Disability Deep Dive Podcast

Episode Transcript

Jodi Beckstine (00:06):

Hi, I'm Jodi.

Keith Casebonne (00:07):

And I'm Keith. Welcome to a Disability Deep Dive special episode.

Jodi Beckstine (00:11):

Back in June, we took the podcast on the road to the 28th Annual Family Cafe, one of Florida's largest gatherings for people with disabilities, families, advocates, and organizations from across the state.

Keith Casebonne (00:23):

While we were there, we spent some time on the exhibit floor talking with organizations about the work they do, the services and resources they offer, and how [inaudible 00:00:31] with disabilities can connect with them.

Jodi Beckstine (00:33):

These are short conversations, just a few minutes each, but they offer a chance to learn about programs and organizations you may not have heard about before.

Keith Casebonne (00:42):

Because these interviews are recorded live on a busy convention expo floor, you'll hear some background conversation, announcements, and other ambient sounds throughout the episode. That's all part of the experience of being there.

Jodi Beckstine (00:54):

So for this episode, we're bringing those conversations together and taking you back to the exhibit floor at the 28th Annual Family Cafe.

Keith Casebonne (01:02):

Let's get started. Well, hi, Lana. Thanks so much for spending a few minutes with us today. Can you introduce yourself and tell us a little bit more about Pyramid?

Lana Smith (01:13):

Yeah. My name is Lana Smith. I'm the executive director for Pyramid. We are an adult day training program here in Florida. We have five locations, one in Tampa, Tallahassee, Panama City, Fort Walton Beach, and Pensacola. And we've been in existence for 32 years now.

Jodi Beckstine (01:33):

Wow.

Keith Casebonne (01:33):

Wow. That's a long time now. Wow.

Lana Smith (01:35):

Our focus is on arts and performing arts, but we also work on life skills and all kinds of stuff.

Jodi Beckstine (01:44):

Fabulous. What are two or three outcomes that you see with the adult training that are working well for Pyramid?

Lana Smith (01:53):

I think the biggest outcome is the opportunity it gives the students that come to our program to have a place to come and be who they are and experience new things and people outside their home or family, to make friends and maybe learn some new skills that they can help them connect them with their community in whatever way that's important to them.

Jodi Beckstine (02:26):

Yeah.

Lana Smith (02:26):

So I think that's probably the biggest that I see regularly. For our staff, I think being an advocate for our students, being that second set of eyes, it's important being a part of that IDT team. We really like that. We think we play an important role.

Keith Casebonne (02:53):

Are there any common misconceptions about the adult day training that you would want to clear up?

Lana Smith (02:58):

Yes. The worst is that we're a daycare.

Keith Casebonne (03:04):

Oh, of course.

Lana Smith (03:04):

That's just [inaudible 00:03:06] it's when you come to Pyramid, it's an extraordinarily active environment. And I see that... Those are our performers warming up for their-

Keith Casebonne (03:16):

Okay.

Lana Smith (03:18):

Actually our Tallahassee program as a rock band so-

Keith Casebonne (03:21):

Oh, really?

Jodi Beckstine (03:22):

Oh, wow.

Lana Smith (03:22):

It's kind of loud sometimes.

Keith Casebonne (03:23):

I bet. I bet. Yeah. Yeah. Yeah.

Lana Smith (03:25):

But it's a fun, it's an active environment and it's important too for some people because it teaches them to learn how to adapt to an environment where there's demands, where there's expectations, how they get along with other people, how to follow a schedule. And I think that those are all important things for everybody to learn and grow.

Jodi Beckstine (03:52):

Absolutely. So what can the arts program offer that they may not always get in other settings?

Lana Smith (04:00):

Well, at Pyramid, we employ artists. It's fun to work because we have traditional staffs that have caregiver backgrounds that have been working group homes and different facilities, but we also hire people that have music backgrounds and that are educators, that have gone to school for studio art or therapeutic art.

Jodi Beckstine (04:35):

Wow.

Lana Smith (04:36):

So it's a very eclectic staff that we have and they really kind of thrive on each other. And so I tell people that some of the individuals that come to Pyramid, they have probably more arts education than the typical master's college level student-

Keith Casebonne (04:56):

Wow.

Lana Smith (04:56):

... just because-

Jodi Beckstine (04:56):

Wow.

