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Emergency Management and People with Disabilities:
Before, During and After
Congressional Briefing
November 10, 2005
Hosted by The National Council on Disability,
the National Council on Independent Living, the National Organization
on Disability, the National Spinal Cord Injury Association and the
Paralyzed Veterans of America.
Room 2168, Rayburn House Office Building, Independence
Avenue
1:30 p.m. on November 10, 2005
Total Time: 2 hours
Agenda
Panel Discussion (1:30 - 3:20)
Opening Remarks
The Honorable Jim Ramstad,
Co-Chair, Bipartisan Disabilities Caucus
The Honorable James Langevin,
Co-Chair, Bipartisan Disabilities Caucus
Lee Page, Associate Advocacy
Director, Paralyzed Veterans of America
Presentation by Panelists:
Hilary Styron, Director,
Emergency Preparedness Initiative, National Organization on Disability
Marcie Roth, Executive Director/CEO,
National Spinal Cord Injury Association
Claudia Gordon, Attorney
Advisor, Office for Civil Rights and Civil Liberties, U.S. Department
of Homeland Security
John Lancaster, Executive
Director, National Council on Independent Living
Natalia Mason, Interim Manager,
Partner Services, American Red Cross
Patricia Pound, Vice Chair
of the National Council on Disability
NOTE: The Federal Emergency
Management Agency (FEMA) was invited, but did not appear. Q&A
with Panelists (3:20 - 3:50)
Closing
Lee Page, Associate Advocacy
Director, Paralyzed Veterans of America.
Minutes
Jim Ramstad: We'll begin
today's briefing. I want to welcome all of you here. My name is
Jim Ramstad from Minnesota. Along with James Langevin from Rhode
Island, who will be coming shortly. Together, James and I co-chair
the Bipartisan Disabilities Caucus. It's a real pleasure to welcome
all of you here today. I particularly want to thank several people
for their hard work in putting this briefing together. These people
include: Jeff Rosen and Mark Seifarth from the National Council
on Disabilities; Susan Prokop from the Paralyzed Veterans of America;
Daniel Davis from the National Council on Independent Living; Mary
Dolan from the National Organization on Disability; and Deb Fulmer
from the Department of Homeland Security. I also want to thank our
panelists for joining us today.
The audience will hear friends and eyewitness accounts
from Hurricane Katrina and Rita that are compelling, gripping, and
horrifying. These accounts will demonstrate the need to include
people with disabilities in emergency management planning preparedness.
As co-chair of the Bipartisan Disabilities Caucus, I want to thank
all of you for being here today to discuss such an important subject.
I'm sure all of you agree we need to knock down barriers wherever
we can. That's why it's absolutely unacceptable, that in a time
of national emergencies, people with disabilities face barriers
and roadblocks to their very own survival. Many of us saw that played
out on television during the rescue efforts. Some of our panelists
are going to talk about being on a phone with a person in a chair
as he or she tried to make the last effort to escape the rising
water only to meet their demise.
Certainly, the disaster in the Gulf Coast region exposed
the enormous gaps in the emergency planning preparedness and management
for people with disabilities. Amazingly, this was not the first
time that the federal government has been alerted to the need for
better emergency management for people with disabilities. In a truly
remarkable show of foresight, the National Council on Disability
(NCD) released a report last April outlining steps that the federal
government should take to include people with disabilities in emergency
preparedness, disaster relief, and homeland security. In addition,
with the emergency evacuation at Capitol, House and Senate office
buildings in June, one would think that the federal government would
take some action in this matter. In response, the Committee on House
Administration held a hearing on accessibility of the House complex
for persons with special needs. The co-chair of the Bipartisan Disabilities
Caucus, Jim Langevin, testified at the hearing on the pressing need
to do more in emergency preparedness for people with disabilities.
But, despite all these warnings, the federal response in the Gulf
region before, during, and after Katrina was seriously lacking.
