Disaster Preparation for People with Disabilities Webcast -- May 7, 2003 Presenter: June Isaacson Kailes >> Laurel: Good afternoon. This is Laurel Richards with ILRU in Houston, and we're welcoming you to a presentation today on disaster preparedness with June Kailes. I want to recognize that NIDRR, that's National Institute for Disability and Rehabilitation Research, is sponsoring this series of webcasts, and it's part of NIDRR's initiative to promote use of research findings by those of us who are not researchers but have an extremely high stake in the findings. This particular webcast is a joint production of ILRU in Houston and our colleagues at the Research and Training Center at the University of Kansas, the Research and Training Center on Independent Living, and we operate a program called RIIL, that's R-I-I-L, Research Information for Independent Living. Before we start on the presentation today, just a couple of nuts and bolts on the mechanics. One is as you can see on your screen, the writing that's going on represents the realtime captioning, and it appears in that large box of your Media Player, be it RealPlayer or Media Player or whatever you use. Down at the bottom is a message that says click here to E-mail questions. Now, June is welcoming any questions that you all care to present. We invite you to present them at any time during this presentation. They'll be sent to -- your E-mail program will come up when you click on that line preaddressed to those of us at ILRU and the question will be fielded there and at a certain point June will call for questions and if there are any there, they will be presented at that time. Now, one last point is if at any time you encounter problems with your line, with anything, we've got staff on stand by to provide technical assistance. So if you encounter any problems at all, call us at (713)-520-0232. That's for voice. (713)-520-0232. For those who might want to use the TTY, it's (713)- 520-5136. So today's presentation is disaster preparation for people with disabilities, and we are extremely pleased to be introducing June Kailes. June, we must go back -- I was calculating -- to the early 1980's? Does that sound right to you? >> June: Probably so. >> Laurel: We were both about 14, 15? >> June: I was 10. >> Laurel: At that time June was the Executive Director of Westside Center for Independent Living in Los Angeles. We were always so impressed because she had Abigail Van Buren on her board, and then June, I guess around 89 went into private consulting and you've been doing that ever since I believe, June? >> June: Correct. >> Laurel: Working with a number of organizations around the country for longer or short term periods. I believe, June, you've been involved with research and training centers as well as other disability focus organizations. >> June: Yes, I worked with quite a few of them around health issues and wellness issues and aging and managed care. >> Laurel: Excellent. And right now we'd like to go into this presentation. We've had a high interest in the disaster preparedness, in part because of 9/11, and in part because of just the weird, unusual natural disasters that are happening. So, June, you're going to clarify for us what kind of disasters that we're going to be talking about, but if you don't mind, if we could go straight into the presentation. The most obvious question, of course, is why did you write this guide? >> June: Well, Laurel, you probably know that I've always had this interest in disasters. >> Laurel: It's been an obsession. >> June: As far as back as I can remember. I was intrigued by movies like the towering inferno, the last voyage, the Poseiden Adventure, the Titanic, and on and on. And I figured out that my underlying question was always could people like myself -- could people with disabilities survive these catastrophic events? So I was planning to go to graduate school in California, and I remember watching from New York the television amazed at what they were showing regarding earthquakes. And I thought, well, that's got to be a real unique experience. So after I moved to California, I began to really develop this keen interest in disasters, and I ended up helping to train first responders regarding disability issues. And I began writing on disasters -- disaster preparedness and survival for people with disabilities and among the many publications, two of them got a lot of attention. One of they will was living and lasting on shaky ground, and that was An Earthquake Preparedness Guide for People with Disabilities and it took me as a long time as a person with cerebral palsy to realize that it wasn't me who was shaking, it was the ground. The first couple earthquakes I actually missed because I thought it was me. The second publication that's gotten a lot of attention internationally is creating a disaster resist contestant infrastructure for people at risk, including people with disabilities, and that's been used and published in both Japan and Turkey. I've taken some Red Cross courses on disaster management, shelter management, mass feeding and damage assessment, and I worked with FEMA on revising their course on disabilities issues. I did some disaster preparedness work as well on site in both Japan and Turkey. You know, Laurel, I think we've talked about this before, but actually on 9/11 I was in D. V. in a meeting with the FAA, the federal aviation administration and we were meeting on ways to better enforce the air carriers access act of 1986 for people with disabilities. And all of the air carriers were in this meeting, united, southwest, all of them. Well, needless to say, that meeting never really began and we were on the third floor of a federal building, and we're hearing all kinds of rumors about what was happening out there on the streets, and we all decided that we better get out of there before they shut down the elevators. And that whole experience struck me. I was really amazed by what I saw in terms of people's behaviors when they got on the streets and into the Metro in Washington. And it actually took me six days until I actually got back to Los Angeles. But you know, I, like many other people, wanted to do something, wanted to make some kind of meaningful contribution after 9/11, and much of what I had done in the past could be applied to evacuation preparedness. So along with the center on disability issues and health professions, we raised some money and actually produced the guide on emergency evacuation preparedness taking responsibility for your safety. Actually, Laurel, today my goal for this webcast is to make the audience aware of the guide, its contents and value to them, to their peers, colleagues and those people that they work with. And ask the audience for their help in widely disseminating the guide. >> Laurel: June, could you tell us just a little bit about the organization for whom you wrote this and why they -- why they were interested in investing in this? >> June: Well, you know, I always am talking about disaster preparedness, so I think I pushed and they were quite receptive and thought that this was an extremely critical issue at the time and one that wasn't getting a lot of attention, and so they -- the center decided to work with me and we went out looking for funding and the Bank of America Foundation said, you know, we think it's important. Go ahead, we'll give you some funding to research it and write it. >> Laurel: It's really a remarkable commitment, both in terms of the time that -- the investment of time and I'm sure it took quite a bit even to just write the document and then distributing it online is just a tremendous contribution. So good for you and good for the organization. Tell me, now, June, for whom is this guide written? >> June: Well, the guide is really for a lot larger group than you actually might think. What we found is that there are a much broader group of people that are affected by emergencies and typically we think of -- when we think of just the reflex. So this guide is actually for a broad group, including people with any kind of limitations that interferes with their walking, using stairs, people with any kind of reduced stamina, fatigue or just tire easily, whether it's due to a temporary or permanent condition, people with respiratory issues like asthma or emphysema or heart