EIIP Virtual Forum Presentation — August 26, 2009

Effective Emergency Management
Making Improvements for Communities and People with Disabilities

Brenda D. Phillips, Ph.D.
Researcher, Center for the Study of Disasters and Extreme Events
Professor, Fire and Emergency Management Program
Oklahoma State University

Elizabeth A. Davis
Consultant, EAD & Associates, LLC

Amy Sebring
EIIP Moderator

The following has been prepared from a transcription of the recording. The complete slide set (Adobe PDF) may be downloaded from http://www.emforum.org/vforum/NCD/NCD_EM_report.pdf for ease of printing.

[Welcome / Introduction]

Amy Sebring: Good morning/afternoon everyone. Welcome to EMforum.org. We are glad you could join us today. Today’s topic is a new report from the National Council on Disabilities titled Effective Emergency Management: Making Improvements for Communities and People with Disabilities. You can access the full report by clicking on the image of the report cover on our home page, or via a link from our Background Page. [http://www.ncd.gov/newsroom/publications/2009/pdf/NCD_EmergencyManagement.pdf]

A related survey on our home page asks, "In my community, progress on planning for people with disabilities has been: Non-existent, Slow, Steady, or Excellent." Please take a moment to participate and review the results thus far.

Now it is my pleasure to introduce today’s guests:

[Slide 1]

Elizabeth Davis is an emergency management consultant specializing in Special Needs planning, disaster human services and related issues through her firm EAD & Associates, LLC in New York. She previously served as Director of the National Organization on Disability's Emergency Preparedness Initiative and with the NYC Office of Emergency Management as Special Needs Advisor. Ms. Davis led the research team in the development of the NCD report. We are very pleased to welcome her back to the Forum.

Professor Brenda Phillips, Ph.D. teaches emergency management and research methods courses at Oklahoma State University, with particular expertise in disaster recovery and high-risk populations. She is a researcher with the Center for the Study of Disasters and Extreme Events and a faculty member in the Fire and Emergency Management Program. Dr. Phillips served as lead researcher for the NCD report.

Welcome to you both, and thank you very much for being with us today. I now turn the floor over to Elizabeth to start us off please.


Elizabeth Davis: Thank you very much, Amy. Good afternoon and good morning to everybody who is joining us. I’m very pleased to see the number count keep going up. I feel like we’re at one of those fundraisers where you see if you can add to the number from the last time. I’m very pleased to see the numbers. I know that means this report has generated interest and probably sparked dialog, and that is certainly what we hope to continue today in this forum.

[Slide 2]

I wanted to start by giving a little bit of background about NCD. While I’m not a member of the National Council on Disabilities, it’s very important to understand the organization, the agency that actually put themselves forward to commission this research and in what resulted in over 560 page report. It is certainly not something that Dr. Phillips and I could have counted on in terms of length when we started this process.

NCD is, for those of you who are not familiar, an independent federal agency (you’ll see this on the slide, for those of you who are following the slide deck), made up of 15 members who are appointed by the President, and they advise the President, Congress and Executive Branch agencies on issues that promote policies, programs, practices and procedures guaranteeing equal opportunities for all individuals with disabilities.

Of course, their goal is to lead toward inclusion and integration to all aspects of society. That’s a very important background piece to understand when we look to the group that really did commission this research project.

Within NCD, it was their Homeland Security Committee that oversaw this particular study. The chairperson of that committee, Pat Pound, may be on the call today, and whether she is or isn’t, I want to acknowledge her leadership in this along with the other appointed members and also the Executive Director Mike Collins and Martin Gould, both of whom I also believe may be on this call today. I hope I have represented NCD well enough, and if not, I’m sure we’ll hear from them a little bit later on.

[Slide 3]

The important piece, as I move the slide forward, is to understand that first of all, the objective that NCD put forward to us when we started that process, was to spend a year in complete study mode, research mode. We were to engage in an empirical data research project that would lead us to an unknown conclusion.

That’s a very important point that I’d like to make, and I’m sure Dr. Phillips will follow up on later when she talks about the methodology. It’s not as if the agency handed us a conclusion that they wanted us to support with the findings and the research. In fact, they were silent about that and said that the conclusions will speak for themselves.

We do, however, want you to cross into many, many different areas of research, into areas that may not traditionally seem like they would touch on the subject of emergency management and persons with disabilities, and gave us a great deal of latitude, a great deal of freedom to look where we would think would be of interest, dig where we wanted to go a little further. That, I think, really enabled us to gather a very rich amount of material.