One example of a dire story is the one of the Louis
Armstrong Airport full of wheelchairs because wheelchairs had to
be left behind. People with disabilities were separated from their
service animals, from their medication, from their life-saving dialysis.
Other stories that did not receive much press attention also show
severe problems that people with disabilities faced. Another example
of a case that I found particularly compelling and gripping was
of a medical unit being placed on the second floor of a building;
this limited access for people with impaired mobility who could
not reach the second floor. Despite this setback, local officials
were able to connect them with medical services. In response, they
relocated doctors and other medical professionals to the first floor.
But again, due to lack of preparedness, lack of planning, lack of
thoughtfulness, the medical services were placed on the second floor
of a building, which housed people with disabilities.
Jim and I believe that it is long past due for the
federal government to do the right thing, which is to place the
highest priority on helping people with disabilities by making these
escapes and relief efforts accessible to people with disabilities.
Jim has pointed out that evacuation plans for people with disabilities
exist here at the Capitol in the event of an emergency situation;
such as an elevator that will run if the power supply is interrupted.
However, what's lacking, as Jim Langevin has pointed out to many
of us, is directions to the elevator for people with disabilities
or designated personnel to help people with disabilities find the
elevator. There might be an elevator that will provide you with
an escape mechanism, those of you in chairs, but what good does
it do if you don't know where it is or if nobody's providing directions
to that elevator. This is really unacceptable. It's time to learn
the lessons that are so obvious, or should be so obvious.
As we move forward in rebuilding, we need to keep
in mind the accessibility of first aid stations, mass feeding areas,
portable pay phone stations, portable toilets, and temporary shelter.
We need to insure that people will not be separated from their wheelchairs
or service animals, and certainly not for extended periods of time.
We need to ensure that FEMA and other disaster management agencies
not only purchase adequate trailers for short-term housing, but
also new housing and new buildings that are accessible for the long-term
need.
In conclusion, I think we all agree, as this large
turnout today indicates, that this briefing is clearly needed. I
am grateful to all of you for your continuing efforts to help people
affected by Katrina, Rita and other natural disasters. I hope the
Federal Government will finally heed your urging. All of you know,
like Jim and I know, that it's axiomatic in Washington, on Capitol
Hill, that the squeaky wheel gets the grease. We have to be the
squeaky wheel so that the federal government does finally heed your
urging. We must adequately prepare and include people with disabilities
in emergency management. We must adequately prepare and include
people with disabilities in the emergency management. So thank you
again, all of you, for being here. Thank you to our panelists. It's
now my pleasure to turn it over to my distinguished co-chair, my
good friend from Rhode Island, Jim Langevin.
James Langevin: Your comments,
Jim, were great. Thank you for your leadership and your partnership
to the Bipartisan Disabilities Caucus. Your experience and your
instincts are invaluable. Let me begin by thanking all the groups
that are represented here today for such an important issue.
Because the Disability Community is so diverse, this
panel represents the scope of our knowledge, our challenges, and
our experiences. I am also thrilled that the National Council on
Disability, The National Spinal Cord Injury Association, and National
Council on Independent Living, The Paralyzed Veterans of America
and the National Organization on Disability have come together to
present to the Bipartisan Disabilities Caucus their impressions
and findings about the effects of Hurricane Katrina and Rita on
people with disabilities. I am also grateful for the participation
of representatives from the Department of Homeland Security and
the Red Cross.
We have all heard the very upsetting stories about
the plight of American families in the Gulf Coast. Some of the most
tragic are those stories that were completely avoidable. For me,
the stories about the paralyzed and physically disabled people being
left in their homes to die are very personal. I can sympathize with
them because I know what supports that I need in order to maintain
my independence on a day-to-day basis. I know quite clearly that
if those things break down or things don't come together like they
should that people can be in trouble. And, clearly, this is what
happened in the Gulf region for people with disabilities. Every
American has the right to expect that these supports in an emergency
situation will be present. And when there's no plan for evacuating
people with disabilities, we find ourselves unable to reunite even
a person with their wheelchair; in these types of cases, we truly
have failed. In other words, we failed too many Americans in the
Gulf Coast this year. And the sad part is that the failures could
have been prevented.
