Thank you. Good afternoon, everyone, as we are now into the holiday season. I know everyone''s schedules are very busy, and I do appreciate your time and interest in this topic and carving some time out of your schedule. This is our December 2004 session, which is part of a 12-part series, which started in October of 2004, and runs through next September 2005. The Regional Disability and Business Technical Assistance Centers representing all of the states and territories in the U.S. bring it to you and our focus is on the Americans with Disabilities Act. Hopefully all of you are familiar with us, if you are not, and you want more information about the Disability and Business Technical Assistance Centers, please contact your Center, which you can do through their 800 numbers, 800-949-4232. Both voice and TTY. And if you need to identify or locate the center that serves your area, can you go on the internet at www.adata.org and locate the center that serves you in your area as well as find out a little bit more about the ADA initiative that is operated by the Disability and Business Technical Assistance Centers. The session today is one we have received a great deal of interest and response to. We are going to be focusing on issues on Emergency Preparedness for People with Disabilities. This is an issue with heightened awareness given the events of the last few years, it is not something that is new, I don''t think there has been a sudden change in the environment per say as it would relate to People with Disabilities, I just think it is more of a heightened awareness and a recognition of the fact that, you know, maybe we haven''t been doing who we need to do, or maybe we need to be doing more in this particular area. Just as a reminder, all of you are on mute right now. Well have a question-and-answer session, and the operator will come on and give you instructions on how to ask those questions. Well be doing a couple different sessions during the time today, so I do encourage you to save your questions or the questions that have already arisen in your mind prior to even starting today, please be ready to present those to our speakers. For those of you that are interested we do have the session running simultaneously in real-time captioning via the Internet. You can access that information by growing to our website, which is www.adagreatlakes.org. And follow the links, which include accessing our programs and services, and from that link you''ll be able to access the audio conference series, which will connect you to the actual captioning itself. We have many people who join us in that method that also allows you to create a transcript for today''s session, but I will let you know that we do edit the transcripts and we do post the transcript as well as the audio recording for each session on our website for archival purposes, so if you have colleagues or others that, or yourself you want to go back to the session after we completed today, you will be able to do that. So without taking any more additional time in the introductory process here for the session. Let me go on and introduce our speaker for today''s session. Our speaker is Elizabeth Davis and Elizabeth has been the director or is directing the Emergency Preparedness Initiative under the National Organization for Disabilities for the last three years. She has extensive experience in this area, she has been involved in many issues related to emergency response, including activities taking place shortly after the 9/11 attacks, she has worked with many of the federal agencies, including FEMA, the Federal Emergency Management Administration and New York city office of Emergency Management as their special needs advisor. She operates and is part of a consultant''s company, EAD and Associates as well. So she has many different hats that she wears but today she is coming to us in her role as the director of the National Organization on Disabilities, Emergency Preparedness Initiative. She has served most recently, she chaired the first national conference on Emergency Preparedness for People with Disabilities, which was co-sponsored by the national capital region as well as the Department of Homeland Security. That was an excellent conference I had the opportunity to attend as many of you on the line may have also had the opportunity to attend. But I think it was a much-needed opportunity to bring a lot of people together. Around this very important topic. She also serves on a number of Advisor Committees within the Administration and Homeland Security and such within Federal Emergency Management Administration, at the state level, she works with many different Local Departments and State Departments of Health. Departments of Human Services, Department of Emergency, State and Local Management Programs, she is also been involved with many Academic Research Studies on Emergency Preparedness and such as an advisor and as part of their process. So I think that what you have today is someone who is speaking to us on this topic who has a wealth of knowledge, and as we were preparing and talking prior to this particular session, we are talking about the fact that we probably could spend hours and days on this topic. But we have only 90 minutes or less as I keep going on. So obviously, we do have to condense it down, there is a lot of material and information, which Elizabeth will be referring to, available on the National Organization of Disabilities website for those of you not familiar with that website, it is www.nod.org, and you will see their Emergency Preparedness Initiative listed on their website''s front page, once you link to that, you''ll find many, many different resources and things to refer to. So without further do, I will go ahead and turn the session over to Elizabeth, and hopefully everyone today will have an opportunity to learn some new information. Reaffirm some things you may have already known, and get some ideas of how to move forward in your own Organizations or for your own Individual interests in the future. Thank you very much, and I''ll turn it over to you, Elizabeth.
Thank you, Robin. This is Elizabeth Davis, after an introduction such as that; I hope I have something brilliant and worthwhile to share with everybody today. That was very impressive, and quite humbling, thank you, Robin. To everybody on the line, I recognize that people who represent a number of different Organizations, Advocacy Groups as well as Emergency Management Personnel and just those persons who are very interested and/or responsible for this particular subject area join today us through this virtual teleconference experience. So as we go forward, I certainly am going to try to present concepts and thoughts, information that will be useful to you, no matter which way you need to use that in your professional and personal experiences. So I would invite you when we do open to questions and answers, which I, by the way, hope to do at a few points today. I invite you to introduce the perspective from which you are addressing a question so that I can better customize or maybe refocus an answer to meet your particular needs. As I go forward with this, I would also be remiss if I didn''t introduce one other person that I have joining us here on the line. I would like to introduce miss Hillary Styrene, who is currently the Emergency Management Program Officer with the National Organization on Disability. She works with the Emergency Preparedness Initiative, EPI, I will try to take care of acronyms as we go along. She is based out of our D.C. Office. She has extensive experience in all Hazards Emergency Management, in particular, Emergency Medical Services as well as the Implementation of Long-range Planning. And I certainly have come to recognize her as an accomplished public speaker and someone who has experience in Community Outreach and Education, and in particular, with the outcome and impact data gathering and benchmarks when we need to do this kind of gap analysis to effectively include and increase the effectiveness of our practice area. So Hillary is joining us on this line, and from time to time I hope that she will feel comfortable chiming in.
