1/25/06 EIIP Virtual Forum Transcript: Special Needs Populations in Disasters

EIIP Virtual Forum Presentation — January 25, 2006

Special Needs Populations in Disasters
Katrina and Beyond

Michael M. Weston
Disaster Consultant
U.S. Administration on Aging (AOA)

Elizabeth A. Davis
Founder and Managing Director
EAD & Associates, LLC

Daniel W. Sutherland
Officer for Civil Rights and Civil Liberties
U.S. Department of Homeland Security

Avagene Moore
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]

Avagene Moore: Welcome to the EIIP Virtual Forum! We are pleased you could join us today! Today's topic is "Special Needs Populations: Katrina and Beyond." We are most fortunate to have three very knowledgeable people as our speakers today.

It is a pleasure to introduce our guest speakers. First in our lineup is Michael Weston, President of Servision, Inc. Mike is the former and founding Director of Disaster Planning and Operations for the State of Florida's Department of Elder Affairs. He currently serves as a Disaster Consultant to the US Administration on Aging (AOA) and in that capacity has been tasked by the Department of Homeland Security as the Federal Coordinating Officer over recent presidential declared disaster events. Most recently he deployed to the Gulf Coast region as the Director of Field Operations for AOA during hurricanes Katrina and Rita.

We welcome back our second speaker, Elizabeth Davis, JD, EdM, EAD & Associates, LLC founder and Managing Director. Elizabeth is an internationally recognized and published expert in the fields of emergency management and special needs planning. The first Director of the National Organization on Disability's (NOD) Emergency Preparedness Initiative (EPI), she is now an advisor to the US Department of Homeland Security and the Federal Emergency Management Agency. Elizabeth co-chairs the National Hurricane Conference's Health Care/Special Needs Committee, chairs the International Association of Emergency Managers' (IAEM) Special Needs Committee, and sits on the Advisory Boards of several national disaster preparedness and response organizations and research teams. She brings more than a decade of passion, dedication, experience and accomplishments to her work.

Last but not least on our panel today is Daniel W. Sutherland who was appointed by President Bush to serve as the first Officer for Civil Rights and Civil Liberties at the US Department of Homeland Security. This unique position calls for Mr. Sutherland to provide legal and policy advice to the Secretary and the senior leadership of the Department on a full range of issues at the intersection of homeland security and civil rights and civil liberties. Dan has been a civil rights attorney throughout his legal career, serving fourteen years with the Civil Rights Division of the US Department of Justice and nearly two years with the Office for Civil Rights at the US Department of Education.

If you have not read the background page, I urge you to do so after our session today to learn more about our speakers' respective expertise and experience. Mike Weston, Elizabeth Davis and Daniel Sutherland - we welcome you to the EIIP Virtual Forum today. Mike will speak to us first. Mike, I now turn the floor to you for your formal remarks.

[Presentation]

Mike Weston: Good day to all in the Virtual Forum. If asked to title my remarks today, I would call them "Aging Network Answers Unmet Need: Concept Becomes Reality." A response capability that would be necessary to utilize during catastrophic events was first contemplated when I directed emergency services for the elderly in a large metropolitan service area. When I became Florida’s first and founding director of Disaster Planning and Operations in the aftermath of Hurricane Andrew, the concept was further refined.

Now, as I am utilized as the Director of Emergency Field Operations for the United States Administration on Agency, the dire and overwhelming events of Hurricane Katrina necessitated that concept become reality. For illustrative purposes we will explore Florida’s Emergency Mutual Aid Compact (EMAC) response and support of the State of Mississippi’s aging network. Bearing in mind that the legendary work Texas did for Louisiana is another fine example of cooperation between States.

These recent events further justify the creation of nation-wide aging strike-force capability. It will be the key to coping with the number of victims that we have been told to expect in a large catastrophic event. This will be a system that will convert senior centers into treatment centers for people with special needs and train independent elders to become first responders. We must recognize that we do have the strength to overcome these extremely stressful events. However, if we fail to act, then what is left unchecked will immobilize and delay help getting to where it is needed most.