Following the hurricanes, Katrina and Rita, my colleagues
and I worked quickly to pass emergency funding bills, to accelerate
TANF payments for those affected by Katrina, to waive student loan
repayments for students attending schools, and to increase the available
federal funds to pay claims under the National Flood Insurance Program.
In the coming weeks and months, Congress will continue to deal with
these kinds of issues.
But, as we move forward, I think that it is crucial
not to neglect issues of accessibility and inclusion in our planning
because the problems can surface later and they will be even more
complicated, more expensive; and in some extreme cases, they will
cost people their lives. I understand this panel has some concrete
recommendations to put forth as to how we can better prepare for
the future events that may take place. I also understand the panel
will discuss the ongoing needs of people with disabilities who were
evacuated from the Gulf Coast region. Such needs include accessible
housing and accessible health care.
I just want to thank you for your quick and efficient
work on identifying these needs. And I want you to know that I pledge,
along with my colleagues, Jim Ramstad and others, to work with you
and all Americans with disabilities as we move forward. Finally,
I want to thank this panel for highlighting to all of us here today
how very important it is to keep the needs of all of our constituents
in mind before, during, and after these catastrophic events. In
my years of policymaking, I have tried to stress that the needs
of people with disabilities must be a forethought, not an afterthought.
This has never been clearer than it is today, as we discuss what
happened to persons with disabilities in the tragic days and weeks
surrounding the Gulf coast hurricanes. I just want to thank you
for all your hard work for being here today and for putting this
together. I know we're all going to learn a lot. And now we also
need to use this as a call to action to put those recommendations
into place so we can address effects of disasters in the future.
I will turn the panel over to Lee Page.
Lee Page: Thank you very
much, both Congressmen, Jim Ramstad and James Langevin for kicking
off the program with such great statements. You really set the stage
as to what we really need to talk about, especially recognizing
that it was just two short months ago that Katrina and Rita basically
devastated the Gulf region areas leading to a strain on FEMA, Red
Cross, and all the other voluntary agencies that are out there responding
to the needs of the general public. However, we have not necessarily
seen what people with disabilities or those with chronic illnesses
or the most vulnerable have gone through.
I know that for us, Paralyzed Veterans of America
(PVA), our Bayou Gulf state's chapter took a direct hit. It is located
in the Louisiana area; however, all that is left is the cement slab
of the facility. We had over nine hundred members of the organization
that were hit and felt some sort of effect via the hurricanes. In
addition, we had 25 members that specifically lost everything including
their housing. All of the members are spinal cord injury veterans,
who use wheelchairs a hundred percent of the time. In some instances,
the VA medical center located in Gulf Port, Mississippi was evacuated
leading to many of the patients and members being transferred to
different facilities throughout the region. In some cases, we had
members transferred to the V.A. in Memphis and in Houston. Unfortunately
because everything was done in such a hurry due to the evacuation,
a lot of things did get left behind; these include people's wheelchairs,
assistive technologies, and medications needed for them to continue
their independent lifestyle. But, fortunately, because the V.A.
is a very well organized part of the government that provides assistance
to veterans of the armed services, most of the services have been
returned to our members, and to many other veterans.
However, what is lacking is accessible housing. I
have received a statement that our executive director from the Bayou
chapter found out that when FEMA or the other organizations that
were distributing housing or materials, it was basically on a first
come first serve basis. In addition, the concern about whether it
was accessible or not accessible or whether it met your needs was
not considered. In other words, if the evacuees did not take what
they were given, whether it met their needs or not, they were placed
on the back of the list. As a result, some of our guys had to camp
out in their homes in makeshift tents or shelters, while waiting
for accessible trailers. But, what would have even helped more was
if they had just plywood and sheetrock dropped off that would have
allowed them to either fix the damage themselves or have someone
fix the damage. But with that, I will pass it on to some of the
other panelists, including Patricia Pound from the National Council
on Disability, Natalia Mason from Red Cross, myself from PVA, John
Lancaster from NCIL, Hilary Styron from NOD and the director of
the Emergency Preparedness Initiative, Marcie Roth from National
Spinal Cord Injury Association, and Claudia Gordon from the Office
for Civil Rights and Homeland Security. I'd like to turn it over
to Hilary so she can speak a few words. She has actually been down
to the Bayou area and seen face-to-face activity of what's going
on, especially how people with disabilities have been affected.