So, with that, let us start with some baseline information. Again, just sort of so we are all speaking the same language. And as I get started in this, just to reiterate a point Robin made, today I am representing the National Organization on Disabilities, Emergency Preparedness Initiative. And I am pleased to extend welcomes on behalf of Allen Rakes of NOD, and our chairman of the board as well. They thank you as I do, for your personal and professional commitments to Emergency Preparedness in general and in particular, to the needs of People with Disabilities. So without further do, if we will accept for today''s conversation the most boiled down, the most simplistic definition of Emergency Management, the mission of Emergency Management to be that to Preserve Life, Protect Property and Services, I think that is the point Emergency Preparedness response should be. When I said, Property and Preserve Life, that is all Life. It is to preserve when we can through preparedness or response or even any other aspect of Emergency Management, when we talk about life, we are talking about everybody, with or without Disability. And when we are talking bout continuance of service, it is not just Government service on a day-to-day basis, it is services and nexus of care as well. So we have to keep in mind again it depending on where you all are coming from, how you fit into that very, very boiled down but basic definition. Also offering a definition. Let me suggest a traditional definition of special needs with regard to the way it is defined in Emergency Management. And this is not necessarily the definition if you open up the dictionary you''ll find. This is a definition we have come to accept as a basic standard in the field. I would suggest to you that using a traditional definition usually covers the groups that include People with Disabilities and I would say the full age spectrum within that. Senior population, which is a very specific age spectrum, and then manically managed, everything from pediatric to geriatric issues. As we have evolved in this process, we have come to recognize that there is an over lap, we have come to realize there is an overlap of these issues with each other. More recently we have found that folks in the planning field have started to include other groups within that umbrella definition of special needs population. Now, I would suggest that while all unique Emergency needs certainly are important, by expanding the definition too widely beyond that of a traditional definition, we all run the risk of overwhelming our own planning process. So for today''s purposes, when I suggest special needs population, within the context of this discussion, I am talking about People with Disabilities, seniors or the age spectrum within Medically Managed. There are other areas, as I said, that have in some cases been expanded to include none-English Speaking Populations, Ethnic and Cultural Minority Communities. Perhaps animal issues, homeless issues and other marginalized issues. All very important. If we can follow a methodology of planning with a traditional method, that same methodology can be applied to many of these other groups as well. Let me offer and recommend a suggested definition, again for today''s purposes as we go forward, but this is not a be all and end all, I challenge you do take this definition and manipulate it as broadly or as narrowly as you need to for your own planning purposes, this is one that I think with much consideration will at least get us a starting point. And that would be Individuals in the Community with Physical, Mental or Medical care needs that may require assistance before, during and/or after a disaster or Emergency. And who have exhausted all other resources and support networks. Now, I know that that was a lot, but if we break that down, I think you will start to understand some of the nuances here, and quite frankly, the very careful selection of words. We are talking about individuals within the community, regardless of their particular Disability or other special needs, it is Individuals within the Community. This is suggesting that there is a parallel planning process for the Institutional Structures that exist in our Communities today. That would be the RHCF, the Residential Health Care Facilities, commonly known as Nursing Homes and the like. It would include some sort of Group Housing situation, or Senior Housing Complexes, thing look like that. Those are going to be institutional planning concerns. I can address 134 of that in the question and answer part of today''s call. But for the purposes of the rest of the conversation, again, I''m going to focus on the Individual, the Mrs. Jones, and the Mr. Smith who live within our Community and who on a day-to-day basis function quite capably and independently. These are the same people who may, it does not say must, it does not say will always it says may require some assistance before, during or after a Disaster Emergency. We need to keep this ability focused, and I challenge and charge you with that responsibility. It is suggesting a few things, it is suggesting first that each of us has an obligation and I would suggest a responsibility to Ourselves and our Family Members and our Community at large to really do an assessment of what we are able to do. To be as involved and to be as strong a partner in this entire preparedness aspect of our lives as we can. To keep it ability focused means that we have put these preparedness efforts into place. And, therefore, we may or may not need or find the need for assistance before, during or after. We might, but so should or so could anyone else. And then the definition I offered you also suggests that this is for persons who have exhausted all other resources and support networks, that part of the definition that I offered to you today for consideration, I think, really suggests that we look to what we have available to us. We look to the Nexus of support. We look to our friends and family first. This is the basic preparedness message for the entire general population. If we do receive some sort of level of care, or support, let us say in the form of some home-based care, a visiting Nurse, a Home Health aide or Home Care Attendant, that we also involve not only them Individually, but their Agency as a whole so we understand how we fit into their plans and they understand what our expectations are as well as what our abilities will be. And we put a plan together for ourselves but take into account all of these other resources and perhaps the limitation of those resources under different triggering events. Moving on to another point here, I would again put out a challenge or a call to the participants on today''s conference to really involve persons with Disabilities directly, themselves on your Council''s or task forces within your planning groups before an incident. This, obviously, is the time to do the planning now, when we have the luxury and the ability to speak to each other in this proactive way. I don''t think we want to be, or find ourselves in a reactive situation any more than is absolutely necessary. Now, the benefits involving People with Disabilities directly in these planning efforts I would suggest are many fold, but to State some of the obvious. You are going to open yourselves up to more creative solutions. You are going to have people who can bring new vision. You are going to have people who are themselves subject matter experts around the issues that they deal with on a daily basis. You are going to gain and be able to benefit from Individual knowledge and experience. And quite frankly, from an Emergency Management perspective, if I can offer this as well. You might find that you will all of a sudden have access to nontraditional resources. That is to say, resources that are not usually thought of as Emergency Resources or First Response Resources, might come into play when you do this proactive advanced planning, and by way of example, that might mean not the ambulances, but the Ambulate Companies, the Private Transport Companies are not first response Elements. They are not necessarily always counted in the stocks of resources but might very well be available if they are brought in and engaged early on. It is including People with Disabilities and those Resources that support this Community, and to look at what could be an Emergency Resource in a different way than we have traditionally done so. Now, what I would like to do is spend a few moments now giving to you all some basic statistics. And I''m not a statistician. And I''m one who always kept away from that in my law study as well as my graduate study beyond that, even. But I will offer them to you for the value that I think that they can bring. They offer, I believe, tools for you all to help support this kind of planning effort and to help sort of push change forward. And so to do that, let me give you some of the basic information. 