Fundamental to the evolution of this system is the key placement of trained personnel (lay and professional) that can only expedite the triggering of the response mechanism in the likely event that an activation would be indicated across the expanse of the aging network. A strike-force capable, with mutual aid as its foundation, will by design operate in conjunction with other disaster response systems, yet still have to be self sufficient and self-sustaining. The mission is to alleviate individual suffering and organizational despair experienced by the local aging network due to a sudden disaster or other devastating event.

This strike force will provide a quick response team of trained responders that will assist and assess new, as well as, existing clients in an area affected by the catastrophe. The development of a parallel emergency management team at the national level would also provide relief to the administrative structure of a community in the event that its programmatic capabilities were significantly damaged and rendered incapable of functioning.

Within 72 hours of Hurricane Katrina’s landfall, the U. S. Administration on Aging (AoA) deployed a federal Disaster Response Team (DRT) directly into the hardest hit areas. The following is based on our Mississippi response only. The AoA DRT included two disaster experts (Mike Weston & George Tokesky who were recruited directly from Florida by AoA.)

Based on the front line assessments and the resulting recommendations from the DRT, the State of Mississippi formally requested direct aging network assistance from the State of Florida through the EMAC.

In response, the Florida Department of Elder Affairs recruited, deployed and managed teams (72 staff persons total) of aging network staff to blanket the hardest hit areas and to conduct rapid needs assessments of elder hurricane victims residing in the community, shelters and/or health care facilities.

The Florida teams included aging professionals from the Department of Elder Affairs and the Long Term Care Ombudsman, mental health counselors from the Department of Children and Families as well as federal public health nurses. The teams were deployed at one-week intervals for a period of 4 weeks. Some of the deployment teams’ actions included:

conducting rapid needs assessments and referrals
provision of emergency food, water and supplies
assisting with relocation
on-site medical treatments
crisis counseling
populating cruise ships used as shelter
arranging for aging services

In addition to the deployment teams, the Florida Department of Elder Affairs also donated computers to the Mississippi Unit on Aging to replace the local computers damaged or destroyed during the storm.

This strength and endurance is founded on the principles of Command, Control, Communication, and Cooperation. Even at its formative stage, the fact that agencies and organizations at the national, state and local level are shaping and sharing a single vision will insure that this concept will advance and evolve. A worried and nervous nation needs assurance that, even if we fail to prevent the next event, we will survive it. EMAC transcends being yet another plan, but in truth is a product that possesses joint ownership that in turn gives it its operational capability.

This concludes my formal remarks. I turn you back to our Moderator.

Avagene Moore: And now, we will hear from Elizabeth Davis. Elizabeth, please.

Elizabeth Davis: Thank you, Avagene. And thank you Mike for the work you have done and for taking the time to share some of your experiences with us. I will spend the next few minutes sharing information about another unique experience that occurred in response to Hurricane Katrina – the SNAKE (Special Needs Assessment for Katrina Evacuees) project.

My firm, EAD & Associates, LLC was approached just days after Katrina hit the Gulf Coast, to coordinate and deploy rapid assessment teams to each of the four states greatly impacted: Louisiana, Texas, Mississippi, and Alabama. Our client was the National Organization on Disability (N.O.D.).

The singular purpose of the project was to capture a snapshot in time through a representative sampling of experience and observation on the ground. The capture and analysis of information we presented in a full report to our client enabled that information and the findings to be disseminated to appropriate authorities. This resulted in not just marking issues for further review but more importantly listing systemic issues in need of immediate attention/rectification in order to meet the disaster needs of hurricane victims with disabilities.

We used a unique approach to form the teams. Each of the four teams was made up of 3 professionals: two seasoned emergency managers paired with one special needs subject matter expert. The teams were purposely set up in this way so that the assessment would be richer by combining the knowledge of "both sides" of the issues. This also helped the teams to gain access in a variety of locations to capture great amounts of information in a short period of time.

The teams were not deployed to be involved with the process or to resolve problems (which was difficult as most of the team members are used to being involved as actual first responders). Instead, the teams spent three days on the ground observing and collecting data at shelters (including medical needs shelters), Emergency Operation Centers, FEMA recovery centers, etc.

