Making Improvements for Communities and People with Disabilities

Congressional Briefing

Sponsored by

National Council on Disability

Tuesday, October 13, 2009

(THIS TEXT IS BEING PROVIDED IN A ROUGH DRAFT FORMAT. COMMUNICATION ACCESS REALTIME TRANSLATION (CART) IS PROVIDED IN ORDER TO FACILITATE COMMUNICATION ACCESSIBILITY AND MAY NOT BE A TOTALLY VERBATIM RECORD OF THE PROCEEDINGS.)

>> John Vaughn: You all are like I am, you go to a place like this and you think expensive facility and you think the microphones would work automatically. So much in life does and things like this...anyway, my name is John Vaughn and I'm from Fort Meyers, Florida and I'm the chairman of the National Council on Disability and on behalf of the Bipartisan Disabilities Caucus, I wanted to welcome each of you here to be with us today. I'm excited about this because for one thing we're going to get to share with you about something that's going to save lives. I know that from the bottom of my very heart. It's true about this report, effective emergency management making improvements for communities and people, and as the title implies, this is not your typical report. It's 512 pages and we don't carry it around because we can't get through the baggage limitations if you have them with you when you travel and we put it on thumb drives and if we can arrange to get one in your hands. But this report as the title indicates, is a very proactive or resource book and you're going to be hearing about that today and at the end of the day or at the end of the presentation, I'm hoping that I can give you some action steps that you can take to be a part of this solution.

So I'm excited about that. And I'm also excited that after a hiatus, the bipartisan disabilities coalition is back in business and it's cochaired by Congressman Langevin of Rhode Island and Congressman Fred Upton of Michigan and I talked with Todd back in June and we talked about doing something together and this is the first fruition of that experience.

We're going to ask Todd and Mark Radner's staff for the disabilities -- bipartisan disability coalition to say a few words a little bit later on. What we're going to do here this morning is I want to give you a little bit of background of NCD and how we got into the Homeland emergency preparedness business and we're going to then have a panel of three folks sitting up here to my right, Pat Pound, the vice chair of the National Council on Disability who is also the chair of our Homeland committee. Next to her -- and Pat will be talking to you about the methodology of the reports, findings and best practices. That's the neat thing about this: There's something in here for everybody.

Next to Pat is Elizabeth Davis, the principal and our chief researcher and her firm is EAD and Associates out of New York and she's going to talk about the findings -- excuse me. About the recommendations and initiatives in the report. And then our good friend, Marcie Roth, who is the senior disability advisor for disability issues at FEMA will be talking to us with FEMA's thoughts about this report.

NCD -- oh, and then after that, we'll have an opportunity for Todd and Mark to give us a couple of words and then we're going to open it up for questions for our panel and Mike Collins, our executive director, will be handling that part of the thing. Or that part of the program.

NCD is an independent federal agency made up of 15 members appointed by the president and by the Senate and the NCD is primarily involved in promoting programs, policies, practices and procedures that help ensure that people with disabilities are fully included. It's important that we are an independent federal agency. The agency was founded back in 1978, 31 years ago and for the last 25 years though, we were thrown out of the Department of Education after those people got into a food fight with those people and I think what's good about that is that we have no people telling us what the answers should be, what our research should be. Let's see where the research takes us with our recommendations.

The council is -- we all have staggered terms where we're limited to no more than two full terms and I think the beauty of that is that you're constantly getting this new, fresh look at things. The council, 70% of us and it seems to be historically, not a formula, but about 70% of the members, usually 10, 11, have a disability and the other four or five maybe would have children with disabilities. We have two parents that have children with disabilities and then the other members are people who are stakeholder and from stakeholder organizations. We have a couple of members like that. One from the employment perspective and one from the VR perspective, vocational rehabilitation program. So the council, I think is a very vibrant experience for me. I'm starting my fourth year as chair and we have turned the council over about one half in those three years. So we're constantly getting new ideas, trying to look at things afresh and -- now, NCD is mandated every year to prepare an annual report for the president and Congress. It's the only mandated report we have to do, but this report makes us look at one of the emerging issues out there, what are the emerging issues out there for disabilities, what are the current issues and we also look at that report at the quality of life indicators and try to come up with recommendations that are practical, that will, again, get back to what our purpose is: Help ensure that people with disabilities are included into all aspects of society, including emergency preparedness.

So we do this report every year, and the way we go about gathering our information, there's 15 of us, we live around the country. We have a staff here in Washington of 10 and what we do is we hold four meetings -- by law, we have to have at least four meetings a year. We hold those around the country. We started this about four years ago: Seattle, San Diego, New Orleans, just a number of places. In about 12 days we'll be up in Nashville and then in Houston and Detroit in March -- or April, excuse me. So we move around the country holding these meetings and the focus is we want to hear what people with disabilities have to say or our stakeholders. Our charter requires us to do that.

So these quarterly meetings, we do that. We hear presentations. Certainly back in '07, we were looking -- in '07 and '08 in particular, at disability issues and we would bring in emergency planners to our meetings, people with disabilities from the stakeholders and places like the Key West or the gulf coast so these people can gather input rather than just delivering and going with -- besides that as a source of information, we have got the input from members themselves. We all come from different parts of the country, different backgrounds and we bring perspectives to this whole process.

About 25% of our budget, because with a staff of 10, we're limited to how much research we can be doing and you're going to be hearing from one of our researchers today. We use about 25% of our 3.2 million budget for getting research done. These projects are guided by the council members and each committee is staffed by one of our staff so that we can try to answer the questions and concerns that we might have about things.

Now, at the end of the day, then, NCD generally every year does about three to five reports. Our most recent reports with this Homeland Security report, we just did one on health care and we have got some interesting reports coming up at the first of the year. One where we're looking at this issue of aging population, which means more people are getting older, which means more are going to have a disable. And at the same time, the baby boomers are retiring, many of who are working in those occupations where we're going to be turning to people to take care of the senior citizens so that's going to be coming out.

We use the reports to make the guidance, the recommendations to the Congress, the president, the executive branches and the stakeholders. So that's sort of who NCD is and how we work.