54 million people make up the Disability Community within this Country, roughly 1-in-5 persons. Now, the spectrum of Disability is a broad one. It can include Temporary or Chronic Episodic; it can include Visible or Invisible. Generally groups under Disability can be cataloged in sort of the following large groups. Physical, Sensory, Cognitive and Psychological or Mental Health Disability. It is not to say that that is an exhaustive list, but most things will fall under one of those. That is a very Medical Model. And I think some of you might challenge me and say, but I thought we talked about Ability Focused and not Medical Model. This is true, but just to get you started on sort of general categories of information, did is usually by definition a Medical Model. The application I would hope would be a functional and Ability-based Model. The important thing to point out about the Disability Community, though, is that anyone at any time can become part of this Community and it is for that reason that planning around these issues and working with this Community has a benefit far beyond just the people that you might initially be targeting your efforts to assist and address. And I think that that is the point that we need to keep in mind. Moving forward, I would also give you a few pieces of information around the older population because traditionally age and Disability overlap most notably at that point in the spectrum. So just some basic information. Persons 65 and older account for about 12.7% of the population within this country. So at the time of the 2000 Census, that was about one-in-seven persons, by the year 2030, which is not as far away, as it sounds as I''m saying this. That number will increase with the aging up effect to 1-in-5. Mirroring the number that meet the standard definition of some Medical Disability. I think the best way to consider the aging population and how actively involved in Society People remain for a longer period of time now is basically to use the Willard Scott example. I''m borrowing this from a dear colleague of mine from Florida. About 15 years ago Willard Scott from the today show started partnering with Smackers Jam, and introduced what looks like a very lovely older person usually Marge from somewhere in the middle of the country who congratulations go out to her today because she is 100 years old. That was maybe once a week or so. Well, if you do watch "the today show" on any regular basis, you will note that not only is it Marge turning 100. It is Josephine turning 108, it is Bob who is 104 and it is more people than they can even announce on a daily basis. So we do need to recognize that the dynamic of the demographics change, and by that, automatically necessity changes within our planning efforts. Now, I want to pause for just a moment before I give you some more statistics and try to answer a question, if I may. Robin posed this question, I think, just by selection of her Title for today''s presentation. The Title as I understand it, the working title has always been, Emergency Preparedness for People with Disabilities. Have we made Progress? And I would suggest to you that the simple answer to that is, yes, we have made progress. But I would then qualify that answer by saying, does that mean that we are there yet? And I would say, no. Does it mean that we have a lot to still do? Does it mean that we have all the answers? Do we have more questions than we have answers? Do we know where we need to go with all of this planning, and these are not necessarily as easy as just answering yes to the general broader question. We need to consider where we have been in this planning process, where we are now and where we need to continue to go forward. So just to give a very brief historical perspective for a moment. There are a number of persons out there, various different focus Career Perspectives who have been working on this, I guess now what is called Emergency Preparedness, and the specialty around People with Disabilities and/or other special needs for a number of years. Again, many of my Colleagues and I use them as incredible resources, have been doing this for decades on end. And those of us who have specialized in this particular area for a long period of time probably all share one common trait, and that is, those we have bruises and permanent lumps and bumps on our head, from knocking into brick walls. And I think that what we have all found is that certainly in the last few years since the unfortunate event that is occurred on September 11th, but really, in this area, more notably, this past calendar year, we have seen real attention focused on this area of specialty planning. And again, remember, even though it is a focus on a specialty area, it has broad, wide impact, potential when we are talking about general preparedness as well. What is good here will be good for all. And just by way of example, again, to kind of see the movement in this area in the last year, again, not an exhaustive list, but let me point out to you, December of 2003, the Department of Labor, with a keynote by the Secretary of the Department of Labor held a summit on these issues, and the Employment of People with Disabilities and general population and workplace standards and changes in this area. The chairman of the FCC in March of 2004 held a working summit on the issues of Emergency Communication, and how effectively it can be accessed and utilized by persons with certain Sensory Disabilities. The National Hurricane Conference has a subcommittee and has had one for a number of years, I co chair that, on Health Care related issues as well as special needs issues. But this year, for the first time coming up in the 2005 calendar, one of the general sessions will actually address this issue as opposed to just the working group and topics held during some of the breakouts. The CDC has held working summits that have included these issues. The Department of Homeland Security, National Capital Region as you heard from Robin. And the Interagency Committee on Disability Research as early as October of 2004. But really, I think the pinnacle of all this, we need to look to the Presidential Executive Order which was signed on July 22nd of ''04, and this is the Individuals with Disabilities and Emergency Preparedness Executive Order, which then directs among a number of different basic actions that the needs of People with Disabilities, the Unique Emergency needs, that is to say, not needs on a daily basis, but the unique needs that may occur as a result of an impact event need to be considered in all levels of Preparedness at the Federal Level, and, of course, as we all know, that trickles down to state and local planning as well. So there have certainly been as I mentioned a moment ago a great deal of attention directed to this issue. Many of us who have worked in this area, many of you included I am sure are very excited about the momentum that we have going now, but probably now equally frustrated by the fact that we recognize we need to Work hard and work fast to capture this moment to move forward while we have the attention focused on it. As we all know, tomorrow it will be a different flavor of the day, and so we need to take advantage of our opportunity now to really share our information and to work across the line here to get the most effective results for our Constituents and our Individuals. And for our Agencies as well. Let me return if I can then to a few more pieces of information that might help set a strong backdrop why all of this activity, why this is important. The National Organization on Disability has conducted to date now, three surveys or polls which are Individually and Collectively meant to just scratch the surface. It is to get us thinking about where we need to go, and to give us the empirical tools to move forward. So in November of 2001, Harris, the Harris Interactive Poll were commissioned by NOD to conduct a few question survey. This is in the immediate aftermath, November of 2001 of the events of September 11th. And the results were unfortunate. The most important information is that 58% of People with Disabilities at that time indicated they did not know to whom they needed to address their concerns or find out information about emergency plans within their community. 58%. 61% of people with disabilities had not made plans to quickly and safely evacuate even their own homes. Among those persons with disabilities employed full or part time, 50% said there was no plan in place to safely evacuate their workplace. Now, I can report that the statistical number of persons without disability was not all that great either. But certainly the percentages and the statistics were much higher among the population identifying as having a Disability than those without. And something else in general that that survey also found is that people with Disabilities it was revealed through the gathering of information were, in fact, more anxious about their personal safety post 9/11 than even the general population. Now, a resurvey using the exact same question-based criteria was conducted in late 2003, almost 2 years after the initial survey to sort of gauge the change, the plus or the minus in this area. And the percentage of People with Disabilities indicating that they did not know whom to contact in their Community about Emergency Plans. And those who had not made plans to evacuate their own homes, unfortunately, barely changed in the two years after that first post 9/11 survey. The most dramatic improvement, however, really was in the area of workplace preparedness plans for Employees with Disabilities, and that is a promising result, that is a very good result, it shows that private business as well as Public Employers are recognizing that if their bottom line is to save lives, if their most critical asset is not the building structure, not the computers, not the, not all the data they collect, not whatever it is they make. It is really their Employee, and they value each Employee as equally important, then they put these plans into place. So that was promising. But as I said, still disappointing that when you think about it the number of people who spend the majority of their time in a work situation still does not outnumber the number of people who spend their lives doing other things, enjoying their family and friends and volunteering and spending time at other locations it doesn''t encounter or take into account the entire environment, 9:00 to 5:00 Monday through Friday on average is not the vast majority of your daily experience. What are we missing around here, and how do we fill that gap around the preparedness message. The third survey that was conducted again using Harris Poll as the benchmark data collection entity was commissioned in 2004 just a few months ago, on behalf of the Department of Homeland Security, the purpose of this new survey was to determine the degree to which jurisdictions had taken into account the needs of People with Disabilities in their Emergency Planning as well as in having included People with Disabilities within the planning process. Now, the respondents were a very specific population, nationwide it was a cross section of Emergency Managers from each of the state Emergency Management Offices as well as the 50 largest cities or Municipalities, 50 randomly selected mid sized and smaller cities as well. Again, here it is a snapshot, the results are a snapshot that we can use as a baseline to go more deeply and fully into an examination of the issues, but planning is clearly under way. Here are some of the numbers that may be of interest to you all. 76% of the respondents affirmed they did not have a paid expert on staff to deal with Emergency Preparedness with People with Disabilities. 