conditions, conditions that are triggered by stress or exertion or exposure to dust, people with emotional, cognitive, or learning difficulties, people who might become confused when dealing with unfamiliar and unusual kinds of activities during emergencies or lose their sense of direction or may need emergency directions explained in simpler or more straightforward or basic concepts, people with vision or hearing loss, people with temporary kinds of conditions due to surgery or cancer or accidents or injuries or pregnancy, and then of course people who rely on technology or medications which may not work during emergencies, like hearing aids, motorized wheelchairs, people who depend on lighting or sounds or use of elevators. So we're talking about actually a very broad group, Laurel, and people don't always think about that this broadly. We heard reports from those who actually successful evacuate the towers in New York and they talked of passing up people who just couldn't keep up, people with limited endurance, and a lot of people had no apparent disability, but never the less, they were really struggling to negotiate the steps, and what we learned from that was that there were a lot of people who did not identify as having a disability or felt they qualified for needing any kind of specific assistance during an emergency, but later on they had wished that they had self-identified ahead of time as needing some help. >> Laurel: That is a huge -- a large group of people that, you're right, we don't often think of. You know, I never think of pregnant women, but naturally, yuck, it would be. There have been a number of -- not just since 9/11, but time before, a number of guides for preparing for disaster evacuations, many of which included sections on people with disabilities. Does this cover different matters than those do? >> June: Well, you know, there are a lot of guides out there and a lot of them are reflected in the resource section that's part of our handouts, but I think this guide really is different in about four ways from some -- many of the other guides that are out there. And those four ways are that it's not as general as the other publications out there. It's much more -- it has a lot more specificity and detail with a cross disabilities perspective that is really specifically reflected in many of the guide's checklist. It's written from the disability experience and reviewed by people with a variety of disabilities who also have a cross disability experience. It's also not written from the standpoint of what people could do for us. It's written in terms of what we can do for ourselves. And I guess the other part is that it's different in how we're disseminating it. We tried to make it easy to get it into the hands of people with disabilities. And actually I'd like the listeners' help in giving this guide the widest possible circulation. So in the handouts, under section called hot new resources for people with disabilities, you'll not only find the link to the guide, but you'll find four articles that you're free to use and reprint and they are four articles varying in length from short to long or varying in word length from 142 words to 2700 words. They can be used for newsletters or listservs or websites. And again, you're free to reprint those in their entirety. The guide itself is available by link. It's available in word, in HTML and in PDF so you can freely copy it, reprint it, distribute it and we tried to make it as easy as possible. >> Laurel: That's excellent. >> June: I mentioned the guide was funded in terms of the writing and research, but in terms of dissemination, it was made possible in part through some help from the Christopher Reeve Foundation. >> Laurel: So you're telling folks is that the guide is available at no cost via the website and that they can use it -- feel free to use it and distribute it as far as and as wide as possible that they can use these articles to adapt for their newsletters. Are you asking folks to just acknowledge the source of the document if they use it? >> June: Yes, and that's all kind of -- it's all integrated into the article itself. And people can -- some people love hard copies of things that are bound and that's also available and it says how to obtain the guide if you need a hard bound copy, but there is a cost for that and the guide costs 24 dollars and that's including everything, postage, handling and taxes and the handouts tell you how to get a hard copy as well. >> Laurel: Let's get down to practical stuff, June. What exactly is covered in the guide? >> June: Well, this guide covers -- really focuses on people with disabilities and activity limitations successfully evacuating buildings. Its goal is to help people really strengthen their evacuation preparedness. It doesn't address, Laurel, the kind of evacuations that sometimes occur and are needed in response to hurricanes or flood warnings where you're evacuating geographic areas. This is more from a facility-based evacuation stance and it covers such things as taking responsibility for your own safety, getting involved in the planning process, how to create, review and practice plans, what's important to carry with you in terms of emergency health information, how to realistically evaluate your needs, how to give first responders quick and critical information about how they can assist you without causing any injury or harm, how to put together a network of people who will check with you in an emergency and give you assistance if needed, and how to evaluate your own abilities, preparedness, limitations, needs and your surroundings to really determine what specific help you might need. And that's what I call an ability self-assessment and that's really broken out into different kinds of limitations, like sight, hearing, deaf/blind, speech, memory, judgment, learning and information processing as one break out area, mobility, allergies or chemical sensitivities, and people who use assistive devices. And also what do you need to think about if you are evacuating a site after regular business hours when there aren't as many people around, what are some of the issues there. How to determine your evacuation options and prioritizing that, things like being carried or using an evacuation chair or using areas of refuge or rescue assistance or using elevators, which you cannot do -- mostly you cannot do. And then there is a reference in the resource section, and I think what's valuable in that section is all of the resources for evacuation devices. There is a section on disability-related issues for emergency plan coordinators, and there is a section on how to complete -- actually how to compile and complete your own emergency health information, it's kind of like a template. And the last part is just a feedback questionnaire so people can tell us what they think of the guide and they can send that in and postage is already paid. >> Laurel: And you're sincere in wanting feedback, are you not? >> June: Right. We're always learning and this guide will be revised many times. So, yes, we're much appreciative of any kind of feedback. >> Laurel: And I presume that if folks have encountered other resources that might be applicable, they should just haden I know you collect everything. >> June: I do, and I try and make it available by way of my website that's also listed in your handout section. It has a variety of resources for people with disabilities, coping with a variety of disasters. >> Laurel: Excellent. >> Rachel: June, this is Rachel. I'm the question asker for today, and we did get one E-mail question that might fit in nicely to what you're talking about right now, looking for some feedback and future development of the guide. This comes from someone who is particularly concerned about accessible transportation being available in the case of an emergency, and she says that in state transportation, maybe different departments should meet and come up with a strategic plan, but she really wants to know, you know, where will the transportation come from? She has some ideas of cars, buses, taxis, national guard, but she hasn't heard much about transportation discuss in the detail and wanted to know if you know something or if that's an area you could pursue? >> June: Well, if people are injured and hurt, the transportation comes from the