I’ll let Dr. Phillips chime in a little later as well, but we’re talking thousands and thousands of pieces of original research and reports, as well as accounts, to identify essentially where the issues with people with disabilities in emergency management were being documented, and then where we would have thought to find it, and in fact, found absent. That was another piece of what we looked to during the entire year.

As we moved forward with this, the key research team started to analyze all those different documents and materials that we had gathered, and then try to pull from those the most practical applications. What we wanted to do in the end is to turn over the NCD, so that NCD could, in turn, could put forward a report that not only was scientifically sound, but also offered some sort of road map, or some sort of suggested next step.

We recognize (we’ll talk about this a little bit more in detail later) that it was not enough to simply reach some conclusions and put them forward as promising practices. We needed to break that down by the different levels of government, the different levels of organizations, so that anybody using this report could, in fact, find a meaning, helpful way to take it and move forward in their particular area of practice.

[Slide 4]

As we move the presentation forward, I am just going to go over the overview of the report (again for those who are following the slide deck, you will see the breakdown of the report right now on the slide). We, of course, needed to include terms—we chose to use scenarios because these seem to be the best way to illustrate a point, again perhaps for people who are less familiar with these subject areas.

We did have to address, and decided to address, all four phases of emergency management, preparedness, response, and recovery and mitigation, broken down specifically in the report. We wanted to make sure that we addressed issues and focus them from the perspective of a reader who is an emergency manager, from the perspective of readers who are members of voluntary organizations, in and of themselves active in disasters, the VOADs etcetera.

We wanted to explain the implications of the research that we have undertaken over the course of the year. Initiatives that were in progress, of course, as with anything else, the minute that a report is published it is our responsibility as leaders to engage in the process of keeping what is in the report up to date.

Remember that the report and the point when we turned in, at the point it went in to be published, and it’s our obligation then to look to those things and see what has gone forward, what has continued since, and in fact, if things have changed.

The initiatives are listed within the report along with the trends—the areas where we wanted to bring special attention or focus to the readers, but where things collectively looked as though they were moving in this area. Then, of course, we wanted to include information to make this useful as a tool, and not just an academic exercise.

With that, I’d like to turn the next few slides over to Dr. Phillips to go into detail about the reporting and how to use this report successfully, and then we’ll come back again and tie it all together. Dr. Phillips, if you’d like to take it from the next slide, please.

Brenda Phillips: It’s great to be with EM Forum today, and wonderful to see some familiar names listed there on the attendee list. Hello to everyone, and thanks to Amy for having us on the forum. I also wanted to take the time to thank the EAD team, because they were incredibly supportive. Elizabeth might want to tell a little bit more about her staff in the office there that provided some assistance when I finish.

I’ll just recognize some of my own team. Dean Findley was one of the people who helped write and research some of the chapters. Dean is a long-term first responder with Oklahoma City and now works as a fire liaison for Oklahoma City. He is also pursuing a Ph.D. in the program in fire and emergency management here in Oklahoma City. He is an adjunct faculty at University of Central Oklahoma, where Dr. Jennifer Cowan is also a faculty member, and her specialty is public health and environmental studies, and Dr. Cowan supported us on the project. We had a couple of other graduate students that were assisting us with the bibliography and the other resources—Woody Harris, who is now with AmeriCorps, and Eric Loveless, who is a student at Oklahoma State. I wanted to thank them for the many long hours that they put in to provide such an extensive report.

[Slide 5]

In terms of how it is that we organized these chapters, we tried to make it so that it’s user friendly. I know sometimes when you get a document that is this long, you think to yourself, "how could it possibly be?" When you pick up a chapter, you should know that there’s an introduction, and an overview, a summary of the key findings, and a brief review of the report.

It goes then into some detail about some of the recommendations that emanate from the literature that we consulted in terms of research, and practice, and policy. We tried to make the chapters organized so that there was something in each one for all members of our community, whether they were researchers, or emergency managers, or practitioners, people with disabilities, and disability organizations.

A number of chapters are also organized so that there are recommendations that apply to individuals, also to local, state, and federal levels. Hopefully, someone will find something of relevance to them and to their work, to their interest as they go along through the report.

[Slide 6]

There is a roadmap. I think we can talk a little bit more of how to use the report a little later. I think you’ll see some practical applications as well.

[Slide 7]

I wanted to spend more of my time that I have left to talk about methodology and how we approach this work. If you’re reading along with the slides, you can see there are a number of things we tried to do. Let me just spell those out for us.

We tried to conduct a very extensive literature search across multiple disciplines. That includes sociology, public health, psychology, policy studies, health professions, disaster studies, and emergency management. We tried to search comprehensively to see what we could find out there that’s available scientifically.

