1 Disaster Lights and Disaster Heavies: Relevant Emergency Preparedness Information for People with Disabilities. Presenter: June Isaacson Kailes. Www.ccitonline.org/ilru. >> SHARON: Good afternoon everyone. We're having a little technical difficulty with your connection today. So please, if you would at this time, you will go to a new url address. It is www.ccitonline.org/ilru. If you can go to this link at this time you will not have any technical difficulties. Today. Again, the link is www.ccitonline.org/ilru. Thank you. >> LAUREL: Thanks, Sharon. This is Laurel Richards, and welcome to today's broadcast, this being live show business, we always have something going on and today we have a bad link and we're asking you to go to this new link at www -- you see Sharon is from California and I'm from Texas. It's www.ccitonline.org/ilru. So we're going to go with today's presentation. You're connected right now to ILRU's website. You're watching either -- getting the audio streamed and seeing the realtime captioning either from RealPlayer or from Windows Media Player. You can ask questions and we invite that. The RealPlayer, you can click on a button at the bottom and your E-mail will pop up. Just type in your question and hit send and it will come to us directly. Those of you 2 using Media Player, you have to bring up your own E-mail program, type in the address, ilru.org. Ilru@ilru.org and type in your question and we'll hang on to the questions until June calls for them. And I'm aware that we're talking also to people -- not just the people here at around two o'clock central time, but we're also talking to people at another time in the future who listen to this via archive. Welcome to you as well. And you can also submit your questions to us and we'll still try to get them to June. If you do have questions or problems during this webcast, we have a series of FAQ's on the ilru web page for the webcast. FAQ's regarding -- if my link goes bad or if I'm disconnected -- but also you can call (713)520-0232. That's both voice and TTY. And this is with apologies to those of you who are old timers and very experienced with this webcast, but sometimes things go awry and you need some assistance, don't hesitate to call. Now, last week we were talking with June Kailes about one of the most important subjects we ever talk about, and that's preparing for a disaster. We took -- June as you know by looking at her "about the presenter" information has been around independent living for a good long time. June, by my count you must have been about 14 when you got involved. >> JUNE: Are you calling me a dinosaur? >> LAUREL: No, ma'am. We're about the same generation. We got involved with June -- oh, in the mid '80's at a training program here in Houston and have maintained contact as June has gone from career to career 3 to career -- different areas. And gee, June, for I guess about 15 or maybe 20 years you've been interested and involved in developing resource materials for disaster preparedness. Is that about right? >> JUNE: Probably so. I think you're right. A long time. >> LAUREL: Now, we covered a lot of very important material last week. This is a two part webcast and June's program or presentation slides are very, very explicit and clear and have specific information. If you missed the last one, don't hesitate to go to the ILRU archives page and listen to it or read the transcript and the presentation slides programs are there in print form. June, two things that struck me I took away with primarily -- or rather at the very top of my list, one was that 91 percent of people in America live in an area that is prone to catastrophic events. Is that right? >> JUNE: Right. That's correct. And sometimes we forget that because we tend to focus on the last major event. So we in California, fire is fresh in our mind over the last few weeks. But everybody has their disaster of the -- to choose from and their emergencies to choose from. >> LAUREL: 91 percent. >> JUNE: And so people how can you live in California with those earth wakes? We say well how can you live in the northeast with those ice storms and snow storms and we can go on and on. Everybody has got their hazards that we have to deal with in one way or another, whether we talk about disaster lights or disaster heavies. They are indeed there. 4 >> LAUREL: I was astonished at the 91 percent. And the second thing I took with me was how you found useful just having one of those little flashlights -- a flashlight of any size, but you had indicated yours was a tiny flashlight and came in so handy in dark garages or places of darkness. So since last week I've done two things. I've attached a little bitty flashlight to my car ring. It's one of those little flat things with an L. E. D. that they say can be seen a mile or so, further than I can see. Number two is I've tried to find out where that 9 percent are living who don't have catastrophic things. I can't find that, June. >> JUNE: Well, I do have a map. I'll have to examine that and let you know about that. I'm not sure where it is. I thought it was in Monday tan a, but they are always having fires or ice storms or things. So not there. >> LAUREL: We'll have to find that out. One of these days we may just get tired of hurricanes down in Houston, or high water or whatever the disaster of the day is. So we're going to continue today, June, with the presentation on disaster preparedness. Now, we left off last time with -- gosh, was it slide -- you'll have to refresh us on where we're going to pick up today. >> JUNE: What we covered last time just so people know who are new this time, we covered issues around good preparedness materials and really making it real, which means that the material is created with and by us instead of about us and for us. And we illustrated some of the differences about material that's kind of created for us. We talked about why bother preparing, so you actually illustrated that 5 well with your little microflashlight and that this is not just about the catastrophic events, it's about the daily kind of emergencies we encounter, too, the disaster lights. We talked about the importance of knowing and evaluating your own skill sets in terms of what you will be able to do on your own and what you might need help with. And looking at creating the kind of supporting you need or support teams or assistance. So today we're going to look at communication issues and public warning issues, emergency plans, those dreaded emergency drills and supplies, supplies and to go kits. >> LAUREL: So what slide would we begin -- if we want to get oriented to where are you? >> JUNE: Why don't we wait for people to reconnect. I'm not sure if everyone has reconnected yet. Why don't we just review some questions that came in after the call was over. >> LAUREL: Let's do that. >> JUNE: I got one question that talks about good standard Red Cross information doesn't really -- is not directed with disabilities and that was the point of last time. You know, it's not that all of their material relate and pertains to us, it's that we need to sometimes go deeper in terms of thinking about the hearing and the seeing and the physical signs -- and the learning and understanding issues that may also come up that we need to plan and prepare for. And then the rest of the question was about some of the issues that -- the lack of access issues in shelters and if time allows we may get to that, but if not, that will go in another call, where we talk about 6 sheltering issues. And the second question that came in was about advocacy. Sometimes people with disabilities are dependent on policies of counties offices of emergency management and