Disaster Preparedness with Vision Loss

Hadley

Disaster Preparedness with Vision Loss

Presented by Ricky Enger

Ricky Enger: Contemplating what to do in an emergency is never easy, but it's a lot harder to figure things out while the situation is happening. Being prepared ahead of time can make all the difference. In this episode, Hadley's Chief Program Officer, Ed Haines, joins us as we discuss emergency preparedness. I'm Ricky Enger and this is Hadley Presents.

Before we continue with today’s episode, we want to acknowledge that we often record shows weeks in advance of their release. In this case, just days after recording the episode you’re about to hear, Hurricane Helene brought significant devastation to areas within the southeastern United States. And as this episode is set to air, another hurricane is expected to make landfall in Florida.

If you’re looking for ways to help or if you’re in the affected areas and you need assistance finding resources, please check our show notes for links, including disasterassistance.gov for information on available support. Or you can call Hadley at 800-323-4238 and we’ll do our best to connect you with the help you may need.

And now, we return to our originally recorded episode.

Welcome to the show, Ed.

Ed Haines: Thanks Ricky, it's a pleasure to be here.

Ricky Enger: Yeah, it's really good to have you. It always is, although we're not talking about warm and happy stuff today. I do actually think though that it does feel good, or there's a sense of relief at least, to have certain things figured out ahead of time to be able to mark off the list and say, you know, I may not know everything, but at least I have some ideas of what to do if this particular thing happens.

Ed Haines: Yeah, very true.

Ricky Enger: So yeah, that's what we're going to talk about today is emergency preparedness. So just thinking about what you will do when something unexpected happens. And it was interesting as we discussed this because at first it was like, well isn't this a universal thing? Like if you've watched the news or you've read articles about what to do in an emergency, you probably know what you need to. But I'm not so sure that's true. As we were discussing things, are there some extra logistics that vision loss brings to the table as you're thinking about how to prepare?

Ed Haines: Yeah, that's a great question, Ricky. And I should say that for many years, in my earlier days at Hadley, I taught a course called Safety in the Home. And it was about emergency preparedness. I know that emergency preparedness involves a lot of common knowledge and general knowledge. We think we know a lot about it. There is a facet of emergency preparedness that people with disabilities or people with vision loss particularly have to think about. In our everyday life, we have a reasonable expectation of accommodation in public places and services. Those expectations, as we know, are not always met, but we have an expectation of them. In an emergency, in a natural disaster, basically the ADA flies out the window, the Americans with Disabilities Act. Honestly won't have any reasonable expectation of accommodation in public places or services. People who are normally designated to help us out are going to be busy or non-existent. Places that normally provide accessible resources to us may not be either reachable or they just may be gone.

So it's incumbent on folks to be as knowledgeable as possible about what resources they're going to have in the event of a natural disaster and where to find them. So it's all about prior planning and knowledge is power. And that's especially true if you have vision loss.

Ricky Enger: Yeah, that makes sense. Because if you're in a situation where it's every person for themself, you have to know what you need and either where to find it or maybe how to ask very succinctly ask for it, right? Because if people are busy and they're overwhelmed, it helps if you can voice what your needs are and then figure out if they can get met.

Ed Haines: That's very true and as much as possible to be as independent and self-sufficient as you can for meeting those needs. You know, there's a couple of things you can do right off the bat that can make a huge difference. The first thing is, in a lot of places where we live, the risk level for natural disasters has changed in recent years. That's due to a number of environmental circumstances. But areas that previously weren't vulnerable to flooding or weren't vulnerable to fires, now are. So, you need to know your neighborhood and your area's risk level, it may have changed. Find out what that is. If your vision has changed recently and you've been comfortable with that risk level prior to vision loss, ask yourself honestly, “Okay, I live in an area that is prone to intermittent flooding, that was okay with me when my vision was typical because I knew I'd be able to cope. Well, now that I've lost some vision, is that still okay? Am I confident that I can still do what I need to do to survive in the case of the next flood?” So, know your area's risk level and then know your own capacity to be comfortable with that.