We also contacted colleagues, asking for copies of key pieces that they had done in their own work. We searched technical reports, for example, quite a few have come out from GAO, the National Organization on Disability, and certainly also the National Council on Disability.

We were especially interested in looking at the National Council on Disability’s quarterly meetings, and I would encourage all the listeners and those going through the transcript later to go and look at those quarterly reports because they occur at different areas around the country and they tap into local expertise and local activities that are going on. Those are good indicators of some things that are happening out there. I encourage you to get those proceedings from the NCD website.

We also looked at key pieces that we could find, such as plans that had been written for shelters, including medical special needs shelters, as one example, and looked at how people organized those efforts vis-à-vis some of the guides that have been written for them.

We also tried to search out examples of people that are trying various efforts. I think if you read the report you’ll see that a couple of them are favorites in there. OK Warn is one. It’s a warning system here in Oklahoma, where I live, that received a national award from the National Hurricane Conference, to try to reach people who have been under-reached in times of disaster, especially during rapid onset events. One of the reasons they liked that was that it was based on some research that had been done by the meteorological community.

We also went through the conference proceedings from a number of events that have been held over the last five years, then submitted drafts to the NCD review panel and listened carefully to their suggestions, which were really outstanding, and then integrated their comments as we tried to move toward finalizing the product for National Council on Disability.

[Slide 8]

In terms of trying to identify what some of the key findings are, we’re trying to look and see if there was a consensus across the literature we examined. Sometimes that can be challenging because there is limited and uneven literature available on some topics. We tend to know more, for example, about preparedness and response than we do about recovery and mitigation.

That is a little frustrating. You’re trying to find what are the best kinds of recommendations you can offer. So when there has been minimal research, what we did was try to go through those topics and describe what we know in general about something like warning delivery systems, and then what we know from scientific literature in trying to deliver warning messages to people with disabilities, recognizing the diversity with some of the disability community, and then make some recommendations that seem to be consistent and resonate across the majority of the literature.

We also know that there is a lot published after a major event. I think we shouldn’t be surprise there was a lot of work about Hurricane Katrina and a lot of it was critical. We tried to point that out as we went through the report, and recognize that there is something beneficial that can happen when there’s a big event. Funding comes out to fuel research, and a lot of work comes out.

When you have a big event, that can distort the picture of something, so we tried to be evenhanded about that. There are some critical parts to Katrina. It’s also important to remember that there has been a lot of progress made since Katrina. We really need to encourage that kind of forward momentum. We tried to find those promising practices that were coming out. Our review panel was extremely helpful in pointing us toward some of those.

We tried to write lengthy chapters so that the readers could do some of their own self-assessment for their organizations and for their jurisdictions. It may be that we can describe a promising practice that is happening in a particular locale, but that location, that jurisdiction, isn’t the same size as yours, or it’s a different hazard. We tried to give you details so that you could make some of your own determination as well as looking at what we put in.

What we really want you to think about is: What are some of the key principles that resonate across the literature, and then what are the implications?

We also tried to identify what some of the gaps were so that we could encourage people to do research and we could encourage people who are engaged in what they believe to be promising practices for their community to bring that information forward and share it with the rest of the country so that we can begin to assess that work and share those kinds of good lessons and applications in other jurisdictions.

Some of the key findings (and I’m sure we’ll have lots of questions and answers about this and about practical applications), let me just give you some basic overviews. In terms of key findings—preparedness, we found that there were many emergency management agencies and people with disabilities that report being underprepared, or unprepared, and the dialog that seems to happen around that in the literature and conference proceedings and reports that we read is that there seems to be a lack of resources.

There’s a chapter, for example, on emergency managers that tries to talk about the challenges that emergency managers face in terms of lack of staff, lack of resources, or lack of funding. It’s not that the report is saying that there are problems with emergency management agencies that might not care, it’s saying that there seems to be a critical lack of resources to be able to do the kinds of things people really want to do.

Another element of preparedness (this resonated very clearly across all the literature) is that disaster planning needs to involve people with disabilities and disability organizations very actively. That would include also developing preparedness materials, disseminating preparedness materials, offering training that is accessible.

If we talk about response, we can talk about progress that has been made in terms of medical special needs shelters—those have moved forward quite rapidly in the last several years, and evacuation has as well, but we also have a lot of work to be done, especially work that seems to be disability specific.

There are particular areas that would benefit from additional research that needs to be done and practical applications, certainly training and resourcing, in terms of warning, and diversifying warnings, for example, to make sure that we get them to both of our communities that have disabilities.

