

That’s right. And so we need to make sure that our souls are properly compensated and that is a big ongoing thing. So we’re going to move into the next belt with housing and transportation and employment I’m sure being right there. And healthcare boom boom, boom education, all those things. But you know, I think that it’s I think we’re moving in the right direction.

Tony Delisle  49:15

We gotta do everything. So intertwined. Yeah, in so just point of order. So when you refer to youth, we’re referring to 14 to 24. Ages correct? Yeah. Yeah. Right. So so just yeah, people that may be listening to you if they might be thinking, you know, some some middle schooler but it really would be in fact, 14 being definitely a teenager and 24 being a young adult. And so you can be deceptive. So when I’m older on that is that when we talk about youth, we’re talking about teenagers who are in or at a highest School about to be in or out of high school, you know, transitioning. So youth transitions is one of the core services that our centers have to provide. And so from what I hear from your vision there, Beth, is that you envision us doing more in this area, in terms of understanding better what’s going on in terms of the barriers and facilitators to successful youth transition from high school to post secondary life, and how we can do better in those services and advocacy and be more of a partner in that space. And know that’s in our new spill, you know, I look forward to having more of a conversation about how that is. And I think this could be a platform to where students with disabilities in high school, and those that have transitioned out of high school, can have conversations, you know, about what it’s like to be in their world, you know, what are some of the benefits of, you know, and barriers that they see, you know, in their lives and opportunities, or lack thereof, or what it’s like to you know, live a day in the life and be able to share that with us and get a better picture, I think would be a really good thing, because then I think it would underscore what you I believe fully see is that this is a really important part, in terms of the life experience, going from high school age, to post secondary young adulthood, that transition there can set the trajectory for longevity, the quality of life, the ability to live independently, is so much impacted by those years, they’re such transformative and impressionable time. And so I can see why you wanting those efforts or centers to be involved more in that is so important, because that can certainly set the trajectory for a more independent life, if we’re able to be a support for people during those very formative years.

Beth Myers  51:44

And there’s a story there, and we need to understand it. And we need to improve our story here in Florida. And I think that that’s what we’re trying to do with our partner facile, we are trying to improve our story, and at least get this get the story out because the work that is done at our ourselves being boots on the ground, is so critical to our community, because we know that you provide a service that only you can provide. And the federal law, I mean, we are embedded in the federal law. And I think that that’s something those are conversations that I always have with some of our funders, this is not a nonprofit that decided to come together, we are entrenched in the history of the ADA movement, and we are entrenched in federal law, that puts us in a different place, we’re coming at things a little bit differently. And and it’s a wonderful, it’s a wonderful position to commit things.

Tony Delisle  52:47

You know, I think in explaining what independent living is, it is a network of services. It’s also a culture. And it’s a philosophy, you know, at least this is how I almost compartmentalize what independent living is all about. And so you have these different areas between the culture, the philosophy, and the services that drives a lot of that conceptual framework of what Independent Living means. They’re very intertwined. They’re To that end, someone that is on the service end, and it is tied into the 1973 Rehab Act, which you’re referring to there, to get people out of institutionalized care and back into the community. In 1973, the Rehab Act was passed to fund centers to make sure that the institutionalized and or to divert and prevent institutionalized care. And this manifests into many different programs and services. From that, again, very important, but also, as I alluded to the philosophy of independent living, and the culture around it, you know, and ask you about related to those, what is it in working with people with disabilities and promoting equity among people with disabilities? Have you learned that has helped you to be a better person or value about life that has been really near and dear to your heart that has come about through your commitment to serve people with disabilities?

Beth Myers  54:06

Okay, so that’s a big question. And it was a it was really a journey. So I started in what I thought was a place of great knowledge. And then I went to a different place where I understood that I didn’t understand anything at all. And I think that giving people I hope that made sense, but you know, I think giving people for me, my journey in this has been understanding that or requiring that I paused for a moment in my day to day activities in my work with the community, and I heard are I observed, or I perceived, just the person and its entirety and I always I never regretted stopping, asking More questions, trying to understand or just a perspective. And I believe that’s why I have made so many friends within the community. Because it wasn’t about me trying to impose anything on on my friend, it was about really just being a friend. And the statement is from Ed Roberts, nothing about us without us, and putting that sentence into context. So it’s not about me, it is about working on a with a team, and then stepping aside when I’m supposed to step aside. And I’ve had a connection with that. And I think you and I experienced that when we went to the conference. And we understood that we needed to just stop and listen to what was being said, and what was going on. Because there was an opportunity for growth and learning in that moment. And I think when I think about my relationships, and I think about my friends, and I think about my journey in this field, I feel like I’ve been very successful in the fact that I could pause my opinion, and my thoughts, and listen, and accept whatever it is that was being given to me. And then really learning. I’m an advocate, that’s who I am. I advocate, I was born like that, I think. And so I’ve had to advocate for family members, and it’s served me well. But the community has served me well, because I’ve learned so much. And this is going back to, you know, into high school where this was, you know, I would observe, stop and observe, it really has allowed me to get on a road that I’m I’m proud of the work that I’ve been part of, I’m proud of, my friends I’m proud of. But it’s not, it’s about being able to move aside and allow just greatness to happen, because that’s what happens if you could just be selfless.