We got involved in Homeland Security back in '03. Pat Pound, Dr. Martin Golden has been our staffer in this area started with the Council looking -- during the Bush Administration after the 911 incidents, looking at how we could be sure that people with disabilities were included in emergency plans. And that first report that was done by that council came out in '05, in the spring of '05, just four months before Katrina hit New Orleans and that report was called "Saving Lives, Including People with Disabilities." And it was interesting because the last time this caucus met with the sponsorship of NCD was just four months after that event of Katrina and Congressman Langevin said of our report, which it was purely pathetic and I'm sure people didn't have the insight of what was going to happen. But the tenets were correct, that we needed to include people with disabilities.

The council did a little bit more work after that, a couple of more reports and about the time I joined the council, we were written into the Department of Homeland Security's bill notice to post-Katrina emergency management reform act.

And the FEMA administrator was given responsibility to hire a disability coordinator and to interact, coordinate, and collaborate with NCD in a number of activities. We finally got funding for that unfunded mandate some eight or nine months later. Just as it was a surprise to be written into the legislation, it was a bigger surprise in '07 to finally get some money to deal with what we wanted to do.

During the last couple of years as we worked the area of the Homeland Security, I asked Pat Pound to chair that committee, during '07 and we got the funding and had that responsibility, we really believed the most important thing we could add was the best practices piece to the pie. And so as we got the funding and we're trying to move forward, we're hearing from communities all around the country, we were trying to figure out what we're supposed to do at Homeland Security to make sure that people with disabilities aren't left behind. And so at this point, then I want to turn it over to the panel because this is about the time now, we have gotten the funding, we have identified the gaps in services and so, now NCD is going to go to work and try and figure out what to do next. So I'm going to turn it over to Pat Pound.

>> Pat Pound: Good morning. Hello?

Okay. Now we're on, I believe.

Okay. Can everyone hear me?

Okay. I'll try to be still and talk right.

Good morning. I appreciate the sponsorship of this meeting and appreciate you all attending. I might add a couple of historical notes to what John mentioned. One of the conferences I went to recently that had a speaker that talked about Homeland if security and what she said what people remember about speeches is stories and I put a big check mark in my notes. Of course you do that strangely in braille, but I did because our '05 report, there wasn't a lot a historic research. So we check a lot to have stories of people with disabilities so the '05 report called saving lives that John was talking about was filled with stories so I think the new report which we're going to be talking about and used in conjunction with the '05 report is dynamite because you have the best of both worlds and I will tell you, we don't aim to be prophetic again. We didn't hypothesize anything in this report, so you don't have to worry about what might happen, now that we have published the report.

The report is big. I'll go ahead and hold it up for you. I get the chore of doing this -- (Laughing) -- so you see it's rather large. It does have very nice tabs and it is very easy to find things, so if you prefer reading in print as opposed to off of the computer, then call the office and you can get one with the nice tabs in it.

However, the file on the internet is wonderful. You can move around and file things and it's very well organized, which I'll get into in here in just a minute.

As John said, we wanted to -- we have identified a gap and the gap was the lack of availability of best and promising practices, both in the availability and the replication of them in communities and regarding people with disabilities.

So we set out to deal with that gap and to find out how people with disabilities appear in the emergency management paradigm and what exist today or what doesn't exist today and needs to exist. Well, we certainly found a lot of those things out.

One important thing to note is that we didn't have any pre-set findings or conclusions ahead of time. The research leads to the conclusions in this report, so I think you'll be able to track it back and know that all the findings are justified as are the recommendations.

The research team has gone further than collecting and analyzing research. They then presented practical ideas and applications that can be used at the local, state, and federal level and for anyone who hasn't worked in the emergency management field, it's different. It grew up at the local level. It changes. You have to start at the local level. Doesn't mean there's not a state role and a federal role. There obviously are. But to impact it, we have to work at all those levels, including at the individual level. I know once I was speaking and I was proud of what I had done personally, I'm preparing for myself and for my family and then I realized about mid speech, I have done nothing for my dog -- (Laughing) -- that's kind of important because I kind of need my dog to lead me around, so I corrected that mistake.

We wanted to take the science and then move it to the next level so that people would have things they could grab on to and do something with. So this report does all of those things. The methodology was very organized. The researchers provided us a systematic scheme for gathering, reviewing and analyzing the data. And there was a vast amount of that, thousands and thousands and thousands of pages of information.

They included interactions and involvement with many, many people in organizations, people with disabilities, disability organizations, first responders, security staff, emergency management professionals, college programs, associates, organizations, researchers, government agencies, facilities, et cetera, et cetera, there's national organizations as well. So a broader array of individuals involved and we also made sure that we looked at things across urban and rural areas because certainly there's vast differences.

The literature review was across disciplines, across social sciences, psychology, public health, health professions, and disaster studies. All kinds of broad implications, sometimes transportation, et cetera. They looked at existing government reports like from the government accountability office, and NCD's work.

As John mentioned, we had transcripts of the meetings of which we had presentations, both that we requested and information from the public. We also did a public solicitation for this report and asked questions to which many public members responded and we incorporated all of that information.

So the report's big because we got a lot of information and there was a lot more to look at between 2005 and 2008 when we did this study.

So it was very exciting to see that there was more. The team did this chapter by chapter. Submitted it to the homeland security committee for NCD. We reviewed what they had done. Made comments and then they made the changes based on those comments.

Here are some of the findings of the report. There are 10 of them. The greatest amount of work so far has been known in the area of preparation. But we still need to do work in education, training, planning, designing, and shelters.

Second, work remains to be done in the response area, particularly in terms of warning and search and rescue and evacuation.

Third, there's been minimal work done in the area of recovery and mostly we find that people assisting people with disabilities have difficulty locating appropriate services.

Fourth, the area of mitigation has had the least work done. Although this area offers the greatest protection in minimizing risk for people with disabilities.

Fifth, emergency managers often do not prepare for people with disabilities because they have minimal financing and resources. People with disabilities often don't prepare for disasters because of the already-challenging life circumstances many face.

Sixth, most emergency management plans are done without people with disabilities and disability organizations.

Seventh, more research needs to be done to the best way to assist people with disabilities, particularly in the area of search and rescue.