The second thing you can do right out of the gate, almost every municipality, every county in the United States has some sort of emergency management coordinator. So it doesn't hurt to know who that entity is, if it's a group or a single person, and to make yourself known to that entity and to ask them questions ahead of time. Like, what are your plans if my street floods, where are we in terms of priority for rescue, etc.

If you belong to a peer support group, a vision loss support group, if there's a local emergency management coordinator, in my experience, those individuals are more than happy to come to talk to your group and sort of educate you as a community. So it doesn't hurt to find out who that entity is and try to engage with them.

Ricky Enger: Yeah, that's a really good point and one that I hadn't really thought about. So that's going on my list as well. I've been in my neighborhood for a number of years and just hadn't considered it. It's hurricane season here so this has come up a lot right now. They always say make sure that you have your ‘go bag’ or your ‘bug out’ bag or whatever it is that you're calling it. Make sure you have that ready. I'm wondering if there are things beyond just the traditional stuff that you should have food, water, maybe a change of clothing, some hygiene items, stuff like that. What beyond those things should we think about with vision loss? Does that change how we prepare these go bags?

Ed Haines: You know, I think it might. People with vision loss often use adaptive aids to make sure that they can do whatever they need to do. I'm talking about magnifiers, canes, even mobile devices. So if you can afford to, or if you have the ability to, it doesn't hurt to have extras of some of those things, at least an extra cane or extra magnifiers if you're using them.

If you are someone with hearing loss and you have a hearing aid, they're often very expensive, but if you have a cheaper version, it doesn’t hurt to pack one of those. If you can have duplicates of some of those critical adaptive aids that you use to accommodate your vision, I would recommend packing those.

Ricky Enger: Yeah, like you said, it's hard enough to afford one of them. The approach I tend to take is for my cane, for example. I have an old beat up one that's still functional. I wouldn't use it for daily use, but it is still good enough for, well, in an emergency. I guess the same could be true for magnifiers. Maybe you've got that drawer full of stuff and you have the one that, “this doesn't work for me every day, but in a pinch, it's still going to give me what I need,” right?

Ed Haines: Exactly. In my experience, folks usually have a drawer full of magnifiers. Since we're talking about magnifiers, it also needs to be said that most of those have integrated lighting with them. They're lighted magnifiers, so batteries are going to be critical as well. If you have an old magnifier that you want to include in your go bag, it wouldn't hurt to keep some extra batteries for that, especially if those batteries have been sitting in there a long time. It's likely that they're going to be worn out.

Ricky Enger: Yeah. What about other technology? We talked about mobile phones, and I will be the first to say that I depend on my phone a lot. But are there things that we should be thinking through? If I'm depending on my iPhone for everything, is that going to be sufficient for me to grab during an emergency or are there some other things I should consider?

Ed Haines: Well, that's a good question because phones are only as good as cellular networks and data services, right? Now, if those are disrupted, if your power is out and your router's not working or cell towers are down and you're not getting a signal, a lot of the apps that you might use, particularly for navigation and communication, are no longer going to be sufficient. If you use a lot of tech to accommodate your vision loss and if you can think of workarounds for that tech, they may not be as convenient. They may not be as easy to use. It's not a bad idea to have a list of those in your head and if you haven't done that in a while to practice them. I'll just give you an example. If you're using your phone for navigation as a GPS for instance, can you use a braille compass or a talking compass? There’re other ways to make sure you know where north, south, east, and west are. That may be really critical when you hear on the radio, okay, everybody head south because the disaster is approaching from the north. If there are ways that you can do things without tech that you can have as a backup, that's not a bad idea to have those handy and have that knowledge handy.

Ricky Enger: Yeah, I think that's good advice no matter what, because, you know, tech is as good as its battery in a lot of cases, and it might not be an emergency, but being out and about and suddenly you're without it, like, hmm, do I have those backup skills? So yeah, that's important. What about things like figuring out what's in your go bag, maybe you've thrown a lot of stuff in there and now you're pulling things out and all these packages feel the same. What is going to help with that sort of thing?