36% stated they had no special training on the topic. And that none had been offered. 39% stated no specialized equipment for use with People with Disabilities during an Emergency or they were not aware of it. And 59% did not have plans that include Pediatric issues. I''m including that because it overlaps with some of the issues in the traditional definition. 73% indicated they did not receive funding nor did they expect to receive funding to address specifically Emergency Planning for People with Disabilities. That becomes very important, because it means that we need to look to creative funding sources, to master up the financial support we need to really effectively put planning around this issue at the front of the agenda items. And another piece of information, while it might seem a little disjointed from what I was talking about, I put this to you because this one to me is very annoying finding. 42% of the respondents said they had a public awareness campaign providing Emergency Information to People with Disabilities. Now that number right there 42% is too low number. But going further, only 16% of that 42 make their plan or their information available in an accessible format. Now, if we can think about that for a second, I know I can''t see your faces and gauge your reaction on the phone. 42% have a public awareness campaign to provide Emergency information with People with Disabilities. Only 16% make that information or their plans available in an accessible format. What this is saying is quite simply those who do have or have made an effort in this area have not addressed how do we get that information, how do we disseminate that critical life safety information that we want to empower each person to make decision critical information for people who want to make decisions for their own selves and to empower them to put plans in place. How do we get that information to them if we are not doing so in accessible formats such as Braille or cassette, large type, accessible websites, et cetera. So this is a puzzling result, but one in a I hope as we advertise more and more will change and hopefully change very quickly. Let me think for a minute here about a few other issues and introduce these to you, that create I believe unique planning issues for Emergency Planners as well as the Disability Community. And while I''m just going to mention them briefly, I''m mentioning them because I''m going to anticipate questions from you, the participants probably on some of these unique issues. That is not to say this is not a difficult or dynamic issue, when you think about all levels of planning and preparedness, the ones I think tend to be most sticky and create the most difficulty for planners, usually include some of the following: the concept of a special needs registry, I can talk about the pros and cons of that if anyone is interested. Special needs or special medical need shelter, depending on how it is calls and where you are. We can talk about that. Pretreated classifications for persons with Disabilities. Media communication and special needs messaging. We talked, well; we touched very briefly on the financial commitment to this area. Transportation is always an issue that creates a unique planning area for consideration as well as evacuation and equipment toward that endeavor. So there are a number of other issues that I hope today we are going to be able to address. But quite simply, so I have a moment to take a little sip of water, and to also give you the opportunity to not listen to me straight through for 90 minutes, let me ask if there are a few questions that we might be able to take now on anything thus far, and then we can continue and maybe it will redirect our focus a little bit.
Great. And thank you. We will ask Carol to come on and give some instructions to our participants so they will know how to ask questions and we will open it up for everybody. We will go ahead and take the first question.
Well at this time, there are no questions in cue. Here we go, there is; now we have two questions in cue.
Two, just takes them a few minutes. We are going to have a million questions.
You said something about a registry, how would that be possible?
Okay. The question is about special needs registries, and what I will do, if it is okay with you, sir, is to give a quick definition of what we are talking about, and then explains the dynamic of if. Special needs registries or registries in general the simply a direction of pedigree-collection of pedigree information, if you will, and you set your parameters around what you want to collect. It can be done at the municipal level that is somehow supported by a Government function, it can be done at the Organizational or Building Structure, I don''t know if we have building safety or fire safety directors on the line today. It can be done in a large area or in very specific focused Communities like a Building Population or a worksite or an apartment complex. Think of it in terms of having an application across many different environments. Now, having said that. Special needs registries are different depending on where they are housed. Some communities have opted to put together a registry for People with Disabilities or other special needs again. However it is that they define those parameters. They collect the information, how is the information and what they do with it may be different from Community to Community. Some cases in the most basic form registries are used as an opportunity for Individual Community Members to let their particular needs be known, so that planners can use that information to help further their change or adaptation of plans around community needs. There is no expectation of service, there is just more of a information gathering tool. Moving along the food chain. You will have Jurisdictions that are very well organized around these issues and invite their Community Members to register with them so that services can be provided in the event of an Emergency or Disaster. And these services can include advanced notification of a condition it can include direct point-to-point transportation pickup. It can include information about certain specialized locations to weight out whatever the impact situation might be. It can take many forms. The pluses and minuses to a registry should be quite evident. The information is only as good as it remains current. The minute a registry goes stale, it is almost worse, because an expectation of some sort of service was established than if one had not been established at all. And that is a challenge, therefore, for anyone using it. To make sure that it continued to be robust, be updated and be live, real living document, now, some of the negative impact of registry is that if it is not set up again. I''m using a municipal exam. If it is not set up where the jurisdiction can instill the confidence that is necessary to the community that their information will be treated as confidential. And only shared under certain circumstances, if they can''t spell out to whom that information will be shared and when it will be shared and more importantly, how and when it will be housed, there is a reluctant in the community to share that information. If you can overcome those barriers, you can effectively use a registry system. There are other disadvantages, but the advantage, obviously, is that you at least have a handle on the particular specific needs of your community members as you have defined it within the registry. I would, by way of example point out to you, when you said, how is this done, that if you look to Florida, for example, in the most Andrew hurricane Andrew era, which is I guess now 12 years behind us. You will find that the state of Florida actually mandates that all 67 of its counties maintain a municipal special needs registry of People with Disabilities. Now, let me be very clear here. The state mandates that the county have available a special needs registry. It is still a voluntary registry and it is still up to each Individual Community Member as to whether he or she wishes to put their name on to that registry and participate in that registry. It cannot be mandated that an Individual must be part of a registry, but a registry can be mandated that it exists. Florida definitely has a very active and robust registry system on a statewide basis handled at the county level. Other places such as New York State, within the executive law, I think it is under article 2b, you will find that a special needs registry is mentioned. And it suggests that a municipality is certainly able to set up such a registry, but it says, it is not mandated but you can, if it is set up, then there is an obligation that kicks in that it must be maintained. So you will see that there are a number of different ways that this is handled throughout the country. I hope that at least started some of the conversation around special needs registries that may have answered your question.