And, in doing more work in search and rescue, everything from training first responders in rescue techniques to assisting people in workplaces to try to make them more prepared in terms of trying to help people out of settings where there could be a fire going on, or explosions. Just really trying to think through the full gamut of all the areas where we need to try to increase our capabilities to respond.

In terms of recovery, that was one of the chapters where minimal research has been done empirically, but there are certainly a number of reports and proceedings that indicate the recovery period is very difficult. I think we all understand some of the challenges, especially with accessible temporary housing in an event as large as Katrina.

There’s a wonderful report out by Laura Stowe and colleagues at Texas A&M University to talk about the case workers for Katrina aid today who tried so diligently to assist their clients. There was a real lack of resources to help get them into permanent housing that was accessible or to reconnect them with health or social services that might have been disrupted as a result of the Katrina event.

Mitigation is certainly one of the least investigated areas despite the potential to significantly reduce the risks of people with disabilities. Putting money into mitigation may not have an immediate payoff, but it could have a significant payoff down the road when we do have a larger scale event.

We would really call our attention to that field of mitigation of what we can do in terms of trying to reduce risk to nursing home facilities through hardening of facilities, for example. Through personal mitigation, whether it’s the provision of insurance or trying to find some way to offer lower income insurance to areas and people of considerable risk who have disabilities who then lose devices and other resources.

We also just wanted to mention some of the things that we think are important in these areas in terms of research and practice that need to be taken care of. For example, with preparedness and response, we know that the practice recommendations are very clear across the literature—using partners, to try to spread information, disability organizations, and voluntary organizations, to bring a full range of partners into that process.

Certainly, to involve people with disabilities in all elements of preparedness and response, whether it is building a plan, training on that plan, or exercising that plan. Or involving people with disabilities in debriefing those kinds of exercises because of the interest and knowledge and expertise that they bring to that experience.

We also need certainly to be doing more research on these kinds of topics and well. What are the best means we have to involve people with disabilities in all these different things we have mentioned?

We don’t have sufficient research in some of the areas we are using and tend to think are best practices. For example, it’s not unusual to hear someone recommend that we need to have "buddy systems" or "registries". But yet there’s really no empirical research documenting the conditions under which those buddy systems or registries work best. I think many of us know that there are some problems with buddy systems and registries as well that we might want to talk about during the Q&A session.

How do congregate locations, assisted living facilities, group homes and others prepare for, recover from and mitigate? There’s virtually an absence of literature on that. Certainly, the report is going to be calling for additional kinds of research that needs to be done.

[Slide 9]

Some of the promising progress that we’re seeing in the area, and it’s interesting that the report was basically finished in February and then went through various editing and publication procedures that had to be done, so some of the things we talk about in the report are actually in progress now, and that has been exciting to see.

Some of the things that are exciting out there—the work of the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities, and the National Organization for Disabilities Emergency Preparedness Initiative—they’re putting out information, they’re putting out efforts, they’re building partnerships, they’re releasing documents that are very helping. I encourage everyone to visit their website.

We have a National Disaster Housing Strategy that was approved and released by FEMA in January, and has some elements that call for both national and state level disaster housing task forces that involve people with disabilities and disability organizations in the creation of housing strategies. [http://www.fema.gov/pdf/media/2009/ndhs.pdf]

We have the Office of the National Disability Coordinator that has been increasingly active in trying to report information.

The Federal Highway Administration has released a Special Needs Evacuation Primer at their website. [http://ops.fhwa.dot.gov/publications/fhwahop09022/index.htm]

We have some draft versions of Comprehensive Planning Guides 301 on special needs [http://www.fema.gov/pdf/media/2008/301.pdf], and 302 on animals, including service animals, [http://www.iaem.com/committees/governmentaffairs/documents/CPG_302_HPSA_CoordDRAFT_20090506.pdf] that are being reviewed and we’re hoping will be released soon. I know that people are calling for that kind of guidance materials for use in their jurisdictions.

We also have the Hurricane Ike Impact Report for Special Needs Populations available easily on the Web. [http://www.disabilitypreparedness.gov/pdf/ike_snp.pdf] That’s a very exciting report that came out after Ike and documented what the needs would be for both the immediate time period and long term recovery. That’s an outgrowth of Emergency Support Function 14 in recovery.

Just a couple of things, and then we’ll turn it over to you for Q&A. There are two chapters in here that I really like. One of them is on Emergency Managers. The lead author in that was our very own Dean Findley who was working with an office of emergency management. We wanted him involved in that, because we wanted that to have the ring of truth. It needed to really resonate well with emergency managers.