Tony Delisle  57:14

So that’s what I hear you saying is the value of being present with people. And just being there being fully attentive, actively listening. And I think that’s very cathartic for people that we’re listening to, and for ourselves that are listening. And sometimes we’re on the other end of that foot as well. And we need that other person to listen to us, as well as me, perhaps that we share that we need someone else present. So I think presence is a huge gift to give to people, it’s our time, it’s the now. And when we fully dedicated to people, I think it’s a wonderful kind of space to come at that from so I appreciate where you’re coming from in terms of learning that path. So that’s amazing there. So thank you for sharing that. You know, I also want to thank you for what you just said there also about the value that you’ve learned, and, you know, working with other people and the collaborations of people. And that’s one of the things that we want to talk about here on the platform is that there’s a lot of unity through disability, that we can really come together and do a lot of good for one another. And it doesn’t matter, our beliefs about other different types of things, what politics we have, what religion we do, or have or don’t have, or your sports team, your fro or whatever it is, you know, when we come together and really work together to help serve others, we see that we have more in common than we do different. And it feels really good to be a benefit and help with other people. And I recognize that, you know, our independent living network does so much more than its size, relatively small compared to a lot of different other kind of state, kind of nonprofit networks that do good work. And so although we’re relatively small, I think our impact is so much larger than our size. So never under estimating the size of a group of people to make some change, because it’s really, truly anything that really ever has in a way. So I want to acknowledge that you are somebody that works I know very closely with a lot of people that are really working hard to make some change up there in Tallahassee throughout the different centers and support us and they’re doing that on a you know, one to one, and also a large group level, you know, you’re marshaling a lot of people who have a lot of different roles and responsibilities to come together and communicate and problem solve complex issues and have courageous conversations that might say, and to do that, and to do it with the kind of, you know, finesse and authenticity that you have. You’re no nonsense person, you know, I don’t have to wonder what’s on Beth’s mind all no good and well, because you’ll share it and so I really appreciate that no, it’s refreshing and you do in a respectful way it’s it’s good good to just be you know, kind of Frank and authentic and upfront and honest and and be able to willing to go into conversations to do to have courageous conversations about what needs to be done and ideas for you know, complex issues and not to be afraid to, you know, go into that so I appreciate the energy and enthusiasm you have to do. To the creativity that you have in going about what you do as well, to problem solve, you know, we definitely need somebody in your position there to really think about innovative solutions and what’s next on the horizon. And, and that’s more ambiguous than ever. And so I know you’re very creative in being able to do that, and Marshal those kinds of things together. So, you know, I want to acknowledge you in those areas in terms of how you are in terms of your efforts and character that you shown in your investment towards the Independent Living network and Floridians with disability. So I wanted to acknowledge you for that, Beth.

Beth Myers  1:00:34

Hey, thank you so much, Tony. I, you know, I appreciate the kind words that was gracious and thank you.

Tony Delisle  1:00:40

So we have a closing question that we tend to ask everybody, as well. And again, you know, kind of goes to your own philosophy of independent living. But to you, Beth Meyers, what is the independent life?

Beth Myers  1:00:53

Choice, freedom to choose is what independent living is, if you choose to live at a group home, that’s your choice, if you choose to live in an apartment, that’s your choice, if you choose to shelter in place, that’s your choice. It’s because that one action, if we take that away, I What do we have, and so the choice to be what we want to be and who we want to be, I’m about removing barriers, Call me if you need barriers removed, I’m really good at that there are other things not so much. But I believe that the ability to make a choice is is so critical. And that’s, again, why I love you know, the IML philosophy, we are consumer controlled, equal opportunity and not a problem to be solved. So it’s the choice to be who you need to be.

Tony Delisle  1:01:54

Yeah, the relationship between having choice is dependent upon having opportunities, and Centers for Independent Living in the ion network, really offer people with disabilities more opportunities than they would have had they not been exposed to a Center for Independent Living. And so I think being able to have more choices, because you are exposed to having more opportunities is always a great thing. So in that choice, fundamentally, is freedom, you know, to be free to make those choices. One distinction I want to piggyback on in terms of your response there, that’s also part of the Independent Living philosophy is to make informed choices, and to have the independence to make whatever choice that the people we’re working with one to make, you know, we give them the information, and they can make the choice that they think is best for them. And it might not be the choice that we are encouraging them to make themselves. One of the examples would be is that with this platform, decided to be pro vaccine in our messaging is a important thing for people with disabilities, in terms of health outcomes, but also getting back into the community and has been impacted their ability to work or go to school, or just get even, you know, essential items and groceries and everything else like that, yeah, that it could be a really good thing. And so I’m pushing that end of it. And that’s the information that I’m having. But I respect and trying to better understand why people don’t need vaccine. You know, with disability, there’s very good reasons for it. And so there’s no judgment on others that might be not on board with with, you know, US pushing a pro vaccine message, but might have their good reasons and want to better understand what those reasons are and respect them. But at the same time, for me and my perspective, if someone decides not to get one that, again, is one of give them the right information that I know of to the best of my abilities, they make the informed choice that they want to make.