Eighth, more attention needs to be paid to people in nursing homes and other facilities, people who do not drive or have cars; people who need general or functional needs shelter services.

Nine, there's some issues that need to be addressed first in the disability community and in the end in the emergency management community.

Ten, people with disabilities during the recovery phase often find a lack of accessible temporary housing, a lack of insurance for their disability needs, gaps in federal assistance, loss of access to health care and disruption of caregiver networks.

Okay. Those are the findings.

Now, we have a whole section that relates to promising practices because you found a lot of neat stuff being done around the country. What we did with that section is we described what the practice was. If there is a link to it, we link directly to it right from that spot in the report on the web.

We also then put a bulletin list of why we chose that report or that practice as a promising practice. And we did that because, you know, sometimes people replicate something and they replicate all the parts you didn't like -- (Laughing) -- so we wanted to let people know right up front the parts that we liked and the reason we chose it so that if it got replicated, we would recognize it as something we valued.

So there was a number of promising practices that were organized by the phases of emergency management preparedness, response, recovery and mitigation.

I'm just going to give you a few samples and keep in mind that the things we are saying here are little windows into the report. These are just teasers.

For example, in the preparedness phase, the Kansas Association, the health department's 2007 report, prepared an online, assessment and planning tool for pandemics that relates to assisting people with disabilities.

It's very well done, has a lot of nice things about it, has a lot of great information. There's some accreditation available and it's free and it's written for a wide array of various types of professionals. So it's a very useful product.

In the area of response, we noted that the Louisiana School for the Deaf used text messaging, web pages and a social networking to find students that were displaced and to be able to support them during the disaster.

We also note that emerging technology used by young people today is often more accessible to people with disabilities. Therefore, we were excited to see that the -- let's see. Who was it?

The University of Maryland at College Park developed a Facebook account for emergency information that was later copied by Purdue and Notre Dame. We noticed that FEMA has developed a Twitter account.

Additionally, we note that the Department of Justice information about accommodations in shelters is some of the best information we have seen. There are some very nice checklists and some very good descriptions of accommodations and accessibility needs in shelters and how to achieve them, so we saw that as a best practice. In the area of recovery, we noted that during Katrina, FEMA and the United Methodist Committee on relief developed a system and this was used throughout the country as people assisted evacuees for Katrina.

In the area of mitigation, we found that there were some workplaces and public facilities are increasingly employing alternate warning system that is are more accessible to people with disabilities. We applaud that. We also see that there is a FEMA grant to the Baldwin County, Georgia, ARC for them to be able to build a safe room and a workshop facility for the clients they serve.

Now, I want to turn it over to Elizabeth who will describe some of the inventions and findings and recommendations from the report.

>> Elizabeth Davis: I'm looking at the clock and I can say good morning still. And I'm looking a little blue because I'm cold up here.

Thank you, Pat.

I have been tasked with selecting but a few illustrations of the many that are provided in this report contained specifically as mentioned to interventions and recommendations at the congressional level is what I have chosen to do. I just want to take a footnote opportunity here to once again stress what Pat outlined and that is the usability of the report so that depending on which level you enter into the report, local or regional or state or at the federal level, you will be able to navigate through these different recommendations, but I selected that congressional level for today.

The comprehensive report really takes stock of what we know, what we still need to know and what we still can do to make improvements, so I hope that you'll allow me the opportunity to take just a few select set comments here. The report sees the various levels of government as well as those in voluntary agencies and making people with disabilities safer and we have been on this journey for several years now and building a base from which to take action and to conduct additional critical needed research by expanding what we already have done and taking some additional key steps, we can continue to transform communities and lives.

I have broken down the few examples, again, to parallel the report on the way that that is presented in its usable form by also using the phases of emergency management. So to begin with preparedness, and I would suggest to you today that that's the phase with the most fully formed and constructive suggestions in fact.

Again, also paralleling Pat Pound's point a moment ago, so first, the position of the National Disability Coordinator under FEMA was established as a result of post-Katrina as was the National Advisory Council to ensure greater support of the national disability coordinator's position, the NAC member recommended to the FEMA administrator that regional counterparts should be hired throughout the country. This type of regional support would broader coverage when FEMA is responding to multiple emergencies which is almost always the case. I'm sure we will hear about that in a moment as well. This will also allow greater involvement and attention to disability issues at the regional and the local levels where the work is really taking place and would likely encourage similar positions at the state and local levels to be factored in a position.

With congressional support, FEMA can continue with its commitment to begin a systemic change with the process by hiring those regional disability coordinators for each of the regions.

A second point or recommendation in the preparedness area, while the interagency coordinating council, the ICC, was established by executive order 13347 under President Bush, Congress should support and advocate for the ICC to actually be made a permanent body. Since the ICC is compromised of representatives from all department secretaries, it is cross-departmental and enables communication, sharing information, et cetera. However, the ICC must be adequately funded to be capable of going as a coordinating body among the various federal agencies seated within it.

Congress should require a performance evaluation and assessment that include disability issues for all federal exercises and actual disaster response as standard operating procedure.

This must be reported in all elements of the AAR's, the after action reports, to ensure that disability issues are considered, properly evaluated, and stand even a chance at being improved.

Moving to response...this phase I would suggest to you is most right actually for collaboration with the disability community.

And with help from Congress, public funding must be provided so that local jurisdictions can afford alternative warning systems that really reach people with disabilities.

As well, the support is needed for modifications to notification systems and collaboration that is are already in place such as the protocols in place right now between the Texas State emergency office and Deaf Link or the national weather service in Oklahoma emergency management with its okay warning system.

All public facilities must be required to create realistic evacuation plans for people with disabilities and must exercise those plans.

Certain types of Homeland Security grants should add specialized training for first responders on rescue techniques for people with disabilities such as the course emerging right now with the progressive independent center for living out in New Jersey, a program and a course actually developed after this report was published.

There are activities going on right now that we can look and continue to evaluate for application using the model of the report as a means of validating those practices.

Recovery...I would say that this is the phase most in need of focused thought.

