The Florida Roundup - Caring for people with Alzheimer’s and dementia; Autism-Friendly Cities 

Episode Date: July 21, 2023

More Floridians are becoming caregivers for people with Alzheimer’s and dementia, and the number is only expected to increase. Also, what does it mean to be an ‘Autism-Friendly’ City?

Welcome to the Florida Roundup. I'm Danny Rivero in Miami. And I'm Matthew Petty in Tampa. While more Floridians are living with Alzheimer's disease, by the year 2025, an estimated 720,000 seniors in the state are expected to have Alzheimer's. In the Villages, America's largest retirement community devoted caregiver Dale Fink noted the prevalence of Alzheimer's during an interview last fall. Being in a retirement community, especially here, there's hardly a soul you talk to that doesn't either have somebody in the family or a friend or somebody who's been touched by this disease. Dale shared his experience with Joe Burns, reporter for WMFE in Orlando. Joe joins us now. Thanks for being here, Joe. Oh, yes, of course.

Also joined by Stephanie Columbini, reporter for WSF in Tampa and Health News Florida. Stephanie, great to have you along as well. Thank you. And you can join the conversation, too. We'd love to hear your stories about if you are a caregiver, if you're helping a loved one who's dealing with Alzheimer's or another form of age-related dementia, give us a call. 305-995-1800. That's 305-995-1800. You can also send us a tweet.

We're at Florida Roundup. Stephanie, let's talk a little bit more about people caring for Floridians living with Alzheimer's. Now, one Clearwater couple you talked to recently is a woman who's caring for her wife who has Alzheimer's, and she described what she called a tribe of people who pitch in to help her care for her wife. Just tell us a little more about this couple and the challenges they face. Yeah, it was great to meet Ellen and Linda Gavel. Linda is 73 and has Alzheimer's, and her wife, Ellen, who's 57, is balancing taking care of her while working a full-time job, which is extremely challenging. Linda's had the disease for about seven years now, and so they've been watching it slowly progress and increasingly. And yeah, she does have a tribe of people, which she said is really fortunate. They have a lot of good friends that will pitch in when Ellen needs a hand,

giving Linda rides to appointments or just kind of spending time with her when Ellen needs a break and they recognize that's not something a lot of caregivers have yeah what's a day in the life like for Ellen yeah it's it depends she's got some flexibility with work fortunately where she can work from home a few days a week and on those days she's really actively taking care of Linda, making sure she doesn't knock into something or get upset if she forgets how the TV remote works or something like that. And then on the other days that she has to go into the office,

that's when the tribe really comes in handy. Friends will take Linda to an adult daycare center in their community, and that's a place that Linda and other seniors who need assistance can, you know, there's medical staff on hand just in case, but they're doing fun activities like bingo or painting. They have an Elvis impersonator stop by once in a while. So Linda's got that engagement and socialization while Ellen is at work on those days. And that's really valuable. Now, the number of Floridians with Alzheimer's is climbing sharply.

I mean, 720,000 is the projected number by 2025. That's a pretty big jump from what we are now. What do we know about why that number is rising? It's pretty simple. There are just a lot more people. We're seeing population growth. We're seeing more Floridians live longer. And you're a lot more at risk for Alzheimer's if

you're in your 70s, 80s, 90s than when you're younger. And so it's just kind of the math that we are seeing more people, more cases of Alzheimer's. And the other thing, you know, is research has come a long way, but we still haven't had that major breakthrough of like, we found the cure to Alzheimer's or a way to really stave off this disease and so unfortunately until that happens we're going to see the number of cases rise. Stephanie what about specific risk factors like ethnicity or socioeconomic status what are researchers believe is out there that can serve as indicators for Alzheimer's? Yeah there are some groups who are more at risk research shows black seniors in America are twice as likely than white seniors

to have Alzheimer's. Hispanics are one and a half times as likely. And a lot of that has to do with socioeconomic status. You know, they face more barriers to health care, whether that's lack of insurance or, you know, transportation to get to appointments or money to pay. You know, some of these experimental drugs for Alzheimer's are really expensive. And so you can't pay for that out of pocket necessarily. And so they face financial barriers to health care. They're also more likely to be at risk for some physical chronic conditions that put people at higher risk of Alzheimer's. Things like high blood pressure or heart disease and so there are a variety of reasons that certain folks are higher risk. Back to the couple you talked to, I mean Linda