Lana Smith (04:57):

... they've been learning from artists for years.

Jodi Beckstine (04:59):

Yeah.

Lana Smith (05:00):

Yeah. So I think that makes us unique.

Keith Casebonne (05:01):

That is fun.

Jodi Beckstine (05:01):

Fantastic.

Keith Casebonne (05:03):

So how do people get started with Pyramid? What's the first step or who's eligible?

Lana Smith (05:08):

Well, the first step is just to come see us because Pyramid's not for everybody. I think that it's great when people have choice. We're all stronger when people have choices.

Jodi Beckstine (05:19):

Absolutely.

Lana Smith (05:19):

And every Pyramid's a little bit unique too. And it is an active environment and that might not be for everybody.

Jodi Beckstine (05:28):

Yeah.

Lana Smith (05:30):

So I think just come see us, take a tour, check it out, spend a little bit of time with us. And if it feels like it's a good fit, then we'll figure out how to get you enrolled.

Jodi Beckstine (05:42):

Fantastic.

Keith Casebonne (05:42):

Sounds great.

Jodi Beckstine (05:43):

Well, thank you so much for stopping by and giving us just a little bit of a taste of what Pyramid's all about.

Lana Smith (05:47):

Thank you so much.

Keith Casebonne (05:48):

Thank you.

Lana Smith (05:49):

Appreciate the opportunity.

Jodi Beckstine (05:51):

Our pleasure. All right. Thanks for coming. Dawn, can you introduce yourself and explain your role at Disability Rights Florida?

Dawn Moore (05:59):

Yes. I can, Jodi. My name is Dawn Moore and my position here at the agency is the Special Events and Outreach Coordinator. I've been with the agency now for 30 years and I do work out of the Tallahassee office, which is our main headquarters.

Keith Casebonne (06:16):

Excellent.

Jodi Beckstine (06:18):

So what are the most common reasons people reach out to Disability Rights Florida?

Dawn Moore (06:23):

Most common?

Jodi Beckstine (06:23):

Mm-hmm.

Dawn Moore (06:25):

The Social Security eligibility process, the APD eligibility process, and also Medicaid denials, reductions and terminations.

Jodi Beckstine (06:40):

All right.

Keith Casebonne (06:41):

And so for example, I know you just said Social Security application is one of the more common things people call about. However, that's not something that we actually help with. So when people call with questions that we don't help with, what do we do?

Dawn Moore (06:59):

We have what is called our data resource base. And so with that, we have those type of resources where if they don't fall in line with this disability related issues that we cover, we try to have housing referrals. We try to have legal referrals to refer people so that they can know more about Social Security and who helps them with that. So like Social Security, for example, and then other legal organizations that help people apply for Social Security benefits.

Jodi Beckstine (07:29):

Right. So how can people support disability rights in their own communities if they don't even know where to start?

Dawn Moore (07:38):

So to me, I think it's more kind of word of mouth. If there's one person in their neighborhood that received our assistance and they know of other people within their community that have people with disabilities, they get the word out and start networking with them and kind of refer them to us. And then it kind of trickles down where that community starts to know about who we are. And it can also be through our publications, our brochures that we mail out to individuals or that they receive from us if they come to an outreach event or something like that.

Jodi Beckstine (08:08):

All right.

Keith Casebonne (08:10):

So what's one change that you have seen that gives you hope and what do you think helped make it happen?

Dawn Moore (08:17):

What is one change that I see-

Keith Casebonne (08:19):

In the world of disability rights-

Dawn Moore (08:21):

Oh, okay.

Keith Casebonne (08:22):

... something that's good or bad and maybe what happened to cause it or how we can fix it or-

Dawn Moore (08:29):

So one thing that I've seen that is really, I think for disabilities would be the mental health resources because when people can't see the person's disability, they feel like that person doesn't need assistance and it's not like that.

Keith Casebonne (08:47):

Yeah.

Dawn Moore (08:47):

And for me, ever since COVID, it seems like depression, anxiety, different things like that within the mental health community has risen over the past six to seven years.

Keith Casebonne (09:00):

On the rise, yeah.

Dawn Moore (09:00):

That's my take on that.

Keith Casebonne (09:02):

Yeah.