the policies of the Red Cross when one determines if it is necessary to seek shelter. Can you please discuss how to address the failure to provide accessible beds and transfer assistance in shelters despite DOJ guidance saying it is required. Can you discuss the lack of TTY's and sign language interpreters? And the strategies when policymakers refuse to provide these services. >> LAUREL: Boy, that's a tough one. >> JUNE: That's a mouthful. >> LAUREL: Well, and it's true. >> JUNE: It's true and I think there is a lot that can be done, many of these issues we're dealing in California and what we found is that some of it has to do with just being -- getting to the table, being at the table and fostering ongoing relationship with a variety of players in emergency management that contribute to these issues and barriers. And that takes a lot of hard work and it doesn't happen overnight, but it's part of the advocacy process. And the other part is that, yes, people need to keep talking to DOJ, the Department of Justice, about what the problems are and being very specific with them and there are some legal organizations in this country who are also watching this closely and some of them have filed complaints and that always gets attention and some increased attention to the jurisdictions dealing with the issues that they may have put aside longer 7 than probably they should have in terms of getting this kind of attention around access. >> LAUREL: June -- >> JUNE: I could go an hour and a half on this alone, but I know we need to move on to what we have to cover today. >> LAUREL: Let's assume that folks are with us and we're all connected and we're on this website that is www.ccitonline.org/ilru. >> JUNE: Okay, that sounds good, Laurel. And for the listener's access, I will narrate the content of the slides and give you the number of the slides so that those of you that will listen later won't get confused and those of you who'll look at the slides later can know where we are. >> LAUREL: Go ahead. >> JUNE: I'm on slide 58 and that's covering the areas of communication. And that is about getting and giving information. And again before we move on, just a reminder to all of you, you can send those questions in at any time and I'll stop periodically to answer them. In terms of communication, slide 59, this is used -- and you have to plan multiple ways to give and get information, by T. V., radio, E-mail, cell phone, pagers, Internet, low cost two-way radios. What the important message to understand is that different communication systems work differently in emergencies. Some way work while others may not. The more systems we have available to us, the more likely it is that one of them may still work. So think about the systems you have available to you. People forget in this modern technology era that all of our fancy new 8 home phones that are cordless may not work. Why might they not work? Because they depend on electricity. And they depend on being charged. So the take home message is make sure you have an old fashioned phone that doesn't depend on electricity, that just plugs right into the wall in that RJ-11 Jack and not another plug for the electrical piece because they tend to be more resilient and will not depend on power if indeed you lose it. People forget about that a lot. So think about the different kinds of communication that you have available to you, whether it's your cell phone, your text messenger, your -- whatever you have. And also think about battery backup. We all walk around with our text messagers or our cell phones and in a larger disaster heavy emergency, we're going to run out of our battery power. So it's prudent to think about auxiliary sources you may have or can get to power your cell phone or text messager and there is more and more coming on the market in terms of options for auxiliary battery power for these devices. So it's good to look at that. As well as one thing that came up in the last two weeks here in California was that for us of us who have access to 9-1-1 -- and that is a big issue, many of us who are deaf or hard of hearing still do not have good access to the system, but for those who do and for those who are in areas that have more advanced reverse 9-1-1 systems, it's important to go online and to register your smart phone or your text messaging device or your cell phone so you can get those messages by that device as well if power goes down or whatever, it's just a good prudent thing. One more thing to do in terms of communication. 9 People who operate ham radios have one more system that they can also rely on. So it's always good to have a friend who knows their way around the ham radio world. In terms of public warnings, we still have a real serious issue in our community and that is for example in California in the last couple of weeks, there is still over reliance on police driving through the neighborhood with their megaphones or the helicopters broadcasting messages about evacuating. They are very focused on people who can hear. So speakers, radios, T. V.'s, public address systems -- there is a lot of problems in the area. Things have improved out here in terms of more captioning and more use of interpreters, but it's still not ideal. So that is really an advocacy issue in that sometimes when there is good captioning, the radio and TV announcers that are not verbalizing the text messages, so people with no vision or low vision don't have a clue what's scrolling on the screen in terms of where you might go to a shelter or that kind of thing. All of this is regulated now by the FCC in terms of increased access for people with visual and hearing disabilities. It's not always complied with. So it still remains a major advocacy issue for us to pursue and make sure the captioning happens, the voice over happens in terms of the scrolling text information and that the new and next generation of 9-1-1, reverse 9-1-1, include all people who l TTY users or texts message users so that nobody is left out. Those are big advocacy issues. I have a picture here of an old slide I have of two guys being held at gun point in New Orleans lying flat on the sidewalk and one -- they are 10 both -- one guy is signing, Deaf, I'm Deaf. And the other guy is saying something I can't make out, but these people had no idea there was a curfew in New Orleans and the people holding them at gun point had no idea they are deaf. I think it's one illustration of communication access issues. So I think for the next generation on reverse 9-1-1, hopefully we'll be looking at streaming text on satellite radio receivers and streaming text alerts on buses and highways and voice over alerts and TTY's being very compatible and connected as well as text messaging units. And also another communication device that you probably know more about than even I, Laurel, is the national weather radios. These are radios that turn themselves on automatically and emit some kind of audible or vibrating alarm that leads you to go there and find out what the alert is related to a hazard, whether it's a device that helps shake your pillow or whatever so I know they've improved the access to those national weather radios as well. So that's kind of what I want to say in a nutshell about communication issues. And I think we'll just move on to emergency plans, if that's okay. >> LAUREL: Yes. >> JUNE: Share o I'll check in with you first. Any communication questions? >> SHARON: No, I don't have any questions at this time. >> JUNE: Okay. Why don't we just move on to emergency plans. And these are plans that relate to how you practice and how you put together what you will anticipate doing in a number of kinds of 11 emergencies, and