That chapter is designed in part to try to educate disability organizations, voluntary organizations, and civic organizations about the practicing field of emergency management so we could begin to build some partnerships across our different silos.

I think the main finding that we got out of this entire project was how much we all have to work together as partners to try to address the problems of disabilities in disasters. We’re all in this together—researchers, practitioners, emergency managers, people with disabilities, and people who are involved in organizations that support or serve or advocate for people with disabilities. There’s a chapter in there for emergency managers to try to help to begin that bridge-building effort.

There’s also a very extensive chapter in there (the lead author was Dr. Callen) on voluntary organizations, community-based organizations, and trying to help educate the emergency manager about that community and what they can bring to the table. I think many emergency managers, of course, know how important they are, but we hope to try to increase and offer some information there that might be not as familiar.

I encourage you to cross-read in those different kinds of chapters.

[Slide 10]

I think our last slide moves us onto questions and answers.

Elizabeth Davis: As we get ready to take questions, I wanted to just point out a few issues. One, I notice from the attendee list (that keeps picking up—this is great) that Pat Pound is, in fact, joining us on the EM Forum.

I just wanted to recognize her as she was Chair of the NCD Homeland Security Committee that oversaw and really put some great leadership toward the progress that this report went through during the course of the year plus, and then put it forward. So I wanted to make sure we knew she was participating with us.

I also wanted to recognize staff members on our end of the team as well, who were there to report the research team Dr. Phillips announced earlier. They include staff members Rebecca Hansen, Kelly Rouba, and Hal Newman. In addition, Annie Grunewald and Christy Gibney supported on the human services pieces.

Countless other colleagues of ours from all different levels of government and individual agencies (now I feel like I’m at the Academy Awards or something and something’s missing, so I’ll just group them all together and say, "you know who you are and then if you are on this forum today, I can see you have chimed in") and these were people who took time out of their own busy schedules to voluntarily walk us through their own reports, or their research, or their stories from the field, and findings, and pointed us from point A to B to C, and again representing a large variety of disciplines.

We want to thank all of those who have participated.

I also wanted to emphasize the point that Dr. Phillips made, in moving this whole process forward. Now that this report is done, we invite all of our members of our communities to continue to publish and share. EM Forum has been a very supportive platform for that, as has LLIS and a number of trade organizations, and membership organizations.

The next time another groups undertakes research, picks it up from where we left off and move forward, we need to make sure that we constantly get our issues out there in the published arena so it is there to be found by researchers down the line. That is a very important point, especially in those areas that Dr. Phillips pointed out that we found to be a bit lean in the actual published work.

With that, the final point on the road mapping, or how to use this report, as Dr. Phillips pointed out—we tried to make it as useful (even though it’s heavy and voluminous, as one of our colleagues at our university said, "all you have to do is take that new book and drop it on the table and you’ll certainly get everybody’s attention at a meeting", that might be true, and I think George had a very creative way of doing that) but we do need for people to be able to find what they want in it.

It is designed, because it is so encapsulated into the pieces that we went over in the breakdown in simple content, essentially, one can, as a reader, go into this out of order. You can go into it out of sequence. You can just go to the resource section. You can just go to a particular phase. Or go into a chapter that you think is where you need to start, or read the Executive Summary first. It does allow for you not to have to go from page one to five hundred and something.

It enables you to actually pick up where you need to at that moment in time. We hope to hear back, and I’m sure NCD will be receiving feedback as to whether we were successful in reaching that user goal. With that, Amy, can we go to Q&A please, and see what people have to say?

Amy Sebring: Thank you very much. That was a very good introduction. Now, to proceed to our Q&A.

[Audience Questions & Answers]

Amy Sebring: Elizabeth, if I may ask you, could you outline the process going forward with this report? My understanding is it has been submitted to the President. Will NCD staff be briefing Congress?

Elizabeth Davis: I will answer that as best I can. Actually, since Pat Pound is in our community of attendees today, Pat if you wish to correct me, please by all means, chime in. It is my understanding that NCD, again because of the agency it is and how it is established, and what its role and responsibility is within the government, that it, in fact, must submit its reports and findings to Congress and there is a very strict protocol to that.

It is also my understanding (Martin Gould reported to me the other day from NCD) that the White House sent a courier over to pick up a large box of the actual, physical reports themselves; itself.

We do know that our legislators, our representatives, those who need to also be aware and become informed of these pieces information and findings, are in fact, requesting these reports as those of us in the field are, as well.

To answer the question one more time, it is, in fact, been released to Congress and the White House. It has been released outwardly to the public as well at this point. I believe Pat Pound, in fact, released the report for the first time (and I hope she’ll correct me if I’m wrong) at the recent National Citizen Corps conference just a few weeks ago.