Hilary Styron: Good afternoon,
everybody, I am Hilary Styron with the National Organization on
Disability and director of the Emergency Preparedness Initiative,
which is one of the only emergency based programs with a disability
organization in the country and was founded and started after 9-11
by Allen Reich, who passed away on Tuesday morning. This is certainly
a sad time and we send condolences to his family.
I deployed rapid assessment teams after Katrina hit
in the Gulf region. We had four teams in Louisiana, Houston, Texas,
Alabama and Mississippi, primarily to assess what was happening
with the disability and special needs community in this region as
well as what was not happening. We couldn't really ask federal responders
to make changes if we didn't have a real handle on the truth. I
went to Louisiana after coming back from the deployment for the
special needs teams. I was redeployed at the mayor's request to
the city of New Orleans and worked at the EEOC for a week in the
direct impact zone to help them address their special needs issues.
I've been a first responder for over fifteen years. I've been on
the back of ambulances as a paramedic, working in the Gun and Knife
club of the Midwest. I've worked floods, tornadoes, earthquakes
and hurricanes. By far, this is one of the worst disaster scenes
I've ever been on. The members of my team who were survivors from
9-11 say it was worse than 9-11 after getting out of the rubble.
Some of the shelter assessments and information is
in the back of the room for you, I will direct your comments that
were on the shelters in Louisiana that had a special needs portion
of the second floor that was inaccessible to some people with disabilities.
I personally went to that shelter, ready to bear arms; unfortunately,
I had to be dressed in Kevlar to enter that shelter of five thousand
people. The reason that it was on the second floor was because of
the crime and the violence unfolding on the first floor and the
need to maintain control and security of five thousand people in
a two thousand person room. Eventually that special needs shelter
was moved out of that facility and taken to a hospital.
So, I just caution us all as the only emergency manager
on the panel that we're thinking about all of the special needs;
and I do not disagree that this is not new information because this
has been going on for 25 years and perhaps even longer than that.
This has been an issue ever since the first disaster, but it has
not been effectively addressed. It's not part of the national response
plan or part of the FEMA agenda; however, it will be now. The Emergency
Preparedness Initiative is actively talking with emergency managers,
elected officials at all levels of government throughout this country,
and working strongly with the disabilities leaders in this room,
on this panel and across the country.
So, you are going to hear some wonderful information
as well as some tragic information. I have voice mails on my cell
phone and home phone number from people calling and saying: Do you
think I'm going to make it? I have water in my apartment, I have
this or that, am I going to make it? Those people did not make it.
There's no reason for the after-action reports of 9-11 or any of
the other natural disasters in this country to not be made into
action. This is your chance to no longer be a passive consumer and
encourage your members of Congress and your advocates to protect
your life safety. If we're going to argue about Medicare or the
price of gas, then you need to be arguing about your personal preparedness
and whether you can access the system.
85.7 percent of the community-based organizations
that provide services to people with disabilities and aging senior
citizens did not know who their emergency manager was in the Gulf
region. They thought it was 911. 911 is not your emergency manager.
By far the hardest community hit in this disaster
was the deaf and hard of hearing. Over 80 percent of the shelters
did not have access to TTY; 60 percent of the shelters did not have
captioning TV capabilities. Less than 30 percent had access to sign
language interpreters.
When an individual with disabilities or special needs
went into a general needs/general population shelter, the people
working in the shelter did not know how to recognize if someone
had a special need because of the lack of pre-management training.