That is good. This is a very frequent question that we get, because everyone is often times you get the intersect with the Disability Acts after other State or Local Legislation which we talk about, it becomes a big question when people start looking at registry issues, can we or can''t we collect this information. What do we do with it, and what are the parameters when you look at the overlays of several pieces of legislation.
I think to add to that, it is our, as planners, it is really our job to, first of all, make a decision whether we can start going down this road and whether we are going to be able to maintain it, because you really do have to recognize that it can be a very intense data collection. And very heavy resource needed endeavor if we do this. It can be a cost factor depending on how and where it is maintained. If we choose to do this, I think it is incumbent on us to overcome some of those other barriers and to try to figure out a way that the intersect is, how can we make it seem like it is a competing interest and it is hitting itself right up against another issue. I think it is incumbent upon us to make this as clearly inviting as possible. By anticipating what the concerns are going to be, by finding solution to those, by being able to be confident in the use and the housing of that information. And by being very clear with the community as to what are the benefits to participating voluntarily on this registry. If people don''t see that they truly have a benefit that out ways their concerns or initial concerns about sharing the information. They will not share it, if it is very clear what that does for them, what it makes available to them or how it might help them, then I think you will see an increased awareness around the need to register oneself on this kind of a system.
I any it is also as you said earlier, it is not just all about disability, it is about people with different types of limitations or things that may interfere with their Emergency situation, it could be someone who is pregnant at the time or a whole bunch of different things.
That is up to whether it is a municipality, a building, a community, an agency, to decide how they want to set those parameters, do some registries allow for people to come in and out as with a temporary condition? Yes. Do others? No. There are a lot of examples out there, what works in one Jurisdiction may not necessarily work well in another. So it is using your Demographics and Resources as well. Don''t promise more than you can provide. That is cautionary note. To recognize this can be a very strong tool to you as planners and hopefully never to have to be used but in reality, it can be a very effective response tool as well. I think we also need to consider what you were just getting to, which is the definition of these things that we do have a system in place under other requirements. And that is why we have to look creatively across lines here, and pass what our usual experience has been. Some of the biggest registry systems are actually maintained under the public services commission standards by the utility companies. And those are the lye''s, the license sustaining equipment customers, by your large Electric Utility Company or electric or gas, depending on where you are, and they will maintain a list of their customer base, those persons who cannot go without electricity in the event of a scheduled brownout or low voltage, or in the event of an emergency unexpected that creates a power issue. They will immediately know where their customer base is that has to be addressed first. Now, again, even there. The definition of who is covered under that and whether you are talking about an Individual with a life sustaining piece of equipment in their home, who is the name on the account or whether the account is under another relatives name, or you have an Individual in the home, all of these issues become complex. But not that they are impossible to work through. Just be aware of that.
Yes. Again, it is the issue of approaching it with your eyes wide open, and not thinking of it as something as simple as a list or registry. There are many obligations, pros and cons and, you know, goods and bads of why you might do it.
Were there any other questions on another issue that I can answer.
Yeah, let us see if there are any other questions in the cue.
I''m from, a Neurosurgeon in Dover, New Hampshire; I''m also on the Governor''s Commission of Disability. I''m a County Medical Examiner, I have been doing Emergency Management work for 15 years and I have been the Military Medical Civilian for the state of New Hampshire.
It sounds like you are wearing many, many hats yourself.
It is a small town. You do a lot. I have a spinal cord problem myself, so I see it from that side. I want to thank you for what you are doing, it sounds like you are on the right track. We have been doing this for about 15 years in New Hampshire. On the mass casualty drill side. Involving people in wheelchairs, involving people with pregnancy, and looking at trying to do Visually and Auditory Disabled and Impaired People, because we are trying to give a full spectrum, I think what we do. It is a, you have to think, way, way outside the box and encompass everybody. This is important in terms of our State Homeland Security planning as well as what North Com is interested in their junction with the states. One thing that came to mind that you were discussing the registries is, is it possible, given the clout that you know have within the administration, to consider extending the provisions of HIPPA to the registries?
HIPPA protects the medical records, since this is part and parcel connected have you considered that?
