EIIP Virtual Forum Presentation - September 29, 2004

Emergency Preparedness Initiative (EPI)
National Organization on Disability

Elizabeth A. Davis
Director, Emergency Preparedness Initiative
National Organization on Disability

Amy Sebring
EIIP Moderator

The following version of the transcript has been edited for easier reading and comprehension. A raw, unedited transcript is available from our archives. See our home page at http://www.emforum.org

[Welcome / Introduction]

Amy Sebring: On behalf of Avagene Moore and myself, welcome to the EIIP Virtual Forum! Today’s topic is the National Organization on Disability’s Emergency Preparedness Initiative (EPI), focusing on preparedness for people with disabilities. Our session is especially timely, since a conference on this topic was held just last week and we will hear about the outcomes today, as well as the history of the Initiative, and resources available to emergency preparedness planners.

Now, it is my pleasure to introduce Elizabeth Davis, Director of the Emergency Preparedness Initiative. Ms. Davis brings extensive experience in both disability policy and emergency management work. She provided emergency assistance at "ground zero" at the World Trade Center during and after Sept. 11. She has worked since then with the Federal Emergency Management Agency (FEMA) and the New York City Office of Emergency Management as the Special Needs Advisor.

Prior to opening her special needs consultancy, EAD & Associates, LLC, Ms. Davis was for more than four years Special Needs Advisor: Emergency Management Planner with the New York City Mayor’s Office of Emergency Management, where she incorporated disability access standards into the city’s emergency contingency plans, drills and outreach programs. Please note that the Background Page for today’s session has further biographical information, as well as links to some relevant resources on today’s topic.

Elizabeth, welcome to the Virtual Forum, and I now turn the floor over to you to start us off please.


Elizabeth Davis: Good afternoon. I am pleased to be with my colleagues from the local emergency management community as you afford me an opportunity to share with you information about emergency preparedness efforts and people with disabilities and other special needs.

The first thing I need to do is define the terms we might use today. I will use a traditional and somewhat narrow definition of "Special Needs" (SN) today and that will simply include people with disabilities (PwD), the age spectrum (pediatric to geriatric), and medically managed persons.

I will usually make statements about persons within a community even with some level of services but if I refer to institutional services (i.e. skilled nursing homes, assisted living facilities, group homes, etc.) I will set that apart. When I use the term "Emergency Management Community" (EM) I will mean first responders, planners, and managers - all those who make up the community of professional emergency services.

While I do run my own emergency management and special needs consultancy, I am with you today representing one of my clients, The National Organization on Disability (NOD) for whom I am privileged to Direct their Emergency Preparedness Initiative (EPI). To find out more information about NOD and/or its EPI, I invite you to visit http://www.nod.org/emergency.

Now I would like to briefly outline the evolution of EPI and what it has available to you as EM professionals as you start, or continue, or validate your efforts to include SN populations in all levels of your efforts. I will then list but a few good resources I would recommend to you. I will point out a few highlights from the first "Conference on Emergency Preparedness for People with Disabilities" just concluded in DC last week. And finally I would like to open a dialog with you as we move ahead.

The tragic events of September 11, 2001 prompted N.O.D. to immediately form a task force comprised of U.S. government officials, disability community leaders and disaster relief groups to identify the special needs of people with disabilities during emergencies and to recommend action. The initial findings of the task force were supported by the results of a Harris Poll commissioned in November 2001 by N.O.D. that showed people with disabilities to be less prepared for their own survival in the event of a disaster. The poll also found people with disabilities to be more anxious about this gap than their counterparts in the general population.

Armed with this preliminary information, N.O.D. sent letters to every governor, mayor and federal agency head as well as to the White House urging the inclusion of the disaster-related needs of people with disabilities in all levels of emergency planning.

From this task force grew the realization that as tragic as September 11th was for this entire nation, natural and technological disasters can occur somewhere on a daily basis and that preparedness for people with disabilities, just like for the general population, needs to be continuous and ongoing. Thus, funds generously provided by the Mott Foundation and others enabled N.O.D. to formally establish the Emergency Preparedness Initiative as a full program.

Simply, the purpose of the Emergency Preparedness Initiative is two-fold:

  1. First, to ensure that people with disabilities are included in the planning process at all levels to offer their insights, direct knowledge and resourcefulness, thereby contributing to the overall effectiveness in all four phases of emergency management.

  2. Second, to ensure that the emergency-related special needs of people with disabilities are addressed in order to minimize the impact of disasters on them and to enable response entities to make proper decisions and make the best use of available resources.