Beth Myers  1:03:44

And there are ramifications to choices, there are actions, there are consequences, however, is the point of saying I know what’s best for you, and then allowing an individual to make the right choice, because we don’t know what’s best for anybody at all.

Tony Delisle  1:03:59

So true, we could be 100% wrong on this. You know, time will tell.

Beth Myers  1:04:03

 Well, you know, I think it’s it’s just being able to support informed choice, you’re right, it’s really important that that’s our job is to bring information to the present and communicate it in a way that is acceptable. And I think that that is it’s so so important. And our CILs do such a great job.

Tony Delisle  1:04:23

Yeah, that’s the thing is communicate the way that people can understand and act on. And that’s a very important thing. Independent Living is made up, as you know, a lot of times very small steps and small actions, but it’s no small thing. At the end of the day. 

Beth Myers  1:04:36

I think we meet people where they are and I love that especially in this community where we have people that they might have just recently been in a car accident and there’s a lot of things that are going on with this moment with this person. And we’re able to meet that person in their place and I just think it’s the beautiful it is. It’s an honor I do miss consumers, I can tell you that. But it’s on-

Tony Delisle  1:05:04

Yeah, you’re in a high administrative type role.

Beth Myers  1:05:06

I don’t get to… I missed that. But it’s it’s an honor to meet that person in that space and allow them to navigate through that and and to be present so..

Tony Delisle  1:05:19

Well, you’re one of those rare codified breeds that can be so good with working directly with people with and without disability. So I can see why you miss it. And I bet the people that you work with miss you very much, I echo that some of my most favorite time is working with people directly, and learn so much and grow so much just from those interactions. And, and I miss it to you, we get kind of removed from those positions having to do the responsibilities that you’re doing nowadays, which is to be an administrator and advocate and to oversee and make sure people are compliant, to make sure people have the resources they need to succeed. And having that your skill set directly working with people. Now being in a position where you’re making decisions that are going to be related to leveraging human material and financial resources to direct services is huge. Because oftentimes people are good at one or the other, but not both. That’s where it’s possible. And it happens you’ll be able to do that in the fluency is huge, but also to be able to help inform you and knowing what’s best for people. You have been working directly with people boots on the ground, and are making decisions that are kind of high level but come from an understanding that’s very grassroots in its nature. So I’m glad you brought that full circle as well Beth, Well, hey, I appreciate you having a conversation with us. It’s so enjoyable to talk to you, we have a lot more to talk about and look forward to invite you on for other episodes and discussions. I foresee hoping to bring you into other conversations to better understand what’s going on is going to be imperative with others and to understand the situation is to also to be able to do better with the situation because when we can understand more, we can do more. And I appreciate being along this path with you Beth. It’s an honor and privilege to work with you and I look forward to having more conversations with you.

Beth Myers  1:07:07

Pleasure is all mine and thank you for this is like this is very exciting. This podcast. I’m very excited about it. And I know it’s going to grow I think this is really very important and, and thank you for the work that you do. I’m grateful for that. I look forward to being on anytime. Thank you for this opportunity. It’s been great. I appreciate it.

Tony Delisle  1:07:28

Wherever it takes us. It will be onward and upward. Thanks again and we’ll

Beth Myers  1:07:33

Okay. All right, my friend. I’ll talk to you later.

Tony Delisle  1:07:37

Thank you Beth.

Amy Feutz  1:07:41

Thanks for listening to the independent life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us cilncf.org@gmail.com for call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

The Importance of COVID-19 Vaccinations with Dr. Vincent Venditto

Dr. Vincent Venditto is an Assistant Professor of Pharmaceutical Sciences at the University of Kentucky College of Pharmacy. He received training in vaccine design and immunology and continues to investigate vaccine strategies to better understand how the immune system works in disease progression. On this episode, Dr. Venditto speaks on the importance of getting the vaccine and helps to clarify some of the questions surrounding the COVID crisis. We also discuss the impact of COVID on the population of people who have disabilities and issues related to the access barriers for getting vaccinated.