first responders, the emergency vehicles often, but sometimes there aren't enough of those, and it really is -- depends on the kind of disaster we're talking about, but I think one thing we've learned about disaster preparedness for government entities, cities, towns, regions, states, is that they have to begin to rely on and contract with disability organizations who are closer to being able to come up with resources for accessible transportation and have agreements with these entities ahead of time so they can muster these resources quickly when needed. That's a whole other conversation in terms of jurisdictional preparedness and working with community-based organizations. >> Laurel: Maybe we can explore that at another time. >> June: I would love to. >> Laurel: That is hugely important and I'm sure there are a number of centers that have taken steps to provide that service to their communities, but it would be great to know more about that. So, June, let's put down in your calendar -- we'll schedule one during the next several months if we may. >> June: Sure. That would be great. >> Laurel: Let's get back. Now, it sounds to me like from your description of the guide and the different sections that it's truly meant to be the disable person's -- himself or herself -- it's centered on that person that's a do it yourself program as the way you present it. >> June: Yeah, I think if I could articulate what the most important message of the guide is, that would be that I think 9/11 was just one more wake up call for us, and no matter what the laws say and public policy says, it's really up to us to individually and collectively prepare and to make our needs known. And if we just rely on employers or building managers or fire inspectors to make sure things are in place, you know, it may or may not happen. And it's really not safe to assume that we've been included in these plans and we have to be assertive to ensure that our safety needs are included, and we need to be aware of the risks we face. >> Laurel: Yes. >> June: And we need to take responsibility and be proactive and rely as much and as possible on ourself and not assume that it's been done. We need to know what -- where the exits are, what our options are, put together our own personal support network, and I think we need to avoid avoidance. We need to avoid not thinking about it. Unfortunately, Laurel, what I've learned over the years is that these wake up calls -- and they happen whenever there is a disaster, a major flood or major earthquake or major fire is that they only have a shelf life of about six to twelve months. >> Laurel: Really? >> June: And then people begin to slip back into the old ways, complacency, the denial mode, that's ignoring the threat and avoiding thinking about it because it's stressful and who wants to think about something that causes stress and fear and apprehension? You know, I heard -- or I read about one person that I think is -- this quote about him really, I think, says it all. That if you just rely on an employer or a building manager to make sure things are in place, it very well may not happen. And this guy, Paul, who is a contractor for Ford Motor Company, his office had a fire drill, and he is a quadriplegic. He works on the second floor, and he said it was the first fire drill in the 18 months since he had worked there, and when the alarm went off, he went to the elevator where there was a designated fire warden, and they seemed to be surprised to see him. He said he had never been told about the building's evacuation plan, and to quote him, he said, you know, my confidence was not exactly inspired. I was a little surprised. I thought Ford would have a little better control over the situation. I'm hoping that there is at least a little more -- I'm hoping that they're at least a little more aware of the fact that I'm here and working on their second floor. I don't know if it's something they just don't think about or everybody just is so stressed out with their other nonsense that they don't have time to deal with it. As a quad, I do not go downstairs period. I don't have the balance for it, and it's a little disturbing. So, Laurel, my message is don't let this happen to you. I think -- I know that in planning four your life safety in emergencies, hope doesn't count for much and you have to make sure you're included in the decisions on which equipment and which procedures will work for you. And given today's different world and current expanding disaster possibilities, you know, a quick evaluation is more critical than ever. >> Laurel: You know, that's -- what you're saying is, you know, it gets to the essence of independent living. That is, it's the person's responsibility to -- >> June: Right. >> Laurel: -- to make things work and reliance on others is -- you know, is just -- with disaster stuff is just madness. June, when you talk about the shelf life -- and that's real interesting. I know that's true in my case, that you get a sense of heightened awareness and then as things float back to normal, but from what I understand, especially about the checklist, some of this is like prep work -- not quite one time prep work, but doing it once and being real clear, it sort of lays the foundation for quite a while. For instance, the checklist on setting up a buddy system. >> June: Right. Right. Only we call it a personal support system because the buddy system concept is a little outdated. >> Laurel: Oh. You mean you don't have to be friendly? >> June: Well, no, not -- not exactly. Not exactly friendly, but the issue is that, you know, when you just rely on one person, that person may not actually be around when you need them. The working environment doesn't always work that way. You know, to really be ee effective in establishing a personal support network, you should really talk to a lot of different people. In a lot of situations it's really unrealistic to depend on one person. They may be on vacation, they may be in a different work area. Who knows? The guide recommends is that people work out support relationships with several people and to identify a minimum of at least three people at each location where you typically spend a significant part of your week, whether it's on the job or at home or at school or at a volunteer site. And to really work with those people in terms of explaining exactly what you will need and do some planning with them. You know, people often choose who they like in terms of their network, and sometimes those are not typically the people who might be most helpful. You might need somebody that has a certain kind of physical build, you know, that could lift or may -- you may need somebody who is very even and won't get overly emotional during a time of high anxiety. So it's really important to choose people who are dependable and have the physical and emotional kind of abilities that you'll really need. >> Laurel: Good advice. Do you want to see if we have any other questions at this time? >> June: Sure do. >> Rachel: Okay, actually you guys have been answering some of the questions along the way. I have one that you haven't addressed yet, which is what are the most effective ways of notifying people with visual disabilities as well as the elderly of a disaster? How to notify people of a disaster and they were specifically interested in people with visual disabilities as well as the elderly. >> June: Okay, well, in terms of people with any kind of vision loss, I think the questions that need to be asked by the individual are things like will you be able to evacuate independently without relying on the usual kinds of auditory clues? Such as like the hum of a machine that is located near the steps. These kind of sound clues or lighting clues will be absent if the electricity goes off or if alarms are blaring away. Can you read emergency signage? Are there raised or Braille characters on signs that designate the exits or directions to the exits and information on the exit routes and designated floor numbers that you can read? Is there emergency lighting in the stairwells and is that lighting going to be enough for you to use. This is something people often don't think of, if you wear contact lenses, what will you do when the place is full of smoke and dust or fumes that are painful or dangerous? Do you keep a pair of glasses with