who has Alzheimer's has not quite progressed far enough that she doesn't isn't aware of what's going on and you talked to her what did she say about living with this disease? It's hard and yeah I think there is a, you know, somebody with Alzheimer's just having no awareness of what's going on, no memory. Linda's with it and knows that sometimes she's forgetting, you know, where the ice cream is that she eats every evening and has to be reminded it's in the freezer or, you know, things like that. You know, we would have our interview and she'd say, you know, really well thought out things and then recognize she kind of was forgetting her train of thought halfway. And so that can be painful and scary and frustrating. She knows that a lot of people

are working really hard to help her. And obviously there's, you know, some pain in that, but also she feels really blessed and she wants to share her story so that other people can relate. is really blessed and she wants to share her story so that other people can relate. The number is 305-995-1800. I want to go to the phones now. We have Omar calling from Fort Lauderdale. Omar, thank you so much. You're on the line. Hey, thank you. Thank you for having me. This is an emotional topic. I'm losing my parents and I'm a dad myself. How do I control my temper as a caregiver that I get frustrated that if they can't remember something or they can't do something right, I'm not mad at them. I'm just mad at the situation that I'm losing them. So how do I control myself? Thank you.

Thank you for that call, Omar. Joe Burns, I want to bring you into this conversation. Joe, you've done quite a bit of reporting on elder care, including talking to families who have someone with Alzheimer's that are dealing with many of these issues that Omar just brought up. I mean, what have you heard in terms of how people deal with that? I mean, it's not the easiest thing in the world. It's far from it. of how people deal with that. I mean, it's not the easiest thing in the world. It's far from it. Oh, yes, that's absolutely right. Hey, before I really get into this,

I wanted to sort of bring up Tony Bennett because that's obviously a huge star, wonderful man who had Alzheimer's and passed away today. had Alzheimer's and passed away today. But yeah, that issue of caregivers and the frustrations that they face is huge. And I guess I would say, don't be afraid to ask for help. Don't be afraid to reach out to your friends and to reach out to a counselor, to reach out to the Alzheimer's Association, to try to find strategies for coping with that. Because obviously, your safety and the safety of the person you're taking care of has the ultimate priority. has the ultimate priority. And Joe, you know, five and a half million Floridians currently are over the age of 60. That's going to go up, we know, as the years progress.

And you've been reporting on a segment of the population that's uniquely vulnerable to hurricanes because there's multiple factors that impact people with natural disasters. Can you tell us about this population of Floridians, specifically with Alzheimer's, and why hurricane season is particularly challenging for them and their caregivers? Dr. Absolutely. There is a large population of people with Alzheimer's who are aging in place, who are still at home. You know, there's some people who are in memory care facilities or nursing homes, and there are plans in place enforced by the state to make sure that they have the right disaster preparedness and all of that. But that huge percentage of the population of Alzheimer's patients who are living at home,

of the population of Alzheimer's patients who are living at home, they don't have those same kind of protections. And boy, are they vulnerable. They're really not, you know, they themselves, they're not able to take the precautions that they need. Their caregivers face all sorts of challenges already and can hardly find the time to think about hurricane preparedness. And I can hardly find the time to think about hurricane preparedness. But when a storm is coming, it can be extremely stressful for the Alzheimer's patients. And they are not obviously in a position to deal with that stress. So that, and you know, you think, okay, we're going to go to a shelter, right? Well, that's not a simple matter for someone dealing with an Alzheimer's caregiver for somebody with Alzheimer's because of all the things involved in that. But, yeah, so they're facing a unique challenge as hurricane season gets underway.

And one of the people you spoke to in your reporting talked about how media coverage of hurricanes and hurricane preparedness can add to the anxiety of someone living with Alzheimer's that they already face. Did you learn anything from that conversation about how we in the media talk about natural disasters, pending natural disasters, hurricanes, et cetera? I did. And that's Kathy in Melbourne, just a wonderful woman taking care of her husband of many years. And what happened was obviously on tv they're listening to these all these alerts about you know tornado warnings and the tornado warnings were like all the across the state they're in melbourne this is before this as the storm was approaching um on the other side of the state so but her husband wasn't able to understand

really what was going on so he became more and more anxious and upset, jumps up out of his chair, runs outside, is slamming the hurricane shutters and talking about the coming storm. So she goes out and tries to tell him, you don't need to do that, honey, you know, calm down and he grabs her and it looks like he's going to punch her which is not like him at all but because of the extraordinary anxiety and confusion that he felt that was the reaction he had and that's just an example of the kind of anxiety that reporting about an impending storm can cause. And I think it's just something for us to be aware of, that people who are listening to us can be in all sorts of different mental situations, you know, may not be able to deal with the anxiety that our reporting causes. And Joe, you mentioned that certain state regulations about hurricane preparedness in particular, they mostly focus on

