1 Relevant Emergency Preparedness Information for People With Disabilities -- Part I. Presenter: June Isaacson Kailes. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston. And welcome to today's webcast, Disaster Lights and Disaster Heavies, Relevant Emergency Preparedness Information for People with Disabilities -- Part I. And today we have quite a webcast and our friend June Kailes will be doing the presentation. First, just a note for those of you who may be new to webcasts. This is a technology that sometimes you'll need technical assistance in case you get disconnected or if something tosses you off and you can't get back in. There are problems that may occur, but it's all solvable and I'm going to give you the telephone number you can call for technical assistance. We've got people on stand by, our staff at ILRU, who can walk you through just about anything. And that number is (713)520-0232. That's both voice and TTY. You may see things like buffering and that's perfectly normal, but if it goes on for any length of time, just disconnect and reconnect. If there is a problem, call the number. Any other problem, don't hesitate to call. Now, maybe during the presentation you may have questions based on the content of the presentation. You have comments or questions or observations, don't hesitate to send those in to us. Those of how are 2 using RealPlayer will see at the bottom of the portion where the captioning is right now, it says click here to send a question, and that will bring up your E-mail software preaddressed to us at ILRU. You just type in your question or observation and click send and it will come right to us. The same thing for those of you using Microsoft's Media Player. I think you have to call up the E-mail software on your own and just address it ILRU@ilru.org and just write your question in and hit send and it comes to us. We'll hold those questions until June is ready to take them. And then we'll read them to her at that time. And for those of you in the future who will be listening to this presentation from an archive -- the archive version -- we'll still be here. You got any question technologically speaking or a question about content, go ahead and send those in and we'll pass them on to the right people, but we'll still be here to provide technical assistance. So today's webcast is on a topic that is extremely important to those of us in Houston who during hurricane season to those of you in different parts of the country like the Midwest during tornado season, those of you out in the west coast who get -- some people think whatever nature has up her sleeve is what's coming towards you. June, in lieu of introducing you, why don't you just give us a little idea of your background and if you don't do a good job, I think I can fill in the blanks. And tell us a little bit about how you got into this work regarding emergency preparedness. >> JUNE: Okay, Laurel. I'm just doing one more sound check. Am I okay to go? 3 >> LAUREL: Okay to go. >> JUNE: Okay. Well, great. The title as you can see is disaster lights and disaster heavies and I will tell the listeners that I had this great immediate medley but I was sense ordinary. So call me later and I'll play name that disaster. The title slide was accompanied by we got trouble here in river city. Just so you know what you're not getting. Sorry about that, gang. >> LAUREL: June, it's our loss. >> JUNE: Yes, it sure is. So any ways, Laurel, I'm on slide 2 and today I'm wearing my -- well I actually always wear two hats. So one is my consultant hat and I'm just going by a handful of people with disabilities who paid attention to these issues just about the mid to late '70's. I've focused a portion of my time on disability and aging-related emergency issues. The other hat I wear is that of associate director of the center for disability and health at western university, of health sciences in Pomona, California. And my focus there is on health, but it's also on the applied side of emergency preparedness and response. You know, it's the real practice, the planning, the policy issues. I do a lot of writing and producing guides on personal preparedness and the role of community-based organizations like independent living centers, protection and advocacy, all kinds of N. G. L.'s, nongovernment organizations that are disability service related. So in slide No. 3 or 4, you'll see the website for the western university site and there are some resources there that I will review later. The center just in a real nutshell, we work to enhance the health 4 of people with disabilities through public policy, consulting, training, research and dissemination activities and that's reflected on slide No. 5. So Laurel, you asked me how did I get into all this? >> LAUREL: Yes. >> JUNE: As a kid, I was always intrigued by movies, like The Towering Inferno, The Last Voyage, and as I got older, Titanic and the Day of Destruction, the Day Before, all of those movies. And I thought, you know, that is pretty weird. What is this all about? And then one day I just realized it's not so weird. It was really about my underlying question could I and other people with disabilities survive these catastrophic events? Well, a couple of friends of mine heard me talk about this in workshops and they said, you know, June you might think that's where your interest comes from, but we know differently. You know, they said you know where your interest really comes from? It comes from an underlying fear of being -- what did they say -- something like a fear of being buried alive by piles of stuff on your desk. So I don't know what is really true. So I came out to California from New York and I went to graduate school out here and every now and then somebody would say, did you feel that? Did you feel that? And I'd go -- feel what? The earthquake. I go, no. This went on for a couple of years and finally one night I was in bed and I said to Bob, my husband, what was that? And he said that was an earthquake. And I said, oh, I always thought that was my disability jerking me around. So it took me awhile to kind of get with the California stuff, but I was also asked early on to speak in front of some emergency 5 managers, and that really also peaked my interest in the whole area of what's going on here. So that's how I got interested. I started talking to managers and talking to them about disability issues and the more I was exposed, the more interested I got. So I hope that answer it. Back to you, Laurel. >> LAUREL: I'm interested in the title. I understand emergency preparedness and I understand preparation, but disaster lights? Disaster heavies? >> JUNE: Yeah. Let me talk about that for a little bit, but let me first say that you know I just want the listeners to know that I'm very aware that this is one more thing they have to kind of fit in to very busy lives and that I know we're all busy and we're all overwhelmed and I guess the message I want to say to people is that the key is to just work on it. And a lot of the stuff doesn't cost anything. It's just kind of low cost or no cost stuff. So a lot of worry about a lot of people can't afford some of this, but I think the majority of what we're going to talk about on these two webcasts are no cost things. So disaster lights and disaster heavies -- the trick to all of this is somehow keeping it on your front burner, committing to it and weaving it into what you do kind of daily and I think that's the trick. How can we integrate some of this stuff so it's not seen as separate and something we have to do once in awhile, but how can we weave it into what we do? In terms of