you? Can you use the two way communication device installed in areas of rescue assistance or areas of safe refuge and have you instructed your own personal support network how to act as a sighted guide if needed? So those are just some things that kind of relate to people with visual limitations. >> Rachel: Okay, I just got a couple more questions in. One of them comes from somebody who is with an independent living center, and they're asking, in addition to dissemination of materials and information, what should be the role of the independent living centers towards emergency preparedness? >> June: Well, I'm going to give you a short answer to that because I think we should devote a whole other call to that because that is a big topic. But I think the role is that centers have to plan for their response to a disaster. For example, there are centers who have had to be responders after earthquakes, after floods in Minnesota, after hurricanes in Miami, after the twin tower -- after 9/11 in New York City. So centers not only have to have their own evacuation plans and their own disaster plans, but they have to have pre-thought out the mode they would go into as responders after a disaster in terms of supporting the people they work with. And that involves not only an internal plan, but working with the city or town jurisdiction, and working with other disaster response organizations and having in place memorandums of understanding about what you will do and what other organizations will do. Because independent living centers and other disability- related organizations are really in the trenches, and they're the ones that are most current and most able to get out to people in their community because they know them and they have relationships with them. So that's a very brief, not great response, but we really need a good hour to talk about that. >> Laurel: Tune in next week, huh? >> Rachel: Okay, I have two other questions. One is simply how does the planning actually take place for people with disabilities? >> June: Well, typically, buildings do have disaster plans. So I think the first thing that one would do would be to ask where is the plan? How often does it get reviewed? And if it doesn't exist, to work with a designated group to put one in place, but if it does exist, to really carefully review it. You know, are the needs of people with disabilities integrated into that plan? And if not, to start a process to do so. And then of course the plans have to be reviewed. They have to be practiced. There has to be drills. And after the drills, they have to be revised and refined, what works, what doesn't work, what needs to be rethought. In is a lot involved in putting a good plan together. >> Rachel: Okay, great. I'm also getting a request to please review how people can find a copy of the guide. >> June: Okay. Sure. On the ILRU website, which you were given a link to in order to sign onto this webcast, there are handouts, and in the handouts there are -- there is a link to the WWW.CDIHP.org, that website, and from there, you can get the guide in PDF, or in a Word document or it's also on line in HTML. And if all that fails, you can E-mail me and I'll help you out from there. And my E-mail is jik@jik.com. >> Rachel: All right, great. Okay, I've just got a couple more questions in. Would you like to take them now or would you like to let me know when you're ready for more questions? >> June: Sure, sure. Go ahead. >> Rachel: Okay, this comes from someone in Arizona. They say that they are c*il bing has a subcommittee that's in the process of addressing emergency preparation and response, several fire chiefs from around the state are on the committee. The fire department has arranged with the local schools to use school buses with lifts in times of emergency -- actually just a comment. They have included in it their training and it works well. So I guess this is an example of something that's working well that the listener wanted to share with other people. >> June: And that's a good example of the memorandums of understanding that I was referring to before. >> Rachel: Okay, great. This last one is a question. They want to know are you aware of any existing curriculum or training modules for EMS, police, and or fire departments on evacuating people with disabilities? >> June: Actually, we have one available, and that's one of our next projects. I have -- we have a training program that we've developed for first responders, and it's really a kit that we're finishing up, but we've used it in training and it involves PowerPoint slides and handouts and exercises which basically provides an orientation to help first responders develop awareness and sensitivity and knowledge and skills needed to effectively help people with disabilities in emergency planning and evacuation. So it covers things like people with disabilities broadly and how you work with groups to help them understand the importance of self-identifying as needing assistance before an emergency. It covers language issues and it covers some best practice issues in terms of assisting people with vision or hearing or mobility limitations or cognitive, intellectual or psychiatric disabilities. And there are some specific issues also in the training related to what's involved if you need to carry somebody with a disability, and lastly, in a lot of fire departments, they go out and review plans for organizations. So it urges them to ensure that folks with disabilities are included in the planning process and in the plans. So I know that one does exist, and if you E-mail me, I also know some other groups around the country who do this kind of training. So actually what I've just described is something we want to get out -- we want to get out and finish out. We need to get some funding for it to get those kits together and make them available. >> Rachel: And actually, June, if you have some additional resources, we can go ahead and post them on the web page that -- for your webcast and that page will be archived so people can go back and either read the transcript or listen to the webcast again. >> June: That's a great service y'all offer. And I think what I'll do is I'll keep updating the website I have on disasters and in the handout there is a link to that. So you can always go back there and see what's new so that will be away of keeping current. >> Rachel: Okay, those are all the questions I have for now. So let me turn it back to you guys. >> Laurel: June, to give you an example of a situation and how it would be handled, let's say I'm taking a position with a very large company and I have -- let's say I have work in the secretarial pool and I am one of thousands, but I have a severe physical disability, and I'm a little bit new, I'm green, I'm not what I'd call an aggressive person anyway, what is somebody like me going to do in regard to insisting on seeing the disaster plan or calling the fire department to let them know that I'm there? I'm a little bit uneasy with that kind of approach. So what would you advise in that setting? >> June: Well, I think that some of it, Laurel, is it is your life safety, and again, you have to take responsibility for that. So being shy or receipt sent is not going to help you be safe. So it's important that you ask, and you don't have to be aggressive about it, but is there a plan? Do you have fire drills here or do you have evacuation drills here? How often? If there is a plan, are people with disabilities included in that plan? One way you could maybe find out is to talk to -- if it's a big place -- there have got to be other people with disabilities working there as well. You might want to get a few people together and ask them and if they don't know the question, and somebody in that group is bound to be -- have some good assertion skills and can bring it up to the risk managers and start a dialogue and make progress in terms of looking at the plan and going from there. Does that answer your question? >> Laurel: I think it does. Let me ask you this: If it's a fair sized company, would the human -- would the personnel department, the human resources department be the first place of query? Or would one go to a supervisor? >> June: Well, if it's a big place, you know, it depends. If there are multiple buildings, that's different. If there is one building, there has