Congress may consider expanding the types of aid offered through individual assistance, IA, to support the purchase of medical equipment, assistive devices and needs of service animals all to ensure the continued independence, post disaster of persons with disabilities, likewise direct caregivers and guardians should also be provided the support even if their homes and jobs were not directly affected because of the role they play in the maintenance of independence with others.

Federal funding should be made available to fund case management during disaster, particularly those professionals who are qualified regarding issues of disability impact during the long-term recovery process. As we saw attempted post-Katrina with the Katrina aid today and the other mentions that Pat Found already alluded to and then again immediately after Gustav and Ike more recently.

Disaster housing...with the help of Congress, financial and other assistance provided to individuals for disaster housing should include supplements for structural accommodations and/or retrofitting that makes the housing accessible.

Advisory teams should be sent to disaster impact areas to assist the local building departments with post-disaster ordinances that encourage rebuilding while increasing accessibility and elements of universal design. Agencies such as the U.S. Access Board I would suggest could be a leader in this type of an effort.

Mitigation...the phase with progressive and forward thinking suggestions actually. Since often the common practice for emergency shelters is to create and identify existing structures within the community such as schools, funding needs to be made available to ensure that retrofitting and other modifications can remove barriers, increase accessibility, and harden the facilities for community shelters before the structure actually needs to be used as such.

Funding for such widespread efforts could occur in conjunction with the recently passed American Recovery and Reinvestment Act.

Voluntary organizations and community-based organizations are always part of the local response and recovery act, critical to people with disabilities.

Yet, direct funding to continue to operate during and right after a disaster rarely, if ever, reaches these not-for-profit agencies. Federal funding streams must be established or redirected to ensure such important organizations on the ground can do what we rely on them -- to do what we rely on them during, before, during and after a disaster.

Expanded mitigation funding is needed that will benefit people with disabilities and others with special needs.

The senior center safe concept in Florida and Alabama are prime examples of building senior centers with hardened features, trained staff that can double as emergency and recovery centers, similarly conducting safe rooms at group facilities used daily by people with disabilities could be funded.

Research...now, this I have set aside as a fifth category. There are four phases of emergency management, but research really does cover or touch on all of those four phases that we just mentioned and I think it's critically important to outline a few recommendations in this category as well.

Existing research, despite the fact that we have what is it, 512 pages in report of this report, remains insufficient actually on people with disabilities.

Existing entities such as the National Science Foundation, the National Institute for Disability and are habilitation Research, NIDRR, the national academy and others require funds to launch initiatives or expand existing programs, but I would suggest to you that there must be some requirement for collaboration among these great research opportunities, or the research agenda will not complement. It might actually replicate or overlap unnecessarily.

Opportunities exist to couple funding for emergency response and disaster recovery efforts with an evaluation component. Something that does not currently exist. And I would suggest that this might actually cut down the 2- to 3-year research gap right now that exists post-disaster. What I mean by that is it usually takes now post-event, about two to three years for the academic practitioners and the researchers to actually be able to develop validated and empirical data as a result of that particular event.

If, in fact, we can combine the evaluation component with the actual emergency response and disaster efforts, we can conduct the time down and that research, in fact, will inform Congress and federal response agencies of the level of scientific support for disaster operations, programs, and policies in need of immediate reconsideration.

So to summarize this particular section of the agenda, we have seen some promising practices as Pat mentioned a moment ago, that take place in recent years and suggested that we have made significant improvements in emergency management for people with disabilities and their communities. Emergency managers, advocacy organizes, and disaster researchers across the nation can make a difference with your attention and support.

Promising practices and partnerships certainly are emerging. While it might appear from my comments that funding is what is needed most, funding with congressional leadership is what we seek. It is in the best interest of the nation and people with disabilities to leverage the efforts identified in these recommendations offered in a way that can be multidimensional, cross-departmental, collaborative, and ultimately most cost effective.

Just as mitigation measures offer a return greater for efforts done in advance versus the dollar spent in the reactionary phase later, so too many of these points just need to be championed now to have the greatest impact later.

To do so, your intentions in support of this recommendations listed in the full report would be invaluable and certainly worthwhile.

In moving on to the agenda here, I would like to publicly acknowledge the hard work of Dr. Brenda Phillips and her research team as well as my analytical team in the office. These team members are listed by name within the report.

And with that, I thank you for your attention and consideration to these summary points.

>> Good morning, Chairman Vaughn, distinguished members on the National Council on Disability, congressional staff and guests. It is a privilege to appear before you today representing FEMA. I appreciate your interest in the continued support for our communities to plan for and integrate the emergency management needs of 56.4 million children and adults with disabilities.

FEMA joins with the National Council on Disability in a shared belief that as a nation we must continue to work to effectively meet the critical needs of children and adults with disabilities when they are impacted by disasters. FEMA is not the whole team. We are a part of the team.

Along with the National Council on Disability, together with our federal partners, our nation's governors, our tribal, state, and local partners, as well as our vast network of stakeholder groups serving children and adults with disabilities in every state and territory.

We are economyed to improving emergency management for children and adults with disabilities, before, and after disaster strikes. We were reminded how to do better after Hurricane Katrina. Progress has been made in our need to meet disasters, whether it's flooding in Georgia, wild fires in California, or the impact of disasters in other parts of the world.

As hard as the impact of the disasters is on entire communities, people with disabilities are continually the hardest hit in disasters. While there may be many reasons for this, one fact remains clear: Most communities place the majority of their focus and resources on the easier aspects of community preparedness, emergency preparedness first.

Then they plan separately for people who need assistance to function and remain independent, those who struggle to meet their daily needs and those who have become totally dependent on others for their safety. This means that too often they are not woven into a seamless plan that works for the whole community. Let me share with you a story for those of you who have not heard it. There was a woman, quadriplegic, living in New Orleans, and she tried to evacuate for three days without success. She contacted me as Hurricane Katrina was making land fall. Unable to help her evacuate, I stayed on the phone with her for that day and assured her that help would be on the way. However, as the hurricane was passing, she told me that the water was rushing in. Her phone went dead and she drowned. She was found floating in her wheelchair in her apartment several days later. It is because I know we can do better and because I was asked to help is that I join the team at FEMA. FEMA is working hard to do better. Working so that any segment of our communities who have been traditionally underserved will be more fully and consistently integrated into the planning efforts at every level of government. Children with disabilities are a part of every community. We must understand and address their needs from the outset, recognizing that they are not simply small adults with disabilities. We must avoid putting planning considerations specific to people with disabilities in separate boxes and create instead disaster response and recovery plans that account for the fact that children and adults with disabilities make up a significant percentage of the population.