outcomes, I guess my message is just do what you can. Doing a little bit is really better than doing nothing. Just taking small steps moves you toward better preparedness for these disaster lights and 6 these disaster heavies. I'm going to get to your answer, I promise. But you know we're talking about not just dealing with the big ones, the disaster heavies, but the lights, kind of light things, the sudden power outages, when a pharmacist doesn't have enough of your medications or when you get caught in traffic gridlock. And that does happen out here. I know it can happen in Houston. So major emergencies overtax and overload most first responders and really requires us to be on our own for a lot longer than people commonly think. So we have to kind of scale our planning so that it benefits us for the disaster lights as well as the heavies. Okay, so let's talk more about what is that, disaster lights. Oh, one other thing I forgot to say. This emergency work is always work in progress. Hopefully we're all learning from the last disaster and the last event, and I think I say today it's of very much a two-way street. I expect to learn a lot from the listeners and I'll probably learn maybe even more from you than you learn from me. So I always talk about all hazard planning because it really refers to the lights and the heavies. The lights being the small scale events, and the heavies being the large scale, the horrific, biblical, cataclysmic events, the Katrinas, Ritas, Wilma's the Virginia Tech, the 9/11. Some are high risk and low frequency -- the tsunami disaster, heavy. So it does pay to prepare for all of these. And a lot of people said, you know, and asked me probably the reason you're interested is because you live in California and that's true. California is a live disaster laboratory. We always say Katrina is us waiting to happen. And we always thought you would be watching California first. Because we're actually the most disaster prone 7 country in the -- the most disaster prone state in the country, although some people think California is its own country. So there is a joke among emergency people here in the state and they often say, you know, in California we only have a couple -- four things to worry about, and that's earth, wind, fire and water. And again, you're missing my great musical accompaniment, I had Carol King's the earth moves under your feet. I won't sing it because as I told you before, I had a choir teacher in third grade who said, June, could you just mouth the words? So I've been silent in my singing since then. But the wind -- Mariah, and fire -- Johnny Cash's ring of fire, and I had water -- I had B. J. Thomas, rain drops keep falling on our heads. >> LAUREL: I can vouch for the fact that it was wonderful music. >> JUNE: So, sorry, gang. I tried, but I was censored. So disaster lights are things we experience a lot, the brown-outs, the power outages, all those frequent kind of traffic accidents. So, okay, hazards, slides 7 and 8. Scale is large and small, frequency, high and low, and risk, high and low. The slide No. 9 -- think about hazards in your area, and your answers will depend on where you live. I think it's very important that we not fall into what I see emergency people fall into which is being a tornado, hurricane or earthquake centric. We all have our customized kinds of hazards we deal with in our own geographic areas. So, Laurel, asking you, what are the heavies and what are the lights in your area? >> LAUREL: You know, I was thinking about that when you were 8 talking and I never thought of them in those terms, but it's really true, we have occasional high water. It rains real hard and because Houston is so spread out and there is so much cement, the water that used to be absorbed by the earth, you know, in outside communities just comes right down to us. And it's a short time period we may be stuck at the office all night or for several hours or stuck in our car and the water keeps rising, but you're right. It's very short term. It's uncomfortable, but it's not catastrophic, but it does create a hazard. But the hurricanes, as you say, the tornadoes occasionally -- boy, that's a whole other matter. That's serious stuff. >> JUNE: And are there high risk and high frequency in your area? >> LAUREL: The hurricanes or as we know from a few years ago, yeah, and it's unpredictable. Yes, we have the great luxury though of hurricanes being trackable and you can see them forming and sort of start getting prepared in advance. It's not like an earthquake or tornado. >> JUNE: That is key, Laurel, because that's why some of these events -- we also have warning events and no warning events. So that's a key issue. In California one of our high risk, low frequency events are earthquakes. There are no warning events. So can't get on registries for evacuation. You just find yourself in the middle of it within the moment, no warning, no preparation time at all. So in a high frequency low risk events are called quakelets, the little things that happen now and then. It feels like a truck is going by. So we have high risk, high frequency. We have traffic accidents, 9 fires, power outages, storms. >> LAUREL: Mudslides, June. >> JUNE: Right. >> LAUREL: That's awful looking. >> JUNE: I'll identify one of my biases -- I tend to focus a bit more on the larger disaster heavies than the lights because I think we to do better with disaster lights than we do with the disaster heavies, but again the take home message is we're preparing for all of these. And I really like to quote on slide 10 which says as this relates to us as individuals -- planners cannot foresee every outcome. And incident managers cannot anticipate every scenario. Disasters have a language of their own. No plan guarantees success, but inadequate plans are proven contributors to failure. So is let's dock out it. >> LAUREL: When you talk about less is documented. We used to talk about lessons learned. Is there a distinction there? >> JUNE: Well, I make the distinction and I think I'm probably one in not too many. And the reason I say lessons documented is because in the disability world I've seen a lot of lessons documented, but I haven't seen a lot of lessons learned. I don't think we should talk about the being learned until we see better practices put in place. So that's my distinction. >> LAUREL: I think that's fine. That's good. >> JUNE: So on slide 7 I'd say you know the words are easy to write. The steps are easy to list, but the doing it -- the making it real 10 and sustaining it is hard. And the devil is really in the detail. Okay, Laurel, what's next? >> LAUREL: Let's talk -- maybe June you can give us an idea -- this is going to be a two part series. Maybe give us an idea of what we're going to cover in each part. >> JUNE: Okay, sure. And lot of this material that I am going to cover is even presented in greater detail in the handouts and the handout sheets for you on the website. So don't worry if you don't get it all down or whatever. It's all written out for you in the handout that is are all available online. >> LAUREL: Excellent. >> JUNE: But what I'd like to cover is reflected on slide 12 and that is making it real, distinguishing between the preparedness information produced about us and for us versus the information produced with and by us. I want to talk about how preparation pays, how to evaluate your skills, building support teams, communication and public warning issues, making and practicing plans, the importance of those dreaded drills and collecting supplies and creating kits and avoiding avoidance by making this a priority and what