facilities and not so much on people receiving care in their own homes. The state estimates that there are 2.7 million caregivers in Florida, and the economic value of their work is placed at about $40 billion annually. What, if anything, does the state offer the caregivers as a means of support in facilities and also in homes? Right, so there is some specific support that is given for caregivers for people with Alzheimer's. There's a program of, I think it's 18 memory clinics around the state that provide diagnosis, awareness, and provide some respite care. And this is really important for caregivers to basically help give them a break from the overwhelming responsibility of

caring for a person with dementia. So the state has some funding for that. You know, you could easily argue it's really not enough. But one possibility, you know, would be to, because there are ways that through the different councils on aging around the state that that services reach these people. They reach them through Meals on Wheels. They reach them through some health care programs. The idea that perhaps. And many cities and counties, you know, do some of that on their own, too. It's not all at the state level, right? You're absolutely right. You're absolutely right.

In fact, there are some counties that make it a bigger priority to provide disaster preparedness for seniors aging in their homes. 305-995-1800 is the number to call. I want to hear from you if you've got stories about what it's like being a caregiver, challenges you face, maybe some stories of hope as well, what's working. 305-995-1800. You can also send us a tweet. We're at Florida Roundup. Stephanie Colambini with me in the studio here in Tampa talking about resources.

Caregivers who are unpaid are putting a lot into it. What do we know about the kind of, I guess, estimated value of their work in this field? Yeah. You know, for Alzheimer's caregivers, they're estimated to put about $23 billion worth of unpaid care in Florida. Wow. Yeah. And it's expensive in a variety of ways. The Alzheimer's Association found nationally Alzheimer's caregivers found nationally Alzheimer's caregivers were twice as likely than caregivers of people with other conditions, not dementia, to have to pay. They had twice as high out-of-pocket

costs. I think the average in 2021 for an Alzheimer's caregiver was over $12,000 that they're spending on their own. People might have to quit their jobs or cut back to part-time, you know, in order to care for their loved ones. So that's lost economic work that they're getting income-wise. So it's a very challenging thing to have to do. You might have to retrofit your home. So yeah, they're doing a lot of valuable work and a lot of that's coming out of their own pocket. Right. And then as you point out in the reporting you've done, it's a bunch of people around that caregiver too that are helping support them so there's a whole ecosystem of people who are pitching in

here. Yeah definitely it's a team effort it needs to be. What do caregivers of people living with Alzheimer's like Ellen, Wivel, what do they want from state leaders? More help you know Joe was talking about some of those programs and this year the state did boost funding for them in the help, you know, Joe was talking about some of those programs and this year the state did boost funding for them in the budget. But, you know, the Alzheimer's Disease Initiative, which is a program that can help provide funding for caregivers to maybe bring in nurses for home health care or get respite relief, that has thousands of Floridians already on the wait list. So maybe this increase in funding will help clear that backlog. Maybe not. So they need to, you know, further invest because right now there is a

wait list. And Medicare at the federal level really doesn't do much to cover, you know, things like adult daycare. Ellen has to pay for that out of pocket for her wife. And so, you know, that's something people have been calling for is for, you know, Medicare to do more to support people aging in place so that the solution doesn't have to be putting your loved one in an institution. I mean, there are some resources at the state level, right? I mean, what is out there for folks like Ellen? Yeah, I mean, those funding programs that can, there's different ones for home health care, community health care, where you can apply for some financial assistance to help pay for that kind of stuff. And yeah, you know, things like having a meal delivered can be a huge deal for a caregiver who's dealing with a lot of stress. One less thing they have to worry about. There's transportation things like the Govelles mentioned Pinellas County has a transportation

program where Linda can get like an Uber home from adult daycare if a ride isn't available for really cheap. So those are different ways that the state can help people. Yeah. Joe Burns, I want to ask you too about some funding. The new state budget signed into law in June allocates $65 million or so for Alzheimer's care and research. Do we have a sense of how this money will be spent and what that compares to last budgets, previous budgets rather? Right. So we had a $12.5 million boost to that program that Stephanie referenced, the Alzheimer's, oh gosh, ADI. So that would involve increasing funding for those centers, including for diagnosis and awareness,

and then trying to cut that wait list for respite care down from 16,000 to about 4,000. So that's some additional funding that they've put there. And there's also some programs funding the brain bus, about half a million dollars for that. That's an Alzheimer's Association bus that travels around the state, bringing awareness, helping people understand what are the signs that there may be dementia and the kind of resources that you can get. And also something called the FACE program, which is a support infrastructure, as they say, for caregivers and families of people with dementia. But that's really so far, I think, only helped about 250 caregivers.