EPI, therefore, acts as a repository of information for both members of the disability community and the emergency management community but also functions as a "matchmaker," putting the two groups in contact as they partner in their important preparedness efforts.

It is important to realize that people with disabilities, even more than other demographic segments of the population, are not a homogeneous group. While for one individual with a disability a particular emergency may not generate any disaster-related special need, for another, the particular emergency might aggravate an existing condition or a reliance on a greater level of assistance from others might occur.

There is no single answer to the question what do we need to do for the SN community. Each individual, their needs and their abilities are different and emergency conditions are different. Location may also make a difference. EPI points out that the disaster message for people with disabilities is exactly the same as that for the general population: be prepared. The difference is that an individual with a disability is in the best position to know his or her level of ability and the gap that needs to be filled during an emergency, and that more preparedness steps and/or assistance levels might be necessary during the response and recovery phases.

While many emergency authorities have already recognized that if their bottom line is to save lives then all people’s needs must be accounted for, others are just now embarking on making that a reality in their planning efforts. EPI encourages this continued effort.

EPI, as mentioned, is a repository of information on the subject. We did not wish to reinvent the wheel as there is really good material available already so when you visit the EPI website, you can find the information best suited for your needs or based on your perspective. We have labored to list information in useful categories (e.g. for the general population, for professionals, etc.). We did notice early on, however, there was an articulated need from within the EM community for basic information that could be the basis from which planning began. This was a desire to "speak the same language," so from that we published the EPI Guide On The Special Needs Of People With Disabilities for Emergency Managers, Planners & Responders. A copy is available online at: http://www.nod.org/pdffiles/epiguide2004.pdf.

We recognize that there is a lot of information available to the general public about disaster preparedness and emergency planning. We point out to individuals with disabilities that our responsibility to ourselves and to the communities in which we live and work must include our commitment to preparedness. We also make the point that people with disabilities may find some disability-specific information, and we can look at the general messages and instructions and adapt them to our abilities and needs. EPI pulls together preparedness information from a variety of sources and makes it available to those who need it.

We knew that while there were examples of great efforts and programs across the country, some authorities responsible for their local emergency planning and response efforts weren’t equipped to extend those services to include people with disabilities. After September 11th, we were inundated with calls and e-mails from jurisdictions just embarking on emergency planning efforts, some seeking direction to maximize their outcomes with strained staff and resources. In response to this very obvious need, EPI drafted and published its first guide in 2002.

We decided to offer a publication that highlights key disability concerns and assists for emergency personnel with general planning guidelines. We also wanted to provide a resource list that would lead them to more detailed information. In the most immediate way, EPI felt a guide developed for those in a position to implement change in their community would have the most impact. This is why in the Guide, and in all our communications, we advocate for the partnership between the emergency management and disability community so both can bring their strength, knowledge and resources to the table.

Since this first guide was developed primarily for members of the emergency management community, our distribution plan focused on that target audience of end-users. We printed 35,000 copies on the first run and a box of 100 was sent to the Director of every State Emergency Management Office, with instructions suggesting dissemination to county and other local Emergency Management Offices within their state or territory. Since then, we have updated and reprinted the Guide and we are embarking shortly on what will be the third reprint!

The Guide really is a great starting point for planning efforts in this area, but there are notable other important documents and materials to be highlighted. These include but are not limited to:

  • "Emergency Procedures for Employees with Disabilities in Office Occupancies" (FA 154) and its companion piece, "Orientation Manual for First Responders on the Evacuation of People with Disabilities" (FA 235), both from FEMA/USFA;

  • a state training course from FEMA "Emergency Planning and Special Needs Populations" (G197); and

  • "Emergency Evacuation Preparedness: Taking Responsibility for Your Safety" from the Center for Disability Issues and the Health Professional.

And additionally, the US Department of Justice just issued a very important guidance document "An ADA Guide for Local Governments: Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities." All these materials and documents can be located and or linked from the EPI website for your convenience.

Last week, NOD/EPI was honored to be allowed to organize, on behalf of the National Capital Region and the US Department of Homeland Security, the first "Conference on Emergency Preparedness and People with Disabilities." The conference registration was closed early at the 400 cap and still we, unfortunately, turned away an additional 300 people. With standing room only in several sessions, and an audience of attendees from local EM, federal agencies, the business community, as well as the system networks within the disability community, the message was loud and clear: this is an important area of interest that is finally drawing attention.

Now that the conference has concluded, we are tasked with pulling all the materials, presentations, references, and other documents together in a "virtual binder" so that in the next few months all the benefits of this gathering will be available as a resource tool to not only those who attended, but importantly, to anyone interested and working on these efforts. For now, please visit the EPI Website to link directly to a Web archive of all of the general sessions and most of the workshop sessions. We hope this will be of immediate use to you.