They interviewed professionals in the emergency management field (at the local, state, and federal levels) and those working or advocating directly with the special needs populations (people with disabilities, seniors, or individuals with medical needs). They were guided by questions formatted in survey forms that were created prior to the deployment.

Simultaneously, the surveys, as completed, were sent to an analysis team, made up of experts in this area (not acting in a capacity affiliated with any specific organization or agency). The benefit was that the analysis team could take the real-time information from the teams, and begin to compare findings across state lines. This allowed them to identify systemic issues that were occurring in multiple locations. They were able to "see the big picture" which is impossible to do when you are on the ground.

The client’s final report, with findings and recommendations can be downloaded in full at http://www.nod.org/emergency. To give you an example of some of the findings, here are three that I think are incredibly important:

1. In each state, there was often no designated entity or individual, at any level, to "own" and coordinate disability and aging issues. 85.7% of community-based organizations interviewed who work with disability and senior populations answered that they did not know how to link with the emergency management system.

2. Assistance provided to disability and aging populations often over-emphasized a medical model instead of independent living or advocacy models. This perspective resulted in some people being separated from families and support networks and transferred unnecessarily to medical shelters or nursing homes. Others were not identified because of the lack of trained eyes as well as the lack of or inadequate screening questions. This caused some individuals’ conditions to deteriorate to the point that they did require transfer to a hospital, nursing home, or medical shelter.

3. Disability and aging specific organizations, heavily involved in the Katrina response effort are reporting that their usual operating budgets have virtually been depleted as a result of disaster services provided to meet immediate needs.

As we look for ways to address these and other systemic issues (identified in Katrina as well as after many earlier disasters across the nation), I think it equally important to consider what structures already exist within the national response system and how can modifications be instituted so to be more inclusive of the special needs populations. For example, Mike illustrated how EMAC can be effectively utilized to bring in a very specific and necessary skill set, the aging services network in this case, but extend that concept even further to include disability agencies/organizations for instance.

Another example we can draw on from the response to Katrina is in the case of the donations clearinghouse that was established by DHS. At first, this clearinghouse did not include specialized items such as durable medical equipment (DME), for example, but once this was realized it was expanded to include these types of items. I am sure Mr. Sutherland will speak to this point in more detail.

Lastly, I draw from an example during 9/11. Upon request by the FEMA Federal Coordinating Officer in NYC, two questions were added to the intake interview process specifically dealing with special needs to enable self-identification. A special needs sub-unit, made up of personnel more highly aware and trained in special needs issues, would handle any applications that were flagged for one-to-one special needs follow up under this system.

The two things I draw from the prior examples are:

1. Look to enhancing existing emergency management standards and protocols to be more inclusive and to meet the concerns of individuals with special needs.

2. Take practices that are successful and effective, and codify them as standard operations procedures moving forward to avoid recreating solutions each time.

With that, I thank you for your interest in this important topic area and pass the session along to Dan Sutherland.

Avagene Moore: Dan Sutherland, we turn the floor to you at this point, please.

Dan Sutherland: It is a pleasure to join this outstanding panel, and to talk with all of you via this unique forum. The topic we are talking about today is incredibly important. Why do I say that? Consider that approximately one-fifth of the people in the Gulf Coast region affected by the hurricanes were people with disabilities. Putting that a different way – Census Data showed that over 250,000 residents of the city of New Orleans were categorized as people with disabilities. I can give you more details on those numbers; drill down a bit. But the bottom line is that many of the people most severely impacted by these hurricanes were people with mobility impairments, cognitive disabilities, mental illness, serious medical issues, and those who are deaf and/or blind.

I am talking to you today as the Chair of the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities. I am also the Officer for Civil Rights and Civil Liberties at the Department of Homeland Security, which means that I lead a team of people who provide legal and policy advice to the Secretary on issues at the intersection of homeland security and civil rights/civil liberties. We work on a number of important subjects, such as intelligence reforms, immigration law and policy, and relationships with Muslim Americans. We also work a great deal on issues affecting the disability community.