Administrator Fugate has made this one of his top goals. Maintaining independence, communication, transportation, supervision, medical care.

During the past three months, since I joined FEMA, I had begun to address many of the recommendations in the National Council on Disability report, effective emergency management, making improvements for communities and people with disabilities, which FEMA was privileged to join with the National Council on Disability in releasing at our citizen core conference on August 12, 2009.

This report was well received and documents many best practices to improve preparedness response, recovery and mitigation practices, leading to better outcomes for children and adults with disabilities who are impacted by a disaster and the communities they live in.

The report contained many recommendations and I would like to provide an update on the recommendations that were specific to FEMA.

Recommendation number 1, continue strengthening efforts to enforce compliance with Federal Communications Commission, FCC, policies regarding emergency broadcasting to reach people with disabilities.

In my role as disability advisor to the administrator, I have been working closely with the FCC and other federal parts through the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities.

One key aspect of this collaborative effort is focused on improving emergency communications for people with disabilities and their communities.

I recently represented FEMA as a featured speaker at the FCC in August and at the wireless emergency communication state of technology conference in September speaking on emergency communication issues for people with disabilities.

I will continue to work with our partners on effective emergency communication through ongoing dialogue and sustained effort to find common ground on this important aspect of emergency management.

Recommendation number 2...complete the federal emergency management agency, FEMA, comprehensive planning guide, CPG series, including 301 special needs and 302, which include service animals in sync with other CPG service guides.

FEMA recently conducted a final review of the CPG draft that emergency managers need the information in the guide, even as we consider next steps in fully integrating the additional needs of people with disabilities across the work of the agency.

More recently I met with our partners for 1eu68 rights and civil liberties in early October for their final review of the document. It is now in concurrence. CPG 302 is expected to undergo final review shortly. Recommendation number 3...hire disability coordinators at the FEMA regional offices.

Over the past year, there has been discussion about the possibility of creating regional disability officers in the office and as merit to this idea as a part of an agency-wide integrated approach to meeting the needs of what is significantly a portion of any local population. FEMA is currently taking a top-to-dot toll look at the best way to ensure that the preparedness and recovery needs of children with disabilities are served by the agency and over the next several months the option of creating regional coordinator positions will be carefully considered along with other approaches. The goal is to expand and improve capacity for our regional offices to provide support to our states, to integrate rather than further stove piping the needs of children and adults with disabilities as a secondary, separate or special responsibility. And all options for achieving this goal are under review. I have already begun meeting with the designated points of contact for disability issues in each of the regions and they will play an important part in this review as well.

 

Recommendation number 4, fund research streams that push forward scientific evidence of best practices for disaster management and disabilities. Consideration for best practice and other types of research and accurate data collection will be included in FEMA's plan in collaboration with our stakeholders.

Recommendation numbers 5, establish a clearinghouse for resources organized to meet the needs of emergency managers and disability organizations. Www.disabilitypreparedness.gov already contains valuable information and resources accessible to managers, disability organizations and other stakeholders. Additional strategies for providing access to information and resources are being included in our planning considerations.

Recommendation number 6, involve disability organizations and people with disabilities in federal exercises after action reports and federally funded recovery planning.

Since I joined FEMA three months ago, we have developed a database of stakeholders. This database is open to anyone who is involved in disability and disaster issues and currently has over 300 people and organizes from all 50 states and territories.

There have been several e-mail updates and conference calls including two with administrator Fu gate. I'm working with the NLE 10 and 11 planning teams on plans for including people with disabilities in those exercises and a letter from the administrator went out to our stakeholders regarding upcoming of the national disaster recovery frame work and opportunities to participate.

Moving forward, we will use the database to continue to communicate with our constituents and engage them as partners in preparedness. Recommendation number 7, expand disaster recovery funding to cover disability issues including health care disruption, loss of durable medical equipment and assistive devices, caregiver support expenses, service animals, transportation costs, and additional expenses arising from living in temporary housing.

Consideration for ways to address and improve all aspects of successful disaster recovery is being included in our review including coordination with programs across the federal government that may complement FEMA's efforts.

Recommendation 8, relies on FEMA guidance materials for safe room construction to include disability access, fund mitigation projects that -- and fund mitigation projects that target people with disabilities.

Accessible safe room construction and mitigation projects have been on my radar since I came on board and these have an important connection to improving outcomes to children and adults with disabilities.

Recommendation 9, enhance accessibility features in federal buildings to strengthen evacuation planning, evacuation devices and warning systems.

I have already begun working with the building safety team at FEMA headquarters and look forward to opportunities to share best practices in the future.

Additionally, as a part of my initial scope of work associated with meeting the needs of children and adults with disabilities and making recommendations for next steps in expanding our nation's capacity to prepare for, protect against, respond to, recovery and mitigate all hazards, here are some examples. The FEMA's children working group, the FEMA pandemic response team, FEMA national housing task force, our EFS long-term recovery national work group, the national disaster recovery frame work task force, national level exercise NLE 10 and NLE 11 planning groups, functional needs supports services guidance to the states work group, Interagency Coordinating Council on Emergency Management -- Emergency Preparedness and Individuals with Disabilities; emergency alerts with wireless RERC and broadband initiative, final review of community preparedness guide 301, the resource kit working group with the regional coordinators.

Moving forward...opportunities. FEMA is committed to advancing our nation's preparedness by emphasizing the disaster needs of children and adults with disabilities. Our efforts must begin with personal preparedness, a process of individual thinking and consideration, basic steps that each of us and our families must take to help prevent and prepare for the next disaster. Those of us who can prepare, including individuals with disabilities and families with children with disabilities must do our part so that limited resources can be used for those who need assistance. People need realistic and achievable guidance on how to be prepared. And we must focus on community preparedness, rather than merely just creating plans and guidance. Every citizen has a role to play in community preparedness. People with disabilities need to be at planning tables, need to be hired as first responders and emergency managers and need to be included in every aspect of community planning.