For more information:
Fact vs. fiction: https://pharmacy.uky.edu/news-events/archive/covid-19-vaccines-fact-vs-fiction
Top 10 questions: https://pharmacy.uky.edu/news-events/archive/10-quick-questions-about-covid-19-vaccines


SPEAKERS: Vince Venditto, Tony Delisle

Tony Delisle  00:00

It is in our nature, to want to grow, to expand, and to learn more information, to acquire knowledge, and wisdom. And to be more that comes from Abraham Maslow, and I believe is a very important quote that relates to making sure that we have the most accurate information possible when making choices. In order to learn and grow, got to have the right information. And today, it can be a very difficult time to get the right accurate information. And so in today’s podcast, as we interviewed Dr. Vincent Venditto, to get more information about something that’s really important to be informed on the vaccination for the COVID-19 virus, and for people with disabilities, to get the accurate information about that, to have that knowledge to have that wisdom to learn more is important in terms of this topic, so that we can be more so I look forward to you hearing this episode. Hey, welcome back to another episode of The Independent Life. I’m here with Dr. Vince, Venditto. He comes to us from the University of Kentucky College of Pharmacy, and He is an expert in infectious disease and vaccinations. And he is come here to have a conversation with us because I think what he has to share is very important for us to understand and making important decisions regarding the COVID vaccination, and people with disabilities. So there’s a lot to unpack here. And before we do, please tell us a little bit about who you are and what you’re an expert in in this area, and why you have the credentials and background to have the information that we should be listening to.

Vince Venditto  02:06

Great, thanks. It’s pleasure to be here. So my background, I got my PhD in Chemistry actually at Texas A&M University. And then for a postdoc, I went to do a to learn how to make vaccines to use my Chemistry experience, and learn how to make vaccines and learn about immunology. And so really, it was through this process that I that I really got the experience and expertise that that brings me here today. During my postdoc I was i was focused on making HIV vaccines and trying to develop this was out at University of California in San Francisco. And I was I was developing HIV vaccines trying to, you know, to address another public health need where we really do need a vaccine. And so since moving to the University of Kentucky, I’ve kind of retooled the the technology that I was using the vaccine technology to focus on studying immune responses in other diseases where we think vaccine technology could have an impact like in cardiovascular disease. So a lot of my work right now actually focuses on trying to modulate immune responses in the context of cardiovascular disease. But the other thing that I’ll say that AI is really important, and I think really what brought me to this point is certainly I have this experience in training in vaccine design and Immunology. But there’s so much misinformation out there, and scientists who have experience and understanding about the vaccines about the process that we’re going through. And you know, I mean, we’re all completely surrounded by COVID-19, inflammation and misinformation. And so, as a as a scientist, and as a person who’s interested in in scientific communication, and making sure that the public is properly educated, I cede my duty to inform as many people as possible on the appropriate information and trying to dispel some of the myths, misconceptions that are out there.

Tony Delisle  04:06

Well, you have your work cut out for you, because it just seems like the onslaught of misinformation out there in the platforms that is just been multiplied over the years. And it’s been interesting and somewhat disheartening, being someone myself from public health, to see how much misinformation around COVID-19 has been out there, how it’s been a real challenge for people like yourselves, to really combat that misinformation is very valuable and appreciate your efforts and being able to do that, because that is certainly one of the most important areas is to, you know, have the right information, the correct information to make the informed decisions that we need to make and thank you for making sure that we are bringing the right evidence base information to the forefront before I dive into the you know, why should we get vaccinated What’s this you know, science behind the reasons of why We should add to your understanding about, you know, COVID-19. And its impact perhaps on people with disabilities, when we look at, you know, the people that are most likely to, you know, be impacted by COVID? And who that might be and pertaining to disabilities. Do you see anything in terms of the raise prevalence or issues related to COVID? pertaining to disability to your knowledge?

Vince Venditto  05:25

Yeah, so I it’s it’s a good question. I mean, you know, I think what we see right now with people that are impacted by COVID-19, it’s it’s it’s affecting people who have health disparities in other areas. So people who have increased rates of heart disease, increased rates of diabetes, increased rates of lung conditions. And so, you know, this is, I would say, across the board, anybody that has increased rates of those conditions are certainly going to be impacted. And I know that you shared some data that these rates are are increased in people living with disabilities. And so, you know, really, I think of concern because getting infected with coronavirus, if you have one of these conditions, and you’re in one of these populations that maybe doesn’t have appropriate health care doesn’t have the appropriate access to care, then getting infected can really have a huge impact on your life and long term effects on living and long term health conditions. 

Tony Delisle  06:24

So thank you for bringing that up, that people with disabilities are more likely to have cardiovascular disease, respiratory disease, diabetes, though secondary outcomes that are related to COVID-19. But also people over 65, you know, over half of all people over 65 have a disability as well. And then I looked at a lot of the, you know, rates in institutionalized care, and you know, how many, the percentage of people in institutionalized care, the nursing home facilities, you know, do have disabilities, as well, and the impact that it’s had on our community, in that sense. And so I do believe that, you know, COVID-19, and its impact on people disabilities is, is an important area to understand more on what’s happening so we can do better to serve. And so I appreciate your pointing to some of that information in terms of that sense.