Jodi Beckstine (09:02):

No, that makes sense.

Dawn Moore (09:03):

Yes.

Jodi Beckstine (09:04):

Well, thank you so much for taking a minute to sit down and talk to us. It's amazing.

Keith Casebonne (09:08):

We really appreciate it.

Dawn Moore (09:08):

I enjoyed it. Thank you so much.

Keith Casebonne (09:10):

Thank you.

Jodi Beckstine (09:14):

All right. For listeners who may not know you guys, can you introduce yourself and Florida Self-Advocates Network?

Katie Kaiser (09:21):

Sure. I am Katie Kaiser. I am with the Florida SAND Network. I'm a year two fellow and I have-

Rachel Long (09:30):

My name is Rachel Long and I'm the vice president of Florida Self-Advocates Network.

Jodi Beckstine (09:36):

Wonderful.

Keith Casebonne (09:37):

Awesome.

Katie Kaiser (09:37):

And Florida SAND is a self-advocate group. We learn how to be self-advocates. And then we also have smaller groups in the towns. We have about 12 optic groups from Panama to Fort Myers.

Jodi Beckstine (09:52):

Wonderful.

Keith Casebonne (09:53):

Excellent. So what are some of the biggest issues self-advocates in Florida are talking about right now?

Katie Kaiser (10:01):

The biggest issues that they're talking about is definitely transportation, housing and... Do you have another one?

Rachel Long (10:13):

Accessibility in the community and different places, being able to be more accessible and have accessible ways to get in and out.

Jodi Beckstine (10:25):

Yes. Definitely.

Keith Casebonne (10:27):

Makes sense.

Jodi Beckstine (10:29):

So how do the local Florida SAND groups help people build confidence and leadership skills to self-advocate?

Katie Kaiser (10:36):

We do that by giving... So we have a amplify call that we have once a month on Mondays. Well, not every Monday. Once a month, first Monday, where we do self-advocacy talks and we just communicate with everyone. We also had a conference last year and we do training through that. And there's just what I'm part of, the fellows, we support the groups and give them support and confidence through that.

Jodi Beckstine (11:12):

Wonderful.

Keith Casebonne (11:13):

Awesome. Can you talk a little bit about how the Florida SAND program helps self-advocate leaders grow and become good advocates, good leaders?

Katie Kaiser (11:24):

Take this one.

Rachel Long (11:27):

How they help them grow and become good self-advocates is that they offer, like she said in ways, trainings and things, and they place us with mentors and mentees. And we right now have a coach that helps each group, has been assigned to certain groups to help us to where we get things done and they just really provide a lot of support to our self-advocates.

Keith Casebonne (11:54):

Nice.

Jodi Beckstine (11:56):

So where can people learn more about Florida SAND and how do they get connected with you guys?

Katie Kaiser (12:02):

So they can get a part by following us on our Facebook page. We have a page called FSA Central where we have our information there. They also can find us on... We have a blog with FSA Central and Florida SAND. That's how they can contact us and to learn about us and we have all kinds of information there.

Rachel Long (12:27):

They also can help find us at our main Florida SAND website, which is flsand.org.

Jodi Beckstine (12:37):

Fantastic.

Keith Casebonne (12:37):

Excellent. Well, thank you both for being with us today. We really appreciate your time.

Jodi Beckstine (12:41):

Thank you.

Katie Kaiser (12:41):

Thank you.

Keith Casebonne (12:42):

Thank you. Hi, Danielle. Could you introduce yourself and tell us about your role at Social Security Administration?

Danielle West Lane (12:51):

Sure. My name is Danielle West Lane. I'm the public affairs specialist for the Social Security Administration, and I cover the North Florida area. My role is to educate the public about Social Security's programs and how Social Security can help families throughout the United States or North Florida area for us.

Keith Casebonne (13:12):

Absolutely.

Danielle West Lane (13:14):

I've been with Social Security for 17 years.

Jodi Beckstine (13:17):

Wow.

Keith Casebonne (13:17):

Wow.

Danielle West Lane (13:17):

I started as the claims specialist, so that means I was taking claims, retirement, disability, a little bit of everything. And then I did supervision for nine years, and in October 23, I started as the public affairs specialist.

Jodi Beckstine (13:31):

Fantastic.