you're going to be able to do now and do later and hopefully at the end of this series you'll have a number of ways to help yourself and the people you work with be better prepared. So the intended outcome here is on slide 13. It talks about your thinking regarding what you can do that is different from what you have been doing and to recognize that preparedness is a lifestyle choice and not 11 a limited project and the literacy and competency needs to be woven into your personal practices, your culture, your policies at work, procedures and our advocacy. All emergency response starts locally, before we can share this and teach this to others, we've got to be able to practice it ourselves. So, you know, you have a lot of wake up calls in this disaster business, but I like to say that many of us keep hitting that snooze alarm and you have to really apply some of these lessons documented. So in slide 15, again, I'm hoping the listeners will make a specific priority list of what they can do in a month, in two months, and six months and ongoing. And again a lot of this is no cost or low cost. So slide 16, this is really just about making it real and operationalizing these lessons documented. So, Laurel, that's what I'm going to cover. Back to you. >> LAUREL: That's nice and ambitious and I think it's going to -- you know, it's going to be something that we need to really pay attention to, your notion of it constantly being evolving is so antihuman nature. You know, it's like we want to make up our kit and then just let it go and just have it ready to pick up when the next hurricane comes up. And, June, when we look at material for a disaster and emergency preparedness, there is just so much information. How do we pick and choose or is it your sense that most of the information is pretty good and we can just sort of pull something off the shelf about how to get ready and prepare? >> JUNE: Yeah, Laurel, that's a good question. Slide 17 12 communicates my bias which is that we as people from the disability community need to be more picky and selective and critical about the information we receive. I mean, there is some good, standard information out there, but I think what we need sometimes needs to go further in terms of disability-specific kinds of preparedness. And you know I must have a radar eye and ear because I can always tell when I'm reading something if the materials were created for and about us instead of of and by us, and sometimes it's subtle, but sometimes it's really blatant. So I may be over sensitive and I'm sure the audience will let me have soon, but let me just give you some examples. On the next slide, that's slide No. 17 I believe, some disability-specific material is really pretty vague, incomplete, impractical and naive and the language used is somewhat outdated or condescending and borders sometimes on offense I have and that perpetuate t's negative attitudes and stereotypes about people with disabilities. Slide 19 -- sometimes the material we get really needs to be augmented with, again, disability-specific advice. For example, in earthquake country we often read and are told that we should just duck and cover. Get under that table and hang on. We don't get in a doorway anymore. That's old information that doesn't work, but for a lot of wheelchair users, they are not able to duck under a table. They may have to just get whatever they can to protect their head and shelter the best they can in place if they are a wheelchair user or whatever. So this is about getting more specific -- slide 20. In slide 21 this is an example of things I think are vague and 13 incomplete where we can really go further. This is information that says show friends how to operate your wheelchair so they can move you if necessary. Make sure your friends know the size of your wheelchair in case it has to be transported. Well, what if this is a heavy motorized chair and what if the individual is unable to transfer without assistance of several strong people and what if your trained friends are not with you during a disaster? You know, this whole buddy system thing is rather outdated and we'll talk about that later. So I'd like to say we need to really get real -- slide 22. here are some examples -- anything wrong with this? If you're confined to a wheelchair, notice the great language -- confined to a wheelchair, consider mounting a small personal fire extinguisher in an accessible place and become familiar with its use. Then if you can't stop, drop and roll during a fire, you should pull, aim, squeeze and sweep. A lot of people are laughing besides you. I've got a great slide with animation so I'll describe it because I couldn't fit it into your context, but I've got a wheelchair user going across the screen with an oversized fire extinguisher on his back and a siren going off and a Flashing signal on his head. That was courtesy of Glen White. It really bring it home. I think we need to get current -- slide 24. Slide 25 means the information has to be available and it needs to be distributed like everybody else gets it and it needs to be accessible and in usable formats. It just can't be distributed by disability organizations because a lot of people don't go to disability-specific 14 organizations. One of the modes, but it should never be the only mode. And of course slide 26 we all hopefully know this. Formats need to include Braille, large print, disk for text and audio. And also material that is knee simple language and in other languages for people who are nonEnglish speakers and people with difficulty reading. So slide 27 -- we need to develop materials that integrates information about people with disabilities and activity limitations. That's what that PWDAL stands for. The information has to be integrated in the general material, but it also needs to refer the reader how to get more customized material. Slide 28 -- we need to find good material, and there some good stuff out there and if there isn't good stuff out there for the disability group that we're most concerned about or focused about, then we need to create it. Materials need specificity and details -- slide 29. They need to reflect cross-disability and the disability diversity perspective. They need to be written from the disability -- the user's experience. Again, not about what people can just do for us, but what we can do for ourselves and what we can do for other people as responders. It has to be easy to get and in good usable formats. So slide 30 -- general information and customized information is key. And there is some samples in your handouts, one is emergency evacuation preparedness and that's a good disability-specific handout and there are some others related to emergency preparedness, taking responsibility for your safety for people with activity limitations and disabilities, and 15 emergency planning for people who use electricity and battery dependent assistance technology and medical devices. So, Laurel, what's next? >> LAUREL: You know, we need to talk about materials that could be helpful. June, I was still thinking about your point of the materials need to be distributed beyond centers for independent living and other local disability service providers. And I'm a little bit -- I'm trying to think through what other organizations -- or how else could it be distributed or what would be the mechanism for distributing it community-wide, a generic distribution? >> JUNE: You know, we in the communication world know that there is no one artery that works for all. There is no down right way to do it. It's multiple modes, multiple arteries, multiple ways, websites, newsletters. It