Vince Venditto  07:12

So I think the other point that you just brought up is people living in institutionalized care, and that really, is kind of optimal place for coronavirus to spread through a community. So you know, if coronavirus comes into a place where there is, you know, it where it’s difficult to physical distance from other people or, you know, nurses are potentially carriers of the virus and, and so even if you’re vaccinated, and we can get into this a little bit later, even if you’re vaccinated, you could still potentially spread, but it’s just going to keep you from getting sicker. And so that’s why the vaccine is so important for people living in different settings with close quarters, and where there’s a lot of high end interactions with other people. So yeah, I mean, the vaccine is just so important. And we can talk about that more in a bit, I guess.

Tony Delisle  08:02

Are gonna ready to jump in on that one. Yeah. Right now, but I feel like there’s something else to before we, you know, put a bow on the institutionalized care, because like there, yes, we’re Centers for Independent Living. So in a way, we have the space that’s somewhat juxtaposed to institutionalized care. So we try to make sure that people with disabilities to whatever extent possible can live in the community, or the least restrictive environment possible, and preventing any type of institutionalized care if possible. But do you see the role for institutionalized care? There’s certainly a need for institutionalized care. And does this mean that perhaps we should look at how institutionalized care is done differently? Is there ways of doing it non congregate ways of doing it to, you know, institutionalized care that would mitigate the amount of close quarters that are people in with maintaining connection and community perhaps, I don’t know it for me, it makes me think about the model in which it’s currently in and the model which currently could be to be the best one that, you know, would help mitigate the effects that we’re seeing from COVID-19.

Vince Venditto  09:09

Yeah, I mean, I think it’s a great point, and I wish I had an answer to it.

Tony Delisle  09:12

Yeah, I just throw that out there. Yeah.

Vince Venditto  09:16

I mean, I yeah, I it’s certainly something that I think that you know, coronavirus in the pandemic has really brought up a lot of things in how we care for people and how we think about our normal daily lives and how we can change how we’re living to improve the you know, the care for all people, whether they’re, you’re in an institutionalized setting, or you’re, you know, or you’re, you’re in your own home, and I think all of those things have changed because of the pandemic and I think will continue to change because of the health disparities that we’ve seen come up with, you know, different conditions, different living settings.

Tony Delisle  09:52

So please tell us why, you know, there’s there’s a lot of us out here again, have information misinformation, overload. And everything else like that. Why is it that we should get the vaccination for COVID-19?

Vince Venditto  10:06

Yeah. So I mean, the short answer is that it’s going to keep you out of the hospital or it’s going to keep most of the people out of hospital. This is the data that they collected with the clinical trial. And that is that in the 40,000 people or thereabout. 40,000 people that were included in a clinical trial, people who were vaccinated had had better outcomes, they didn’t have the progression to hospitalization, they didn’t have any of the sudden severe disease that we saw on people who were not vaccinated. And that that alone is is the importance of getting the vaccine, it’s really to keep people out of the hospitals, and keep people off of ventilators, the vaccine is designed to give your immune system just a little bit of a boost so that you can help fight the virus without succumbing to the pretty serious consequences if you are infected.

Tony Delisle  10:55

So is there any, like certain health conditions or types of disabilities or anything that you know, group of people that might have a certain type of condition should, you know be wary of having the vaccination at all that you want to say, Hey, baby, you know, check with a doctor before you get the vaccination if you have such and such condition?

Vince Venditto  11:18

Yeah, so I mean, my blanket response really is anybody that has some concerns should definitely talk to their their primary care provider, their physician, about their specific conditions, their specific concerns, because I certainly don’t have all the health information for everybody that has those questions. But I, you know, based on on what we’ve seen so far, really is that there have only been a few, really, I think, severe adverse responses. And this is, they’ve seen pretty strong allergic responses, really, it’s only been a handful of people. You know, they’ve they’ve immunized I don’t know how many million people so far, but they’ve only seen this really strong anaphylaxis response in maybe about 20 or 30 people. So it’s a relatively small number of people. But they have issued a warning, you know that if you have a strong anaphylactic response to other things to foods or to this isn’t seasonal allergies, this is something that that requires an epi pen or requires hospitalization at something that you’ve had in the past. And so they are indicating that if you have any anaplastic reactions in the past anything that you talk to your healthcare provider, make them aware and and if you are getting the vaccine, which is still recommended, it should be done in a clinical setting, rather than in a drive thru clinic, where professional care is there in case you have any strong responses. But again, they’re rare. So you know, it is recommended that most people get the vaccine.