There will be a formal report release coming up, I believe, in early October, and this will keep the issue alive and churning through the beginning of the next legislative session. I don’t think there’s any coincidence of the timing of that.

I would point out also that we have on the Q&A cover sheet NCD’s website, where you can go and actually request copies of the report. NCD has done something, I think, very exciting and interesting. Because of the size of it, they have not relied just on printing the actual physical hardcopy and posting electronically on the web, which can be very hard to download. They have actually published the report on little thumb drives that can be requested so that the report can actually travel with you.

I will point you to NCD for the official answer, but I hope I’ve done a good job with summarizing.

Amy Sebring: Is NCD a member of that Interagency Council, or are they apart?

Elizabeth Davis: They are an advisory to the different federal agencies. The ICC (Interagency Coordinating Council) is a body, a multi-discipline body, if you will, that fits within DHS as the facilitator, as the coordinator of the ICC. That was established under the Bush administration through Executive Order 13347. By invitation, other agencies can participate. That information is actually on the DHS website.

Chip Wilson: Is there or will there be a push to make all temporary emergency housing (trailer types) accessible? Everyone can live in an accessible unit.

Brenda Phillips: That’s a very good question. There have been some efforts done to the Access Board to try to talk to different groups to try to increase the number. There is some dialog going on about that. You know there was a lawsuit over this with FEMA trailers provision with Hurricane Katrina that resulted in a process put into place where people would be able to request those or to request some kind of accommodation be made to them.

There seems to be some limits to what some manufacturers are willing to do in terms of provision of accessibility through their contracts. I think it’s something that needs to be continued to be pursued. I think that there has been more of a good faith effort to try to put more accessible trailers out there, but certainly not enough. I think your point is very well made. When you have a trailer that features accessibility or some kind of universal design element, we all benefit from that, because it’s going to make it easier for all of us.

If we could get those to lead the way, it would be really great. So, it’s a yes and a no. I do know that there’s a report coming out on housing through the National Council on Disability that’s going to talk about the accessibility issue and provide you with a little more detail on that, but that report hasn’t been released yet. Keep your eyes and ears open for that one.

[See also United States Access Board at: http://www.access-board.gov/eth/]

Peg Blechman: Will NCD will be providing technical assistance guidance from this report. If so, will that be in a bulleted format or a brief format? Will NCD be providing training based on this report?

Elizabeth Davis: First of all, probably we should point out that Peg Blechman from the Access Board who probably knows more about the first question from Chip also, so it’s good that Peg is here. I don’t want to answer that incorrectly. I don’t have knowledge of that. Those are very good points worth bringing up, the report is only as good as it is once we finished reading it, or bad as it is once you finished reading it, depending on how you conclude.

But her point is, you need to have technical assistance to follow up for questions answered. I’m not sure what NCD’s plans are in that regard. I would defer to NCD directly, but I think what we can do, Peg, is to take that question (as I said, Pat Pounds is on the line) and we will make sure that she and I both take that question back to NCD and attempt to forward it back to you.

Earl Zuelke: Stakeholders and partnerships are both terms we all have come to embrace in our respective disciplines, mine being Emergency Management. There seems to be reluctance from many in various sectors referred to as "special or functional needs," to engage in functions such as registries! How do we overcome that skepticism or hesitancy?

Brenda Phillips: Ah, registries! Where do we start? That’s a really good question. I’m not sure whether he’s talking about individuals or organizations that might be reluctant. Maybe we should address both of them.

It’s my sense from reading the literature, from reading the proceedings, from going to many conferences, and certainly from research I’ve done in my own area over the years that there are a number of reasons why people might not participate in a registry. One of them has to do with wanting to remain independent. Another one has to do with privacy concerns.

Also, they can be very difficult to keep up to date because people do change their addresses and don’t update on the registries. Sometimes it’s hard to know by what you mean by "special needs". It could be someone who is simply transportation disadvantaged, or it could be someone that is going to need some kind of medical evacuation using very specialized equipment. It could be that the community from an organizational perspective may not have that resource available.

I know that a number of organizations may be reluctant to try to participate in a registry because of the problems of sharing that information across organizations because of HIPPA laws. There are also some concerns about it in terms of the cost it can take to keep it updated and the staff time that it could take.

There’s a wide variation in the kinds of registries we have across the country. There are certainly some problems with the kinds of technology that is used for it. Sometimes our software and databases don’t talk to each other when we try to share information.