needs to be paired with the good, standard Red Cross information. I went to an emergency fair the other day in L.A. and I was a little shocked that the table representing the jurisdiction's -- the mayor's committee didn't have any of the customized material available for people with disabilities. Generally at these fairs -- that's a great way to distribute it. Every way we distribute material or even tag lines: For more material or additional material related to people with hearing or seeing or understanding or physical disabilities, go here, do this, call this. I hope that answer your question. >> LAUREL: It does. Should we assume that most communities -- most cities, most little towns even have -- for the local government I 16 guess the mayor's office would have a disaster preparedness or at least some office or some individual who is responsible for disasters? >> JUNE: No. Never. No. No. >> LAUREL: Is that just a big city -- >> JUNE: No, it's not even a big city. I think that's another whole advocacy issue we could probably get into later. That's the advocacy issues -- in California we're looking for a functional needs coordinator at the state level, somebody who can really focus on disability and aging issues and make sure that it gets the attention it needs, including relevant information disseminated in multiple ways. >> LAUREL: That's a tough one, isn't it? Advocacy is I guess the approach we need to take or become an employee of the -- >> JUNE: Right. Right. Laurel, I want to give you a quiz. We talked about this material -- >> LAUREL: I'm ready. >> JUNE: I want everybody listening, I want you to think about what's wrong with some of this information because it's quite common and it's out there. So on slide 31 it reads -- and you all take a moment to think about what's wrong with this -- contact your local emergency information management office: Some local emergency management offices contain registries of people with disabilities so you can be located and assisted quickly in a disaster. So you all either turn to the person sitting next to you or take a moment and think about what's wrong with this. Well, you know, from my perspective it sets up a false sense of 17 expectations and possible false sense of security that this will actually happen. >> LAUREL: Oh, yeah. >> JUNE: I think the emphasis really has to be on establishing a support team and the importance of not relying on only first responders for assistance because, remember, we talked about all those no warnings events. There is a lot of magical thinking about if you register, we will know where you are and we will come and get you no matter what. A lot of magical thinking about that. How about this one -- slide 33 -- consider getting a medical alert system that will allow you to call for help if you are immobilized in an emergency. Most alert systems require a working phone line. So have a backup plan such as a cell phone or pager if the regular land lines are disrupted. What's wrong with that? >> LAUREL: That doesn't sound too bad. What am I missing? >> JUNE: Well, in a large scale emergency, cell phones and pagers may not work. And even if they did work and even if your land line phone worked, the system may be overwhelmed. You can't count on anyone thing working because what will go wrong does. So I think a better suggestion would be alternatives in addition to phones and pagers, for example, putting a support team in place, people who are willing to check on you. We'll get to support teams later in this call or the next call. How about this one -- this one is from a guide for people with developmental disabilities. You have an audio, perceptual disability, it's hard to understand the environment. Watch body language so you'll know 18 when it's a good time to ask a question of a shelter staff member or other occupant. What's wrong with that? >> LAUREL: I didn't even understand what it said. >> JUNE: Exactly. That's right. It appears to be written for providers and everybody but who it was intended for. The language is not plain. It's not simple and I don't understand it either. Okay, here is one I was going to tell you: I often hear this. Carry a whistle. Whistle to signal for help. To me, that's an attention -- that's an example of lack of attention to disability diversity. I mean, there are many people who could never blow a whistle or have a respiratory kind of limitation that would make that difficult to impossible. There are a number off they are ways one can signal for help besides having to blow a whistle. How about this one -- it's slide -- I lost my numbers -- since September 11th, many people with disabilities have expressed reluctance to depend on the areas of refuge waiting to be evacuated with everyone else or wanting to be. This may not only be possible to learn the location of your building designated areas. I mean, that's okay, but it does kind of dismiss our concerns that a lot of us are not going to sit there and wait to be rescued any longer. We want out with everyone else. There is no guarantee people are going to come back and get us. That's the old just -- you know, one fire in one building and it could be a dirty bomb, it could be a lot of different reasons, but you need to get out of there. >> LAUREL: They are still teaching that, June. We had a fire emergency guy come out this week and went through the whole process again 19 of how -- especially people with mobility impairment need to stay at this stairwell and just wait there, that the fire department knows -- this goes back to there is a list, you know, but that the fire department people know they are there and in getting in the stairwell you'll just get tram pled or something. >> JUNE: What did your crowd say about that? >> LAUREL: Well, alas, I was absent, but I remember from the first world trade tower was people just helped -- I remember there was a guy who needed to use a wheelchair and they just went down X. number of stories. This was back in '90 something. >> JUNE: Right. >> LAUREL: And they just helped people along. I just don't think people are -- >> JUNE: Well, the issue is that people with disabilities need to say no. We're not going to sit there and wait. That's how a lot of our colleagues perished in 9/11. We need to come up with another way. There are evacuation devices. We can get them and put them near the stairwell to be used. People can be trained in how to use them. We don't want to wait. It doesn't work. We want out. But it takes personal advocacy to get that inserted into the workplace. >> LAUREL: And they do say -- the other people say, you know, when that was brought up, the fire guy said people are rushing down there, adrenaline is flying. They are going to just run right over you. >> JUNE: That's another thing that's questionable. Some of the evacuation chairs have been shown to be operated by one person and they can 20 really keep up with the speed of people going down the stairwells. Even if they go a little bit later, they are still getting out. The issue is getting out. >> LAUREL: I'm with you on that. >> JUNE: How about this one -- if you don't own a vehicle -- it's slide 35 -- if you don't own a vehicle or drive, find out in advance what your community plans for evacuation of those without private transportation. Well, okay. Think about that one and the other one, let your personal care attendant know you have registered and with whom if you are electric-dependent, be sure to register with your local utility company. Well, let me make this quick. The first one, it's an erroneous assumption to assume that all communities have plans and registries. So, again, I