Tony Delisle  12:54

Gotcha, gotcha. So yeah, that that definitely, you know, is one thing that goes through people’s minds about reasons kind of why not to and, you know, it’s thinking of other reasons that, you know, I’ve heard from people I know, friends, I know, and etc, why they shouldn’t get the vaccine, and I want to hear maybe, what do you think of him? So, you know, I have some people that say, hey, look, the trials, you know, for this vaccine, you know, maybe went off in April, May, or whatever it may be, it’s been such a short amount of time to develop a vaccine of this nature against a virus like this, like a true amazement of like science to be able to do something this fast, like quite incredible, mind blowing, and say that well, because of that, you know, nature, we haven’t had enough time longitudinally to kind of see the effects of what the, you know, vaccine might do to us in terms of any kind of, you know, reactions to it right away or down the road. So, I’m gonna wait and see, you know, what, how this pans out? And you know, so I’ve heard that before. So what would you tell someone like that, that, you know, has those kind of reasons why they might not get vaccinated?

Vince Venditto  14:05

Yeah, I mean, I’ve heard this quite a bit, too. And I think it’s understandable. But let me tell you why I’ve gotten vaccinated, even though those concerns do exist in the community. And so first, let me talk about the approval process. And then I’ll talk about some of the what we see in side effects with with other vaccines and the timeframe of those. So this approval process, you know, it was the fastest vaccine to be to get approval from the FDA and that it only took a year and that, you know, that is quicker than the next fastest, which is the measles vaccine, which took four years. And the reason that this process was so yeah. Yeah. And it’s a testament to the science really, that that this happened. Yeah. And to the public investment in the federal investment that to get us to this point.

Tony Delisle  14:56

Yeah, I think I’m so glad you’re saying that. I think that does need to be acknowledged. That’s really a great amazing feat that has been accomplished.

Vince Venditto  15:03

It is. So the the mRNA technology that’s the basis for both the Pfizer and Moderna vaccines that was really devised, I would say in the not in the 90s. And it was it was designed with the goal of doing a rapid development of a vaccine. And we can get into the the way that works in a little bit if you’re interested. But, but basically, because it was designed for rapid rollout, and and it was, you know, they they kind of invented the technology in the 90s. They then started to continue to optimize the technology, they were doing a lot of preclinical studies in different small animal and primate models. And then when MERS came around when SARS came around, these are other coronaviruses that happened. I guess SARS one happened 13 years ago, or something like that, I forget the actual date. So when that came around, they wanted to do a clinical trial with the same technology. The problem is it didn’t spread around the globe the way that it did for this pandemic. And so they weren’t able to actually immunize the 40,000 people that they did in the phase three trial, like they did for this pandemic. And so while it was being developed for these other, these other viruses, they never had enough people to do a proper controlled trial. And so did you have a question?

Tony Delisle  16:24

No, I was just like, like, really appreciating how they’re able to scale this up? Yeah, have been able to do this. I marvel, I marvel at the administrative and the scientific level. I mean, gather to coordinate, you know, it’s To me, it’s like the moonshot. Yeah, you know, in a way, it’s like a moonshot opportunity, you know, point in science that I think needs to be like seen like that. Right? Absolutely. So again, that goes back to that, you know, I guess person that saying, Well, again, you know, that comes in part and parcel with the notion that, you know, we haven’t seen enough time with it. But I also have other people that are weighing like, oh, that, you know, this cost benefit analysis that they have in their head where, you know, what, whatever reaction I might get out of the COVID-19, or your reaction that I have, it’s not gonna be any bad, but COVID, I’ll be COVID. It’ll be okay. Whatever I can do. COVID is not gonna be as bad as whatever I’m actually getting from this vaccine and kind of having that attitude. What do you would you say to that kind of reason for perhaps not getting the vaccine? Yeah. So

Vince Venditto  17:30

As this vaccine went through clinical trials, the FDA told them that they had to wait for at least eight weeks after the second dose in the phase three trial to determine if there were any side effects. And the question is why eight weeks. And that’s because generally, any adverse event that’s seen with the vaccine with any other vaccines, they generally occur either immediately after immunization, or 68 weeks later. And because we haven’t seen that the risk of the vaccine is actually quite low, obviously, we’re still monitoring, we’re going to be doing studies monitoring these patients for years to come. And so you know, all this stuff will will play out over that time, but but based on all of the evidence we have, from all of the vaccines, six to eight weeks is kind of that sweet spot. And if you don’t see anything by then, then they’re relatively safe. And if you compare the risk, the the very low risk of the vaccine, with the relatively high risk of actually getting infected, and potentially hospitalized and potentially even dying from the virus, the risk reward with the vaccine is certainly advantages, the the benefits of the vaccine as opposed to the virus getting infected.

Tony Delisle  18:45

So gotcha. Thank you. So when we talk about people also wanting to give the vaccine, some of the things that people you know, having leery about also are kind of related to sometimes things that have happened in science in the past that have been confusing to people and also led to a movement. And since what I mean by is, is that there’s been, you know, an anti vaccination movement. And one part of that, you know, story of the anti Vax movement is that it is linked to people that have autism. And so that, you know, is directly related to disability and vaccinations and perhaps, you know, you know, could have repercussions today, in terms of some people and whether or not they want to get this COVID-19 vaccination as well. So, is there anything that you would have to say to somebody that, you know, kind of is, you know, connecting those things together with getting the COVID vaccination? 