got to be risk managers that are in place and it's a matter -- there are different labels. So it's a matter of really asking -- asking the questions. In major buildings, there are security people in buildings that often keep lists of people who will need specific kind of assistance during an evacuation. So it's important to make sure that you're on that list and backing up before that, it's important to make sure that list even exists. >> Laurel: Yeah. >> June: So -- >> Laurel: Good advice. >> June: So you've got to really speak up and if it's not there, there is some work for you to do and it's important to try to get over the shyness because, you know, it's your life. >> Laurel: Yeah, that's excellent advice. What about the guide itself? Anything in there that is surprising? Would controversial be the word? >> June: Well, I guess -- I don't know. I think maybe there are two issues that could be controversial. One would be working -- some of the issues about working with fire departments, and the other issue is whether to wait or not wait for assistance. I think what we've found is that some police and fire departments personnel are really experienced and knowledgeable about disability- related evacuation and access issues, and others aren't. And you kind of learn that when you have discussions with them and so discussions are important because approaches can vary, and what I've seen is that there are a couple of big issues. One is whether people should remain in the building and where provided, assemble in areas of refuge and wait for the arrival of firefighters to get help during an va evacuation. Now, a lot of people with disabilities would tell you, hunh- uh, I ain't waiting. I'm not waiting. They may never come. They may be too slow. I may not survive. You know, those are some individual decisions that need to be made, but there are fire departments that say the best thing for you to do is wait. And again, it's an individual decision, but in making that decision, you've got to have a plan about what you are going to do if you're not going to wait. It's either using a support network, in terms of using an evacuation chair, and actually, Laurel, evacuation chairs are one of the other areas of some controversy, believe it or not. >> Laurel: How is that? >> June: They have in some fire departments mistakenly believe they jam up the stairwells and that they should not be used and this is really not the case and it's been proven actually by one company that people operating what they call the Evac Chair, that people can keep up with people without disabilities. >> Laurel: Really? >> June: And that people can walk alongside the evacuation chair as well, so it does not block the stairwell and that people can maintain a good rate of descent. You know, and another controversial issue I've heard about, and this was somewhat surprising to me is that there were examples of fire departments instructing that people leave their service animals behind or that they separate them from their owner. >> Laurel: Really? >> June: And again, why would that be necessary? In the 9/11 experience, there was actually a guy named Michael who was working in the north tower, and he actually evacuated from the 78th floor with his service dog. He's blind. He relied on his own instincts and the dog and his support network. And he made it out safely. You know, he says, and quote, I feel like I was prepared as possible. I knew the evacuation procedures. I attended all the building fire drills. I knew the exit routes. So when the a tracks hit, I had a sense of preparedness, self-sufficiency, and the confidence to take a leading position in evacuating myself and others to safety. So that's -- those have been some of the real issues of debate. You know, again, to remain or to evacuate, and there are pro and con issues in the guide related to if you're going to be carried in or out of your wheelchair, what are the pros, what are the cons? What are the pros and cons of using an evacuation chair? What are the pros and cons of using an area of rescue assistance? And what are the pros and cons of being in a building where there are sprinklers and moving out of the area where the sprinklers have gone off? And there is also some discussion about is there ever a time where you could safely use an elevator? >> Laurel: Yeah. June, I suspect there are large numbers of people like us at ILRU where for the first time in our 25 year history, we've lived about the last eight or ten years on the 10th floor. We've also been on the first floor. And the advice of the fire department for the folks who use wheelchairs is to stay put near the exit door. It's been disconcerting in going off and leaving your workmates during drills. The issues of pros and cons I have not seen laid out and I'm looking forward to seeing this aspect of the guide because it's a very uneasy disconcerting feeling. >> June: Well, Laurel, I think that's a really good example, and I think that there are many folks with disabilities who are not going to remain on the 10th floor while everybody else evacuates and they put plans together to ensure that that's not the case. I think that the Access Board is also on the 10th floor of a 10 story building in Washington, D.C., and they have a very good plan in place, and actually they have put their plan on their website. And I actually link to it from my page. So that's a good example of the kind of plan that has been put together by an office that has a large number of people with disabilities working on the 10th floor. And they purchased a number of evacuation chairs. They practiced using them. They've had drills. They've negotiate with their building managers in terms of how things are going to take place. They've gotten walkie-talkies so they can communicate directly with the building managers in terms of an emergency, and they've put a lot of planning together so that nobody has to stay up there. >> Laurel: Now, we've done all of that except I love the idea of a walkie- talkie. >> June: And that relates to really sitting down with building management and saying, you know, let's talk very specifically about the plan here, we really want to understand every detail of your response and your planning. And the other piece is to make sure that the fire department knows where you are and also that you take responsibility for giving them a list of people so they know who is there. Again, there is no guarantee that they're going to get to you, but it's one more part of the plan. >> Laurel: That's excellent. >> Rachel: Kind of along those lines -- this is Rachel -- I can tell people out there that at ILRU we did purchase EVAC chairs and we were all terrified of them and very skeptical. That includes the people -- able-bodied people as well as we have a number of people here who use wheelchairs and have different levels of disability, and we've spent time practicing using them, and we were all petrified. No one wanted to go first. No one even wanted to go second. But after practicing it, it's not as hard as you think it will be and I think it was a huge relief to all of us, and different -- the people who use wheelchairs have made different decisions about if and when they would use the chairs, but you know, we all have a much better sense of what it's actually like. So I would recommend that people actually try them or go someplace, if you can, to try them out because they're not as scary as they seem at first glance. >> June: I think that's a really important comment, Rachel, and the underlying learning point is to use them and practice with them. You know, there are chairs that will only go downstairs and not upstairs. And there are chairs that are more easy to transfer into than others. And there are some evacuation chairs that really do take practice. And if you don't practice, you may not have a clue what to do in an emergency and that means that selecting these chairs -- all of those things have to be taken into account. For example, I spoke to a colleague the other day where it's a very transient audience, their classroom. And in that case, you're not going to have the same people there at any one time. So the evacuation chairs need to be extremely simple and light and possibly used by people who have never used it before. That means you're going to pick one chair over another where