we always say that emergency plans are only signs of good intentions unless they generate into hard work. And I'm on slide 61 which says there are plans for home, neighborhood, work and school because that's where most people spend the majority of their time. So I always like to start with the family plan and I think that's the most important of them all because unless your family has a good plan, that's what you're going to be worried about first and foremost if you're not right there with them. It's always good to know what the family's plan is if an emergency happens during the day and you're at work and your son is at school and your daughter is in preschool and your husband is in another city or your significant other or whatever, or your intended isn't due for several hours. It's really good to talk about what the plans will be, know what the plan is for your kid at school or day care, and have some supports available if your attendant is not going to be available and we talked about support teams earlier last week. So one of the issues that is of real importance for people who run independent living centers and other disability organizations is that if you become a responder after an event, and our organization goes into response mode, how many people will actually be there? So there are a number of studies that talk about people who won't show up for work, whether they are health care workers or the like because they have more pressing problems. They have dependent parents or children or they live far away or they don't have a good family plan. So encourage all your people to have good plans so if you need them at work, they may be more apt to be there if they have peace of mind about what their family is 12 doing or significant others and where they are and that they are okay. So plans should be simple. They should be -- maybe even bullet points sometimes, but they need -- or a checklist. It's important to just really talk about these things together with your family. And the planning, again, needs to think about all significant times where you spend time. And you need to think about planning for all kinds of events if you need to evacuate and remain in your area -- I'm on slide 63, by the way -- or if you need to leave the area; or maybe it's a pandemic or something where you need to just stay in your home or stay at work for a significant amount of time. What's the plan? Is there enough food? Is there enough water? Can you shelter in place? And the plans just need to be realistic and not really magical thinking. For example, some people who live on the third floor of an elevator building, they have this magical thinking about how they might get down the steps if there no power, but they really haven't planned or explored how they are going to do it, whether it's through an evacuation chair or they are able to be carried or they've got the physical ability to walk down a couple of flights of stairwells and you really have to think about how you would evacuate. Again, I always say no magical thinking and I have somebody sitting in a lawn chair exiting a ten story building because he's got about 10 helium balloons attached to his chair. Magical thinking, and I don't think we'll be able to do that, although it would be nice. Work -- you know, our current code talks about areas of rescue assistance and those are areas where people can wait until the first 13 responders come or the firefighters come. Laurel, you know you talked about that last week. You said your staff who are wheelchair users are instructed to wait in that area. >> LAUREL: That's right. >> JUNE: And after 9/11, our community is a whole lot less tolerant about waiting. And some of us have kind of deemed, you know, kind of in a subculture disability tongue in cheek language that are calling these areas of rescue sis tans -- they are called slow burn areas or ovens which is funny but not funny. Because the take home message is we all want to get out. We don't want to sit there, and if it's a catastrophic event, the chances of first responders showing up are not good. They are not good. So we really need to plan about how we're going to exit a multistory building if we're dependent on typically the elevator. So are we included in these plans and what are the plans? And how realistic are they? And are they plans that we will understand because they are in alternate formats so they are accessible? And are they accessible to people who are nonEnglish speakers or people who have difficulty reading? So there are a lot of evacuation devices available, but people do need to sometimes advocate where they work or go to school that they be purchased. You need to think about it or you need to think about could you be safely carried and what would it take to be carried? We'll talk about that a little more later. So the other part of a good plan is having -- slide 67 -- a list of out of state contacts. And people say, well, why? Why? And it's because the phone lines get really busy in the area with the event happening and 14 you can't get the people in the immediate area. For example, I was in D. C. during -- right at 9/11 at the FAA, not too far from the White House and the pentagon and I was not able to make any local calls, but I could call my husband where it was only 6:00 a.m. in the morning in California and say what's happening out there? We've heard the pentagon is bombed. Union Station was bombed and I was able to get far out of the area, but not make an immediate call. So the take-homeless on is have an out of state contact list of multiple people you can call. The first one you reach has to also have a list and then they are responsible for calling other people and saying you're okay or saying what your status is. And there is a form for this contact list on your handout list on emergency preparedness tips. So you can just copy that, fill it out, keep it in your wallet or your phone or whatever. Now before we go to some of the power issues that are so critical for some people with disabilities, I will just check in with Sharon real quick. >> SHARON: June, I have not received any questions yet. >> JUNE: Good. Thanks. All right, well with power issues there are significant issues about people who rely on motorized chairs, respirators, suction machines in terms of how are you going to recharge those batteries when the power goes out for a significant length of time? And this is a pretty complex issue. So the recommendation is that you talk to your vendor about what the options are. You know, sometimes you can use a car battery with jumper cables and sometimes you can't. Each device is kind of specific so it's just a reminder to really include that 15 in your planning as well as the contact to your local electric company about your power needs, particularly if you're on any kind of life support device like suctioning or respirator because they have a priority reconnection service. Most of these utilities keep that kind of list. However, there ain't no guarantees that they'll be able to do it, but it's one more piece of the plan you should do knowing that there is no guarantees. It's one more step. You still need to have a backup plan for your own devices and in your handout is an article that I put together after talking to a lot of people about emergency power planning for people who use electricity and battery-dependent assistive technology and medical devices. So it's an article that gives you a beginning checklist and other people in that article talk about what their experiences have been and how they've been able to plan for their own power backups. So moving on to drills -- emergency dills. And to know it is to do it. And I always