Having said all this, the true measure of success will be seen over time when every jurisdiction’s emergency plan incorporates the unique disaster-related needs of people with disabilities within their comprehensive emergency plan and, should it ever be acted upon, the time put in before the use actually has a positive impact on life safety.

Thank you for this opportunity to share this information with you today, and I will be happy to address your questions. For that purpose, I will now turn the session back over to our Moderator.

Amy Sebring: Thank you very much Elizabeth.

[Audience Questions & Answers]

Burt Wallrich: Elizabeth, do your materials talk about the need for emergency managers to work with disability organizations, like Independent Living Centers [ILC], as a way of reaching the individual SN person?

Elizabeth Davis: Yes. Not only the Guide itself and all other materials, but when an EM is visiting the site itself for information, they are directed to find SN and PwD within their community. This is started with a contact to their local ILC as a great resource.

Jennifer Mincin: Is there information on how public agencies can access grants and funds to support the development of special needs emergency planning?

Elizabeth Davis: Great question! Every effort needs funding, and this is no different. At the conference last week the Disability Funders Network moderated a panel on this issue and we will make all the findings available. But the other important point is that the government be encouraged to include a mandate for emergency preparedness efforts for PwD and SN in ALL their contracts, RFPs, etc., so that it is not a second thought but part of every effort.

Darla Chafin: Alerting is a major concern in our state, and with the diversity of needs, a complicated one. Ideas for/from the deaf community to others with diversified needs that may find EAS messages not easily accessible?

Elizabeth Davis: This is a true statement but I might add that this is why redundant and alternative means must always be included in all notification and alert systems. The most obvious reason to the general population and EM is due to power or system failures, but for many members of the disability community, it is access to information. And that access will enable someone to often make a valuable life saving decision about his/her own safety.

Bottom line is that many technologies exist but can be used in new ways, many systems exist but are still too expensive, and still, low-tech networks among individuals will have to be part of any plan. We need to encourage research, regulations that keep up with technology, basic sharing of information, and, ah yes, even more funding to find better answers to meet all needs.

Avagene Moore: Elizabeth, you said the measure of success would be when everyone’s emergency plan incorporates the unique needs of disaster-related needs of people with disabilities. Do you have any idea how many plans now incorporate this or are lacking in this planning component?

Elizabeth Davis: Interesting time to ask that question. EPI just closed another survey with Harris funded by DHS to, in part, get an idea of that answer. I am right now awaiting the tally and will be reporting shortly the findings, so to that I want to say "stay tuned!"

Hilary Styron: Is there a tracking mechanism in place for SN during disasters? How can we, or the EOC on the ground, monitor their response/recovery efforts to SN during disasters?

Elizabeth Davis: A formal, system-wide mechanism? No, not at this time. But many EOCs, as you know, now have a sub-function within the ESF Human Services role, and/or through their VOAD, to identify and respond to and then track these issues. Beyond that, I would say that I have been privy to much of the on-the-ground type situations as I am in contact with many in the field. It is when they come up for air and can report back and codify the experiences that we all can learn from them. I would just add that I know DHS and FEMA are very interested in this and looking at it more closely now than in the past.

Ray Pena: Dane County (Madison, WI) has had a Special Populations Emergency Planning Committee for years and has done great work. Our biggest problem has been involving agencies that serve SN people. Very few participate in preparedness activities; they have little time for anything but everyday work. Any ideas on how to make this enough of a priority for SN agencies, so that they will participate in greater numbers?

Elizabeth Davis: Great point, and here is how I addressed the same things over a decade ago in NYC when with OEM, and I am sure many of you would say the same.

1. EM must make the first step and effort to reach out to the disability community.

2. EM must set the stage and explain why participation IS part of their daily business.

3. Look to a business continuity model if nothing else.

The post-disaster stats are all too familiar, that is, if the agency (ILC or whatever) can’t plan to survive itself, then what service will be there after a disaster for the clients and constituents? So keep your own house in order in order to provide the ongoing good work you do. Now let’s work together to make that happen. If these groups come to the planning table with EM, both sides will know each other, the needs, the resources, etc., beforehand and everyone is better served.

Without giving names, it was post 9/11 at a community town hall meeting in the Bronx when a director of a disability group I had invited years before to join our task force stood up and stated to the whole audience, "Well, now I understand why she invited me, I wish I had taken her up on the offer." And that group joined the task force right then. But let’s not be in a better late than never situation again. Please.