Ed Haines: Organization really. You know, when someone loses vision, usually they find out pretty quickly that being organized is a big help in terms of just getting things done and getting things done as quickly as you used to. That's true for anything in your go bag, particularly if you have food items and different types of bandages or whatever you decide to put in there. And there are lots of lists out there, by the way, for what to put in a go bag.

But they should be labeled in a way that you can quickly, not just slowly, but quickly access them and get exactly what you need right away. So you need to label them in a way that you can identify them easily, either with large print or braille. You may be having to look through that bag in the dark, and if your vision is limited anyway and the light is not so good, you need to find a bandage really quick or an aspirin. Have them labeled in some way that you can find them or organized in some way that you can put your hands on them right away.

Ricky Enger: Yeah, that makes sense. I was talking to someone recently and she mentioned even having a roll of tape or something so if you are away for a little longer than a night or a day or whatever it is, having ways to mark things that you get that may not be in your go-bag. Maybe you're in a hotel or something like that and you need to label the shampoo and conditioner, just something that you can use to mark things that aren't marked already, whether that's a 20/20 pen or again a roll of tape or what have you. So yeah, there's a lot you can do. What about things like meds and eye drops and things like that? Are there any special things we should think about or just kind of knowing that you're going to need some on hand?

Ed Haines: Well, yes to both of those questions. If you've lost vision because of diabetes or glaucoma, then it's possible that you are taking medication for both of those conditions. You're going to want replacements for those. Particularly with regard to diabetes, if you are regularly using a blood sugar meter, test strips, things like that, you'll need to have replacements for those, or at least have a place in your go-bag for those things.

There are some medications that you might need to actually keep cold, so then you'll have to have a cooler on hand and a supply of ice or some kind of coolant to keep that stuff at the right temperature. There are some considerations if you've lost vision due to a medical condition that does require you to keep track of medication levels and sugar levels and that kind of thing.

Ricky Enger: A lot of what we've talked about so far is very physical, tangible stuff. So various items and various things that you can touch, mark, or see or whatever. But information is equally as important as the devices or items that you carry with you. I'm wondering if we can just talk about the kinds of info that you should have on hand and maybe how you go about doing that.

Ed Haines: Sure. We've all heard that we need to keep an emergency contact list, for instance. And for most of us that contact list, and I know mine is, it's on the phone, right? Okay, it's on my phone. But my phone is also locked. So if I've been injured in an emergency and I'm unable to unlock my phone for some reason, and someone who's assisting me needs to find out where my emergency contacts are, they're not going to be able to find them. So it's helpful to have a printed or braille version as well. Don’t just assume you can access your contact list on a mobile device. Other people need to access it too. And then it's helpful for someone else other than yourself to have a copy of that list. Maybe a relative or a friend who lives some distance from you because your list may not be secure. You may have lost it and in a hurry to leave. It doesn't matter. You're not going to remember all of those numbers. So if you have someone you can call or contact or go to that has a copy of your list, that's a big help too.

Ricky Enger: Yeah, that's a good point. And actually we do have a series of workshops at Hadley and it's the Safety Basics series. In that series, there is actually a contact list template. It is fully accessible, of course, and it gives you a nice place to start where you fill out that info and then you can print it, you can emboss it, you can do whatever. So maybe it's there on your device, but it's also available to someone else as well.

Talking about mobile phones, there is the medical ID and other stuff that's there on your phone. You know, theoretically the medical ID which has all of your meds info and such should be visible on the lock screen, but the problem can be if you are using certain types of accessibility options, if you have voiceover or talk back on that medical ID, you're not going to be able to tap on it. You have the gestures for double tapping for mobile screen readers and not everyone is going to know that. So just being aware of that, it's a good idea to have that filled out, but also know that if you're incapacitated, you might not be able to explain, here's what you need to do to unlock my phone or to view that stuff.