the kind of practice may not be quite as important as with some of the other chairs. So there is an art to picking these chairs as well. It's not just I'll pick anyone. They're all different. Many of them are listed in the resource section of the guide, and their U. R. L.'s are listed as well. So even that, selecting chairs and practicing is something that needs more attention than you would first think. The nature of your stairway -- if the stairways are old, are you going to make -- are you going to be able to make the turn with the evacuation chair from one level to another. Some of the older stairwells are very narrow. >> Laurel: I think the comment Rachel made about how after all this work we were much more confident about it. It gets back, June, to what you describe is the purpose of the guide. It's amazing that once you do the homework and you have the plan laid out and have thought it through, the sense of comfort is -- I didn't expect it to be as high as it is. >> June: You know, there are three kinds of drills and they're all important. One is the walk through procedure where you actually walk through, talk about it, and practice. And then there is the announced drill, you know, where they say, okay, Friday at 2 we're having a fire drill. And don't stay away that day. We want you here. You know, and then there is a surprise drill and I think what's good about the walk through is that it gives you time to really discuss parts of the plan and particular individuals that need more extensive practice and talk about what needs to get done in terms of transferring in and out of chairs. Practice that, practice carrying techniques. You know, some people have chosen to bounce down stairways, you know, on their butts and that's okay, but they have to know they can do it. So it's time to discuss it, walk through it, practice it. And then of course the announced drills are also important tools, and the surprise drill is recommended that you do those at least two or three times a year. And both the announced and surprise drills -- I think the important part of those is that you always have like -- that you evaluate them afterwards and that you refine and you revise your plan accordingly or that you note areas that are weak and really need attention and then you go back to the walk through part and you discuss them at staff meetings or whatever. So that all of this becomes a fabric of the organization and it's not just something you have to do in order to get accredited or get a license or be able to bill rehab for something. >> Laurel: June, that's excellent. Just what would you recommend in terms -- you said a couple of times a year or walk through -- what is the frequency you recommend? >> June: Well, the surprise drills, at least two or three times a year. The announced drills, you know, it would be up to you, but I think the walk through drills are where you really go through the process of how you get through all the exits, and you practice those, and you look for safety hazards, and you practice using the fire ex twinge wishers and you practice where they're kept and where the evacuation chairs are stored and how easy or hard it is to get them out of where they are stored. You know, actually, there was a story of I think one person in the towers in New York where they did escape, but actually she was a wheelchair user, and she panicked, and the two secretaries had to remind her that the evacuation chair was under her desk, and she had forgot about it. And there hadn't been a lot of practice, a lot of drills. >> Laurel: Bless their hearts. The secretaries staying alert. >> June: You know, and the walk through is the time where you can really reach your support network how to operate your equipment or how to disengage the gears of a power chair or it's a time when hard of hearing and deaf folks can practice having co-workers communicating and imparting information to them through gestures, especially if they don't know sign, that is, if the co-workers don't know sign. It's a time when service animals should always be put through the drills and any concerns should be discussed there as well. >> Rachel: I really like your idea, June, of sort of being mindful as you pick your support network of who will be calm in a panicky situation ber and we probably know from working with people who reacts in what way. Who starts to hyperventilate and who gets ultracalm and so I think that's really important and something that we really hadn't thought about. >> June: Yeah, you know, I think that's an excellent -- that's good underlying on the point, but you know, Rachel, the other issue is that no matter how vigilant you are and how well you put together a support network, there will be a time when they aren't around. >> Laurel: Right. >> June: And you'll have to immediately establish a rapport with a new person, which means there is actually another part in the guide that talks about how to give information quickly and succinctly about the kind of hell you'll need. >> Laurel: That's excellent. >> June: No matter how hard or how well we put together our support network, we still may find ourselves giving directions to strangers on the spot. And that needs practice as well. >> Laurel: June, in a lot of organizations -- in fact, I don't know any that don't have folks who are working very, very late or they work on weekends or they work, you know, in the off hours and I would think they can be especially vulnerable. And weekends in office buildings is when there are not many people anyway, does the guide cover situations such as that? >> June: Yes, it does talk specifically about if you're that kind of person to really think about what the risks are because there are things you can do, you know, in big buildings there are still security people there sometimes on the weekends, and you can make yourself -- make them aware that you're in the building. That you're on the 10th floor and actually discuss what to do in case of an emergency, but the reality is beyond regular hours people are at greater risk. So it's a risk you can choose to take. It's a risk that you can make sometimes less by putting in place some precautions, but, yes, it's always an issue. >> Rachel: I've got a question in that's on a different topic. It's related to the topic, but taking a slightly different path. Can I pose that one to you at this point? >> June: I don't know. You might as well try. >> Rachel: The question is what are the confidentiality and legal issues around people developing their person support plans? >> Laurel: How interesting? >> Rachel: And I've actually gotten this question on our ADA hotline before, too. >> June: Well, I'm not going to give you the legal. I'm not a lawyer, but again, this is life safety, and there should be -- and you can underline the need for continued confidentiality in terms of a list or in terms of the emergency fore wardens, but this is weighing disclosure versus life safety. And there are some confidentiality issues that can probably never be as iron clad as you would like them to be, but on the other hand, you've got to weigh what the results may be of not identifying. I think the list can be carefully guarded and stored in secure areas, but there is always somewhat of a risk. >> Laurel: Yeah. That's a tough one, June. >> June: It is tough, but again, is your life worth the risk? >> Laurel: Yeah. You've got to -- I guess part of what you're saying is you have to have the mind set of life and death and what matters is life. >> June: Yeah. It comes up in a different way in terms of when you travel. You know, it's recommended that people who have difficulty with stairs and evacuating when, for example, they check into a hotel, they think about this. And sometimes I have to weigh myself the choice between a good view or being able to get out of there in an emergency. And the other thing that's recommended is that you self-identify yourself to the people at the front desk and say in case of an emergency, I will need assistance evacuating, and what do you have in place? What's the plan here? >> Laurel: That's good. How far in advance would you do that? >> June: Me? Well, I would do it when I check in. I mean, otherwise -- >> Laurel: If you're going to a conference and it's been planned and you're going to be staying a week or so, do you do that in advance