We've just got a few more seconds until the break, but I want you both to stay with us. And Joe, I mean, your reporting has shown that there is just this kind of, there's a lot of folks dealing with this. And of course, you're kind of in the heart of the villages there. So you're pretty well aware of what's going on. Just in the last few seconds before the break, you know, what else are you seeing? What stories really stick when it comes to your reporting on that? Well, one of the things that you see in the villages is that there is a lot of support from other people. And the thing that Dale brought up in the quote earlier is that everybody has been touched by this. There's just a tremendous amount of support.

The type of stuff that Stephanie was talking about from others in the community have been through the same experience. And I think that's extremely valuable for caregivers for a family dealing with dementia. Stay with us, Joe Burns from WMFE and WUSF's Stephanie Colombini. We're going to continue the conversation about caregivers after the break. You're listening to the Florida Roundup from Florida Public Radio. Welcome back to the Florida Roundup. I'm Matthew Petty in Tampa. And I'm Danny Rivero in Miami. And we're continuing our conversation around caregivers,

specifically those who take care of people with Alzheimer's and other related dementias, with WUSF Stephanie Colombini and Joe Burns of WMFE. And we want to welcome Mary Daniel to the conversation. She's a patient advocate who took a job as a dishwasher at her husband's long-term care facility in Jacksonville at the start of the pandemic. So she could see him and be with him while those facilities were locked down because of COVID-19. Mary's husband, Steve, who is 69, died last December. He was diagnosed with Alzheimer's 10 years earlier. And we want to welcome your phone calls to this conversation. If you're going through something similar with a loved one,

with a family member, you can call us at 305-995-1800. And you can also tweet us at Florida Roundup. Mary Daniel, your story really struck a chord with a lot of people around the country when it came out in the midst of the pandemic, in the high moments of the pandemic. What have you heard from caregivers about the sacrifices that they made to care for their loved ones? That's a great question because I'm in a position now that my husband actually passed away seven months today, and I'm in a great position to actually reflect on that. What has all this meant to me, to him, to our family?

And I have to say that the work that we do, the endless hours, so much that we sacrifice, when all is said and done at the end, it's worth every bit of it. I'm able to live my life today with no regrets. And that's the work that I currently do with caregivers, is trying to empower them to make the right decisions, to take care of their loved ones, so that when they are in the position that I am today, that they get to look back with no regrets. And it's an incredibly powerful way to live the rest of my life. And can you tell us a little bit more about what went into your decision to become a caregiver to your late husband, entering the facility as a dishwasher, in a lot of ways just to have proximity to him, which was really complicated in the midst of the pandemic.

Alzheimer's patients, dementia patients need touch. They need physical touch and they need us to be able to hold their hands, to rub their backs. And that was missing during the lockdowns. I promised Steve on the day that he was diagnosed in 2013 that I would never leave his side, that I would be with him every day, that I would hold his hand every step of the way. And I wasn't able to do that. So I was desperate to get to him. I was trying to come up with all kinds of different ideas and suggested to his facility early on, maybe I could get a job.

I mean, it took them a few months to come around to that idea. get a job. I mean, it took them a few months to come around to that idea, but thankfully, July the 3rd of 2020, I did my first shift as a dishwasher and was able to go and be with him after. It was an incredible day, and it turned out to be a viral story that, thank goodness, got the attention of the governor. I got a seat on the task force to reopen long-term care facilities so that caregivers were represented. So it's really turned into be quite a show of the care and that we will do anything to get to our loved ones, to be with our loved ones, to care for them during a time when they need us the most. And about 720,000 Florida seniors will be living with Alzheimer's by 2025, according to the Alzheimer's Association. Mary, I mean, you mentioned you've met, you've worked to some degree with Governor DeSantis and other state leaders on these very issues.