Let me try to answer the question very quickly, and then go to another point that I hope was not lost in there as well. The first, I''m going to assume that most folks know what HIPPA is or at least will be able to look this up afterwards. I''m not in any position to make change with that structure and system. It is not something that has not been discussed and talked about at many different levels including at the Department of Health and Human Services. And it is one of these area where is one need may come into direct conflict with another solution. I would suggest to you that what I have notices is that most jurisdictions or most folks that are putting a registry system together and want to include the medical community, which is a very important element by the way, I didn''t mean to suggest the Medical Model is not one we should consider. I''m suggesting we need to include Medical Model along with Ability Focused Model. A lot of jurisdictions have come to the realization that if they sat and waited in their lifetime for changes that HIPPA use, we would be waiting an awfully long time. I don''t think I take quite as grim a view on that, I think things will change faster as real recognition of solution come to the surface. I would suggest that these jurisdictions have had to find a way around some of that. A legal way around. For that, I have seen many say, well; right there what we need to look at is voluntary. You cannot provide information if it is not protected information, if you ask that next question or allow somebody to make an informed release of information that may be a way to consider HIPPA standard to take into account. I know that is a vague answer, but this is an example of a difficult area to look at. I know there is movement and folks looking at that. And to the extent that I can professionally take that issue and hammer it again, as I might have the opportunity to do shortly, I will certainly take that along. The point I wanted to get to make sure it wasn''t lost on this is the point I was saving for later in the conversation, but I''m glad you brought it up. And that is the inclusion of not only Disability issues, but also Individuals with Disabilities themselves as active participants in exercise and drill design. Let me be very clear, this I advocate as one of the most important ways you can include these, this population and these issues and probably one of the most compelling and result-driven ways. Again, a drill and an exercise we all know is done for the purpose of finding the mistakes ahead of time. So we have the opportunity to correct, put corrective action, be it a change in protocol or use of equipment, whatever it might be in place. Again, hoping we never has to use or implement, but better that we know now in playtime than in real-time. And such as the gentleman was just explaining in New Hampshire, there have been a number of jurisdictions that have been doing this for a while. Unfortunately, it is not often that we get to share the results of this information. Another downfall to the entire information sharing process and that is why conversations as this are so useful, I would suggest. It is identifying the special needs issue or the Individual with Disability and injecting real experience of impact. What the impact of a Disaster or Emergency in that scenario may be. Not just to evaluate that Individual, but also to evaluate the first response reaction to that new dynamic. And it is fine to say that emergency personnel have had some classroom training, I''m hope something classroom training around these issues and it is fine to say they have had the opportunity in real-time to have to deal with this, but systemically, by a system wide approach, that is really where we need to start evaluating the response. I could give specific examples of drill outcome, but I think, as it sounds like many of you could as well. The important thing to take away here is involving People with Disabilities in the planning stage of the exercise. You may miscertain things as opportunities where you can include an issue to inject an issue into the play. Include as volunteers or actual role play within the drill and the exercise, and here, often forgot, include those same persons in the after action or the hot wash on the far end side of the drill or exercise, because they may have experienced or recognized things that may not have been picked up by the general response community because it may have been outside of the original goal or intent of the drill, but something may have come up that we need to learn from. And so I encourage and I will challenge professionally all of those of us on this line to go forward in this area as well. I didn''t want that point that the gentleman just made from New Hampshire to be lost on us all.
Am I still on?
I think you are.
Okay. Great, wearing the hat as a medical examiner, we just want to make sure that given the triaging sometimes doesn''t seem fair, because it follows a military model. Especially in the explosive type of catastrophe, we just want to make sure that it is equally unfair to everybody. [Laughter ] So that-because there are times during triage situations where people who are still alive but under the triage of protocol are presumed to be able to not survive are tagged as black or red for high medical care urgency requirement. And we want to make sure the criteria that are used are uniform all over.
I think that is a statement that you have just made better than I could make, so-
Thank you very much.
Why don''t we take one more question and see where we are going here.
The next question is from David Cameron''s location from Ohio Rehab Services.
Hello, the Ohio Department of aging, and I''m the Department''s Representative to the State Emergency Management Agency. You said one of the things you could talk a little bit about was the shouldering issue. I know that a small County in North Carolina has a plan, and there are people in Cleveland working on such a plan for older people in the Cleveland area, I was wondering what other resources you know about or other plans that might ask that could be looked at as possible for a special needs population?
Okay. Let me address that in a number of ways, first, I''m going to assume that we are talking about a special needs shelter system, not just focused on senior populations, but anybody that will meet that definition. The other thing by the way is, I''m sort of generically calling this a special needs shelter so we all know what we are talking about. In different Counties and different Jurisdictions they may be called a Medically Managed Shelter, they may be called something else. It is the concept of what it might do for you in the planning process that we are going to discuss. And then also, to let you know that while you have pointed out a few examples, there are many, many examples of special needs sheltering at different levels throughout the country. Again, it goes back to my comment, one of the hardest things we have to deal with, is many of us are working on these issues in our own vacuum or in a silo, and we don''t have the opportunity as frequently as we should to share this information. So to everybody out there on this conference, this conference call, I would also invite you to use the EPI website as a resource, but also I invite you to submit information too. In particular, that is one of the goals that we had in putting together a-very robust website, the one Robin gave you www.nod.org/emergency will take you right to EPI. Not just to share the information, it is cataloged in a way that you can come to it as an Emergency Manager or planner, and get the information that may be most relevant to you. Or you can come to it as a consumer is and advocate. Can you kind of cross the bridge either watch there is an opportunity within there to submit either a white paper or a sample plan or whatever you want to share in terms of an after action or other thing that might be useful in getting information out there, just generally. So before I even get into what is a special needs shelter, I just have to invite those of you on the line who have, I''m sure, very good examples to also start to share that information you outwardly, if you can. Now, having said that, special needs shelters, again, you find them in places that unfortunately for them, fortunately for people outside of the area who are looking to them for planning, learning-lessons learned, places with high regularly repeated impacts often produce a lot of these kinds of solutions and, of course, a simple example of that would be Florida, this hurricane season, boy did they get hit hard. It is not as if that is not an unexpected event. So the special needs sheltering system in Florida is at least established. I think what you will come to find, some of the reports coming out this year is still not a perfect science. Still not absolutely right. But at least they have got a system in place. I think