or are you perfectly comfortable with at the time? >> June: Well, I personally would do it at the time. However, if I were the conference planner, and let's say there were going to be a significant number of people with disabilities at the conference, for example, at the NCIL conference, I would sure meet with those security people ahead of time and say, okay, what's the plan? Let's let the fire department know and let's talk about the plan. What are the procedures and what do we need to know? I'm not sure we've ever done that but it should be done. Maybe NCIL has done that, I don't know. It would be a great question. I know there have been issues when fire alarms have gone off at the SHHH conference, the Self Help for the Hard of Hearing, and it was a nightmare. >> Laurel: Oh, my gosh, I bet it was. That's extraordinary. June, you travel a lot. When you go to a hotel and how do you check for sprinklers before you check in if it's a sprinkled hotel? >> June: I don't. You know, hotels -- you can see in your room, if you can see, you can see if there are sprinklers or not. It's very apparent. They're very visible in the room. >> Laurel: What do you do if it's not? You look it and it's just not? >> June: And many aren't, and you know, actually, Laurel, this is a personal thing; but sprinklers don't give me that great a sense of -- I mean, I know they're well thought of, but sprinklers don't necessarily protect me from the smoke. They must put the flame out but I still have to deal with the smoke. I still want to get the heck out of there. >> Rachel: June, I've got another question in. I bet you can guess who this came from. The question is are there any materials that you've compiled that are applicable to disabled women in emergency situations that arise from domestic violence? >> Laurel: Oh, dear. >> June: No. I mean, I haven't -- I don't have any, but I bet the person who asked the question may know of some. >> Rachel: We invite that mystery person to E-mail in if you have any of those resources to share. >> June: Maybe you could post them on the message board that goes along with this conference call because that's a very important question that needs -- people need to know the answer. >> Laurel: You know, June, we've received numerous recommendations and other resource materials or studies related to disaster preparedness, and for instance, we got a marvelous note from Anita English with the Texas governor's commission -- the governor's committee on people with disabilities. They had conducted a study, a survey last year, and they have -- they're allowing us to put on our message board the link to that article. In fact, I think they sent us the article as well. Very interesting, the results of their findings. So we will be posting the information from Anita -- Angela English as well as others who have sent us stuff, including if this individual probably based in Houston has anything. >> June: Let me just put a caveat on that. That was a survey of emergency preparedness planning efforts of people with disabilities in Texas and it was a survey that was -- that the Texas governor's committee sent out 13 questions to cities in Texas that have emergency management programs and they got 189 responses back. And I guess in looking over the data, and people can look it over when you post it, it wasn't all that comforting to me. It left me pretty unsettled. >> Laurel: I think -- >> June: You know, one of the questions that was asked which really bothered me was they asked a question about does shelter management training issues include such things as providing access, getting into the shelter? You know, I've taken some of those training classes, and I took them on purpose, and I was shocked in that several of them -- you know what the training was in terms of access was there was one question before they open up a shelter, and the question was is the site accessible? Now, you know, it depends on who you ask the question to and their knowledge base to begin with. If that were me, who spent eight years on the Access Board, is going to come up with a 35 page survey, but on the other hand, somebody who has very limited knowledge of access, might say, oh, yes, there is only one step and won't even look at the bathrooms or the showers or the cots or any of that kind of thing. So I think this is a really good start, but it is a good jumping off place. >> Laurel: Good. June, so we don't run out of time. How do we apply some of this stuff you're talking about to our homes? >> June: Well, I think it's really important to have a plan in place for your family, an evacuation plan in terms of exiting your home because the reality is that often the greater number of fatalities and accidents actually occur in the home. People are more likely to die in fires at home than at work. And the risk of course is even greater for us, people with disabilities, particularly people who live in high rise buildings. You know, in the work setting, the high rise buildings often have better built in technology gained safety features than houses or apartments. So and it's really important in homes that you do the basics, you know, like smoke alarms and changing the batteries and all that, but also that you know of every way you can get out of your home and whether you can do it independently or not. And if you can't, what's your support network like at home? And ask the same kind of questions and the thing about the home environment is that it brings up the importance of something we och ten forget about in terms of disaster preparedness which is the emergency -- the neighborhood watch organizations can be a great backup in terms of support networks if they're active, but often they're not. So everything that applies to work or school applies in your home as well. >> Laurel: The level of intensity or how much -- in terms of what we need to devote to becoming prepared -- that's not quite the right question. What kind of effort should I, individually, put into becoming prepared, the extent to which? >> June: Well, you know, there is no one answer to that. The reality is that this stuff does take work. It does take time. It does take effort, but if you can partialize it, if you can do it incrementally, the important thing is to start and do something. And the more you do, the more confident you are and the more you're able to protect yourself. And you know, that's what's important. Do something. Do a little rather than doing nothing. >> Laurel: In your guide book, does it present stuff in a logical sequence of activities? This is the most important? This is the next important? >> June: I'm not sure it was written quite that way because everybody's situation is so specific that that's something that people need to customize and tailor to their own setting. There are lots of people, Laurel bing where you don't need this and with a little bit of prethinking and preparation, they can exit -- they can evacuate as quickly as many other people of the some need this and some don't. >> Laurel: Got you. >> June: We who need it know who we are, hopefully, and again one of the things the guide does is kind of remind you of the people and who you are, who you think you may not need it, but after reading it, you might want to think again. >> Laurel: Oh, yeah. >> Rachel: I just got two questions in. One is a comment and one is a question. Can I go ahead and share them real quickly? >> June: Go ahead. >> Rachel: One comment is that someone wanted to let us know is that they found facilitators or trainers from the American Red Cross to do some emergency training for them. They just wanted to share that. And that from your mystery questioner before who had the question related to people who are victims of domestic violence, she says, June, you were supposed to say yes because any advice on how to protect yourself in emergency situations applies to women with disabilities. And she will forward on some information on safety planning that's specific to domestic violence so that you can go ahead an post that on your website. >> June: That's great. All ki say is bad June. Bad June. >> Rachel: Okay, here is another question about confidentiality. This comes from someone at an independent living center, and she wants to know how do the regulations under HIPAA fit into the plans? She says they're not supposed to