In July 2004, to mark the fifteenth anniversary of the Americans with Disabilities Act, President Bush issued Executive Order 13347, "Individuals with Disabilities in Emergency Preparedness." The President created an Interagency Coordinating Council ("the Council" or "the ICC") to implement the goals of the Executive Order. Over twenty federal agencies have been actively involved in the Council.

The Secretary of Homeland Security is the ex-officio chair of the Council, and he has delegated that responsibility to the Officer for Civil Rights and Civil Liberties. Prior to Hurricane Katrina, the Council completed a number of important projects, including: a report on evacuation planning for workplaces, a web-based resource center for first-responders and people with disabilities, grants to disability consumer organizations, and a major national conference.

When Katrina made landfall, the Council immediately became the focal point for concerns raised by the disability community in the Gulf Coast and around the country. The Council created an Incident Management Team, which met via telephone and in person with people with disabilities, their families and advocacy organizations on a daily basis for several weeks.

In late September, Secretary Chertoff directed the Officer for Civil Rights and Civil Liberties to assign a specialist on disability issues to the staff of the Principal Federal Officials in Baton Rouge and Austin. Those individuals were deployed for several weeks in October and November 2005.

The issues involving the disability community have been numerous -- because there were so many people with disabilities affected -- and complex. Take for example, the issues surrounding people with diabetes or epilepsy, who were no longer able to quickly get their needed medications. There were issues surrounding people who use wheelchairs -- I remember receiving a frantic call from one of the stadiums in Houston asking me if I could get 100 wheelchairs to them immediately. There were issues involving people who are deaf or hard of hearing -- many times they could not get necessary information about the evacuation, or about registration, etc.

I know that you are thrilled to know that the federal government has a committee who is looking at this problem! But this is an unusual committee, and we've been able to get quite a bit of good work done.

Many know that the largest urban areas are now being required to assess again their plans. They are being asked to do a self-assessment, and then teams of experts are being sent in to independently review each city's plan. Secretary Chertoff has been clear that these plans will be evaluated, in part, on how they are addressing the needs of the disability community.

We are also going to be pushing the disability community to enhance its efforts to prepare. We are going to be emphasizing that, just like all Americans, Americans with disabilities need to "have a plan" and need to "have a kit." We need to dramatically increase the level of preparedness among this community. I look forward to communicating with all of you about ways that our Council, and our Department, can better address these issues. Thanks.

Avagene Moore: Thank you, Mike, Elizabeth and Dan. We will now turn to questions from our audience.

[Audience Questions & Answers]

Question:
Carl Varner: Does the panel have any examples of large jurisdictions (1,000,000+) that have begun to successfully develop and or maintain special needs registries? What are those jurisdictions as Fairfax County would like to be in touch with them?

Elizabeth Davis: First, I want to note for everyone that a special needs registry, be it for a small area or large, is proportionately just as complex for every jurisdiction. The basic elements that MUST be incorporated include:

ongoing funding that can't be cut budget to budget;
consideration of privacy issues and confidentiality;
where it will be maintained and how often updated (only as good as it is fresh);
what is the expectation based on that registry?

Will it be used only for planning demographic purposes?
Will registrants get info before each season?
Will those on the list actually get a call before or during an event?
Will there be a service like a ride pick up or a preset shelter entry process or the like?

These all and more MUST be considered before any system is set in place for a small rural area or a large urban setting. This is why I encourage you to look to systems like the mandated county registries in Florida or some of the local ones elsewhere that are less formal, but do so after putting together a review committee made up of both agency officials and planners as well as representatives from the intended registrant population as well.

Mike Weston: In Florida, all 67 counties large and small maintain registries

Question:
Robert Lawrence: To all: do you or anyone else know of multiple localities (e.g. a region in a Commonwealth or other) that are addressing special needs in a unified manner?

Elizabeth Davis: Well, I suggest you look to NJ OEM out of their state police because there the state level developed a format for local Special Needs Advisory Panels (SNAP). They are looking to be sure that they customize for each local need, demographic, and resource, but that they also be able to "talk across the table" to neighbors in the region. Also, you just read about Florida, and the same is true in all the 10 health regions in Illinois. There is activity in this way all across the nation now.