And the time to make being prepared the norm. Let's make it cool to be prepared. Let's make it cool to help our neighbors. This is a fine example of best practice.

In times of crisis, government plays a critical role in coordinating response and recovery efforts, especially in protecting and providing for members our communities who need our support. The preparedness needs of children and adults with disabilities, only 1/5 of the population, cannot simply fall to secondary planning considerations, but must be one of the central focuses of our planning, response and recovery. While we have made significant strides towards this goal, we believe that even greater progress is within reach. Thanks to the many initiatives underway, valuable input from the National Council on Disability, our partners and stakeholders and the continued support of this caucus and the Congress.

Thank you to all of you for being here today and for allowing me to brief you. I'm happy to answer any questions you may have.

Thank you.

>> John Vaughn: Thank you very much, Marcie. When NCD got that original assignment back in '06, we, as a council, reached out to FEMA. We reached out to the Department of Homeland Security to meet monthly with those two organizations to see how we could fit in. We also reached out to disability stakeholders and advocacy groups, and Marcie was one of those who was at the table with us in her previous career when she was involved with the Coalition for Citizens with disabilities. And I think the take-away from all of this is there is a lot of work to be done and a lot of it can be done here in Washington and a lot of it has to be done by people like us, people living on the coast of Florida for our own personal safety and equally important, getting those local emergency managers to think about the needs of people with disabilities.

We're going to open it up for questions, but before I do that, I would like Mark Bradner and Todd Adams to make any comments they might want to. I want to welcome -- or just recognize our staff that is here. Mark Gold who is the staff to our Homeland Security has been around if us working on Homeland Security issues for the last, six, seven years. Mark, where are you?

And Mike Collins, our executive director who will be doing the question-and-answer period, many of you had contact with Ann Somers, our legislative affairs specialist. If Ann is around somewhere and identify herself. We appreciate your efforts and bringing us all together for this opportunity.

Marc Quigley, our director of external affairs, if you have any questions about NCD, ask Marc. Mark, raise your hand. I'm a blind guy, I don't see the hand going up.

 

>> MALE AUDIENCE: He's here.

>> John Vaughn: And is Stacey here too?

He is good if you need any hard copies or if you want any thumb drives our report, he would be a good one to talk to.

Okay. Is Mark and Todd up here?

And from them, we'll turn it right over to Mark Collins to take any questions.

>> MALE AUDIENCE: I'm going to keep this very brief. I'm Todd Adams. I handle the disability policy for Congressman Jim Langevin and he's still in Rhode Island. I just wanted to thank all of you who managed to tear yourself away from your desk after a 3-day weekend and a very busy week ahead. I also want to thank the board members of NCD as well as Marcie Roth for coming in and representing FEMA. This is very, very personally interesting issue to my boss, the crossover and intersection between disability policy and emergency preparedness. It's something that me feels tremendously important. Should never be considered an after-thought. So we really appreciate you guys being here and helping to address this issue and speak to the important points that we need to consider moving forward. So thank you all for being here.

 

>> MALE AUDIENCE: Thanks and I'll keep this even briefer than Todd. He hit all the points. My boss is on a plane right now currently. So he wasn't able to come. I'd also like to thank Pat and Marcie and thank you guys for coming in after a 3-day weekend and when my boss worked in the 1990s on getting the tax -- and I would like to thank everybody for coming out and helping us formulate better policy in order to be better prepared in the event of a disaster. Thanks.

>> Mike Collins: Thank you all. This is Mike Collins and I'm the executive director of NCD as John has said. So if you have any questions, if you raise your hand, I'll be sure to get it directed to the right person.

Are there any questions?

Yes, third row here.

>> MALE AUDIENCE: Hi. My name is Dan Matthews and I'm with the House if transportation Committee and we had a large role in that post-Katrina bill, in writing that and we actually did consider the issue of regional disability coordinators when we were writing that and we ended up with a national one and a very strong coordination role for the National Council on Disabilities and in part because we didn't want to stove pipe these issues in a particular office but wanted to really integrate it throughout the entire system. So I'm just curious with whoever wants to respond, I know Marcie already did kind of from the federal side, from FEMA side. Why you think it would be best to have a regional disability coordinator and what the advantages might be in taking that route.

>> Mike Collins: On the panel, if you want to raise your hand if you feel the need to answer.

Elizabeth?

>> Elizabeth Davis: This is like one of those times when you don't, okay, everybody stepped back, so you're still standing up in the front. Actually appreciating that and without getting too I guess lofty in the answer to it, I'm going to try to tie seemingly different pieces of this together. Appreciating what Marcie just raised and listening to the way you have worded the question, the goal here ideally, once we move that ball through the -- why am I doing sports analogies this morning?

I have no idea.

Okay. Well, once we do that, the goal would be that these are not set-aside issues certainly. That the issues for the 55, 56 million Americans as was cited are not special or specific or additional. That they are part and parcel of the entire standard operating procedure. Having said that, one might suggest from the literature reviews, from the report reviews, from the interviews, from the field experiences and I come as a professional emergency manager to this research, until that time we still need to focus attention in a very directed way to make certain that it's not an accidental -- it's not accidentally left off the agenda. It's not to say, again, that we want that to be the goal ultimately in the long run, but for the time being, there really needs to be dedicated focus and attention. And be that through the efforts of a singularly appointed person with tasks of nothing other than bringing those issues to bear across the different elements of this, if there are other example, I'm sure they will be emerging soon. But right now citing a study within the report, it was found in a survey of emergency managers, a Harris Poll conducted on behalf of the emergency preparedness initiative at NOD, national organization on disabilities, which in fact -- listen to this number for a second. Of all of the state emergency management directors, 100% identified disability issues and other special needs issues as their number one priority. 100%. Having said that, almost 99% of those respondents did not have funding, did not have the expertise on staff, did not have the time required to actually focus the attention that they already recognized they wanted as a priority.

So we have to take these realities from the ground and somehow incorporate them into the structure in order to ensure that they find a place, a permanent place within the overall response frame work, I think.