Do you think the state of Florida is ready for that? That's a very high number. I don't know that you're ever ready for it. I do believe in my own conversations with him, and I have had many with him personally about this. I do believe that he is committed, that the state of Florida is committed to do whatever they can to help. You know, the bottom line is we need a cure. And that's not his department, but the care is. And so I do believe that there are programs in place. You mentioned some of them earlier in the program of different things that are happening around the state to help people, to support he believes. I know it. I've seen it in him. And so I think we're very fortunate in that regard to have him be so passionate about this illness and helping those who care for the ones who have it. The number is 305-995-1800.

Again, that's 305-995-1800. I want to go to the phones now. We have Julia calling from Jacksonville. Julia, thanks for calling the Florida Roundup. You're on the line. Thank you so much. I really appreciate the programs you all offer. So starting in about 2005, my mother had three strokes, did not develop Alzheimer's, but she had serious dementia. And we had to hire people to stay with her 24 hours a day.

And it cost about $100,000 a year, went through all of her inheritance that she had from her mother. And she died in 17. Then my husband also had developed dementia that was related to alcohol abuse, organic brain syndrome from alcohol abuse. So he doesn't have Alzheimer's, but he has serious dementia, doesn't know where he is, doesn't know who I am, you know, typical stuff. And respite care is really hard to get if you're not able to pay for it yourself. So what we're doing is I have taken both his

Social Security and retirement money, and I am paying somebody to come stay with him, well, essentially 30 hours a week so that I can go work and can go to church and to have a life. And even with that help, it's really hard. It's really, really hard. It's not easy to get benefits from people. But I did want to say that there's a national organization, and the website is alzforalzheimers.G, and they provide Zoom and face-to-face support groups, of which I have been in for now at least a year, and it's just a lifesaver. It doesn't cost anything. They have a lot of meetings all throughout the week, and because they're on Zoom, it doesn't really matter where the meeting is.

So I wanted to offer that up too. Thank you. Thank you so much for your call, Julia. I really appreciate it. Stephanie Colombini, I want to bring you back into this conversation. You have done some reporting about immigrants and the potential for incoming immigrants to fill some of these gaps in service to address these growing numbers of people who need care, who need care at home and in facilities and whatnot. Can you fill us in on some of what you've been reporting on in that regard? Yeah, that was a report released earlier this year from the American Immigration Council, and it showed that demand for health workers in Florida across the board rose 80 percent from 2017 to 2021. So huge jump in demand. And we've heard, you know, that was a huge problem during the COVID-19 pandemic. We've been, you know, which we're still in, but that, you know, we've had nursing shortages and other staffing shortages in the health care field. And so what this report talked about was that there's a lot of kind of bureaucratic there in the healthcare field, but because of

documentation they have to provide or clinical requirements about how long they have to spend, you know, being practicing in a hospital, it can be very difficult to continue that work here in the States. And so what this report argued for is we make it a little bit easier to provide immigrants with more resources to help in that process. They could be valuable assets in addressing this health care need. And of course, as we're talking about the number of Alzheimer's patients expected to balloon in the state, we're going to need all the long-term care support we can get, whether that's at nursing homes or home health care. So, you know, the more trained people and quality professionals we can bring on board, the better

305-995-1800 Join the conversation if you've got a story about what it's like to be part of this challenge Of caring for loved ones with dementia or other age-related illnesses 305-995-1800 Let's go to Patricia in Stewart Patricia, you're on the air Thank you You got it My husband, my late husband, had dementia Let's go to Patricia and Stuart. Patricia, you're on the air. Thank you.

You got it. My husband, my late husband, had dementia. I took him through that whole journey. It's a horrible journey, and at the same time, there are many blessings that came with the journey also. However, I was fortunate. I was living in another state at the time, and there's a federal program called PACE I don't know if y'all y'all have covered this yet but it's program for all-inclusive

care of the elderly it's a federal program but at the time he was going through dementia he passed in 2015 there were only 29 states in our country that offered that. And what PACE did when I got on that program is they co-mingled the Social Security money, the Medicare money, Medicaid money, everything together, and they custom tailor a program to each client. and they custom tailor a program to each client he had when I got him on before I got him on this program I was paying $20,000 a year in day program and that was just the day program not all the other expenses that went into taking care of him the pace program trying program tries to keep people, elderly people, out of nursing homes

because it's more expensive for the government when people go into a nursing home than if they can stay at home. So the at-home spouse makes a pledge that we will keep them at home as long as possible. And in return for that, we are giving everything free. Free. I didn't have to pay any co-pays, no insurance premiums, nothing. It was such a blessing at a time when I thought I was just going to absolutely lose my mind. The drugs that he needed were shrink-wrapped. I didn't have to make any pill packs up. All I had to do was be home once every two weeks to receive the drugs that he needed, period. Patricia, that sounds

like, as you say, a blessing, and I'm sure a lot of folks would be interested to hear about it. Thank you so much for your call. Sorry for your loss and obviously for the challenges you went through caring for your husband. Joe, I wanted to just kind of punt this to you because I'm wondering, I mean, that sounds like a great program. Just talk a little bit, if you could, about the resources that are out there for folks, whether it's federal or state-level resources that people may not be aware of. Joe, are you still with us? Yes, Matthew, I'm here.