you will find examples coming in out of California, actually. You will find the gulf coast of Texas; you will find special needs shelter samples or examples from almost all impact Regions in the Country. Now, special needs shelters, let me suggest this. If you talk about a general population shelter, let us picture for a moment, if we can, a pyramid. The special needs-excuse me, the general population, the regular shelter system that is set up to an offer to a Community as a safe haven as a last resort. Again, remember, Disability or not, the Emergency Managers will tell you your first responsibility is to plan for yourself, and that means taking into account the resources you have available. Friends and family first. It is certainly a safer and more comfortable experience. As a different colleague of mine points out from Florida-the way they look at shelters of any sort is that it is a life boat and not a cruise ship. I get what they are saying, I''m sure we all do too. It is certainly not a very comfy bed with a fluffed feather pillow and a mint as you get your sheets turned down at night. It is a very sparse experience and is meant only as a last resort for those persons who don''t have any other recourse. Now, having said that, the bottom of that pyramid, the general population shelter usually is run either by the municipality, or on behalf of the Jurisdiction by an Organization such as the American Red Cross. It is most generally a place with a basic first aid level of care, and that is it. So if you are an Individual with a Disability who can self-sustain with or either on your own or with a support network that you bring with you, if you can safely get into that facility, make your way functionally to the area of safety or refuge within it, and then I would argue with some dignity be able to use the restroom facilities, there is no reason why you should not be able to ride out whatever the triggering event is in a general population shelter. I would argue, as just a matter of practice. Once you have overcome those access barriers, that is to say, these are usually in a gymnasium or some other area of a school or municipal building, let us select one that has an appropriate accessible means of getting into the facility as opposed to up two flights of stairs. Once you get in there, if you can architecturally make your way into the structure the other programmatic issues can be handled. If it doesn''t have a TTY on the public phone that is on the wall there, we can bring in a portable and hook it up. If the water fountain doesn''t meet ADAAG standards, we can bring in bottled water. There are ways to work with the programmatic aspects of sheltering. We have to temper all of this with the understanding we are dealing with an Emergency or Disaster. This is not an every day experience. My point, if an Individual with a Disability or special need or an older Individual can self-sustain, a general population shelter may be appropriate. If you jump for a moment up to the top of that pyramid to the very top point, that smallest part of the pyramid should be reserved as the critical facilities that would be the hospitals for example. In the systems that have a buy fur indicated system, they only have a again shelter system and hospitals, you find that Individuals with Disabilities or other special needs and to a large extent seniors because of the vulnerability and the very fast disintegrations of circumstances when removed from the usual daily experiences will end up in a hospital. As I''m sure you all recognize on this call, the first thing in an advanced warning situation or immediately following the response to it. The first thing hospitals do, they have to be prepared to be the critical structure to accept injury as a result of that impact event. So they are trying to reduce their census, they are canceling Elective Surgeries; they are sending people home that they feel can go home. It is calling in all the extra resources. It is finding the available space in the facility, it is not as if they really are in a position necessarily, unless a jurisdiction has planned for them to be a shelter as well to accept an in flex position to whatever position they have to deal with to trigger events. Some places have handled that and handled it well; I don''t mean to suggest it can''t happen like this. But the middle part of the pyramid is actually an answer to the question that many jurisdictions have come to find. What do we do to provide safe haven of last resort, mind you, for Individuals who need more than that first aid level of care, but less than the emergency critical care that is provided at a hospital. How do we provide our critical structure, but still know we''re providing the appropriate level of care, so people don''t end up in that critical emergency care situation. And for that, we talk about the special care shelter or whatever levels may represent in the level of the pyramid, at that point you are talking about appropriate locations with redundant power supplies, with differently trained skilled staff, separate from just a-and boy, our volunteers needed everywhere, I don''t mean to suggest they are not. Volunteers with skill sets that know how to address the very specific geriatric needs of the population, or the specific needs of certain medically managed issues within the system. It includes being able to restocks or brings in supplies that are different than the general shelter structure might need. And it also-so basically, I guess what I''m saying, it is picking a location that may need to meet standards that are different from a general population shelter location, it is identifying staff and then what I will technically call stuff. Everything that needs to be there to support and maintain people in a level of, I guess, security in the event of an event or disaster that will stretch the system across the board. I hope that that at least started to answer the question that we just had on special needs shelters. It is a huge topic, we could probably go on for a few days and hours and whatever on each one of these areas, by themselves, it could be their own breakout session or something. Why don''t we see if there is an additional question here in the cue.
Go ahead, please?
I''m with Protection and Advocacy Services. My question is, is there any requirement in the ADA that a Public Accommodation must have some sort of Emergency Preparedness plan for members of the public who may happen to be on the property when an Emergency occurs?
While I''m an Attorney, I''m not practicing as such, and I''m not offering information as an Attorney, you need to speak to either an Agency or a Businesses General Council or General Council for a Jurisdiction. Having said that, I''m also not going to represent an Agency that I''m not part of, the Department of Justice, but let me suggest and point you to a good resource to answer some of that, and then just give you an overview of where it is coming from. I think we listed this on the resources, but nonetheless, what I''m suggesting people look to is a document that just very recently was put out by the U.S. Department of Justice, their Civil Rights Division. Specifically out of their Disability rights section. And this is a short guidance document; it is titled an ADA guide for Local Governments, making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities. A very recently posted document, certainly. So I would invite you to take a look at that. It is really suggesting the following, again, I''m not offering legal advice, and I''m just interpreting what they themselves are putting forward. And what you are seeing here is the U.S. DOJ indicating that Local Government, again, this guide is for Government, but that would be title two under the ADA. Making local Government Emergency Preparedness and Response Programs Accessible to People with Disabilities is part of their responsibility. And that this is required under the ADA, which has been in place, as we all know since 1990. Now, how they are going to interpret this and extend it into a Title 111 Obligation, that is a private entity that holds itself out for public use. I can''t speak to, because they have only offered this guidance right now under a Title 11 Obligation for Local Government. I think this is an example of the state of where we are now. The fact that DOJ is putting forward this guidance document to make it very clear that this is an area that while maybe has not been enforced rigorously in the past, is certainly being interpreted now today to include People with Disabilities and their ADA protection in the area of Emergency Preparedness and planning. I don''t know if that answered your question enough. If you are still on the line, did you have anything further on that, or - I don''t know if she is still on the line.
Yeah, I''m still here. It didn''t fully answer the question, but that gives me some information about where to go to kind of look at that.