Ed Haines: That's absolutely true. And thank you for pointing out the Safety Basics series that we do have on our website. A series of workshops all about the subject today. I recommend anyone who's interested in further exploring the topic of emergency preparedness to go check those out.

Ricky Enger: It really is a good series of just basic stuff that you can do. There are some resource lists there as well. So, it’s really useful. We'll have that in the show notes. So let's think about if something is happening and you're not able to shelter in place. Maybe you have to evacuate for a fire or a hurricane or something where you have a little bit of time to then get out. What are some things we need to think about in terms of getting out safely?

Ed Haines: Good question and it really comes down again in my mind to self-sufficiency as a person with a vision impairment. Normally you'd want to have two places to go if you need to evacuate and one would be close by and that's where your local emergency management coordinator could help you out. Contact them to find out where the evacuation centers are and then another place would be some distance away like a friend or relative family member. If your entire community is in jeopardy, you’ll have somewhere where you know you can go. And here's the issue with self-sufficiency. I don't drive, for instance. So if you're not driving regularly, we sometimes tend to lose track of how to get where we need to go. We're letting other people do it, Uber drivers or taxi drivers or a paratransit, etc. But I think it's critical if we have our evacuation destinations in mind to actually know for ourselves the actual route, the roads, the turnings, the mileages, the landmarks, etc. to get us to where we want to go.

The point is you don't want to depend on someone else to find the way for you. You need to be able, as much as possible, to give them precise directions on how to get there. That means go two miles down this street, take a right on this street and really have it in your head, have that map in your head of how to get to your evacuation destination. Don't rely on anybody else. It's easy to do that. You get in a pattern of it. I know I do. So that's my advice there.

Ricky Enger: What about if you are in like a complex, maybe it's assisted living or an apartment complex or whatever, are there things that you should know, not just for yourself but perhaps the building has an emergency plan and a lot of times they're like, “Oh, yeah, didn't you see the signs? Well no, not so much.”

Ed Haines: That's right. Yeah, and this is classic, the emergency evacuation plans are in sort of a small little plaque somewhere at the end of a hallway. If you don't know what those plans are and you're not aware where the plaque is, you're not going to really be up to date. A lot of apartment buildings do have emergency plans and in fact in some housing units there might be a person even in your hall that's been designated to go door to door to alert fellow residents. So again, this is all about knowledge is power and self-sufficiency. Find out ahead of time what those emergency evacuation plans are in case of a fire or a flood, etc.

We all know we're told don't get in the elevator in case of a building fire. So if elevators aren't functional, it's really helpful for you to figure out if you can you navigate those stairs safely? Do you need to practice navigating the stairs? Do you need to find where the stairwell is and maybe do a couple dry runs to make sure that you've got it down? But you may also have to stay in your apartment and wait for assistance. And if that's the choice that you're going to have to make, what's the best way to do that? Do you hang an alert outside of your window to let people know you need assistance, how do you do that, etc. Again, this is all prior planning. But you're right, many of the cues for building plans are visual and they're obscure. You're going to have to be proactive to find out what those plans are.

Ricky Enger: Yeah, and you know, you said proactive and that made me think of something else as well. Again, it's hurricane season here and we often see on the news someone who has elected to stay behind, I want to stay with my stuff. I want to stay in my house. Then things go awry, and they need to be rescued. I feel like this is an individual choice, but do you think differently now about whether you would choose to shelter in place or whether maybe it is actually safe for me to get out ahead of time because I can't necessarily depend on other people to rescue me. I may have some additional logistics to think through. So, maybe I ought to just evacuate in the beginning before things get too bad.

Ed Haines: Personally, I air on the side of caution. But I will say, there will be notices if there’s a natural disaster or emergency and there's not enough time. There'll be notices from authorities about when it's time to evacuate. My advice would be not to ignore those notices. If you decide to shelter in place and you just don't want to leave your home and if the disaster occurs in your neighborhood or in your area, emergency personnel are going to be overwhelmed. So rescue may not always be quick, that's just something you're going to have to make a personal decision about.