Yeah. That program of all-inclusive care for the elderly or PACE is available in Florida. Just so you can look for it at the Department of Elder Affairs. Department of Elder Affairs. There are a lot of resources for people trying to find information about Alzheimer's and the program or the website that our guest referenced earlier, ALZ.org, is a good example of that with the Alzheimer's Association. And there are other agencies around Florida that help out for people with Alzheimer's. One resource that I've written about recently Matthew had to do with is a guide for caregivers for people with Alzheimer's. Right. Dealing with disasters and preparing for

hurricanes and coping with them when you're going through that experience. And you can find some more details about that on WMFE, right? A link to that guide? Yeah, absolutely. And it's extremely helpful as you're preparing for this type of situation with advice on how to talk with the person you're caring for and the special precautions that you need to take as a hurricane approaches and how to make decisions about what to do, I think is something that a lot of caregivers would find very useful.

Right. You're listening to the Florida Roundup from Florida Public Radio. Mary Daniel, I want to bring you back into the conversation. The organization that you started, Caregivers for Compromise, helped push through legislation in Florida requiring facilities to stay open even in the case of crisis like the COVID-19 pandemic. And that was a big success on your guys' part. So congratulations for that. But what is Caregivers for Compromise focusing on now and kind of moving into the post-pandemic world? We are actually focusing very heavily on federal legislation.

We do have an essential caregiver bill. It was introduced in the last session, has not been reintroduced yet. We anticipate that's going to happen within the next month or two. We already have 80 co-sponsors for that new legislation. We are working with the presenting congressman to work on the language specifically. We want to be allowed in essential caregivers, two specific essential caregivers to be allowed into the facilities following the same safety protocols as staff. That is what we have in Florida. That's what worked for us when we got back in in September of 2020 here in Florida. We believe that we can safely follow the same

guidelines as staff and we bring accountability. The staff brings accountability to us. We do it with them. I found that when I was there as a dishwasher, we all did better with safety protocols when we had other people watching. So we are working and we do believe this bill will be passed. We have bipartisan support. It's almost equally actually right down the middle. And so we do believe that this will pass in this session so that we as caregivers never have to worry about being isolated from our loved ones if there ever is any type of health emergency again. Want to go to the phones now? It's 305-995-1800. We have Ricardo calling from Vero Beach. Ricardo, thanks for calling. You're on. Thank you, sir. I was just wondering why is it that you guys don't have a federal program for us veterans, guys that served in the United States military that are either hospital corpsmen

or, in the Army's case, medics, and have those gentlemen or ladies to serve in the capacity of caregivers. Just wondering why is that not something that is not on the table? Thank you for the call, Ricardo. Joe Burns, I'll bring it to you. And I'm sorry, I don't know if I fully understand the question from Ricardo. But President Biden did issue an executive order earlier this year with some provisions about veterans caregiving. Do you have anything to add about that? caregiving. Do you have anything to add about that? I don't really have anything to add about that. In particular, I will say that there are a number of programs recruiting seniors to help as caregivers for other seniors. So we have a program that just started up in Centralida doing that as well but i think that is a real resource for people looking uh to to bring as we were talking about um immigrants being a good resource for filling in as as

caregivers um seniors themselves are a big resource and sometimes it's as a volunteer but often it's in a paid position at least in terms of respite care for people dealing with Alzheimer's. And Mary Daniel, a ticket to you quickly. We only have a couple of seconds left. Any last thoughts on this topic before we go to break? Again, I just want to say it's worth it. When we can look back with no regrets, it's an incredibly powerful gift that we give to our loved ones, but we get something in return for ourselves.