There is the classic report from a California Independent Living Center that talked about the registry they had being locked up and not available to first responders who needed it during a wildfire outbreak a couple of years ago.

Registries could have some potential benefit because it’s going to give us a handle on how many people might need assistance and what kind they might need. But then trying to marry the resources we need to actually get people out of harm’s way in what is usually a longer onset event (it’s really harder to use a registry with a rapid onset event)—it’s really problematic.

This is one of the areas where we need extensive research done and we need to be capturing what is going on out there right now with the registries in terms of what’s working, what’s not, what kind of registries are working, and kind of move that forward. It’s certainly a tool where everyone’s trying it out, but we don’t have a really good feel for what works on it.

Elizabeth Davis: The only other point I would add to that (and Dr. Phillips covered the pieces very well there in a short period of time), there’s another factor, too. Since you’ve asked about the overcoming skepticism or the hesitancy to participate, I’m going to take that at the individual level.

We’ve also found that when you go out into the community, there’s often a social identity issue, as well. Some folks just don’t identify themselves as someone with a need to register.

An emergency manager, coming from that perspective for a moment, might feel that this information is so helpful to us as planners so that we can be good responders, etcetera. But the individual in the community, if it’s not explained properly may not see themselves as somebody on a day to day basis who needs to list themselves in anything like this.

It can be the most well-intentioned use of a registry, in fact, but if it’s not explained well or somehow personalized, we have found that the answer to that sometimes, besides the privacy issues and the confidentiality and how far do you share it and all those important things, it sometimes boils down to, "I don’t see myself as an individual who falls into that category or definition".

It does just demonstrate that this is a very complex issue. It works in some places and it does not work in other places. Registries also, just to follow this up and conclude, for individuals as well as some jurisdictions have put together what you might call "lists of lists", or registry of agencies or organizations, which in and of themselves have a handle on a certain constituency or population group.

There are a number of ways of approaching that, as well. We could go on and have another session just on registries.

Carole Totzkay: Thank you for the report. I have reviewed each page in detail to assist in developing a functional needs planning template for our NH regional All Health Hazard POCs. This template will be a support document to local EOPs and regional guidance. The challenge for me has been the mitigation section. I am focusing planners on the Hazard Mitigation FEMA Primers as referenced. In addition, I echo the issues with Recovery. Certainly more needs to be done legislatively.

Brenda Phillips: Thank you, Carole, for the comments. I appreciate the use of the documents, that’s good to hear. With the mitigation section, one of the things that resonated with me, was in looking at the mitigation planning series from FEMA, how that could be revised to be more inclusive of people with disabilities and disability organizations, and even to give people some hints about how to be more accessible in terms of holding planning meetings, and then to give people ideas (maybe pull some ideas from this document for NCD) to demonstrate where people are doing mitigations.

If you do an elevation on the coast, for example, you need to have some kind of ability to make it accessible to people. As we age, we are more likely to develop a disability. Someone who has one now that’s elevated may need one that’s going to have some kind of ramp, maybe a low elevation if that will work, or an elevator could be a possibility (which of course it certainly is extremely expensive).

Also, to take a look at some of the efforts that were done in Baldwin County under ways to try to build a hardened facility to shelter people. Those are some great examples that are specific to people with disabilities or senior citizens.

I want to talk about the Senior Center Safe Center project in Alabama as a good example of trying to provide for some mitigated facilities. There are some isolated examples out there but that is certainly an area where we need to push forward.

Elizabeth Davis: The concept of the Senior Center Safe Center is wise and well and working in both Florida and Alabama, although Alabama has more Senior Center Safe Centers up and running at this point. There is a lot of good information on that, we can point anyone to it offline. If that’s something you’re interested in, please contact us, and we’ll be happy to forward to the right places for that kind of information.

Leslie Little: Either presenter - Has any work been done or currently being undertaken for special needs populations that are non-English speaking?

Elizabeth Davis: I had a little bit of trouble hearing you (I’ll wait for the question to pop up), but what I think Leslie was asking was in terms of overly of certain other conditions and factors, including language issues.

I would actually take that a step further, Leslie, and in addition to asking a question about people who are non-English speakers, readers, or users, you have to also have to also address something we have found in the field recently. I’ll be honest with you, I’m not sure we focused on it quite as much here in this report, but it is referenced in these overlays.

You also have to consider literacy issues—low literacy or no literacy issues. Many times, responders and later, during recovery, social service organizations and case workers do come across time and time again, and you’re right, it’s lost by not being addressed as extensively in the literature as one would hope it would be. This is one of those places where we put a call out to people to bring these issues up to the forefront.