Keith Casebonne (13:32):

Nice.

Jodi Beckstine (13:33):

Well, can you tell us a little bit more about SSA's Go Digital Campaign?

Danielle West Lane (13:37):

Yes, I can. We recently started Go Digital Campaign. Basically, what we do is the GO Digital Campaign is geared to help people do everything online and to make it easier to navigate their Social Security benefits. You have access to your personal and secure my Social Security account, and then you learn about all the available resources in the Social Security account.

(14:06):

Your My SS account is free and secure and provides you with the power to manage your benefits, access important documents, and receive alerts all online whenever it's most convenient for you.

Jodi Beckstine (14:19):

Okay.

Danielle West Lane (14:21):

To create your My Social Security account, you will need the login.gov or the ID.me account. And that recently started.

Keith Casebonne (14:29):

Yeah. Yeah.

Danielle West Lane (14:30):

Okay? We have several videos on YouTube to help you set it up, your login.gov account and your ID.me account. We have learned that the ID.me account may be easier to create than the login.gov account because some people don't remember a lot of their credit and things of that nature.

Jodi Beckstine (14:52):

Yeah.

Keith Casebonne (14:52):

Oh, sure.

Danielle West Lane (14:53):

So the ID.me account may be [inaudible 00:14:55]

Jodi Beckstine (14:55):

Okay.

Danielle West Lane (14:55):

Okay?

Keith Casebonne (14:55):

Okay.

Danielle West Lane (14:57):

Some things that can be completed with the My Social Security account, you can set up or change your direct deposit, you can update your address or phone number, review benefit estimates for future benefits, print your 1099 tax form. That's a big thing that people need. Sometimes people move and they may not notify Social Security, so they don't receive their 1099 because it goes to the old address.

Keith Casebonne (15:23):

Oh, sure. Yeah. Yeah. Yeah.

Danielle West Lane (15:27):

So they can print that online as well.

Jodi Beckstine (15:29):

Okay.

Keith Casebonne (15:29):

Okay.

Danielle West Lane (15:30):

Print your benefit verification letter.

Jodi Beckstine (15:32):

All right.

Danielle West Lane (15:33):

Some people need benefit verification letters to get housing, to get maybe food stamps, some services with Department of Children and Family Services.

Jodi Beckstine (15:43):

Okay.

Danielle West Lane (15:43):

So that's what they'll need a benefit verification letter for. Check the status of your application. If you file for retirement disability, you can go online and check the status of your application. You can request your replacement Social Security card and Medicare-

Keith Casebonne (15:57):

Wow.

Jodi Beckstine (15:58):

Oh, wow.

Keith Casebonne (15:59):

Goodness.

Danielle West Lane (15:59):

... online with your My Social Security without having to come to the office.

Jodi Beckstine (16:00):

Yeah.

Keith Casebonne (16:01):

That's amazing.

Danielle West Lane (16:04):

Yeah. That's helped.

Keith Casebonne (16:05):

Wow.

Danielle West Lane (16:05):

Yeah.

Keith Casebonne (16:05):

Wow.

Danielle West Lane (16:08):

So we've found that the best way to handle your Social Security business is online with your My SSA account. I just gave you all those huge benefits of doing everything online. You can call the National 800 number, which is 1-800-772-1213.

Jodi Beckstine (16:26):

Okay.

Danielle West Lane (16:28):

If you can't handle your business online, or you can call your local field office as well. You can find that at ssa.gov/locator. You go in and put your zip code and it'll bring up the Social Security office that's closest to you as well as other Social Security offices around your area, okay? And then if you need to visit a Social Security office, I highly recommend that you get an appointment so you don't have to just walk in and sit for so Long.

Jodi Beckstine (17:02):

Okay.

Keith Casebonne (17:04):

Sure. Wow. That's a very complete service online. There's a lot you can do online. Yeah.

Danielle West Lane (17:09):

Right. I mean, you can apply for your benefits online. I mean, you can do just about everything online without having... I know some people like the personable face-to-face, but if you don't have to, you can do just about everything online with My Social Security account.

Keith Casebonne (17:27):

Are there a couple of specific examples of services that someone would have to come to the office for that you can think of?

Danielle West Lane (17:33):

Yes. Representative payee.

Keith Casebonne (17:36):

Okay. Okay.