A.M. Jones: In the California Bay Area, we’ve had several organizations focus on this since the 1989 Loma Prieta quake (PrepareNow.org). We’ve found success with standardized planning for agencies serving PWD (a special curriculum), and cities building these agencies into their response, making response skills a grant deliverable, etc. Was this addressed at the conference?

Elizabeth Davis: Yes, in several of the working sessions this theme came up, and it will now be our job as we enter the deliverable phase of the conference to identify this model for replication. We will do that in the report systems now being worked on.

Hilary Styron: Are there any national standards for Emergency Action Plans, equipment, SOPs, terminology? If so, are these being incorporated into the ODP programs for TT&Es and UASI funding?

Elizabeth Davis: No and no. That is the simple answer. It is often hard, and we can all appreciate this, to set standards when "one size fits all" doesn’t work for this community. Having said that, there can be national guides or parameters from which a) an area can adjust for their regional or local hazards and b) the disability community can adjust based on its make up, needs, and culture.

As to the equipment and funding, etc., well, we talked about the funding support already and as to actual devices, I stand on a soap box along with folks like Peg at the Access Board and June, who point out that we need national safety and performance standards and reviews.

Darla Chafin: We are working with advisory councils, etc., and inviting discussions and round tables at pertinent conferences, but it’s a slow hard climb, particularly in the present economic situation. They are thinking daily survival and just worrying about worse.

Amy Sebring: I gather, based on Secretary Ridge’s remarks at your conference, that a key component of the DHS/FEMA strategy is to focus some efforts through Citizen Corps? What is your opinion of this approach?

Elizabeth Davis: Citizen Corps will be a partner at the table, as I have been told. This is important as several CERT teams made up of PwD are now in formation in WA state and Long Island, etc. But their message also must be that the community must understand the unique emergency-related needs of PwD, as well as to identify ways to incorporate and actively use PwD in a meaningful way, such as trained response members. I know the Director of Citizen Corps agrees, and that was evident at their most recent national meeting where I was honored to speak, and this issue is on the top of their minds.

Linda Underwood: I added a link to the Initiative at http://www.cert-la.com/education/SpecialConsiderations.htm

Hilary Styron: For the workplace do you recommend an Area of Refuge, or that PwD be evacuated simultaneously?

Elizabeth Davis: Hard and complicated question to answer because folks want an easy answer. There will be situations when a building evacuation is called for, and times when shelter-in-place (for all persons) is safer. And if leaving is what is called for, how that is done must be planned. I would direct everyone to the Dept. of Justice as they are interpreting both Titles II and III of the ADA to support this.

But an area of rescue assistance might be the only solution under certain situations. If that is so, then it must have certain supports in place (see much of the Access Board material and USFA material). I still think a good plan can have an area but ALSO have many other options as well. Sorry if this is vague, but it is very hard to give a quick answer and I continue to work with many businesses, firms, facility managers, etc on this one.

Amy Sebring: I know it is early yet, but are you hearing anything positive out of the Florida hurricanes?

Elizabeth Davis: Well, usually the first things we hear are the negatives, and some of these stories are starting to bubble up. We need to remember two things when we have the chance to review the Florida experiences. First, Florida (along with CA and a few others) is the granddaddy of SN emergency planning, especially post-Andrew, so even what fails there is far ahead of many. The trick is to fix it fast and on the ground and then be sure to get it corrected system-wide before the next time.

And that gets to the second point. This year has been a very hard hurricane season, even by Florida’s standards, so there has been little time between hits to learn and correct. I have asked folks I know on the ground there to document the positive and negative experiences as best they can so we can all review them as soon as the dust settles (so to speak).


Amy Sebring: That’s all we have time for today. Thank you very much Elizabeth for taking the time to share this valuable information with us today. We wish you continued success in your efforts. Please stand by a moment while we make some quick announcements:

We have two new partners to announce: District of Columbia Emergency Management Agency, URL: http://dcema.dc.gov/dcema/site/default.asp, POC: Barbara Childs-Pair, Director; and, (speaking of Long Island), Nassau County (NY) Office of Emergency Management, URL: http://www.co.nassau.ny.us/oem/home.html, POC: Terrence J. Winters, Director.

We are very pleased to welcome both organizations. If your organization is interested in becoming an EIIP Partner, please see the link on our home page, Partnership for You.

Again, the transcript will be posted late this afternoon and you will be able to access it from our home page or the background page. We also have a great archive of transcripts, which you can access by topic from the home page.

If you are not currently on our mailing list, and would like to get program announcements and notices of transcript availability, please see the Subscribe link on our home page.

Thanks to everyone for participating today. Great questions and comments. We stand adjourned but before you go, please help me show our appreciation to Elizabeth for a fine job.