And I would pass that to anybody else who wanted to approach that answer or not.

>> Mike Collins: Very thorough answer. We had another question back here on the side. Yes?

>> FEMALE AUDIENCE: I'm Maureen Fitzgerald and I'm with the arc collaboration and when you began your presentation, you mentioned 10 findings. In finding number 9, there were some things that must be addressed first by the disability community and then by the emergency management community and I wondered if you could expound upon that.

>> Mike Collins: And I'll just repeat some of that. The findings number 9, and whether or not what needs to be done by the disability community and the emergency management community, hopefully working together going forward to be more effective. Pat, did you want to do that?

Elizabeth?

Okay.

>> Elizabeth Davis: Let me cheat and borrow the CART for a minute.

I think that what the report will hopefully illustrate, but if it doesn't well enough, then I will take the blame on that one, is that this really has to be a collaborative effort, that this is a partnership plain and simple. Your chances of survivorability, whether you're an individual with a disability or not, whether you're a child, a centurion, whatever factors you bring to the table, will improve with personal preparedness and I'm sure that with chiming the right chimes to my FEMA colleague that the preparedness starts at the individual level.

Having said that, there are going to be circumstances that no matter what you have done for yourself to the best of your capabilities, there still might be a gap or a lag in your ability to process the information, make life-sustaining decisions for yourself or your family and then take those action steps that are being called forward for you to follow and that's where the role of an emergency management and I'm using that as a very broad sweeping term to encompass not just the first responders that we traditionally think about, but organizations, non-for-profits, front-line agencies that have a role to play. So I'm hoping that I'm getting at the core of what you are asking here. The clarification here is that as an individual with a disability, as a member and advocate in the disability community as well as an emergency manager, all I can say is shame on me if I rely on somebody else entirely. It's got to be a 2-way street and I think that if we are going to stand here and say that survivorability is an equal right, survivorability is a civil right, then we need to be consistent with the actions that we take to support that. And forgive me, NCD, if I went a little bit beyond the protocol on the personal opinion in that answer. Maybe I'll leave it to somebody else to clean up.

( Laughter )

>> Mike Collins: Well, this is Mike and I think you have hit it on the head and I've heard Pat say this many times, you know, we need to work on individual preparedness and the Arc and NCD is doing some work on that but everybody has the individual responsibility to mike sure people are getting individually prepared for disaster that is are hit in their areas.

Other questions?

We do have some additional questions here that we have been asked to bring up here today and one of them is what is the NCD process going forward with its report, what kind of steps is it taking and Pat, you have the microphone.

>> Pat Pounds: John has met with his local people in Florida and shown them how to use the report, talked about what they were doing, talked about things that they could find in the report that might illuminate the work that they were doing. We just had an article about what's in the report that relates to hospitals and nursing homes and when Martin and I first did the interview, we were skeptical about the outcome. You know, sometimes we think a reporter really may not totally get what you're saying. But lo and behold, the article came out and it was fabulous. It was better than what we said -- (Laughing) -- anyway, it was great. We read the parts of the report and they did a really nice job. And sometimes these pullouts of the report are nice, again, little teasers and that one has made its way to lots of hospitals and hospital associations and nursing homes. In fact, I sent it to one of our members who is doing some local work related to some potential mudslides in Washington State and he's going to send it to his local hospitals and nursing homes. It's not the well report. But it gives them the slice that they need to have right at that particular time and then enticing them and shows them how it can be valuable to them.

We also did a piece that we sent out on our list serve for preparedness month for September and we relate to it various portions of the report that provide people with the list that they need for being prepared and local people with the list that they need for assisting people with disabilities.

So we haven't really formulated a distinct plan. We do have some additional speaking engagements that have potential in 2010 and then we'll be looking at whatever avenues the council wants to take a look at that time.

>> Mike Collins: Any other questions?

Todd?

>> MALE AUDIENCE: I'm sorry. I got to ask this and I don't mean to be throwing a curve ball in here, but when we think about emergency preparedness, we think about disaster mitigation, it's always generally reactive rather than proactive than what we're talking about here. John, what you mentioned here, and now we're dealing with a new threat. So we're not always talking about natural disasters, we're talking about other threats as well. So I just wanted to bring up a greater focus funding stream and greater focus on the health aspects of that. How does this report -- how can we look at this report and sort of apply those to some of the other nontraditional threats that we may have to deal with?

>> Mike Collins: Pat?

>> Pat Collins: Funny that you have asked that question. We have actually attended and make a brief set of comments at a local H1N1 conference but we have pulled out some information on the H1N1 and I think the key is the planning and an excellent example of something that was done just last week and I know Marcie sent it out. The White House sponsored a bunch of calls that promoted information that targeted various groups of people with disabilities, HIV, people with respiratory issues, generic one on people with disabilities. Really extremely well done, both had very knowledgeable and reputable speakers and also allowed for questions to be asked and I assume that information would be up on www.flu.gov. Really, that's the first most important thing that we can do and it fits with a lot of the recommendations in the report about better information out to targeted groups of people with disabilities and that, you know, if we did another report, which would be on my tops of best practices.

>> MALE AUDIENCE: Thank you.

>> FEMALE AUDIENCE: I'm happy to also make some comments and this will just reinforce my earlier comments and I'm not going to speak specifically to H1N1. FEMA is not the lead agency on that. U.S. Department of health Services and CEC are. We're focusing on a continuity of vibrations along with the Department of Homeland Security and looking at workforce issues, making sure that FEMA is in a position to continue to do our job under whatever circumstances. But I do want to say something about preparedness and, you know, when I'm out talking to groups, I talk about this a lot and, you know, and I want to reinforce it. And that is that for those of us who have the ability to prepare, we need to take that responsibility very seriously. Administrator Fugate talks about this a lot, not everybody is in a position to prepare for a whole list of reasons. There are some people who did a great job in preparing under what circumstances and for that particular event, they just can and other people -- we need for our first responders. We need for our communities to be able to focus on those folks who need the assistance the most and it could be any one of us. It could be that any one of us has been injured or any one of us has become separated from our vehicle or separated from our loved ones. You know, whatever the circumstances are, and we want our first responders to be able to focus where those needs are the greatest. I will often when I'm speaking to groups, I'll ask a series of questions and I won't ask you all to put you on the spot, but you can sort of think through this as I talk about this and I'll ask a group, you know, I'll say how many of you came here in a vehicle?