Mike Weston: Florida established the first statewide taskforce and has recently re-established it. George Tokesky who is with us is involved with that process.

George Tokesky: The State of Florida's Interagency Committee on Special Needs Sheltering is currently addressing each of the issues addressed in Elizabeth's comments, as well as the questions presented thus far.

Question:
Tina Janek: Mr. Sutherland: will there be any efforts to define "special needs" at the federal level?

Dan Sutherland: I am not sure that is the most productive path for us to embark upon. What we are doing is emphasizing that the term "special needs" covers a huge territory. That is, it involves people with limited English proficiency, it involves seniors, it involves children, etc. So, if we want to get people to focus on the disability community, we need to be more specific than the term "special needs."

Elizabeth Davis: For a discussion about the term debate underway look to the March and April issues of the Bulletin published by the International Association of Emergency Managers where a guest piece by June Kailes is published, and/or look for a white paper on it posted on the Nobody Left Behind project site out of Kansas University.

Question:
Craig Irwin: In catastrophic events like Katrina, how do you recommend that Emergency Managers identify previously independent elderly and marginally disabled, that have become "Special Needs" persons as a direct result of the disaster, but who are still in their homes? People that would not show up in an existing registry; off meds, etc.?

Mike Weston: Use your regional Area Agency on Aging, local service providers or CERT Teams or Crime Watch Programs.

Elizabeth Davis: Ok, very complex but great question. We need to get creative, first working with the existing marginal services which SUPPORT independence like home based care for those able to live independently with some support. Work with meal delivery programs and private transport company providers, even work with pharmacists who (yes, tons of confidentiality issues so just go with this for a moment) are in a position of knowing their usual clients. If trained, that crew can quickly call out to their client base as check in. The point is there is no single great answer as each disaster brings different barriers, but reaching people through their nexus of support and thinking of ways and places to reach people not traditionally incorporated is where we now have to explore.

Question:
Paul John: Elizabeth: Can exercised drills help in identifying best practices that are successful and effective?

Elizabeth Davis: Oh thank you for asking that!!!! Can you tell how excited I am? Drills ARE the time to test our ideas and find our hiccups--not during actual events. The reality is that it is not always possible, I know, for those emergency managers out there. Again, please see the IAEM newsletter issues as there is a piece I wrote along with Mike Byrne on just that benefit to all citizens AND responders.

The point is that I would encourage -- strongly encourage -- special needs (by whatever you want in that definition) to be included in all aspects of all drills, even if the outcome or goal is not measured directly, as it will test and trip the system. Include the subject matter experts in the drill design, individuals as role play victims, and also as evaluators and responders, and in the after action report evaluations.

Mike Weston: I recommend full multi-agency exercises rather than tabletops. They can give you a false sense of security.

Question:
VT Emerg. Mgt.: Self-identification has always been a problem for us in Vermont. We recognize that individuals with special needs often do not want to be part of a registry, and are now trying to promote self-identification through the various home help agencies; however we have been less than successful. Have you heard of any programs that have been successful in creating a near-comprehensive registry? Moreover, at the conclusion of today's meeting, could the speakers provide contact information? Thank you.

Elizabeth Davis: May I offer a reality check in two parts:

1. No registry no matter how good is 100% -- I will bet my name on that.

2. There are many other forms of "registries" that combined can give a better picture. These include the life sustaining customer lists required by Public Service Commission of utilities, plus nuclear plant plans under SARA, and even the local parish list. All pulled together (with a system and protocol to do so in a certain event) gets you closer. More offline if needed; [email protected].

Mike Weston: As registries go, there is no one size fits all and at-risk clients are fearful of exposing them selves. Community education is required. I can be reached at [email protected].

Question:
Jean O'Hare: To all: first, what can be done about Life Care Communities and nursing homes not having adequate evacuation plans, even for a fire? And second, and this may be a follow up to Robert's question, is there a coalition/program of which any of you are aware that is already in existence that is coordinating efforts, including legal assistance, for the communities affected by the hurricanes, for people with disabilities or that have special needs?