refer people to the power planning article in terms of thinking about alternative ways to power your electricity or power-dependent on devices and we know that a community's plans for evacuation of people with disabilities often do not exist; i.e., Katrina; i.e., San Diego we had some good performance last week about there was a crawl across the screen that said if you need evacuation assistance call. But that didn't happen in many of the other communities here in California. So the other thing about emergency planning -- yes, it's good to register to get a priority return of your electricity, but there is no guarantee. And you can't count on that. Oh registry is only one part preparedness. So slide 36 -- this says what you'll often see on preparedness materials is you have this long laundry list of websites, but my issue is 21 most of these websites are huge with lots of information that don't even relate to emergencies. So if you're going to list these in your preparation materials, give the reader good guidance on where to go. For example, if you're referring people to the Access Board website, then refer them specifically to the section on emergency evacuation. >> LAUREL: Well, that's good. >> JUNE: So I guess my message is from slide 36 is speak up. I should not be the only one that can tell the difference between what's been written by us and what's been written for us. So I think we really need to be more vocal about this and more critical about what we're reading. >> LAUREL: And you are sort of saying you've got to be your own -- you've got to take -- you've got to be responsible and if somebody else has you on their list for power return soon, that's wonderful, but don't count on it, huh? >> JUNE: Right. Right. So, again, there is some material in your handouts that are I think good and helpful, but the audience needs to read them critically and give the writers feedback if they find it's good or missing or not clear or vague or whatever. So, Laurel, I think before we move on to why prepare, maybe it's a good time to -- looks like we might be kind of at the halfway point here. It would be a good time to break and see if there are any questions that relate to not what we're going to cover, but what maybe we've already considered. >> LAUREL: Dawn Heinsohn is handling any questions that come in today. Dawn, of we had any submitted? 22 >> DAWN: Well, we had a couple. I need to alert Rob that I guess the slides are not rolling over so we need to get that corrected. We do have one question that's come in: Does this material have information for individuals who are hearing impaired or visually impaired or blind? >> JUNE: The information -- Dawn, the information that I put in the handouts has information for those groups as well as people with understanding and learning difficulties and people with chemical sensitivities as well. >> LAUREL: Good. >> DAWN: Okay, thank you. That's all we have right now. >> LAUREL: Oh, and to that reader, June, to that person asking the question, if when you review the materials and it doesn't seem quite sue fish earnings I know that we'd like to hear and June I'm sure you'd like to hear it as well. >> JUNE: Yeah, I collect this stuff because I think it's the way we get to teach educators how to be more specific and real about what we need. >> DAWN: June, we just had another question that come in. June, where are you getting these erroneous disaster response suggestions? >> JUNE: Well, I'm getting them from very public agencies and websites that are frequently used by people seeking this kind of information. So the fire extinguisher on your wheelchair, I believe that slide has a footnote on it that was an old FEMA publication. They don't distribute that any longer. 23 >> LAUREL: A what publication? >> JUNE: FEMA. >> LAUREL: Was it old? >> JUNE: It's old. It is old and I think they have taken it off their site. >> LAUREL: Well, it is sure amusing. >> JUNE: But the audio perceptual one, that's still on -- I don't think I want to say in public where it is, but if you want to E-mail me, I'll be glad to point you the right way. But know they are out there. They are very public and I have foot noted all of them. I just don't want to publicly embarrass anyone. >> LAUREL: You know, June, when we were working with the folks who were displaced by Katrina and Rita and there were so many, and FEMA to a large extent wasn't prepared or was so overwhelmed with needs from all the people in the area that they referred, you know, folks with disabilities to us. Folks who were older -- anyway, for us to give information. And what struck us real clearly was that a lot of the best information was on websites, but, gee, these guys were just -- they were displaced from their homes. They didn't -- they just barely got out of the city. Sure didn't have any equipment with -- computer type equipment where they were relocated there was very little computer equipment. Our advice -- what I learned from that is if I ever get -- you know, have to leave my home and go to some strange city, try to get near a library or someplace where there is going to be a computer connection. It was a big mess. 24 >> JUNE: Actually we deal with that quite a lot with the fires over the last two weeks. But that's on the workshop, Laurel, and that has to do with how prepared we are as independent living centers and other disability service organizations in our responsibilities, our ability to respond, one of the things we learned here in California is that we need to already have templated, archived and ready disability-specific services available after an event that, you know, are in paper, large print, Braille and audio. And ready to go into the shelters and into disaster assistance areas, already preset to get them to where they need to be. But that's another whole workshop about how we need to prepare and respond as an organization. >> LAUREL: Let's put that down for next year. So anyway, don't let me interrupt with the questions, but it was a rough lesson for us, but so much rougher for the poor people -- anyway, we can go back there. So, please, go ahead. >> DAWN: Laurel, this is Dawn. We've got three more questions. You want me to read them now or wait. >> JUNE: Sure. If they relate. Go ahead. >> DAWN: You mentioned alternatives to whistles. Can you mention some? >> JUNE: Might be to just look around wherever you are -- there are all kinds of ways to make noise. For example, right now I'm just banging a stapler on the desk or I'm banging a wireless or a cordless phone. Many people have keys on them. They can just shake the keys or hit the keys against -- there is all kinds of ways to make noise. And one of 25 the things I learned from search and rescue people is if you are trapped and you need to get help and you need to make noise, don't start making noise immediately. For example, wait a little bit until the dust settles, unless it's a fire or something. But wait until things settle down just a little bit and people start looking for people and your neighbors start looking around and then start making noise. Don't start immediately. Just hang on for a second or two. >> LAUREL: Isn't it amazing how many times we hear like in these terrible earthquakes and other countries how somebody like an 80-year-old lady will have been buried under the rubble for five days and comes out just fine. A little dehydrated and everything, but just great. It's unbelievable. So it is sit tight and wait for somebody to listen. I don't want it to happen to me, though. >> JUNE: What else do you have, Dawn? >> DAWN: Where do we find this particular information in the