Danielle West Lane (17:36):

If somebody needs to apply to be a representative payee, they have to come into the office.

Keith Casebonne (17:40):

Okay.

Danielle West Lane (17:43):

And a lot of times when people may be homeless and they need to do a living arrangement change, a lot of times they don't have access to a phone or they need to come in to do-

Keith Casebonne (18:00):

Sure. Make sense. Yeah. Yeah. Yeah.

Danielle West Lane (18:01):

... the living arrangement things and things like that. But it's fewer and far between, but some people may have an overpayment. They don't understand why they have that overpayment. So they would come into the office and we would have to explain it to them.

Keith Casebonne (18:16):

Gotcha. Makes sense.

Danielle West Lane (18:16):

Okay?

Keith Casebonne (18:16):

Yeah.

Jodi Beckstine (18:21):

So if someone's nervous about using online services, what can you say to them to kind of ease their fears about doing it online versus in an office?

Danielle West Lane (18:31):

I do it. And I work for the Social Security Administration. I'm very, very leery of putting my Social Security number on different things.

Keith Casebonne (18:42):

Right. Right.

Danielle West Lane (18:43):

I mean, even at the doctor's office or the dentist office, I don't like putting my Social Security number down. I say try it and if you don't like it, then we can put a hold on it where you can't create the My Social Security account.

Keith Casebonne (19:02):

Okay.

Danielle West Lane (19:03):

Yeah. Just try. Give it a try.

Keith Casebonne (19:05):

Awesome.

Danielle West Lane (19:06):

Yes. And I know older people really don't want to do it, but I say just give it a try.

Keith Casebonne (19:11):

Cool. We'll remind people where they should go to get more information and start their account.

Danielle West Lane (19:16):

Okay. They go to www.ssa.gov and they do /my, M-Y, account, A-C-C-O-U-N-T.

Keith Casebonne (19:27):

Awesome.

Danielle West Lane (19:27):

So ssa.gov/myaccount. That's how they can set up their My Social Security account.

Keith Casebonne (19:33):

Awesome.

Jodi Beckstine (19:33):

Fantastic.

Keith Casebonne (19:33):

All right.

Danielle West Lane (19:34):

And they can also go to ssa.gov and it'll be up there in the heading that will also lead them there to do that My Social Security account.

Keith Casebonne (19:41):

Cool.

Jodi Beckstine (19:41):

Wonderful.

Danielle West Lane (19:41):

Okay?

Keith Casebonne (19:41):

All right.

Jodi Beckstine (19:44):

All right. Well, thank you so much for coming.

Danielle West Lane (19:45):

Thank you.

Jodi Beckstine (19:45):

We enjoyed having you.

Danielle West Lane (19:47):

Thank you so much for having me. This is excellent.

Jodi Beckstine (19:52):

Hi, Aaron. Thanks for being here. Can you introduce yourself, your role at DRF and what the PAMI program does?

Aaron Victoria (19:58):

Certainly. So thanks for having me. My name is Aaron Victoria. I am the PAMI Grant Coordinator with Disability Rights Florida. So we are funded through a batch of federal grants that allow us to do work for different types of disabilities, our clients with different types of disabilities. And the PAMI grant allows us to work with individuals, protection and advocacy for individuals with mental illness. So as the PAMI grant coordinator, I help with managing and overseeing our work that relies on that grant.

Keith Casebonne (20:31):

So what should folks understand about Florida's mental healthcare system?

Aaron Victoria (20:35):

So it is convoluted. It's hard to navigate, and just understanding what services are available and best for you and your loved ones, who operates those services and how to access them. Who do you need to talk to? How do you get access to the programs? That's hard enough. It's even harder when you're dealing with it in a state of crisis.

Jodi Beckstine (20:59):

Yeah.

Keith Casebonne (21:00):

Yeah. For sure.

Jodi Beckstine (21:02):

What are some common points where people or families can get confused or stuck?

Aaron Victoria (21:08):

I think it's the mixing between the types of facilities. So if specifically where they need to go for help, who is operating those types of services that say you need a mobile response team, if someone's having a crisis in the house, who do you call? I think just getting that information and knowing who to contact for the necessary resources is probably the biggest challenge.

Jodi Beckstine (21:32):

Yeah.