It’s one thing to hand a little piece of paper to somebody and say, "Okay, hi, these are all the places you can go to apply for X, Y, and Z dollars, or benefits or services post-disaster", and an individual recipient is sitting there nodding, as they’re accepting the piece of paper, but in fact, there’s no capability after the frontline person leaves to actually filter and use the information on that piece of paper.

It’s either the language barrier itself, or in some cases, it can be a cognitive or intellectual disability that becomes the barrier between receiving the information, processing it, and being able to take the step forward that you would need to with that information.

So, Leslie, I’m not sure if I addressed your question exactly on that, but this is something that is very important. People with disabilities and people without disabilities have an overlay with literacy issues and an overlay with English.

If you all will permit me to be a little personal here, I’ll use my own father-in-law, when he was alive. As he progressed in age and also progressed in disability, he reverted to his native language, which was Spanish. So, somebody who functioned his entire adult life in this country speaking English perfectly as a professional, in the end was only able to communicate in that language which was most familiar to him.

We find that in disasters, especially traumatic events, can also put people back to that first level of comfort. These are things which you need to take into account—the human element, when we talk about the complexities of the response and the recovery in particular.

Brenda Phillips: A new book has just come out called "Social Vulnerabilities to Disasters", and there’s a chapter in there on literacy issues that was written by Betty Hearn Morrow. Dr. Morrow is a professor emeritus from Florida International University, very well versed in understanding these issues of language and culture and literacy levels, and I would encourage you to take a look at that. [http://www.routledgepolitics.com/books/Social-Vulnerability-to-Disasters-isbn9781420078565]

If anybody listening wants to have additional resources that deal with language, they are welcome to ship me an email, and I would be glad to send some resources out.

J.R. Jones: As a person with Katrina experience in trailer park management, case management, and dealing with an ADA complaint between a Congressional liaison and an applicant, I would like to remind everyone that a mobile home which has a ramp, doors wide enough for wheelchair/bed transit, bathrooms able to be used by a wheelchair user, and a kitchen ADA useable, is a very large unit, and very much more expensive than the standard 1 or 2 bedroom, and requires more space. We must be practical in solutions, and be careful in allocation.


Amy Sebring: From the emergency management side, I think there is some need for guidance in how to overcome the fears, perhaps, of working with individuals in their communities. I was wondering if the report had some tips on that, and has some guidance in that area.

Elizabeth Davis: The short answer is yes. I think you’ll find that in the emergency managers chapter, and Dr. Phillips will correct me if I’m wrong about some of the resources as well,. but since we’re short on time here, I think the main point to make is that emergency managers (if you ask me to take that perspective), if you boil it all down and simplify it to its most base element, our goal is to protect lives, protect property, and the continuance of services.

It says to protect lives; it doesn’t mean protect only certain lives. I think it’s almost standard play at this point to recognize that that means you have to take into account the totality of the demographic of your area that you oversee. That includes people with disabilities, both visible and invisible, chronic or episodic—it’s the whole spectrum.

I don’t think there’s a resistance to that premise. I think that we go back to what Dr. Phillips started us with at the beginning of the hour, and that is what we saw resonate throughout all the materials that we reviewed—really not the lack of willingness to do it, but the lack of support (in terms actual dollars, or technical expertise, or time) to complete it.

I think emergency managers will agree that this is not something that they purposefully do not put on the top of their lists. In fact, survey after survey (and you can look to the emergency managers survey conducted by NOD, National Organization on Disabilities and Emergency Preparedness Initiative as an example of that) 100% of responding emergency managers indicated that this population was top on their list of priorities.

It was almost a completely converse reaction, though, when it came to where were the priorities in terms of the time and money and allocated staff. It flipped. It is often perceived that these are issues that are more time-consuming, laborious, and more costly, and they are. But there seems to be a disconnect in that these issues can also benefit (as we were talking about the universal access), these issues, when worked on, in fact, benefit not only the intended group, but in fact, benefit everyone else by that as well.

It’s a little preachy, I apologize for that. I think you’ll find it more academically addressed in the report. I just hope that last plug there tries to connect the dots with all the different members of the attendee groups we have here today.


Amy Sebring: Time to wrap for today. Thanks very much to both of you for an excellent job, and we hope you enjoyed it. Please stand by just a moment while we make a couple of quick announcements. Again, the recording should be available later this afternoon. If you are not on our mailing list and would like to get notices of future sessions and availability of transcripts, just go to our home page to Subscribe, or subscribe to our RSS Feed or follow us on Twitter.

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Thanks to everyone for participating today and for all the excellent questions. Please join us next time. Until then, we stand adjourned. Have a great day everyone.