Some disabilities are hidden. For example, if someone is deaf, they
don't understand what you're saying to them; or if they have a cognitive
or learning disability, they may not be able to understand the directions.
And because of that lack of communication due to the absence of
accessible communications devices, they had delayed care. There
were deaths as a result; this increased fatalities. The largest
population suffering from this disaster is over the age of 60; many
of them have a disability. Seventy-five percent of them are from
nursing homes, including the 34 from the nursing home in Bernards.
When I talk to emergency managers, as recently as
last weekend, in Orlando, I was told that this population is acceptable
"loss and collateral damage." I asked a major in the army
national guard how his mother was doing in the nursing home. Oh,
she's just fine. Congratulations, you just killed her because she's
an acceptable loss. This has happened for too long. As an emergency
manager we have failed to get you what you need. We've had to respond
with terrorism grants that are not fully accessible. We have failed
this population and I need to know how much longer. We've all lost
friends. We've lost our businesses. We've lost a lot. And it will
continue to happen until there is a regulation or until there are
compliance standards or until there is money tied to it. There's
enough money in this country to rebuild other countries. We need
to protect this one first. The assets of the human person in this
country are our most critical and we are not protecting them. So,
I ask you Congress: What are you going to do after this session
today? Thank you for your time.
Lee Page: Thank you very
much. Marcie, why don't we hear some comments from you.
Marcie Roth: Good afternoon,
I'm Marcie Roth. I'm the Executive Director and CEO of the National
Spinal Cord Injury Association, which is the nation's oldest and
largest organization serving civilians with spinal cord injuries
and diseases since 1948. I'm here representing NCIA, but I want
to be very clear that we have been working on behalf of all people
with disabilities, including those with sensory, intellectual disabilities,
mental illness and other psychiatric disabilities. And although
I am focusing on efforts to assist Americans with disabilities in
disasters today, NCIA is also wholly committed to working with our
colleagues to address the needs of all people with disabilities
in disasters in other parts of the world.
I want to thank the Disabilities Caucus for the opportunity
to provide you and your colleagues with this briefing, especially
representatives Congressmen Langevin and Jim Ramstad for your leadership
and support. I want to thank my colleagues, both those in the private
sector and those representing government, for the opportunity to
work alongside you over the past ten weeks as we have shared our
knowledge, resources, and deep commitment to meeting the needs of
as many people with disabilities as we possibly could. We have demonstrated
a kind of partnership I celebrate now and I will do all I can to
maintain this partnership in all aspects of my work as we move forward.
We have truly worked as a team and 56 million Americans are better
off for our efforts.
On September 13, 2001, I first became involved in
navigating between the federal systems and private sector in an
effort to address the urgent needs of people with disabilities who
had survived the terrorist attacks two days earlier. I quickly learned
that a lifetime of knowledge of the additional needs of people with
disabilities was being called into action as I found myself in the
breech, navigating between the very real needs of very real people
and the limited federal systems poorly designed to address those
needs. In the months and years after those terrible days, I participated
in, but did not lead efforts to assist people with disabilities
to prepare for another emergency.
I saw the creation of the US Department of Homeland
Security, the relocation of FEMA and the National Disaster Medical
System and many other visible signs that indicated to me that high
level planning for the next national disaster was in good hands.
I did my part, but trusted that even though I couldn't see it, we
were ready. I joined much of America as we watched with more than
a little alarm as Hurricane Katrina took a bite out of Florida and
then made its way into the Gulf. On the morning of August 29, I
received a call that I will never forget, and once I tell you about
it, I hope you will never forget it either. My friend and colleague,
former appointee to the Social Security Administration, Susan Daniels
called me to enlist my help because her sister-in-law, a quadriplegic
woman in New Orleans had been unsuccessfully trying to evacuate
to the Superdome for two days. In my naïveté, I thought
a few phone calls to the right people would help and I was sure
I knew whom to call. After many calls to the right people, it was
clear that this woman, Benilda Caixetta, was not being evacuated.