material? Because I looked at the stuff earlier, but I haven't found it yet? >> JUNE: Well, I'm not sure -- >> LAUREL: About making noise? >> JUNE: What the stuff means. What stuff? All of these preparedness information is on -- throughout the documents that are in, for example, emergency preparedness, taking responsibility for your safety. Tips for people with activity limitations and disabilities. It's in the handout or document on the website about where can you go to get that document and down load it and print it. Last question, Dawn? 26 >> DAWN: The last one says in general how will preparedness for disaster heavies and disaster lights differ? Are the preparedness basically the same? >> JUNE: That's a really good question. I think they are. For example, you know on my scooter key is a tiny little microflashlight. I can't tell you the number of times I've had to use that sucker, you know. When the lights go out, all of a sudden we're in an elevator and it goes dark or you find yourself on a dark street and the lights go out. You know, it's just that little key thing and you need flashlights for all kinds of things. We have a lot of power outages here. So flashlights around, or wind operated or crank operated radios come in handy, so it does relate to lights and heavies, yes. >> LAUREL: That's a good example. >> JUNE: Okay, Laurel, why don't we move on to why should we prepare. >> LAUREL: Yes, please. >> JUNE: I always say, you know, you prepare because stuff happens and I didn't give you the slide, but basically it's a big rock in the road. A big rock that goes probably 20 feet wide and 20 feet high. So stuff just happens. And I think part of preparing is learning some of the -- that we don't have control attitude or what will be will be attitude that we can make a difference, that there is a lot we can do besides waiting for someone to help us that may not happen. We need to get over that -- the helpless stance. 27 So why prepare -- slide 36. It increases our confidence. We know what to do. We stay calmer. We stay in charge and we protect ourselves. So, Laurel, now there is the statement about won't people come and rescue us? >> LAUREL: Yes. >> JUNE: You know, what's the big deal here? Well, you know, I think it's magical thinking because we've learned time and time again that in disaster heavies, emergency people are over taxed and overloaded and we've got to be on our own. We're going to talk about that probably next week, but it's a good time to remember this sound byte called yoyo, you're on your own. Depending on whether it's light or heavy will depend on how long you need to practice yoyo. No, the traditional agencies are not equipped to respond to everyone and it's very clear that in heavies they can't. So slide 39 -- really a common slide in disaster work, but worth repeating. Four stages of disaster denial: It won't happen here. If it happens here, it won't happen to me. If it happens to me, it won't be that bad. And if it's that bad, there is nothing I could have done about it anyway. You know, that hopeless, helpless thing. I think there is a lot we can do if we just avoid avoiding it. I've read some great articles over the last year that talked about avoiding preparation and avoiding signals are part of the human condition. It goes all the way back to Pompeii was seriously damaged by earthquakes and the locals immediately went to work and rebuilt everything in the same place and 16 years later they were buried -- totally buried by a volcano. 28 >> LAUREL: Still finding people in their beds under all that. >> JUNE: The same place. So America -- we are particularly bad about protecting ourselves from these threats. So our greatest enemy they say is often not the storm, the quake, but it's us. So we continue to under perceive our risk at times. And I have this great slide that a friend of mine developed and I enhanced. It's called -- it has Noah's ark on it. It says who needs to start planning when the wind is blowing, the water is rising, the brush is burning and the land is sliding and the earth is shaking? I need some sound for that slide, too. I need some music for that slide, but any way -- >> LAUREL: June, regarding the emergency people, the response people, I have not thought of it in years, but it reminded me of a number of years ago TIRR, you know, is one of the premier medical rehab facilities in the country, just a first rate hospital. And ILRU -- that's our parent organization. A number of years ago, in fact, before I was a member of ILRU I sat on the -- they called it the security committee or the emergency committee, but it had to do with what to do -- and this was mostly the Allied health people who worked at the hospital and what to do in the case of emergency, most particularly fires were always high on the list. And there was a principle that was given to the people who were responsible for looking out for helping both patients and staff move out. And of course TIRR has a large number of staff members who have particularly mobility disabilities, and they said you always go for the numbers. And if you're -- if you have to get people out of a wing where there is a terrible 29 fire and you've got time to save one room or another, you go with the numbers. And if there are five people in that room and two people not they are room, you go for the five. And it shocked me. I was pretty shocked by that. It makes sense logistically, but it sure reminded me that I may be in the room with the two and you've got to prepare -- you've got to look out for yourself. >> JUNE: I mean, it brings up all kinds of disturbing things about who may not get attention during all kinds of events. We haven't even begun to explore all the issues around the pandemic flu. >> LAUREL: Oh, my goodness. But the fact is that's the way we have to be responsible for ourselves. >> JUNE: Right. So the take home message is on slide 41 doesn't even go to the pandemic, but it makes the point that 91 percent of Americans live in places at moderate to high risk of -- you know, and then it lists earthquakes, volcanos, wild fire, hurricanes, flooding, high wind damage or terrorism. So nobody is exempt here I assume and we forget that. I often get, well, how can you even live in California? >> LAUREL: June, we need -- >> JUNE: Where do you live? So like it or not you'll be involved. So plan now or suffer and muddle through later. How are we doing on the slides, Dawn? >> DAWN: Rob at Baylor says they are coming out fine on his side. So I'm hoping that they are okay on the computer. >> JUNE: Okay, on slide 43 we're on the human tendency to not think about possible emergencies. So I want to move now to an area called 30 ability self-assessment. And I know you're going to say what is that? >> LAUREL: I was on my -- just coming out. >> JUNE: So I figured I'd save you time. >> LAUREL: Thanks. >> JUNE: Well, basically it's learning what you can do and what you can't do, kind of being your own evaluator of your skill sets. Evaluate your own limitations and your own capabilities as well as your surroundings to determine what type of help you will need and what you won't need. And on the publication I mentioned before, emergency preparedness, taking responsibility for your safety: Tips for people with activity limitations and disabilities, there is a chart. It starts on Page 4 that really goes into a number of disability-specific issues in terms of looking at what you can and can't do. Some -- and these are all no cost, by the way, things you can do; but for example, general issues, you know, where are the fire alarms and extinguishers are in places where are you regularly