Ricky Enger: Yeah, and I think as things are happening, you want to be able to keep up to date with what's going on. That in and of itself is a chore sometimes because if you watch the news, you are presented with an “as you can see here, you know, this is the trajectory of whatever this thing is heading your way.” And that may not be accessible to you anymore. So what are some ways to keep updated on what's going on in a way that is going to work for you?

Ed Haines: Good question. And you're right, you're watching the TV and they're pointing to a map. I have a weather radio, a NOAA, National Oceanographic and Atmospheric Administration weather radio on hand. It has a hand crank, so it'll power up without a battery. And I can monitor weather on that if I need to.

You can sign up for mobile phone alerts and warnings about severe weather in your area. And then there's the FEMA app, the Federal Emergency Management Agency. You can download that app on your phone and get alerts there as well. So there’s other places than just the television and local radio weather person who may or may not be giving you helpful information in a non-visual way.

The other thing I would say is if you are going to use a weather radio or use the FEMA app or whatever, practice using those first. You don't want to get familiar with that device or that app right in the middle of a disaster. You want to make sure that you're comfortable operating both. Again, it comes down to prior planning and it won't take long. It doesn't hurt to make sure that you can use those informational resources efficiently and quickly.

Ricky Enger: Yeah, and I'm kind of amazed at the features that are available on these weather radios now. It used to be it was just a radio and you might have access to some shortwave bands or whatever, but now they have flashlights on them. They have ways that you can flash SOS signals, and they have a power bank so you can charge your mobile phone for example. That can be really helpful. So, it's useful even just beyond being able to keep you up to date with what's going on, which I think is so helpful.

Once you make it through whatever the emergency, now it's time to think about what comes after. Are there other things that we should think about? Now that things are over, it's not immediately back to normal, right?

Ed Haines: Right, and a lot of this now comes down to just practical things that everyone's going to have to pay attention to. Your home may not be safe. Don't return to your neighborhood until authorities announce it's safe to do that and we can get that from a lot of sources. But you know, if you do have some vision loss, be aware that familiar landmarks and paths of travel might be damaged or obstructed. Don't expect to be able to just forge right ahead with your cane or without or with your guide dog in the same way you used to.

One thing I do want to mention in the aftermath of disasters is that mail can be halted for days or weeks. So, it might be helpful to think about how you get things like Social Security or federal benefits or any other kind of checks that come in that you depend on for your livelihood, are those all deposited electronically or are you dependent on the mail? If mail is disrupted, what are you going to do in the interim? So that's just one quick suggestion.

Ricky Enger: Yeah, even medications, a lot of people get mail order medications. So, knowing to contact your health care provider to figure out how am I going to get this emergency supply if my mail order stuff is not coming.

Ed Haines: Yeah, absolutely. There are lots of considerations. It depends on the disaster, and it depends on what the authorities are telling you to do. A lot of this is not vision specific at this point, but definitely pay attention to what your federal emergency management coordinator is telling everyone. Don't assume that your home or your neighborhood is going to be the same when you get back.

Ricky Enger: Well, I'm glad we had a chance to talk about a lot of this. Again, it's never comfortable to think about.

Ed Haines: No.

Ricky Enger: I feel like we all think that it's not going to happen to me. That's a thing that happens to other people. But if we are ready ahead of time, if we're prepared as much as we can be, then the things that we haven't thought about won't be piling on top of all the things that we could have done but didn't, right?

Ed Haines: Exactly, exactly.

Ricky Enger: This has been really good. In our show notes, we will have a link to our Safety Basics series, our video workshops. They will also have resources below the workshop that you can check out as well. There are things like what to put in your go bag and the contact list, a lot of the things that we've mentioned, you'll find there.

Of course, you can always call us to talk through some things as well. Ed, thank you so much for dropping by and going through some of this. It's been informative.

Ed Haines: Well, it was a pleasure, Ricky, and you're right, it is an important topic. I encourage people again to check out our Safety Basics series and then of course to call us at Hadley if they have any other questions.

Ricky Enger: Yeah, thanks so much.

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