Keith Casebonne (21:33):

That makes sense. So what can someone do if they feel that they're not being listened to or respected or included in decisions about their care?

Aaron Victoria (21:44):

That's where Disability Right Florida is a great option. That's kind of our MO, that's what we do. We are the state's protection advocacy organization. So if you're unsure or you feel like you're being taken advantage of or you're not being heard, reaching out to Disability Right Florida is a good first step. We can help you directly. We can at least point to the direction of some resources and individuals that are better equipped to be center inclusive.

Jodi Beckstine (22:09):

So what's a big misconception about mental health rights in Florida?

Aaron Victoria (22:14):

That if you are in-patient, in short, you don't have rights.

Keith Casebonne (22:19):

Oh.

Aaron Victoria (22:19):

And that whatever they tell you at the facility is rule of law and that is not true. You are protected by a whole list of rights basically under Chapter 394 of state law. It outlines all of your rights as a patient and you have a lot of them and you have the power. Even if you are committed in an in-patient setting involuntarily, you have a voice and you can express that voice. You have the right to do that.

Jodi Beckstine (22:48):

Yeah.

Keith Casebonne (22:48):

Excellent. Well, Aaron, thanks so much for spending a few minutes with us. We really appreciate it.

Aaron Victoria (22:52):

Awesome. Thank you for having me. This was a joy.

Jodi Beckstine (22:58):

All right. For those of who are new to the Foundation of Independent Living, can you introduce yourself and tell us a little bit more about it?

Betty Cadet (23:04):

Sure. So my name is Betty Cadet. I'm with the Foundation for Independent Living. We're located in Coconut Creek, Florida, which is in Broward County.

Jodi Beckstine (23:14):

Nice.

Keith Casebonne (23:15):

Awesome. So what kind of supports and opportunities does the foundation provide day to day?

Betty Cadet (23:21):

Sure. So we are a nonprofit organization, a 501(c)(3) organization, and the services we provide, I call it the all-inclusive package because we offer a wide range of services for our adults with intellectual and developmental disabilities. Our youngest resident is 22, as old as 76.

Jodi Beckstine (23:45):

Oh, wow.

Betty Cadet (23:46):

Yeah. So yeah, wide range of different levels, different ages. We provide different services from a programming. We have a full calendar of activities that we offer our residents to keep them busy during the daytime. Vocational is a big one. We help, or I should say assist them with finding work opportunities, volunteer opportunities, get them out in the community, make sure they're integrated in the community.

(24:14):

So about the foundation, just a little side note. We are not a medical facility, so all of our services, we outsource that service. So when the families send their family member to our organization, we make sure to coordinate their doctor appointments, take them on doctor visits, sit in with the resident to make sure that we're gathering the right information for that family.

Keith Casebonne (24:39):

Interesting.

Jodi Beckstine (24:40):

Fantastic. What's a common misunderstanding about the adult programs that FIL has that you want to maybe clear up for the general public?

Betty Cadet (24:49):

Sure. Sure. So FIL, we are such a unique organization. So we are a private self-pay, which is not too common in this industry. A lot of organizations, they take government funding or health insurance. We don't take any of those fundings. We are strictly self-pay.

Jodi Beckstine (25:13):

Okay. Yeah.

Keith Casebonne (25:14):

So who is eligible and what's the first step to get started with FIL.

Betty Cadet (25:20):

So eligible, first off, 18 plus, needs to be adult. We do an assessment because in order to be part of our program, you need to be self-sufficient, high functioning, making sure that they are able to mobilize themselves. So if you're in a wheelchair, because we don't have those type of ADA compliances, we are ADA compliant. However, with our setup of our organization, we have to limit that.

Keith Casebonne (25:46):

Sure.

Betty Cadet (25:47):

Yeah. Behavioral, that's another component to our program. We don't really deal with high behavioral residents. All of them are usually stabilized, managed through medication.

Jodi Beckstine (26:01):

Okay.

Betty Cadet (26:02):

And of course, you will come in, take a tour, you'll meet with our marketing director, and she's the best at what she does. She does the first run through in terms of getting to know the family, getting to know what they need, what they want, and if we are a good fit for them, and as well as them being a good fit for us.

Jodi Beckstine (26:19):

Sure.