I want to say many thanks to our guests. We just heard from patient advocate Mary Daniel. Also, we were speaking with WMFE's Joe Burns and WUSF's Stephanie Columbini. Mary, Joe, Stephanie, thank you all so much for coming on. Thank you to all of our callers, too. Stephanie, thank you all so much for coming on. And thank you to all of our callers too. Thanks. Thank you. And coming up ahead on the Florida Roundup,

what does it take to create an autism-friendly environment? More Florida cities and businesses are finding out. You're listening to the Florida Roundup from Florida Public Radio. Welcome to the Florida Roundup. I'm Danny Rivero in Miami. And I'm Matthew Petty in Tampa. There's a growing number of autism-friendly cities in Florida. As the South Florida Sun-Central reports, Cooper City, a municipality in Broward County, was recently designated as autism-friendly. The he did so through a partnership with the University of Miami and Nova Southeastern University's Center for Autism and Related Disabilities, that's UMNSUCARD for short. So what does it mean to be autism friendly and what changes

did the city make to get here? Well joining us for a better understanding we welcome Cooper City Commissioner District 1 Jeremy Katzman. Jeremy thanks for being here. Thanks so much for having me today. Also joining us Parks and Recreation Director Stacey Weiss. Stacey thank you as well. Thank you for having me. And Luis Granat, Director of the NSU Satellite Office of UM-NSU-CAD. Luis thank you as well. Thank you, pleasure being here. You can, thank you as well. Thank you. Pleasure being here. You can join the conversation as well. Love to hear your thoughts on autism-friendly cities, what they mean and how they work. And if you have some insights into it, please give us a call. You

can reach us at 305-995-1800. That's 305-995-1800. And you can also send us a tweet at Florida Roundup. Maybe you live in a city that's been designated autism friendly. Tell us what that means, or maybe you're looking to get involved. Love to hear those calls. So let me bring you into this conversation. First of all, Jeremy, you brought this initiative to the rest of Cooper City Commission for consideration. How'd you find out about the autism friendly designation and why was it so important to you? the autism-friendly designation and why was it so important to you? Well, that's a great question. When we brought this to the city, it was about a year and a half ago. I was at the city's autism event that's held every year at the fire station that's put on by our parks and rec department and our fire department. And I was speaking with a young man named Andrew Grubb,

who was the president of a club at his high school called HAPI, Helping Adults with Autism Perform and Excel, and Dr. Larry Rothman, who is one of the co-founders of that organization. And I learned about what an autism-friendly community is and what it can do for a city like Cooper City. So I scheduled a city like cooper city so i i scheduled a meeting with the city manager and with stacy weiss and pitched the idea and what's so great about it is that because of state funding um nsu card uh offers this service and it's 100 free for our community to pursue this. So we engaged the opportunity about a year and a half ago. And at that time, the CDC statistics were one in 44 people

have autism, which is a staggering number. But I'll tell you in April of this year, when we received the designation, the new statistic is one in 36. It just shows you how many people are impacted. And I think we all know somebody who has autism. Yeah. Stacey Weiss, if I could bring you into this too, you're the head of Cooper City's Parks and Recreation Department, and that had a significant role in earning the designation. So tell us about some of the changes that were implemented. role in earning the designation. So tell us about some of the changes that were implemented. Thank you. Yes, I'm the Parks and Recreation Director and I was designated with taking the lead on receiving this designation. So I worked hand in hand with the organization UMNSU card

for the designation. And essentially, we had different tiers in which we had to go and train. Parks and Recreation was probably one of the largest trainings that had to partake in the activity due to the involvement that we have directly with our users of our programs. So in the process of working with the organization, we had to create essentially sensory maps so that if an individual on the spectrum was to visit one of our facilities, they would be able to navigate it in a relatively easy and accommodating form, creating sensory stations if somebody wants to come in and they want to register for a program. What we're looking to do long

term or ahead in the future is we're at register for a program. What we're looking to do long term or ahead in the future is we're at some of our larger scale events, we're going to have a sensory zone. So if there's fireworks, for example, we'll have noise canceling headphones available, we'll have sensory objects play, it's a designated area, so that people are able to enjoy our activities. And if they for any reason, they need any accommodations, we are able to enjoy our activities. And if for any reason they need any accommodations, we are able to make them and still have the experience enjoyed by our users. Yeah. I wonder if you could explain for our listeners, and for me actually too, what a sensory station is and tell us a little more about mapping and kind of how that works.