I stayed on the phone with Benilda, for the most part of the day,
assuring her that I was doing all I could to make sure help would
be coming as soon as possible. She kept telling me she'd been calling
for a ride to the Superdome since Saturday; but, despite promises,
no one came. The very same paratransit system that people can't
rely on in good weather is what was being relied on in the evacuation.
It's no surprise that didn't work. I was on the phone with Benilda
when she told me, with panic in her voice "the water is rushing
in." And then her phone went dead. We learned five days later
that she had been found in her apartment dead, floating next to
her wheelchair. Sometimes things like this can't be prevented. This
was not one of those times. Benilda did not have to drown.
Charles, a man with a good job, his own home in New
Orleans, and flood insurance hasn't been able to bathe in ten weeks.
He's quadraplegic and homeless. The lack of personal care has landed
him in the hospital twice. He now has a staph infection as a result
of his last hospitalization. His insurance will pay over one hundred
thousand dollars to repair his accessible home, but his community
is destroyed. There's no public transit system, no grocery store,
no health care system. He can't afford to keep paying the mortgage
and taxes on a home he can't live in; and he can't afford to move
to Baton Rouge where he could continue working and access health
care and other disability related services. A hundred thousand dollars
won't pay off his mortgage and it won't allow him to buy a new home
in Baton Rouge. The cost of housing is just too high there. What
is he to do?
Selena, also quadriplegic, started in her own home
in Bayou La Batrie, Alabama. She had chosen to pay for college rather
than pay for homeowners insurance. On August 29 she evacuated first
to family, then to a crowded, understaffed special needs shelter
where she slept in her wheelchair. When the shelter was unexpectedly
shut down, she was sent to a bed and breakfast without an accessible
bathroom. Her skin couldn't take the abuse. She ended up with a
life threatening pressure sore. Yesterday, she was transferred to
a nursing home. Selena survived the hurricane. She now faces surgery
and months of recovery. She's living in a nursing home and has no
place to go.
We worked around the clock for weeks to try to get
disability experts into the shelters to assess the needs of people
with disabilities who couldn't hear the announcements over loud
speakers or see the signs that directed them to assistance, or who
were losing critical stability because they didn't have access to
medication to treat their mental illness, or whose eyes, kidneys
and hearts were being attacked because they didn't have insulin,
or who didn't understand what they needed to do to get food and
water because of an intellectual disability or who couldn't stand
in line for seven hours, or seven minutes, because they lost their
wheelchair in the evacuation.
I have worked with others to rescue dozens of sophisticated
mobility hardware left at the New Orleans airport and reunite them
with their owners. I had to raise money from the Muslim Public Affairs
Council when we couldn't get any money from FEMA to move durable
medical equipment and supplies into the Gulf States to simply get
people a wheelchair, feeding tube or sterile catheter. The disability
community and our partners came together to try to take care of
our own. In addition, we were excluded from the larger relief community
despite repeated assurances that we would just be in the way and
make things worse. I received report after report about the Red
Cross shelters turning people with disabilities away or separating
them from caregivers or service animals, then sending them to nursing
homes when they couldn't maintain their independence.
When I inquired about the sheltering needs of people
with disabilities, one Red Cross operations official told me, "We
aren't supposed to help these people. The local health department
does that. We can hardly deal with the intact people," she
said. "Don't you understand that we're taking volunteers off
the streets to run these shelters?" The very same housing crisis
that has kept hundreds of thousands of people in restricted living
environments is now putting previously independent and self-sufficient
disaster survivors in hospitals and nursing homes for lack of appropriate
housing that allows them to use a bathroom and sleep in a bed.
We're still working to get to the tables where key
decisions are being made about temporary and permanent housing.
We've been trying to get to those tables since it first became apparent
that housing would be a critical need. Even today, housing decisions
are being made that will result in discrimination, further limited
options and institutionalization of people that could and should
be in our communities and in our work force. Groups like the New
Urbanists, who fantasize a community filled with high porches and
high price tags and who are at the table we are being denied access
to. Along with everyone else, I have learned over the past two months
that for all of the planning that has gone on, people with disabilities
are not in good hands. Without immediate and bold steps, their needs
will remain entirely unmet just as soon as the next disaster strikes.