Betty Cadet (26:20):

Absolutely.

Jodi Beckstine (26:20):

Yeah. So where can people learn more about FIL?

Betty Cadet (26:24):

So many places. Our social media is hot right now. So on Facebook, we're the foundation for independent living. On Instagram, we're at FIL Community.

Jodi Beckstine (26:35):

Okay.

Betty Cadet (26:35):

You can find us there. And our biggest platform would be our personal website, www.filinc.org.

Jodi Beckstine (26:43):

Fantastic.

Keith Casebonne (26:44):

Well, thank you so much Betty, for joining us. We appreciate it.

Betty Cadet (26:46):

Thank you for the opportunity.

Jodi Beckstine (26:46):

Yes, for joining us.

Betty Cadet (26:47):

Come check us out.

Keith Casebonne (26:49):

Indeed.

Betty Cadet (26:50):

The new program in town up and rising.

Jodi Beckstine (26:53):

Wonderful.

Keith Casebonne (26:53):

Excellent. Nice. Thank you.

Betty Cadet (26:54):

Thank you.

Jodi Beckstine (26:58):

All right. Thanks for coming. For listeners who may not know you yet, please introduce yourself and your role at UF Center for Autism and Related Disabilities.

Ann-Marie Orlando (27:07):

Sure. So my name is Ann-Marie Orlando, and I'm the director of the UF Center for Autism and Related Disabilities.

Keith Casebonne (27:16):

Awesome. So what are some of the main reasons that people reach out to CARD?

Ann-Marie Orlando (27:21):

Well, lots of reasons, I think, right?

Keith Casebonne (27:23):

Sure.

Ann-Marie Orlando (27:23):

Because one, we're funded through the State Department of Education, and our goal is to increase public awareness about autism. Our goal is to provide professional learning opportunities to anybody who wants to learn more about autism. So parents, caregivers, grandparents, siblings, educators, providers, therapists, physicians, anybody, employers, anybody who wants to learn more.

(27:49):

And then we also do what we call technical and individual assistance, and that's where we work with an individual or a provider or caregiver with the goal of building capacity of that community to support a person with autism wherever they live or play [inaudible 00:28:08]

Jodi Beckstine (28:10):

So what advice would you give to someone who feels overwhelmed maybe trying to find autism [inaudible 00:28:19]

Ann-Marie Orlando (28:19):

It can be very overwhelming because there's so many resources out there and it's hard to know how to be a critical consumer of all of the different resources and information that's available to us through all of the different media. So we really recommend that people in Florida contact their local Center for Autism and Related Disabilities to connect with one of the autism consultants to learn more about the disability itself and about all of the different resources that are available locally, statewide, regionally.

Keith Casebonne (28:56):

Well, my next question was going to be, what is the first step to get connected? But I think you just answered that. Is there any other advice you can give or are there anything [inaudible 00:29:04]

Ann-Marie Orlando (29:05):

Yeah. So we encourage people to reach out to CARD. Most of the CARD centers have on their website a link to a pre-registration form where people can fill it out at their convenience. And then typically I'll speak for a UF CARD and what we do. A CARD consultant or an intake coordinator will reach out to the person, collect additional demographic information. We have to establish a diagnosis does exist, and so we have to have documentation of that. So we'll ask for that.

(29:38):

At our center, we typically invite people to an orientation because we really want them to learn more about CARD services and how we can support people because it can be so confusing because CARD does not diagnose and CARD does not provide direct therapy services, although our staff members, they're experts in the field, so they've all done that work, so that's why they're very skilled at providing information, resources, recommendations on how to best support an individual.

(30:06):

So I recommend call, go on the website, email, fill out the form, somebody call you back. And if they don't, just keep [inaudible 00:30:15]

Keith Casebonne (30:15):

Excellent. Great. Well, thank you so much, Anne-Marie. I really appreciate you spending a few minutes with us and talking about CARD. Thanks so much.

Ann-Marie Orlando (30:24):

Absolutely. It's my pleasure. Thank you all so much for being at Family Cafe and for doing this work. Appreciate it.

Jodi Beckstine (30:24):

Thank you.

Keith Casebonne (30:33):

Hey, Cherie. Thanks for being here. For listeners who may not know you yet, please introduce yourself and tell us your role at Disability Rights Florida.