Okay. I''m sorry, I''m just having a hard time hearing you, so I''m not sure I''m catching everything, let me also follow-up by saying as well, again, it is our responsibility to kind of look beyond the usual places for guidance on these things. And what I would say is, while DOJ has come down with this guidance document, you know, think about other ways that we might see change that could impact the Emergency Planning and People with Disabilities, and I would suggest, for example, look to some-look to some unusual-well, not so unusual now for those of us in this field, but to other areas such as building codes and standards that might-safety code standards as opportunities to improve regulatory responsibility for planning with People with Disabilities and special needs, you are seeing a lot of changes right now in that area. Not only at the International and National level, with the National Fire Protection Agency but anis standards as well as a lot of local building codes. Consider that as another area that you can partner to try to push some change around necessary need in this area. And there is a lot of awareness, I think-attention focused especially in New York City as the building codes and life standards are being changed in response to the reports from the World Trade Center, but look to Chicago too, if I can offer that, and I don''t mean from last week''s LaSalle Bank fire, that was very unfortunate and I think it is going to reopen the discussion from the last event that they experienced. But I would point out to you that very, very shortly after the events of September 11th, Chicago enacted a local ordinance that essentially required every building. It was-I''m sorry, it was called the City of Chicago, and it is a new Emergency Building ordinance that became effective November 28th, 2001. And it specifically applied to all high-rise buildings over 80 feet tall. Think about that again, 80 feet tall. Not 80 stories, 80 feet. Very importantly, residential as well as commercial. Very important distinction there that they have included both of those areas of built environments, it requires a written emergency evacuation plan to be filed with this-in this case, their Emergency designated Emergency Services also, so that is basically saying that again, every building that meets that particular parameter in Chicago has to have in essence a registry system that will include at least opportunities to gather data for Individuals in that built environment that may have an Emergency related need. It is my understanding that that is the basis from which the state of Illinois general assembly looked to the legislation that they enacted basically taking and listing the concept from Chicago, but that is very new legislation, and local ordinance both, so you may not see I lot of practice or enforcement just yet under that. But it is certainly an area that we need to look to as changes are occurring around these issues all over the country.
I would just reinforce it, I mean I think the ADA, we look to it only as a legal issue and say, does the ADA mandate need to have this type of thing. It is kind of falling short of the fact, what do we provide all citizens regardless of Disability and what do we need to do to attend to the needs of populations such as People with Disabilities, but we don''t wait for a law like the ADA to say we should do it, it is something we should and would be doing all along.
That is an important point. Things like the ADA and building code standards can help to move this along, but that is-you know, there is the carrot and the stick, those are the sticks. The carrot, the benefits to why this makes sense, the benefits to what Individuals with Disabilities can bring to the table as a productive part of the planning process, what resources we have as responders, if involved and invited in that level of participation, those should be the-this makes good sense across the board. Those should be hopefully where we will get most change, through that kind of recognition that it is not a compliance issue, so much as it is just-it makes good sense. But again, it is all steeped in reality, we need a little of both, I guess.
You definitely do. Sometimes we need those other things to shake people up or move them off their dime. Why don''t we take one more question, and then we will have to wrap up as our hour and a half is coming to a close. We don''t want to leave too many people hang; I know there are a lot of people.
Hi, this is Dan Dickerson, and I''m not sure I understood about the special funding available for Emergency Evacuation Equipment. That is not to say that an interstitial is still responsible without any special funding. Don''t they have a cost of doing business to protect their most valuable asset that you talked about earlier?
Let me clarify. I am not suggesting that there is special funding available for equipment, nor do I think that they will come down. I would say an exception that I have found in just sort of casually surveying, is San Francisco, where I believe there is a local ordinance that mandates this municipal buildings purchase special evacuation devices. Unless it is very carefully crafted, I would have some problem with that. I haven''t looked at it yet; I can''t speak to it directly on point. I think what I''m suggesting here is that most Agencies or Organizations in the built environment in the building structure will find a way to do what is necessary procedurally or physically necessary to come up with the appropriate safety measures in their work environment. On the NOD website. I would suggest that maybe some folks here may find of interest that the Department of Agriculture believe it or not truly has one of the best system wide plans I have seen for a worksite. And we have linked to their information. And they are very forth coming with sharing of that information. You may want to take a look at the USDA model plan along with the U.S. Department of Transportation. One of the first agencies to put their plan out there for public review. And the U.S. Access board as well. We have them posted so you can take a look at that. That may help. Because you said something about the funding, also point out, I know we are drawing to a close here, not just around the use of funds for equipment purchased but the use of funds for appropriate staffing around these issues, and the use of funds for more drills and exercises or more Community Outreach or more effective outreach. PDI in September 29th of this year, actually it was announced, received one of the Grant Awards from the Department of Homeland Security, specifically to develop their grant develops a network that will provide information and training to Individuals with Hearing Disability on Disaster Preparedness and Homeland Security. So there are some funds out there that we probably need to look to try to bring funding into this very specialized area, it is not as if it is not existent it just maybe in the past may not have been articulated for pleasure of review, or grant award. It may be available. Of course, there are organizations private or public that have recognized that with or without funding this is still something that they are committed to, and they find ways in the case of a nursing home I was working with, they just allocated within their capital budget for the next five years. Each year purchase of certain equipment or safety standards to bring them to a level not that they are mandated to, it was over and above what they were minimally required to have in place to be licensed. They just said, this is what we need to do for ourselves.
It is always going to be a catch too where the ding is available and who is going to pay author tease, pay for these things, but I think you are looking at what is out there, it is a good suggestion. Thank you very much. Unfortunately, we do have to end our session, and I''m sure we have lots of-when people out there with many more questions or issues and hopefully what will occur is that many of you will begin this die lock, if you have not already at your Local Jurisdictions, whether it is in the workplace or with your Communities or your states from a policy level, to just local interest level, because I think that the world has changed in how we look at it, and we do need to become a much more dill gent in these issues and recognize that there is a need for a response that may be different and may take a little bit more time and effort-to again review the information, the organizations that Elizabeth comes from is the National Organization on Disability of which they have the Emergency Preparedness Initiative or EPI as you heard to her refer to it different times, more information on that initiative as well as many, many resources beyond what we have discussed today are available on their website at www.nod.org. I would also refer you to contact, if you have further questions, your Disability and Business Technical Assistance Centers who sponsored this program today, and we can be reached at 800-949-4232, both voice and TTY. I would like to thank our speakers today for their time and efforts in this area, and I''m thinking all of us can probably support the fact that Elizabeth and the National Organization on Disability have done a lot to move this issue forward on the National Agenda. And we look forward to the work that will be coming on in the years ahead, and Hillary and even though you were somewhat silent today-definitely will be in the visibility in the future and I''m sure people will be hearing more about you. The next session for our series is scheduled for January 18th, and it is kind of scary to say 2005, but the focus of that session, we are going to switchgears a little bit as we do, throughout the series have different topics covered, we''ll be focused on Historical Properties and issues related to Retrofitting and Increasing Accessibility within historical structures. Our speaker next month is James Aaron McCullough from the Disability Law Project at Living Resource Utilization Process down in Texas. We invite you to join that presentation. The session today, the archive, the resources as well as the digital recording will be available on our website and that is at www.adagreatlakes.org. I would like to thank everyone for joining today, and I hope everyone has a safe and happy holiday season. Thank you very much.
Thank you, all.