I wish that generic systems were capable of holding
the very specific and complex needs of people with disabilities
in the foreground as they make quick and sweeping decisions. But
in a country that still thinks nursing home placement trumps community
based care for people with disabilities on a sunny day, we can't
rely on generic decision makers to make smart decisions for people
with disabilities in the midst of disaster. Just as we cannot expect
well intentioned medical and public service personnel to adequately
address the needs of people with disabilities in day-to-day situations
without a deep and thorough understanding of the tenets of independent
living and self-determination or absolute clarity of the human and
civil rights of people with disabilities, we can't expect these
dedicated community members to understand the complexities of meeting
the additional needs of people in the midst of disaster.
With some smart investment, not only can people with
disabilities begin to trust that their needs will be better met
in future disasters, taxpayers and the general public can rest assured
that we're maximizing limited resources and minimizing unnecessary
waste. In fact, amid all of the projections of huge additional costs
to meet the real needs of our citizenry in a disaster, there's clearly
an opportunity for visionary policy makers to save tax dollars while
maximizing limited resources. Now, who could possibly argue against
that?
It is in Benilda's memory, and with deep appreciation
toward those who have worked tirelessly over the past ten week in
the Gulf States, here in Washington, and around the country that
I make the following recommendations. Number one, we need an independent
task force convened immediately to focus on the specific issues
facing hurricane survivors with disabilities, the ongoing needs
for preparedness, rescue, mitigation and recovery specific to the
additional needs of people with disabilities and always with an
eye toward protecting those whose needs would be further sidelined
as scarce resources are redirected to those perceived to have more
immediate needs.
Number two, we need an Office on Disability, well
resourced and with real decision-making capability within the US
Department of Homeland security and one in FEMA. Our Office on Disability
at the US Department of Health and Human Services needs far more
resources and far more decision-making power and this need exists
in each of the Cabinet and Sub-Cabinet agencies who currently participate
in the Interagency Coordinating Council on Emergency Preparedness
for People with Disabilities. Without this, there'll continue to
be waste and unintended consequences when those ill-equipped to
make decisions on meeting the needs of people with disabilities
are the only ones able to call the shots.
Within FEMA national disaster medical system, there's
an exquisite model that I strongly recommend that we consider to
create a prototype to create disaster disability assistance teams.
The model uses highly trained and practiced state-based teams ready
to deploy to the site of a disaster upon request from FEMA to meet
a clearly defined need. Small teams of disability experts could
be ready at all times to address the disability specific needs of
disaster survivors with disabilities before, during and after.
Within the US Department of Health and Human Services,
the Surgeon General's office is working to develop a volunteer corps
to supplement FEMA medical teams. This corps, under the command
of Commander Dan Beck, could use our many experts with specialized
knowledge of the unique needs of people with disability in a disaster
and a real willingness to volunteer that expertise in times of need.
Organizations for people with disabilities who already operate without
adequate resources have had to use their limited funds to address
the needs of disaster survivors with disabilities as well as their
usual constituency.
Supplemental funds need to be given to these groups
to help them serve our communities now and in the future. These
groups, independent living centers, local chapters etc, are at the
heart of the solution. We know this. Let's make sure we support
what is working. Please listen to us when we come to you, members
of Congress and your staff, to talk about Medicaid, housing, and
other federal programs. Cutting Medicaid won't save money. It will
cost money. Failing to fund accessible housing solutions does not
save money.
We can appreciate that members of Congress are confused
like everybody else about what is best for people with disabilities.
We are very familiar with the pervasive bigotry of low expectations.
Please listen to those who know best, not those that have a financial
interest in filling nursing home beds or denying basic medical equipment
that maximizes health and independence. We can help make Medicaid
and Medicare, housing programs and other programs work better for
people with disabilities and save a lot of taxpayer dollars in the
process. And please, do not allow anyone to convince you to compromise
the civil rights of people with disabilities.