Vince Venditto  19:42

Yeah I mean, you know, first of all, none none of those things are actually true all the that data has been proven to be falsified and not accurate. But this anti vaccine movement has been going on since vaccines were developed by Edward Jenner. And there were a lot of political cartoons indicated. That people who were vaccinated were turning into cows. And this was around the smallpox vaccine, where they were taking cow pustules. And so there’s, so this is not a new thing. And they, you know, they went from saying that people are going to turn into cows, too then saying that when the paper was published, saying that the vaccines cause autism, none of these things are true, and none of them have been have been shown to be true. And that paper that linked autism to vaccines was proven to just not be correct. But there’s a lot of people in the media, there’s prominent celebrities and politicians that continue to promote this just false science. And, and that, that’s pretty detrimental. Because there’s a lot more people that know these celebrities than know me. And so I can only do so much, I only have such, so big of a platform. But they they reach so many more people so much more easily. So it, it’s easy for them to get their false science to people rather than me trying to dispel those myths. So really, there is no connection to any of these disabilities, I can set tell you that. There are some occasionally some side effects that are observed in vaccines, and we haven’t seen any of them with the Pfizer maternal vaccines. And those observations are typically made during clinical trials. And if there is a high abundance of the side effects, then they wouldn’t approve them. And so and we’re not seeing any of that with these vaccines. So these vaccines seems safer than most other vaccines that are on the market. And, and they’re all safe, too. So you know, it’s it’s, it’s really a testament to the science and the opportunity here to actually target other viruses as well. 

Tony Delisle  21:45

Really, that makes a lot of sense. And there is a consensus. Yeah, that I’m aware of in the research that says that it is not linked to autism, I believe the article you’re referring to was in the Lancer. It was retracted. I think it was one of the rare times like, you know, an article, at least in that kind of a publication is retracted. Right, you know, for good reason when you go back on it, so, so I’m glad you brought that up. So if you get the vaccine, I know, a couple common questions that people might have is that if I get the vaccine, does that mean, I? Am I still able to get someone else infected? Or am I protected from getting someone else infected? So if someone gets the vaccine, you know, can they get someone else? You know, COVID? Or are they immune to that?

Vince Venditto  22:35

Yeah, so it’s it’s a good question. It’s something that we’re still trying to figure out what the clinical trials did was they determined whether or not people who were vaccinated would have less severe disease. And the clinical trial showed that if you’re vaccinated, you have less severe disease, it did not prove that if you’re vaccinated, that you can that you won’t transmit to other people anymore. And so it’s important that if you are vaccinated, that you continue wearing a mask, you continue physical distancing, washing your hands, until we actually prove that the vaccine prevents transmission. And right now, we just don’t really have all the data to say that.

Tony Delisle  23:13

Okay, all right. Fair enough. And, you know, as we’re recording this, you know, January 27, seems like it’s a race against time, you know, the clock’s ticking, for sure. At the same time, we’re hearing, you know, different strains, you know, coming out of different countries at this point. And these are hybrids. And then, you know, questions get raised about, well, well, this vaccine that’s currently be distributed, be protective against these other strains. Is there any educated guess there? Or what’s the thoughts?

Vince Venditto  23:43

Yeah, that’s that’s a good question. So I think there’s, I’ll first say that mutations in viruses are very common. And I could tell you the data that we see in Kentucky right now is that there have that been about 23 mutations in the virus in the past year. And so that’s a relatively low rate of mutation, which are some and none of those mutations have really led to any dramatic differences. We’re not seeing increased infectivity, we’re not seeing any increased and this is in in Kentucky I’m referring to now there are some of these variants and mutations that are occurring. There’s this one that a lot of public health, individuals are looking at to make sure that to look at the transmissibility, and the infectivity, and every time a new mutation arises in a community, they then make that virus and they then test to see whether or not the vaccine can still neutralize or limit infectivity. And so far, the vaccines have proven to do their job. The nice thing about the vaccine technology though, is if we find that there’s a variant that’s coming around, that does not respond to the vaccine that’s currently approved. It’s a relatively easy process to get an new vaccine made, because you’re just changing the few, a little piece of the genetic code that’s in the, it’s in the vaccine. Wow, that’s good. And the approval process will actually be much faster because they’ll they’ll have to do a small clinical trial to show that there’s no additional adverse are no, there’s no adverse events that come up with this minor change in the genetic code. But everything else is effectively the same. And it’s not anticipated that changes to the genetic code of the vaccine is going to impact safety or efficacy. So I imagine that in a matter of months, we can have a new vaccine to get to people, if a specific strain starts circulating, that is different and more virulent.