You know, how many of you wore your seat belt?

And almost every time someone raises their hand and says they wore their seat belt. I'll say of those of you who are over 30, how many of you wore a seat belt or road in a car seat when you were a child, and almost no one raises their hand. But how many of you who have children would put your child in a car without a seat belt or without a car seat?

And again almost no one raises their hand. Something very fundamentally changed from when we were growing up and we didn't have seat belts. Perhaps it was legislative changes, but I don't think you can simply say it was changes in the law. I think some very fundamental things shifted so that, for example, when I was recently asking this series of questions, I said, and so, you know, how many of you wore a seat belt?

And one woman raised her hand and she said, well, I actually wasn't wearing my seat belt. But let me explain why. And she was very embarrassed and she felt a real obligation to explain why she wasn't wearing a seat belt and it was because I was in a cab. And the point was that even if we aren't wearing a seat belt, when we're put on the spot in public, most people won't admit it because it's just not cool to not wear your seat belt. It's not cool to put your kid in a car without a car seat. We won't even admit that these days. Something very fundamentally changed. Then I asked people the following question and I won't put you all on the spot, how many of you have a plan, how many of you have a kit?

And I'll get lots of giggles, but almost everybody keeps their hand down. Almost nobody raises their hand. I see a lot of people trying hard not to shake their heads right now. But I would guess most people in this room don't have a plan, or don't have a kit. It is our responsibility to make sure that we are part of the solution and not part of the problem. The personal preparedness that each one of us, the steps that each one of us can take in personal preparedness are vital, not only to ourselves, not only to our families, but to the resources within our community. So somewhere, and I said this earlier, somewhere we need to make being prepared cool. We need to make not being prepared the thing that people have a hard time admitting.

>> Todd, I'm going to try to bring it back to your original question. When you asked me what I might find to bring back to your boss out of the H1N 1 disaster out of the emergency disaster that you might this of, although health emergencies are traditional types of emergencies, I think you can look to nuggets that focus on social isolation that will become necessary via -- whether it's H1N1 or other types of circumstances and how that can be a desperate impact on different types of society. On persons relying on services, even Meals on Wheels, for example, the administration on aging, falls into this category too. So you have to consider the necessary precautions and medical instruction and the impact downstream. Maybe not today, but tomorrow given a couple of days and these are going to become big issues for certain members in our community, I would suggest you also taking again something from here and putting it into the new realm of the disaster...you can look to the points about social networking and social media. The very fact that FEMA Tweets, Twits, Twitter, you know what I mean, the very fact that we have seen federal agencies enter this new very quickly emerging needs of reaching the general public, the public at large, is an interesting factor to take into account. On the one hand, you may feel that the federal government loses control of message and to some extent, that may be true, but they need to therefore build a validation to the public so that the message coming out is recognized as the real answer, the real advice, the pointed information and that in some ways it surpasses some of the rumor or ground's swell of information that can also come out in these types of information.

I would suggest to you that service networks are very, very important to first of speak out to. But what Marcie pointed out -- we need to make sure that the home care attendant visits the person, et cetera, but the other side of that is also the individual who's in receipt of such services in order to continue to live independently within the community. It's their responsibility to mike sure that they have several levels of redundancy in place and not rely on an agency's corporate structure to ensure their ongoing sustainability. So those are some of the points that I hit you can pull out of the report that are mentioned in a different context, but definitely have an application to the example you gave. And it occurs to me there's one other major point that has to be made and that is that while we're talking about this group, this classification of persons with disabilities, the number, 55, 54, 54.6, 55 million Americans, you know what, it's not about people with disabilities. It's about taking these lessons of persons with disabilities and applying it to all of us. This is sort of an equal opportunity life disrupter and you can come in or out of that category, temporarily, episodically and so the messages that are contained in this report while they might be focused on people right now, just because they are points about emergency planning and people with disabilities, obviously when you get to that end of the perfect place, you can erase that and same that's less than all of us. I hope that answered the H1N1.

>> MALE AUDIENCE: It did.

>> Mike Collins: John, you want to make a couple of remarks to close this out?

>> John Vaughn: We're done?

I really appreciate you all being here to hear about this. The action step that I would like each of you to take is that there are almost 7,000 local emergency management districts in this area.

I think that you are going to find that your local emergency people are going to be very receptive. This report, it is so slick. As a person who is blind, to be able to use those hyperlinks in the electronic version of it, and what you do, is you find yourself, you don't want to read about this mitigation stuff, what's that all about?

And then the next minute you're going back to the table of content, using your back key and all that and saying you know what, I wrote this -- and what an acronym means. We even have those in there so that you can learn to speak like FEMA. But in all seriousness, on an important action step that any of you can do and our congressional people, we have got people back home and I defer them to this product, for them to get involved because I was talking with Marcie earlier, that a lot of the problem too is people with disabilities back in the communities, they somehow think that everything is being done here in Washington and the reality of it is, we're going to get saved locally. So on action step for each of you, please make your emergency preparedness people back home through your staff there, look at the report and maybe you'll get religion about it, this is really cool stuff. There's so much transferable knowledge here that can be used. And I got to tell you, I'm 65 now. I've been blind since I was 35. I got to have my disability happen earlier in life. But half of us when we get to 65, we're going to have a disability. And when you're 80, you're most likely going to have a disability. So you're going to join us sooner or later and it's good to be thinking about your future not only financially, but your life. Because disasters seem to get worse every year as we become more populated.

I thank all of you for being here. I thank NCD's staff for coordinating with Todd and Mike and Mark. And if there's any questions we can answer, go to NCD.gov on the web. We have got a place you can write questions or just call over to the office. We'd be glad to help share any information. Thank you for being here and thank you for taking this back to your local communities.

And maybe even sharing it with a colleague who wasn't able to be here who is a staff to a Congressman from a different locality. Maybe they can share this with them.

Thank you very much.