say, unfortunately our drills did not end after we got out of grammar school. Well, Laurel, do they have drills at ILRU? >> LAUREL: You know, we do. Until recently because Laurie Redd is such a good advocate, we've had better drills. The other ones were announced over the office -- it's about a 14 story building wide microphone that we couldn't hear within our offices or it was so garbled that nothing was intelligible. We would not know until three minutes in whether it was a drill or the real thing. However, we're also part of TIRR which we think is the finest medical rehab facility in the country and over ILRU's 30 year career we spent time in the office occasionally at TIRR and experienced very sophisticated drills there. Just hearing the 16 door Schram -- those fire drills -- >> JUNE: What floor are you on? >> LAUREL: We're on number ten. >> JUNE: Tenth floor. Everybody practiced exiting from the tenth floor? >> LAUREL: We've practiced also with evac chairs, but, June, evacuation chairs are not -- they do require a great deal of practice. It's not as easy as I thought it would be. >> JUNE: That's exactly right. And that's my point is that they are not intuitive. And they take different levels of strength depending on which ones you have. >> LAUREL: Not just you going down the stairs, which is a thrilling kind of thing, but also helping a person transfer into the evac chair if you're not practiced in helping someone do transfers, you can wrench your back. It's a very interesting process. Very challenging. >> JUNE: I think what we do have is a lot of people who would rather not have to do it until the real thing, but the problem is if you wait until the real thing, you may be in serious trouble. There are a lot of stories about the world trade center. One was a secretary who kind of really panicked after she was told she had to evacuate. Wheelchair users didn't have a clue what she was going to do and it was only because two other secretaries reminded her that after the '93 bombing they had purchased evacuation chairs and where was it? It was under her desk. But there had been no drills and no practice. I mean, she did get out of there, but it does make the case to really do some talking and practicing 17 if these things are even going to be useful and helpful. >> LAUREL: June, I know you're aware of the many, many stories of people in wheelchairs who are lined up by the exit door on the different floors and never -- they are duty fully waiting for those brave firemen to come up and it just wasn't possible. >> JUNE: That's right. And let's learn that not everything is a single building fire where you're going to get good first responder response. So take home messages here are that practice and drills are important. I'm on slide 76. That you can do it by walking through the procedure that is a staff meeting talking about it, or in your apartment building talking about it. You can have announced drills. You can have surprise drills and you can have silent drills or mine drills. Now, even a walk through drill -- on slide 77 -- are really important because you get to really problem solve and walk through who can operate and is strong enough to work with the evacuation device and who can do what? So everybody should be trained even if not everybody can manage it physically, because other people can help with other kinds of things leading away, helping people to transfer or whatever. So you really have to discuss -- it's helpful to discuss things, methods of transferring, using two way communication systems in the area of assistance, knowing how to use many of the exits and not just the one you may be most used to using, and how people who have hearing loss or are deaf are going to hear the alarm or are going to know the alarm if there is an old building and there is no strobe. And practice with service animals as well. And people whose knowledge of English may not be very good or what have you, 18 so it's really good to walk through all this stuff so go through the drill and announce that you're going to have a drill on Tuesday, November 21st at ten o'clock. That's a good time to practice use of evacuation devices, coping with different scenarios, blocked exits and help people with vision loss or hearing loss to also negotiate their way through the drills. And then there is surprise drills where the rubber really meets the road. Can you really do what you talked about doing? So it really works when you're doing it by surprise. And you know become to those announced drills for a minute, the problem, Laurel, with the announced drills is sometimes I call it a Starbucks moment. No one is around. They've all gone to get coffee. So it's not the time to have a Starbucks break either. >> LAUREL: Good point. >> JUNE: And then there are drills where you silently think through the fire alarm went off right this second, what would you do? What kind of help might you need? What's the plan? If an earthquake happened here in the next moment, what would I do? Or I'm going to sleep in a strange city in a hotel room and if the fire alarm goes off one hour from now, would I have what I need to get out? When I checked in, did I happen to tell the people that I may need assistance? Kind of those silent mind drills. Okay, back in with Sharon, anything Sharon? >> SHARON: Not necessarily a question, just further information on what you mentioned. This is someone who is saying the weather radio alarm for the deaf and hard of hearing can warn them regarding hurricanes, 19 flood, tornado and the price of such a radio is around $140. It is the newest device and you might want to share that with those people on this webcast today. >> JUNE: Great. If that person could send us some url's about where those radios may be available, that would be very helpful. I will say though that that is pretty pricey and that leaves out some people who just can't afford that, but it's good to know they exist and the listeners who are on the call, the participants on the call -- listener is not the right word -- might want to know where they can go to get more information on those more accessible weather radios. That's a great comment. Thank you. >> SHARON: And that is it at this point in time. >> JUNE: Okay, Laurel, anything from you? Or should we move on? >> LAUREL: A quick observation, I think I told you that we had a fire marshal trainer who came out last week -- one thing that he said that was very interesting was that when he travels, he always takes his own fire alarm. He always takes extra batteries and he always gets a room on the first floor. I thought that's good enough for him, I'm going to remember that. >> JUNE: I always -- when I'm traveling alone, I always -- I mean my mantra used to be in this order: Far a way from any smoking floor and then lower floor. Lower floor, but if the smoking floor was the lowest floor, then I would take it. I have been in many -- I travel a lot, and I can't tell you the number of times those alarms go off in the middle of the friggin' night. 