Tony Delisle  25:45

That’s very encouraging to hear. That’s great to hear. Well, so alright, so to kind of round this out, the one end is developing it, the other would be then, you know, getting it out to people. We’re trying to be a part of where we can encourage people to say yes to it. But then once you say yes, you know how people can get LinkedIn and go about that? Are you on kind of inside about, you know, how best practices would run in terms of getting your vaccines to people, especially like with disabilities, who may be in the community, but have limited access to the vaccine, you know, how they can get it, you know, in a way that’s effectively communicated to them and offered in a way that’s accessible to them as well? Are you in on your that kind of end of the vaccination coordination?

Vince Venditto  26:32

I’ve not, and I don’t envy the the people in those positions. Who are, I think the one thing that I would say, though, is, I think politicians have a lot of pull in this area, and they’re the ones that are making the laws on how the vaccines are distributed. And so I would urge anybody who’s listening to this to, you know, write your senators, right, your Congress, people that that the state and federal level, and tell them that it’s important to get vaccines to the, to your community, and, you know, I would certainly encourage people to do that. And, and it’s so important to make sure that everybody has access to this, and certainly those with, as we talked about previously, people with increased risk for cardiovascular disease, lung disease, diabetes, things that that, you know, are elevated in, in the disability community. So, yeah.

Tony Delisle  27:22

Thank you for bringing up that point, that’s something that we really want to underscore here at the independent life is, people getting involved at the local and state level on advocating and this is certainly an important place to advocate for, I think, also, because people with disabilities aren’t necessarily included in the first round of priority. People that you know, should be getting the vaccine. And, you know, there’s good reasons of, you know, why the data, my point is why we should be, and so, you know, advocating for us to make sure that, you know, we do get the vaccine at the appropriate time because of the need, and it being there, I think is a very important thing, that’s a real time advocacy issue for our community right now, to end and to be able to do it in a way that you know, people have access to, and will be able to get it, you know, just as equally as anyone else will be able to so I can appreciate how you don’t envy, that part of the lift that’s going on. Like that, again, is a you know, a systematic moon left, there will also have to happen in coordination with the incredible feats of science that is occurred as well. Alright, well, let’s try and put a bow on this, if you are giving me your elevator speech, you know, to everybody about Okay, why we should get vaccinated. You know, why the people perhaps even living with somebody who has a disability get vaccinated, because they’re going to be around them all the time, and etc. You know, why should we get vaccinated? Why should we be doing this right now?

Vince Venditto  28:45

Yeah, I mean, it’s so important to get vaccinated to keep you out of the hospital. And after you’re vaccinated, it’s important to continue wearing a mask, physical distancing, washing your hands, to keep the people around you out of the hospital, you know, until everybody has access to the vaccine, we’re still living through a pandemic. And so we need to not only protect ourselves with the vaccine, but protecting our communities, and those around us is so critical. So I would encourage everybody to get the vaccine, speak with your health care providers. And, and, you know, hopefully, we’ll be through this soon so we can get back to, you know, life as as new normal, I guess, right?

Tony Delisle  29:24

Yeah, it’ll be very different on the other side, that’s another fascinating conversation to be had about, again, you know, how can we do things different moving into the future, you know, we just do one little nugget out there about institutionalized care, but there are many more to consider as well, you know, to mitigate it, you know, in the first place, and maybe perhaps one day we can continue a conversation though, going down. There’s other areas that would be very interesting to talk about and related to what you do and what you do is I just want to acknowledge you, and thank you for doing the hard work that it is there for you to do. This is an easy work that you’re a part of, it takes a huge amount of you know dedication you know, PR personally and professionally to do the work that you’re doing then to go beyond that it’s kind of above and beyond and to really feel that it’s their responsibility to get this out to the public and to you know, in a way that they can understand and real information and make a really good informed decision on and so I just want to acknowledge you for taking that you know, extra leap even beyond you know, the incredible work that you already do, you know, in this field to reach out to the public and communicate this information in a way we can absorb so that’s huge and for you to put yourself out there and to do this and you know, your time super valuable, says a lot about you and and yeah, can go a long way. And abating my opinion about the University of Kentucky being over here in the University of Florida, you know, sometimes there’s a bias in the community. And, you know, so you know, these are times where we can work and be more diverse and so I can be more accepting of, you know, expertise that come out of this institution. So I say all that and just because of, you know, our connections and love for one another’s universities, I’m sure all right, yes. But uh, but uh, hey, well, I again, you know, thank you so much for your time. And, you know, if ever to continue the conversation and really promote pro messaging, you know, for vaccinations, I’d love to call on you and continue getting good information out to the people that we can make a better informed choice here.

Vince Venditto  31:31

Thank you very much for having me. And I appreciate being here and I appreciate what you’re doing for the community. So I’d be happy to come back anytime.

Tony Delisle  31:40

All right, thank you, Dr. Venditto. All right, again, another episode for the independent life until the next time, onward and upward.

Amy Feutz  31:50

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions or suggestions or if you have a story you’d like to share, please email us at cilncf.org@gmail.com for call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.