and can you physically activate the alarm? Can you physically work a fire extinguisher? Have you practiced? Do you know where the gas and water shut off is? Would you be able to turn them on and off? And one of the things I just recently recommended is that during times of high stress if you can do these, you still have to remember where they are and which way to turn them off. So we're recommending taking a picture of them and keeping the pictures in one place with some instructions underneath. Like I created a PowerPoint slide with the gas shutoff that says take the wrench and do it so it's not equal, it's unequal or from the open to the closed 31 and I do an arrow. I don't need to remember it. I just need to look at the picture. The picture tells me where it is in the garage and how to shut it off. And the wrench is hanging by the front door. >> LAUREL: Good. >> JUNE: Can you -- well, can you use the tool to shut it off? Do you know all the exit locations where you spend time? Have you evaluated your ability to use them? For example, if you're a wheelchair user and you work on the second floor, if you're maybe -- you've got some mobility, maybe you could walk down that flight or maybe you could bump down that flight in a pinch on your butt, or maybe you can't. But that's when you need to really evaluate. Have you thought about how you may be able to help others? Have you checked your city or county or town's reverse 9-1-1 system. You know, the system where you would get a call automatically, for example, in California if there is a fire. You know, the problem with these systems are they are not all enhanced and they can't always communicate with a text messaging device, for example, often used by someone who is deaf or some are not equipped to make TTY calls. So these are things -- first you need to check out, but then you need to also advocate for. Also when you travel, you know, if you have a physical disability, you pick a room for a great view on a higher floor or maybe a room on a lower floor where evacuation is going to be easier? Do you tell the hotel staff that you would need help in an emergency and self-identify yourself? If you have a hearing loss or are deaf, do you make sure you get a room with visual alarms, fire alarm system, visual notification devices in the room. 32 If you have a vision-related disability, have you thought about if you rely on sound clues to get around, for example, the hum of the copier or the noise of the elevator, will you still be able to use those clues if there is a noisy alarm going off? Or are there signs in raised and Braille characters at the designated exits that you can read and that you know how to get to? For more on hearing -- and these are just samples, I'm not reading them off. Do your alarm systems include audible and visible features, strobes, et cetera? Do you have a text messaging device? Have you registered it -- for example, after the wild fires last week I found out there was a way to go online and register your cell phone or your smart phone so you can get emergency text messages directly to your smart phone or your text device. Speech -- how would you communicate if you don't have your usual communication device? For memory issues, learning issues, have you practiced how to communicate your needs? Have you prepared emergency information in ways that it will be easy for you to understand, for example, my example I just made about pictures. It's going to be a lot easier for me to look at the picture and know how to turn something off and on than have to remember it under stress. Again, if I use an assistive device, a scooter, whatever, that it's labeled. That you have instructions on it in case people have to move it without me. If I have multiple chemical sensitivities, do I have the right kind of mask or respirator to wear? 33 >> LAUREL: Oh, golly, yeah. >> JUNE: On my worst days -- anyway, those are just some kinds of examples. Can I test the smoke alarm independently? Can I change the batteries independently? What else I've thought about here -- all things to think about. >> LAUREL: Do you have one, June, on personal information or personal things you may need to take if you have to get up and leave that moment? >> JUNE: I have that on supplies. I have a grab and go kit. I'll talk about what's involved in that. The other thing that people forget if they have any kind of dexterity issue is do you have the kind of device where it's easy to change the battery or if your memory isn't so good or you're like most of the world and you forget to add extra batteries or replace batteries. You need to go to more of the wind up devices where you don't need batteries and you can just wind them up and they'll work. Are you able to do that winding up of the radio or the flashlight? So that's another ability you have to assess. If you have low vision or you don't see well in the dark, there are emergency lights that you can put -- buy pretty cheaply that just automatically go on that are available. So think about that. Those are just some examples of -- you know, ability self-assessment issues. So I think we'll save the next area for maybe next week which is looking at establishing support teams. >> LAUREL: Good, I want to hear that. >> JUNE: And the buddy system and why a buddy system is kind of 34 PASS e and outdated at this point. So probably it's a good idea to check in with Dawn to see if there are any more questions. >> DAWN: Sorry, I had it on mute. I've got one thing that's come in that's rather long. It says just to share an E-mail our county emergency management director to join me on the 16th to jointly consider how we can improve community emergency preparedness for and in support of people with disabilities or limitations. While I was a disaster preparedness officer in the Air Force, my planning was incomplete and in cases focused too narrowly. One thing also to share from the Air Force would be our life support training for pilots who survive airplane ejections or crashes. We assume that the air crews could be incapacitated. These technologies and techniques were developed at our national laboratories and technology industries. Here is where the technology transfer program needs to come to the benefit of our consumers and first responders. Big statement, but today's webcast made me think that our engineers and scientists could be required to spend budgeted funds on technology to benefit people with disabilities and rescue crews during emergencies. >> LAUREL: That's a real -- that's really interesting and accurate. I haven't thought of that. >> JUNE: I just want to comment. And we in this work feel that it's not getting the attention it deserves. For example, evacuation technology. I think there is a lot more can be done around simple things like fire safe elevators and other technologies that with a little more reinforcement of research dollars and dollars in those layouts could easily 35 become a reality and be helpful to a very large part of the population. That's a good point and I wondered about that myself a lot. >> LAUREL: And congratulations to having a community disaster person coming to his office to -- or her office to discuss those issues. That's a proactive group -- community -- center I guess. Others, Dawn? >> DAWN: No, not right now. >> JUNE: Okay. Let me just move on just a little bit longer and just talk about this support team issue and, Dawn, feel free to interrupt if more questions come in, okay? I'm on -- let's see what slide I'm on. I'm on slide 47. And the message basically is to rethink and update the buddy system which was, you know, having one person