In particular, I would be interested in any programs for hospitals and nursing homes that may need additional funds because they may have expended money for transportation or clean up and are now providing assistance but are strapped financially. And I would be interested in programs for individuals who will need special equipment in any home they rebuild.

Elizabeth Davis: Many front line service agencies have found their capital budgets and operational budgets gone as a result of just doing what was needed. This was one of the SNAKE report findings even just 1.5 weeks into it, so I know that message is out there. The Christopher Reeves Foundation gave money to such groups to keep going. I know of a few others but nothing on a national scale.

Question:
Mary Teeters: Mike or Elizabeth: granted that no registry can reach 100%, but are there existing emergency plans that reach special needs populations that perhaps do not have a phone and/or cannot read to alert them of a potential disaster or where to go for assistance? How does Florida handle this population? If we have a system in place that reaches those most at risk, it seems that all will benefit.

Elizabeth Davis: To watch for new research on this very topic check the Access Alerts project out of WGBH in Boston and the Project Safe EV-AC out of West Virginia University.

Mike Weston: That's why I like really getting to know a community street by street. Caseworkers in the Aging network know their communities and should be a good resource to that "hidden" population.

Question:
Marianne C. Jackson: How should FEMA's federal disaster Special Needs experience and resources be integrated into state, EMAC, DHS, and other initiatives?

Dan Sutherland: Yes, first thing though -- people can contact me at [email protected]. You can find out more about the Interagency Council I chair at [http://www.dhs.gov/dhspublic/interapp/editorial/editorial_0591.xml]. That website [http://www.dhs.gov/dhspublic/display?theme=14&content=4616] also has some great resources (which we will build upon). I hope you will contact us!

Marianne, as a Council we are preparing an after action report -- what were the problems that were exposed in the system, and then what are some constructive solutions that we can recommend? We have realized that this type of report has been done several times in the past -- after 9/11, even as far back as Hurricane Andrew.

Comment:
Victoria Melvin: Comment to all: the Red Cross is working to present preparedness messages in a manner that assists people who fall into the special needs category and/or their caregivers to self-identify and then find information and details such as mentioned -- "how to shelter in place", be prepared specifically for their personal situation, etc. Also, as Elizabeth mentions, reaching people at their point of support/organization/communities is very important. That is the issue, in fact, REACHING everyone! I agree with Mike!

Question:
Amy Sebring: Dan, there is new legislation in the Senate to create a position for Disability Coordinator in DHS (see session Background Page for link). Did DHS help to draft this legislation, and is there any possibility it will pass before the 2006 Hurricane Season?

Dan Sutherland: Thanks for the question. No, we did not help to draft the legislation. The position of a disability coordinator within our Department is already there -- it is me. We really need to be about the business of implementing the changes that are so obvious and so necessary. We're preparing an after action report and hope to see some really important policy changes.

Question:
Sue Englesby: Mike, do you know when AoA will have their Emergency Preparedness for the Aging Network 'manual' available? Nearly 1 1/2 years ago we heard that the updated version was under-going final approvals. The manual currently on their site is from 1995.

Mike Weston: I am pushing hard for it to be released I hope I can get it released within the next couple of months I will be sure they hear your plea.

Jerry Blasingame: Mike, Tennessee is also interested in an updated version of AoA's manual.

[Closing]

Avagene Moore: Thank you, Mike, Elizabeth and Dan! We greatly appreciate your effort and time on our behalf and wish you well as we continue to work on this important issue. Please stand by a moment while we make some quick announcements. 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.

We have one new EIIP Partner to announce today. We welcome the Edwards Disaster Recovery Directory http://www.EdwardsInformation.com. The business is located in Brookline MA and Mr. Doug Tanger serves as the Point of Contact (POC) to the EIIP.

If you are interested in becoming an EIIP Partner, please see the "Partnership for You" link on the EIIP Virtual Forum homepage http://www.emforum.org . Again, the transcript of today's session will be posted later today and you will be able to access it from our home page. An announcement will also be sent to our Mail Lists when the transcript is available.

Thanks to everyone for participating today. We appreciate you, the audience! Before you go, let's thank our speakers today for a fine job! We are adjourned.