20 >> LAUREL: And are they generally accidents? >> JUNE: Yes. >> LAUREL: Do you get an alarm or how are you notified that it's not for real? >> JUNE: Well, I have just learned to call down immediately to the front desk and say is this real or not? And in some of the new hotels they have verbal announcements that say we think this is a false alarm, stay tuned for more information. The problem with that is that is a verbal announcement. What about all of our hard of hearing and deaf folks? They are not going to hear that. So they are going to tell you the most prudent exit or to communicate with the front desk by TTY, but then we know what a gamble that can be. >> LAUREL: June, regarding the office and as you say planning for places where people will be most of the time and how one would evacuate there. Talking about evacuation procedures, seems to me that people who know that you have -- that you or the office in which you work have people who have mobility impairments in the way of getting out fast, it seems to me that one of those nights out where families go out and they meet their neighbors, it seems to me like in an office complex that would be extremely valuable to get to know your neighbors, especially those who look like they are nice and strong. And just get on a friendly basis so they know you and in so many cases we don't know our office neighbors. >> JUNE: I think that's an excellent point and it goes back to when we talked about last week, just creating those support chains and in the work environment and in the home environment that could mean, you 21 know, and probably does mean knowing your neighbors and talking about this very specifically with them, particularly if you work in a smaller office and there are only a few that could really use or effectively use an evacuation device with somebody and you would need to rely on perhaps the neighboring co-workers, that is critical. And in the home environment it's critical to infuse these discussions about emergency support, you know, when you have your block parties or you have your neighborhood watch discussions, if you do. And if you don't, it's just part of something that maybe you should start. I know we have (inaudible) condos and infused in those discussions are (inaudible), getting a list, an emergency list. At least we know we have all the information, their cell, their pager, their home phone, their work phone. As least we've gone that far and the discussion continues about how we support each other if something major happens. So you have to really be proactive in doing that or it won't get done. So let's move on to supplies. This is the one area, Laurel, of all the areas we've talked about which may be a little more pricey. This is where sometimes the cost tend to increase. That not everybody can afford to buy stockpiles of things. But nevertheless it's important to review supplies. So that's the first message here is how we time that will shorts game NPR, the puzzle master. So I mentioned this last time so don't blurt the answer out. >> LAUREL: If I remember. >> AUDIENCE MEMBER: YOYO, do you remember what that is? Don't say it. Y-O-Y-O. 22 >> LAUREL: It's my favorite. >> JUNE: I'll give you two seconds to think of what it might be, but it's the easiest way to remember why this is so important. >> LAUREL: It's not the cello player. It's not the plan who plays the cello. >> JUNE: YOYO stands for what? You're on your own. So a lot of the old emergency information says plan to be on your own for three days. And we call that YOYO-3. And I say if you're going to do good planning and you're going to plan for the disaster lights and the disaster heavies, ire much better off planning for a YOYO-5 or a YOYO-7. You're on your own for seven days. >> LAUREL: That's true. >> JUNE: So we have all the difficult supplies, the extra batteries, the wrenches to shut off the gas, the food, the blankets, cash. We also have different kinds of kits, and I'm on slide 82. We have the carry on you kit, the grab and go, plus a grab and go kit for home and a bedside kit. And this is where the Red Cross information is pretty good about what goes into the home kit, but not so good about some of the disability specific kind of information. Specific kind of stuff you should think about going into your kit and that's detailed in your handout in a publication called taking responsibility for your safety -- tips for people with activity limitations and disabilities. It's the same publication that has that out of state contact list form in it. But this will give you some sense of what some of the more disability specific supplies may be. Extra 23 batteries for oxygen or breathing devices, text messagers, cochlear implants, copies of essential medications, wearing work gloves to protect your hands. For somebody like me who does a lot of walking and uses their hands and if you're a wheelchair user, protecting your hands from debris or glass after certain kinds of events. We talked about the weather radios with the visual and text displays for people with hearing limitations. People with visual disabilities -- marking your disaster supplies with fluorescent tape or Braille or large print, high powered flashlights. People with chemical sensitivities, important to maybe having industrial respirators available or other supplies that can filter air supplies and that N-95 rated particulate filter mask may or may not be enough for people with chemical sensitivities. So that's just kind of a quick sample of disability related supplies we need to think about. So carry on you supplies -- those are the things that are really essential. Everything from that little microflashlight you mentioned, Laurel -- and I'm on slide 83 -- to any emergency medical information or any essential medications you may have that you really can't be without because it's life supporting or whether it's seizure medication or high blood pressure medication. A lot of us take medications that, you know, are just not that essential and we could probably live without it for a long, long, long time, but others could not. And you need to think about that. If you happen to be in a grocery store during a major event, would you have enough insulin with you or would you have seizure medication with you if you happen to have to stay in that place for awhile? So, again, 24 keeping your communications devices well charged and having alternative battery power for those devices as well as we talk about ICE? Do you know what ice is? Ice stands for in case of emergency. And you know why I've got this here? It's something people are now using on your text devices and their cell phones. A lot of people now have a listing under ICE and it's who somebody should contact if they find you unconscious or whatever in an emergency. They go to your cell phone and they look up ICE and that's where you have listed your emergency contact people. >> LAUREL: Oh, my goodness. >> JUNE: It's maybe not as well known as I thought. >> LAUREL: Well, you're talking to somebody who is not very well versed. That's great. >> JUNE: And in the same publication, tips for taking responsibility, is a link to a form in which you can use to integrate your emergency information into a sheet that would go into your wallet or backpack or whatever. It's the kind of thing that if somebody found you unconscious or weren't able to communicate, what would a medical person or somebody else have to know about you in an emergency related to any health information? >> LAUREL: June, regarding the new convention and the cell phones, et cetera, the PDA's, are you recommending that we -- those of us who have those make an entry like that? >> JUNE: I think it sounds prudent to me. I can't think of any counter indication why not. It's just one more thing you can do. There is no guarantees. But I also carry in my cell phone emergency lists, 25 contact lists as well as the emergency neighbor contact list is all loaded in there. The medication issue is really tricky because a lot of people can only get 30 days' worth of medication, which means they probably have to constantly be rotating a seven day emergency supply if it's something they had to carry on them or with them. So it's not easy. It's not easy -- >> LAUREL: June, excuse me. >> JUNE: You need to determine which of your medications are actually essential and which are not and then