disclose name, address, phone, age, disability, anything that could identify the individual with a disability. So should they throw out HIPAA and focus on the plan for of preparing for a disaster? >> June: Welshing I'm no HIPAA expert, but I know HIPAA does relay -- HIPAA does relate to the people you work with and they, certainly, too, have to be included in your emergency planning; but that's more of a transient audience. And so you've got to prepare to include them, but in terms of names and identifying people to responders, first responders and risk managers, I think -- I'm not sure that's even within the rubric of HIPAA. We need to get advice about that, but I don't think this is a HIPAA issue. >> Laurel: Gosh, June, I haven't a clue what HIPAA is. >> June: You would. >> Rachel: Oh, gosh, what does it stand for. I'll check real quickly. >> June: Health information -- something portability act. The new part of HIPAA that has been in the news lately has to do with keeping health information confidential and what people's rights are related to that information, obtaining it, to protecting it and some independent living centers have responsibilities and compliance issues under HIPAA bus that doe collect some health related information, but again I'm no expert and I'm only giving an opinion. I think that our employee group are kind of outside of the HIPAA issues and relate more to employment issues, for example, under Title I of the ADA, but I will have to stay tuned there, but I will never let something like HIPAA get in the way of what we're trying to protect here in terms of life safety. I don't think that was its intent at all. >> Laurel: Are there other laws that pertain to disaster planning that we need to know about? >> June: Well, you know, every jurisdiction, government type entity is different, so I can't really say in terms of what you deal with geographically, but there is no specific law that says you must do this and you must do that, but you know, ADA of course under Title I and Title III do have issues. For example, ADA doesn't really require emergency plans, but Title I, Title II and Title III requires that employers and public services and public accommodations operate in terms of policies and procedures that include people with disabilities that can be kind of vague, but my interpretation is that, you know, we need to be included when those plans are created or revised and they need to include us. But I don't know of any federal law that requires disaster or evacuation plans specifically for people with disabilities. I don't think it's exactly clear, the responsibility. >> Laurel: Again, then, the own us is on ourselves, isn't it, this terms of looking out for ourselves? >> June: Is. >> Laurel: June, my watch is a tuned to the atomic clock so I know it's pretty correct and I have got about 25 after. So before we close, I wondered if there is something significant that we need to cover that we haven't? Such as other disasters or situations? >> June: Well, you know there are a lot of other disasters, and I think I give you on the handouts the U. R. L. to the website for resources, will lead you to some tipsheets that are available in Spanish and English, and although they focus on earthquake safety, they really have significant application for other types of disaster preparedness for people with disabilities. For example, a lot of the information is helpful in preparing for disasters like power outages and fires and floods and hurricanes and nuclear power plant accidents and like that mysterious caller said, abuse issues, and tornados and tsunamis and winter storms. >> Laurel: The plot of all the movies -- >> June: And I guess if I had to leave people with any one message, I guess it would just be that this whole area of disaster and emergency planning is just an activity that we have to integrate into our lives the same way we, hopefully, check our smoke alarm batteries when we change the clocks for daylight savings time. All these activities really need to be integrated into our lives and the fabric of our organizations so that these plans are created and really regularly reviewed and rehearsed and practiced and evaluated and revised. I mean, it's work, but it's worth it. It's our lives. >> Laurel: June, this has been a terrific presentation, kind of like a shock of cold water in one's face in terms of the responsibility. >> June: Or as I like to say, the wake up call or smelling the coffee. >> Laurel: It's just been so useful and again, let's remind folks that a copy - - or copies of as many of you would like are available online that we have posted. Also we were asking for each of you to complete an evaluation on this presentation, and Ms. Kailes has allowed us to say that the first 20 who submit evaluation forms will receive a print copy of the guide. June, how many pages? >> June: Oh, let's see, the guide's value by the way is 24 dollars and the bound copy has 36 pages, but one thing, Laurel, in order to get the guide, they have to include their name and address in their evaluation form. The guide is 37 pages. >> Laurel: And for another nickel, you'll autograph them? >> June: I guess, yeah. Sure. >> Laurel: So the first 20 will receive print copies if they include with that their contact -- mailing address, mailing information. June, thanks -- just thanks very much for this presentation today. Just been terrific. >> June: Thanks for the opportunity to discuss the issue. >> Laurel: And we will schedule in the near future a presentation on rolls that centers can play -- and SILCs, too, in disaster preparedness. Let me remind our audience that we will have a discussion forum. June has agreed to be available for four weeks to field questions or respond to comments on a discussion forum on this topic for you to access the discussion forum tomorrow, you can come back to this same web page with June's presentation. And there will be a new link there for the discussion and please click there. Some of the items that we've discussed today we'll have posted information the about that on the discussion forum site. Also, this presentation is being archived so that the audio will be available, the transcript of the realtime captioning will be available, as well as the handouts. They'll be a dedicated web page for these materials and this lovely photo of our presenter. June, it's a good photograph. So, if you'd like to access the archives, it is there. Let me also say that as part of the RIIL project, we maintain a database to which you can go and type in, you know, the key words, in this case, disaster preparedness or whatever, and resource materials that are available will come up that have been abstracted. This is a marvelous database. I use it all the time. You can type in any word from employment to reasonable accommodation to disaster preparedness and see what resources are available on this U. R. L., it is WWW.getRIIL.org. And our colleagues at the independent research and training center at the University of Kansas have been primarily responsible for that database. Cindy Higgins has been in charge of it it's just a wonderful resource. I want to, again, thank NIDRR for its initiative to provide this venue so that those of us who are not researchers but have a huge stake in activities that are going on in the research field such as this, can be made available -- can be made aware of the findings. Also our colleagues at the research and training center at independent living at Kansas, Jim Budde, Glen White, Cindy Higgins have been wonderful partners on this project. At our own site at ILRU, our web team consist of Marj Gordon, Dawn Heinsohn, Sharon Finney, Rachel Kosoy, and Mark Richards. Thanks also to our technicians, Rob Dickehuth and Marie Bryant, they're the ones who make this possible. And if they weren't here, June, you and I can go missing, but if these guys go missing it's a dead loss. And again we hope that you'll join us in the future for more presentations and webcasts. Our colleagues -- >> Rachel: Yeah, we'll have one on Wednesday. The presenter will be Peter Blanck and he's going to be talking about recent cases actually that have been recently decided as well as one that's now pending before the court. >> Laurel: So please join us for that and with that we want to say good afternoon and we're glad that you could join us.