So the maps that we had to create, which are actually, those were created by the UM NSU CARD organization. What that does is that kind of walks through the areas. So for example, if an individual on the spectrum had to go to the bathroom, we have this map available. It just kind of pinpoints and identifies easier ways to, you know, if you have a member, if you have a participant that's nonverbal, they can look at the map and they easier ways to, you know, if you have a member, if you have a participant that's nonverbal, they can look at the map and they can navigate to get to the water station, the restroom, or a game room. It just kind of accommodates and gives them a broader understanding

of our facilities. We also, in our parks, we have what we call a store guard. It's a lightning prediction system. It's a relatively loud noise. So if you have an individual that has some kind of sensitivity to their ears, you know, and they see under a lightning watch, and those steps are all broken down. And again, they were broken down with our partners, the UMNSU card. A sensory zone, it can be various components. A smaller scale one, for example, would be if somebody was coming into the Parks and Recreation Department, and they wanted to register for a program, and they had a child with them that was on the spectrum, you have a certain area designated for them with sensory objects or toys

that can help keep the individual engaged for a certain amount of time and let the parent or the guardian conduct the business and try and make it a more welcoming environment um a larger scale at our events for example um would be to have a tent and again having appropriate um items and sensories um i don't want to use the word toys but objects in there um whether it's rockers um you know, having the noise canceling headphones available so that they can participate and still feel welcomed at the event. One of the other accomplishments that we

just did too was making an accommodation for a nonverbal individual to receive their passport in a very welcoming environment because we do issue, we do take the passport applications here as well. So just making accommodation and not going through a treacherous process in which the parent had explained in the past. It was very, you know, treacherous for the individual. Just again, being aware, making accommodations that we're reasonably able to do so. You're listening to the Florida Roundup on Florida Public Radio. Louis Grana, I want to bring you into this conversation. Thank you for joining us. Your organization, UMNSU CARD, has been working on this for more than 16 years now, at least

you in your personal capacity. How, if at all, has the public understanding around autism changed during your tenure? It's changed quite a bit. I mean, I've been around for 25 years and our center has been around in general for 27. And when I first got here, we had about 500 folks that were registered with us at our center now we have more than 12 000 going on 13 000 folks registered with us and through programs like autism friendly we try to create more inclusive environments is what we try and do and more of an understanding and awareness of not only card but but autism and the disability and what comes with it and through the trainings and the workshops and the awareness that we put out there with schools

and with different businesses related to autism friendly, different cities, like the folks from Cooper City have mentioned, and just treating individuals with autism and helping those family members support individuals with autism, the awareness has skyrocketed. Like the commissioner mentioned, it's one in 36 now

is the ratio. So through that, the awareness is amazing throughout the community. And here at our center, we're registering close to 20 families a week just here at the Broward NSU Card Center. So the awareness and the changes in the community have been amazing throughout the years that I've been here. And Louis, I mean, we've been talking about Cooper City. How many other, if at all, other Florida cities have received this autism-friendly designation from your center? Well, there are some cities in central and northern Florida that have received the designation. I'm not aware of those,

but just down here in South Florida, we know of Parkland has received the designation. Miami-Dade has some cities as well. And also Weston has received the designation here in Broward. And it's not only cities. I mean, we designate autism friendly businesses as well, whether it's dental offices, restaurants, gyms, just a host of businesses that have received the

designation. So it's a community-based program is really what it is, not just city, not just businesses. If anybody who wants to make their environment more autism friendly and more inclusive for individuals with autism, then we will assist with that. Right. Commissioner Jeremy Katzman, we're coming up right on the break, but the designation is relatively new.

How have residents reacted so far to these changes? Residents are really excited. Cooper City is someplace special and being more inclusive is part of that. And I just want to be say very clearly that being autism friendly, being earning this designation is the beginning, not the end. We are we our staff is now all trained, but and our public safety officers. Next step is the businesses. As Louis mentioned, we are going to be bringing in any business that's interested in Cooper City to earn that training so that they can proudly show the community that they're a place that's inclusive and welcoming. And then

even our residents, you know, so we're we're really excited about this. The residents are really excited because everybody knows somebody who's touched by autism. We've been speaking with Cooper City Commissioner District 1 Jeremy Katzman and Parks and Recreation Director of Cooper City, Stacey Weiss, and Louis Grana, Director of NSU Satellite Office of UM-NSU CARD. Thank you all for joining us. Thank you. Thank you so much. Thank you. Brady Corum and Jackson Harp. Richard Ives answers the phones. Our theme music is provided by Miami jazz guitarist Aaron Leibos at AaronLeibos.com.

I'm Danny Rivero. And I'm Matthew Petty. Thanks for calling and listening. Have a great weekend, everyone.