think about which ones you need to maybe have on you. Do you have a question about that? >> LAUREL: I was thing about the medications and during the aftermath of hurricane Katrina that was -- Sharon, am I not correct -- that was one of the most frequently asked questions was about how to obtain their meds? >> SHARON: Yes, it was. >> JUNE: What we learned, you know, after the fires the last two weeks here, we were lucky here in that we had a lot of our infrastructure in place so people could get some assistance with replacing medications, but if you don't know what you're taking and you just say it's a little green pill I take for high blood pressure, that's going to really slow things up a lot. So it's good to put into your emergency health information thing that you keep in your wallet. And for the disaster heavy, where the infrastructure may not be in place, and it may take longer to get or replace those essential medications, then that's a compelling reason why you should have some of those on you. 26 >> LAUREL: And the amounts, too, I presume on your list. >> JUNE: Right. Right. >> LAUREL: The measure or whatever. >> JUNE: So one of the things that I've thought about when they talk about a grab and go kit, I always had a grab and go kit by the front door in earthquake country and all that, but I realized many years ago that if I had to walk out of here, I really couldn't carry that sucker. It was way too heavy. I had to miniaturize everything for me. If I couldn't use my scooter, I'd have to use my Walker which means I would need my hands and my legs and I'm not going to be able to carry much. So I just equipped a very -- a traveler's vest and I miniaturized everything. A miniature radio, flashlight, cash, whatever, and just stuffed it in there. So that I could just put on and leave. And that's how I did it. But you have to customize this stuff for yourself. So think about, again, your abilities and what you can and can't carry. The other thing that I thought about in the last two weeks and gotten more serious about was I had to leave in a nanosecond, no warning event, what would I take? What could I grab besides that little vest? If I get time, what would I take, second, third and where is it? So just think about -- here is my list, because if this is not in the vest here is what I think I'd take. And again, it's me and where I live. I would take my sunglasses, my hat and my keys and I would take my cell phone and the charger. Then I would take my wallet and then I would take -- if I had time my laptop and if I had time my ipod, and if I had time my emergency documents and then if I had more time the pictures and if I had more time 27 some clothes. In that order. I'm still thinking about this, but that's what I think I'd take. So you'd ask -- well, like what documents would you take? Well, still thinking about that, but I've been thinking about putting on to a little Flash drive the insurance numbers, the deed on the house insurance numbers, the Social Security card, drivers license, berth certificate -- just getting that scanned in and putting it on a Flash drive. So work in progress. That's my grab and go list. Not my grab and go kit. Then home kit -- you know a home kit on slide 86 is what you use -- what you plan for kind of if you had to kind of shelter in place. What you would need to be self-sufficient for a lot of days. Three days, five days, seven days. You know, the Red Cross has a good list, but then you have to add to it and customize it related to your disability. And there is issues around always remembering to rotate batteries and radios and stuff and I think that is such a drag. I hate to do that so I've just started to replace what I can slowly with wind up flashlights, you know, that are powered by the wind up thing. The radio that is are powered by the wind up device instead of having to always think about replaces batteries. They run on batteries, but they also have that second option. I think that's been helpful for me. And you've got to remember to also have the supplies for your pets. You know, pets have reached a new level of priority with emergency managers and they realize now that you ain't going without your child pet. So pets are slowly getting recognized in this country. So you better have supplies for those pets as well. Toys and food and all that stuff. 28 You've got to have cash, small bills and coins. >> LAUREL: How much would you recommend, June? >> JUNE: I have no clue. But I think it depends on what you can do, but I would recommend quarters, a roll of quarters, and I'd recommended a shrew of one dollar bills because I don't know who is going to be making change. I wouldn't be carrying 20's or 100-dollar bills on me. And phone cards -- sometimes those pay phones -- when all else fails, they may work. I don't know. An good -- you know, you think about the nonperishable, long shelf life food, things you can open easily with a can opener or if you can't use a can opener, what can you use? And I always say you think about food with long shelf life, well, make sure you can tolerate it. Something you can tolerate eating. And so I always say have a 4 D. drill now and then. You know what that means? >> LAUREL: No. >> JUNE: That's another puzzle, 4-D. It has to do with food. And it has to do with -- you have to rotate this food. It doesn't stay fresh forever. So rather than throwing it out, I think you should have a 4-D. drill and that is a delightful, delicious, disaster dinner. What that means is eat it before you have to throw it out. And when you eat at this time, it's like a drill. It's like a test if you can even tolerate eating it during an emergency. >> LAUREL: That's pretty good, June. >> JUNE: I just made that up. And then I think for people with disabilities who need help getting into and out of bed, you may need to have a bedside kit. Items that you would need if you're trapped in or 29 near your bed and unable to get to other parts of your home. People rely on attendants coming in in the morning, but it's nothing we ever read about, but I think there are a lot of people who need to think about what do they need to have near their bed in case they are trapped there for awhile, whether it's water or food or your cell phone or what. You know, in earthquake country, we have -- I have a knapsack tied to the leg of the bed with emergency stuff in it. So who knows what kind of condition we'll be in after a major earthquake if we're in bed. There is also a crowbar under the bed if you have to pry yourself out of something or a space or a jammed door or whatever. So think about that for hazards in your area. >> LAUREL: I've just decided I'm not going to move to California. >> JUNE: Yeah, probably a good idea. Sharon, any questions? >> SHARON: Actually, this question refers to your previous statement. Y'all are talking about like a National Night Out. This person is asking if you have a sample survey that you could provide to share with the people with disabilities in my company to determine how they feel about the company's drills and emergency plan as it pertains to them? >> LAUREL: That's good. >> JUNE: I dove a document that is online. I think it's in your handout. It's called emergency evacuation preparedness: Taking responsibility for your safety. And it was really written with the workplace in mind. And there are a number of checklists in here and there are a number of prompts about workplace planning. So I don't know if that 30 answers the question or not, but one of the checklists in here is will you need assistance in an emergency evacuation? Because like we learned after 9/11, but a lot of us knew before 9/11, there are a number of hidden or nonvisible