Cherie Hall (30:41):

Hi, I'm Cherie Hall. I'm the executive director with Disability Rights Florida.

Keith Casebonne (30:46):

Okay.

Jodi Beckstine (30:49):

So I have a question for you. When people think about disability rights, what's one thing you wish they understood better about what that looks like in everyday life?

Cherie Hall (31:00):

So disability rights is everywhere. It's everywhere you turn. Whether it's an accommodation at a doctor's office or allowing your service animal to go into the voting place with you, it's just everywhere. People think about sidewalks and ramps and that's not all it is. And a lot of it is just so misunderstood that it just doesn't allow for access for everyone.

Jodi Beckstine (31:31):

That's a good answer.

Keith Casebonne (31:34):

For sure. Well, so what are some of the most common reasons that people reach out to Disability Right Florida?

Cherie Hall (31:39):

We get a lot of calls around the individual education systems, primary education. Sometimes we get a few related to work accommodations, but a lot of our calls are related to healthcare access to Medicaid, access to APD. And so we can't take all those calls, obviously. So we just try and provide as much information as self-advocacy support as we can.

Jodi Beckstine (32:15):

So what's one barrier you see repeatedly across Florida that you wish people were talking about a little bit more?

Cherie Hall (32:24):

I would say transportation. I mean, I think if you're affected by it, you're talking about it, but it's not really being talked about at a level where change can be made. People rely on public transportation to get to doctor's offices, to get to their jobs, to go to the grocery store. And it's just not always there.

(32:51):

Someone may live close to a county line and their work is 10 minutes away, but it's in another county. So then they have no access to get to their employment. So it's just a challenge everywhere. And the systems are not always well-designed, so people end up can wait 45 minutes, sometimes even an hour, hour and a half for a ride. And when you're on a schedule and you need to make a doctor's appointment, it just doesn't work.

Jodi Beckstine (33:22):

Yeah.

Keith Casebonne (33:23):

Yeah. That would make sense. That's a good answer. So what is one change that you've seen that maybe gives you hope and what helped make it happen?

Cherie Hall (33:34):

Well, I haven't seen very shocking systems change, but I have seen little incremental changes. And I think in the last few years, the change I've seen the most is people standing up and advocating for themselves. I mean, that gives me a lot of hope that people are showing up and they're fighting for these rights that they've had for 30 years and they're just not being honored.

(34:01):

So the generation that we have now and my generation actually, I mean, the attitude has changed and people are starting to be present and fight and that's great. That gives me hope.

Jodi Beckstine (34:15):

Yeah, absolutely.

Keith Casebonne (34:16):

Right.

Jodi Beckstine (34:17):

So what is the biggest myth about Disability Rights Florida's work that you want to correct?

Cherie Hall (34:24):

Well, I think a lot of our clients, customers that we serve, people that call us are given information and referrals. And that kind of breaks my heart that we can't take everyone's case and help them with advocacy and show up in some litigation for them. But honestly, we get about $3 per person for every person with disability in Florida.

(34:54):

And so we end up having to refer to other resources, but we try and do a very thorough job of providing all the resources. And also we have a ton of information on our website. So people sometimes just call us, but the answer is right there on our website, whether it's in a video or a post or a blog even. I mean, the information is there and people can use that to help self advocate for themselves.

Jodi Beckstine (35:24):

Absolutely.

Keith Casebonne (35:25):

I agree. So how can people get in touch with Disability Rights Florida if they're looking for help?

Cherie Hall (35:32):

So the best way to do that is go to our website, which is disabilityrightsflorida.org. And we have a place where you can do an online intake. The online intake is very helpful in that it gives us a little bit more information. If that's not accessible for people, we do have a 1-800 number that individuals can call. And in fact, we're here at Cafe, so you could stop by our booth and do an intake right there.

Jodi Beckstine (36:01):

Absolutely.

Keith Casebonne (36:03):

All right. Very good. Cool. Well, thank you, Cherie, so much for spending a few minutes with us and telling us more about the work that Disability Right Florida does.

Cherie Hall (36:11):

It was a pleasure to be here.

Jodi Beckstine (36:13):

Thank you.

Cherie Hall (36:13):

Thank you.

Keith Casebonne (36:13):

Thank you.