to assist you in an emergency. What we failed to think about with that is that -- on slide 48 -- the buddy system is person and location dependent. It is inevitable that your buddy won't be there. They'll be on vacation. They'll have a cold. You may be in a different location from your usual location. You may be at a site after regular hours when a buddy is not available. So I say in slide 49, it's really time to trash the buddy system and think about support teams or support networks on slide 50. You know, people are going to be available to help you in an emergency, and they need to be people who are regularly in the same place as you are. You know, we fail to understand the real first responders are not the uniformed people, they are your neighbors, your friends and your co-workers. And they make up 70 percent of the rescues in disaster heavies -- 70 percent. >> LAUREL: Is that right? I didn't -- I didn't know we knew 36 that. >> JUNE: So slide 51 mentions to trash the buddy system and take a universal team approach. If everyone is trained, everyone can help. Everyone knows what to do. So establish support teams with many people where you spend your time, slide 52. Your home, job, school, volunteer sites. And remember to talk about what you're going to need with the network and to do this regularly. Slide 54 -- you know, make sure you're thinking about the kind of people you're going to need assistance from. Are they strong enough? You know, can you communicate clearly with them? Can they guide you to safety or do they tend to be panicky? And know how you instantly create a support team so that's critical because even in your best planning, you'll often find yourself instantly on the spot among strangers and you've got to tell them how you need -- how they can help you instantly. That's slide 55. And the next two slides, 56, just think about how you would give instructions quickly. Like take my oxygen tank. It's on the right-hand side of the desk. Or take my communication device from the table or take my manual wheelchair or the firefighter's carry is hazardous for me because of my respiratory conditions, so carry me this way. I can walk down steps if I can take your arm. Here is a personal example, Laurel. I was in a hotel in Maryland. The fire alarm went off. These fire alarms were always going on -- not particularly trusting that there is something real happening. Soy I called down to the front desk and said is this real or what? And they said is what real or what? I said the fire alarm going off on the fourth floor? 37 And they go we don't know about any fire alarm going off on the fourth floor? And I thought, hmmm. I was in the hallway and won they are woman out there and she looks at me and says what should we do? I said I think we should leave. And I said to her and I need help walking down these steps. So could I please take your arm? And she looked at me like, okay. And we just got out of there, and it turned out to be nothing, but if they don't know what's going on at the front desk, that's -- but the example was it was one more way to be aware of how you have create your own support network very instantly. I think that's it. Next time we're going to talk more about communication issues. We're going to talk about supplies. We're going to talk more about public warning issues, other emergency plans, about power issues, about drills, about supplies and much more about yoyo and scrapping yoyo 3 and thinking about yoyo 7 and I'll kind of leave you wondering about what that means. We're also going to talk about ice and the importance of ice. >> LAUREL: I-C-E? >> JUNE: So we're going to talk about all kinds of kits. Bedside kits, grab and go kits, home kits and car kits. And bed kits -- oh I said bed kits which is not well understood. So, Laurel, back to you? Dawn, are there any more questions? >> LAUREL: Dawn? >> DAWN: Not at this time. >> LAUREL: I tell ya, I'm looking forward to next time and these different kits. Anything we learn from Katrina and Rita it was people 38 being in a new place with nothing, absolutely nothing. And then going back home and having absolutely nothing to go back home to. >> DAWN: Laurel, I'm sorry to interrupt you. I just got one in and it that's do with those kits. It says the problem I see with many grab and go kits that have been developed is that they seem very generic. Granted they are better than nothing, but these guides that are designed to be put on refrigerators seem to be designed for just anyone. What is your take on developing a grab and go kit and what seems to be best practice for individuals? >> LAUREL: Well, June, we can hold the answer to that and I'll use it as my introduction next time. >> JUNE: Well, just to give you a teaser, there are a lot of ways to custom mice them, to make them more usable for yourself. For example, when I look at these kits and I look at that vanilla information about how to put them together and I do it, I can't even pick up the sucker. It's too heavy. So I'm going to talk about that and other alternatives that will work in the real world. >> LAUREL: Well then we've got -- we've got something to look forward to. Is it two weeks from today? >> JUNE: No, one week. >> LAUREL: It's next Friday? >> JUNE: Correct. It's the 16th of November, the same time, same number. >> LAUREL: That will be just great. And we hope you all will come back and listen to June finish up with this and bring even more 39 questions or observations like we've had. June, thank you. We'll look forward to next week and in closing just want to give credit and thanks to the Rehabilitation Research and Training Center on health, wellness and disability which is operated by our friends at the Oregon health and sciences university in Portland. It's one of the NIDRR-funded research and training centers and they do a first rate job with their research and as you can see they are very in tune to making sure that information derived from research and activities is made clear to those of us who are in the field and have a chance to use it in a very practical way. I also want to ask you to complete an evaluation. You can see on your website there that there is a button you can click on to complete the evaluation. We'd like to have feedback, not just on the content, which June would like to have. She's always interested in making her presentations stronger and more effective and more -- just make it better in every possible way. We would also like to have feedback on the website in terms of navigability, user friendliness. How to make it more usable. Do complete an evaluation. So meanwhile want to express our appreciation to NIDRR for supporting activities such as this for those of us who are not researchers to take benefit of research information. And here in Houston we want to let you know that this webcast is a product of many members of our team, Rob Dickehuth who is with the Center for Collaborative and Interactive Technology at Baylor College of Medicine. Marie Bryant who is our captioner who does such an excellent job and here at ILRU it's Marj Gordon, Sharon Finney, Maria del Bosque, Roxy Funchese, Rose Shepherd, Marissa Demaya and Dawn Heinsohn who does our questions 40 today. And so this is Laurel Richards asking you to please join us again next week when we conclude this and then also take notice of other webcasts that are coming up that are listed on our calendar. We have something for you and look forward to having you in our audience and any ideas you have for additional presentations would be very welcome by all of us. So, June, thank you. Dawn, thank you. And good afternoon to all of you.