disabilities that always can't negotiate their ways stairs for a number of reasons and this begins to talk about ways to safely identify who they are and identify the kind assistance they may need. Sharon, give me that question one more time. >> SHARON: And I have one other question. >> JUNE: Did I answer that? >> SHARON: I think you did. I think what you're looking for is some kind of sample survey or instrument that they could provide their co-workers at their company, co-workers with disabilities so they can get feedback -- let's say they are in H. R -- they and they want to get feedback as to how those individuals with disabilities feel about the company's drills, emergency plans and should they -- >> JUNE: The caveat is it's all about your being proactive as somebody with a disability and not taking no for an answer and really continuing to pursue it. And not hoping it will be done right because we know where hope will get us. It's about really staying on it. So I recommend this publication. It's available and you can download it and it does have those kind of checklists in it. So it's a good piece to use at staff meetings. A good piece to have your H. R. people read. So next question? >> SHARON: The next question comes -- they have a question. They have had whatever you want to call it -- a fire warden training or 31 whatever with the fire department in their city, and the fire inspector I guess, if that's who he was, he had said to someone in the office they have evacuation chairs in their office. He had said to the fire whoever guy, we plan on using evacuation chairs. And the fire inspector said if you use those chairs, you're also liable not only for the person that's in them should you be pushing them, but for also that person in the stairwell that might be injured. Is that true? >> JUNE: You know, this is just me talking and I'm not giving legal information because I'm not a lawyer, but you know when this is a life and death situation, I don't give a whole lot about who is liable. We want to get out of there. Worry about the liability later. It's about life safety and I probably get all kind of criticism for this, but you know, I just think we have to let go of some of this litigious stuff and think about protecting lives and saving lives. So some fire departments have been very reluctant to recommend evacuation devices, but for a lot of us, it may be the only way we can get out as well as we can get out and we want out. So I think we have to push back on this. Some fire departments say, well, they are slow and they will block the stairways. Well, we haven't found that to be true. Some of the evacuation makers have tested the speeds at which somebody can exit using some of devices and it's not a whole lot slower than people walking down the stairwells. So I think you need to weigh the prose and the cons, but I would not let that liability argument stop me from using those devices. >> SHARON: Okay, thank you. That's all the questions I have at 32 this point. >> JUNE: Well, I think I want to make the point that we've gone over a lot of material in the last few sessions and it's not to overwhelm you, but just to have you think about -- you can't do everything at once, but if you do a little at a time, things will mount up, and it will help in terms of your preparation and being more prepared. Some of my favorite sayings about all this is, if you always do what you always did, you'll always get what you always got. And is that enough? So I think if anything the goal was to help you review, rethink and revise your emergency planning and response issues because it's your safety and it's your life. And we shouldn't give up the fight about this in terms of our advocacy. So I think it's not good enough to just know about these things. We've really got to do them and apply them. So on the last slide I had here, slide 96 says so it's your responsibility. It's your health. It's your safety. It's your choice. It's your call. And it's your life. So that's it. >> LAUREL: June, that's just excellent. And you've covered so much information in these last two sessions, all of it I'm sure needs to be reviewed by those of us who are listening and trying to cleanup our own lives with regard to being ready for any kind of disaster, major or minor, or as you say light or heavy. And it seems to me that the resource materials that you've provided in your slide program are thorough. They are well written. Also the references that you give us to check on, you know, for other resource materials are very thorough as well. So of course this is one of 33 those it's up to us to follow up on this. >> JUNE: Laurel, all the additional slides I didn't mention are those resources and they are all available online and they are all able to be downloaded in multiple formats, whether it's pdf or Braille-ready files or just html. >> LAUREL: Good. If there are those of you who are -- maybe don't have access to the Internet and are hearing this and would like to have some of those resource materials, I would contact a center near you, Center for Independent Living, or certainly contact us and we'll see if we can put you in touch with how to access those materials. I would think, June, that most of the DBTACs -- there are ten regional Disability and Business Technical Assistance Centers on ADA, I would assume that these could be available through them on request. >> JUNE: I don't know. I'd like to assume that, but I don't know. But again, they are all available online and there are also some audio versions available and if you can't find them or you need them, send me some E-mails and I'll try and connect you with the source. >> LAUREL: Good. >> JUNE: Or maybe we can send out the audio file -- although that's pretty big to put up there. >> LAUREL: Well, contact us though if you just -- you know, if you can't access it otherwise, and we'll help you one way or another. June, an observation about money, how much money to take, et cetera, that you mentioned before. Sharon, you probably recall that when we were doing that counseling for folks -- this was after the fact, June. It was 34 people that had already been disbursed all over the place -- a lot of folks were receiving funds from -- an initial amount of money from FEMA. Was that $2,000? >> SHARON: They received debit cards in the amount of $2,000. >> LAUREL: We noticed that some people used it to buy -- because they were without clothes. They used it to buy clothes and then ran short before too long. And of course we had run across so many organizations, churches especially and synagogues and other kinds of organizations alike that who had donated -- who would provide donated clothes and just -- it reminded me that folks need to be careful and be selective on what they spend money on because who would have dreamt you would be so long a way from home and so long away from getting back to what life was and for most of those folks it was nothing to return home to. So be careful with the cash you get and use it wisely, prudently, and look around for resource materials and resources, food and clothes, et cetera, from the Salvation Army and others on that. >> JUNE: Laurel, that wasn't very much of a catastrophic event. Fires are at the total end of the continuum because the clothes and the toiletries and all kinds of donated emergency supplies were at some of the shelters. So, again, it just depends on the event. So I guess it's wise advice what you say. Don't spend it all at once. >> LAUREL: Yeah, and especially if there are resources around you. I told you before, June, if I was evacuated, I would sure try to place myself in a hotel that was near a library and a church or synagogue because resource materials at both places -- the Internet be available 35 through the library and so much of this material was available on the Internet and so few of these folks had access to it. >> JUNE: Two things about that I've learned -- number one is don't count on having power. That means no Internet. But number two, if we do have power, for the first time in my life I've actually seen this happen firsthand at the shelters out here was instead of in some of the shelters instead of wheeling in those old fashioned pay phones on a trailer, and many wheelchair users and others couldn't reach, what happened this time was that the Verizons and the Sprints came in with their Wi-Fi laptops and cell phones that anybody could use. So it allowed for good physical access, E-mail access, although I couldn't always find a TTY in the shelter, people were able to use E-mail through the laptops there and it was another table where you could go and you could charge -- actually charge your cell phone. >> LAUREL: Now, that's terrific. >> JUNE: That's the newer technology, and there is comfort in that to a degree, but it's only because we had power that it worked so well. >> LAUREL: And also, June, in something like Katrina and Rita where hundreds of thousands of people didn't go to the local shelters. There was nothing to go to and so we knew people who were all over the country and your observation about having an out of town contact was extremely valuable. So that if you were separated from the ones you cared about, you could let the third party know. >> JUNE: You'll call that person out of town and they can say, 36 oh, yeah, so and so is okay. She's at the supermarket at 7th and Elm. >> LAUREL: And it was such a relief for so many people. June, we've got just a few minutes left. I'd like -- we've noticed a lot of -- since all these catastrophes a few years ago especially a lot of new programs are being funded and initiatives are being undertaken. We've noticed with the homeland defense they've got materials and et cetera regarding people with disabilities. Is that -- what's your assessment of these other initiative that is are ongoing? >> JUNE: I think we have to be very careful, like I said last week, we've got to be very -- what's the word -- >> LAUREL: Selective. >> JUNE: Selective about information that's being given to us and also are we part of the planning or are they doing it about us without us? Which is business as usual. And I always worry about that and it's one more thing on our already overloaded, over flowing plate. But if we're not at these tables, it will be done for us and without us. And sometimes it's quite troubling -- the assumptions that are made by people who just don't really have enough information to be prudent and realistic about what the disability experience is and what's really needed. They have a viable, workable, usable, accessible plan in place or whether it's the city, the county, the town, the state, the Red Cross, whatever. >> LAUREL: You know, one program I think we can count on getting it straight I think is the CDC is funding a program on disaster-related issues there at the University of Kansas. I'm not sure where they are in that process. I know it was funded -- the funding began before Rita and 37 Katrina and I'm not sure -- >> JUNE: They've done a lot of interesting research in terms of looking at what emergency managers are taking into account in their planning, but a lot of us are aware of some of the issues that we need to bring to those tables, but again, if we're not there, they get ignored. We just continue to get ignored. >> LAUREL: Well, YOYO, huh? >> JUNE: Presence is everything. >> LAUREL: By the way, one last observation on the training that's needed by people who are doing disaster preparedness and getting the word to them, I certainly think it would be acceptable to request ADA-related disaster preparedness training for the responsibilities of our different organizations involved in disaster preparedness and ask your local DBTAC to take it on. They've got a responsibility -- the ADA is a good place to start. >> JUNE: I think that's true, but with the ADA -- with ADA-related training, it's important to -- well, first note that DOJ has some really good new material on their website in terms of what local jurisdictions' responsibilities are for sheltering and communication access and some other things. Excellent material, but I think if the DBTACs are to take this on, it's also important that they, too, learn a little bit more about how these emergency systems work. Because it's a whole different world with different language and different alphabet soup and it takes some learning to really get what it is they are talking about. It's just not something you dive into and know it. 38 >> LAUREL: That's correct. I tell you the one in the southwest disability technical assistance center is well prepared. Nothing like going through a catastrophe or helping other people like we did here to get you sensitive to the issues that count. >> JUNE: That's how my last statement is before we have to go, you know, like it or not, if you run a disability-related service organization, you will be involved in a response. So I always say plan now or mud will through later. >> LAUREL: June, this has just been terrific. Thank you for giving us this information in this two-part presentation. Perhaps at another time we can go into some of the material in more depth, perhaps in the new year. Will you be willing for that? >> JUNE: I'd like that. I think there is a lot more we can say about ILC, independent living center preparation, and lot more we can say about sheltering and working with your local jurisdictions and workplace preparation. >> LAUREL: Those of you who are in the audience, if you'd like to send us just some notes on what you'd like to have more information on or have on June next's disaster preparedness webcast offer, please let us know. We'd like to know what you want to have covered. At the same time, we have there on the website an evaluation form. We sure would like for you to click on that and fill it out. It's a very quick form. And it gives awe chance both to make observations about not just the presentation, but also about the website, it's usability and navigability and accessibility. You're have welcome to do that. I'm 39 going to close kind of quickly, June. Any last comments from you or did we get it all? >> JUNE: You got it. >> LAUREL: I thought so. Just real quickly, this is a presentation that has been supported with funding from the Rehabilitation Research and Training Center on health and wellness at the Oregon health and sciences university. That's the program that's directed by Gloria krone and her colleagues in Portland. Thanks to their interest in making research information and findings available to those of us who aren't researchers and also to NIDRR for the support on programs like this. Upcoming webcasts, please come back to this page and see what we have in the future. And don't forget about archives. We've got June's other half. There will be this half and others as well. So on behalf of those of us at ILRU, our webcast team of Rob and those of us at ILRU and our webcast team include Rob Dickehuth at Baylor College of Medicine's center for collaborative and interactive technologies. Marie Bryant who is our captioner and first rate captioner she is. Also at ILRU our webcast team includes Marj Gordon, Sharon Finney, who sat in today and did such a good job with questions and rescuing us from a faulty url. Maria del Bosque, Roxie Funchese, Rose Shepherd, Dawn Heinsohn, Marissa Demaya and so thank you all and we'll catch you at our next webcast. Good afternoon.