Our rights remain fragile even today, and these rights
are easily overlooked or dismissed in the time of emergency. This
is illegal; but if that isn't enough, it's also costly. Be good
stewards of tax dollars. Just say no to limiting or violating the
civil rights of people with disabilities. Finally, join us in calling
for a similar briefing for the Senate and for immediate action and
resources to address the urgent needs of people with disabilities
before the inevitable next disaster strikes.
We have the knowledge and the solutions to alleviate
a lot of unnecessary suffering and maximize very limited resources.
We have demonstrated an ability to lead and solve difficult problems.
Please give us the power and the resources to do what needs to be
done. We will make this country and our world a better place for
our efforts. It's the least we can do for Benilda and others like
her who perished because of our lack of leadership. Thank you.
Lee Page: Thank you, Marcie.
Claudia, if we could hear some comments from you that would be great.
Claudia Gordon: Good afternoon.
It's my pleasure to be here today to join this distinguished panel.
Also I see many of our Interagency Coordinating Council on Emergency
Preparedness and Individuals with Disabilities partners here in
the audience, and I particularly want to thank them. And I especially
want to thank Congressmen Langevin and Ramstad for hosting this
event today. I'm going to take a bit of a different approach. I'm
speaking here on behalf of the Department of Homeland Security,
the Office for Civil Rights and Civil Liberties. At the Department
of Homeland Security, we have the pleasure of chairing the Interagency
Coordinating Council on Emergency Preparedness and Individuals with
Disabilities. This Council was established about one year ago by
Executive Order 13347 and signed by President Bush. We recognize
the issue of Emergency Preparedness for people with disabilities
is not new. Much of what we've heard today is really just an example
of an ongoing problem. However, recent series of events have increased
the level of visibility and afford the issues a more prominent place
on the national agenda. For that we should be thankful. At the Department
of Homeland Security, we believe that people with disabilities should
be safe and secure in their home, workplace, and communities, just
as safe and secure as individuals without disabilities would be
in that situation. That's really what drives the work of the Interagency
Council. The Interagency Council is made up of 24 different federal
government agencies and departments. The primary vision of the Council
is for the Federal Government to ensure that the needs of individuals
with disabilities are fully incorporated in to all aspects of the
emergency preparedness, response, and recovery efforts. We have
focused on eight major areas: emergency communication, emergency
transportation, emergency preparedness in the workplace, technical
assistance and outreach, the state, local, tribal government coordination,
research, private sector coordination, and health. We have placed
great emphasis on coordinating issues with the private sector and
state and local government entities. If an emergency or disaster
strikes, the first responders--the first people who need to mobilize
are likely at the state and local government level. So we have to
invest a substantial amount of time working and coordinating with
the state and local emergency managers.
In fact, last year, Secretary Ridge specifically sent
a letter to state and territorial governors emphasizing their emergency
preparedness responsibility to their constituents with disabilities
and asking them to take several specific steps. He asked them to
ensure that their Emergency Preparedness plan is comprehensive as
possible regarding the needs of individuals with disabilities. We
have a web site and some of this is also included in our Annual
Report to the President. What I will do now is go into the activities
that we have been engaging in immediately after Hurricane Katrina.
We began to mobilize just a few days after the hurricane
and some of Interagency Council members and individuals here from
the private sector like Marcie Roth worked through the weekend,
collaborating with my boss, Daniel Sutherland and responding to
emerging issues. What we found was prior to Hurricane Katrina; our
role was mainly one of policy making. We were preparing to implement
recommendations proposed in our first Annual Report, and so forth,
we found ourselves in the position where we were receiving lots
of contacts from individuals that were affected who needed answers
and guidance. There was a need for leadership; and we assumed a
role that was operational. We began to have teleconference calls
with local service providers in the affected region and tried to
respond to their needs.
We also began to provide advice to the Secretary and
immediately created an Incident Management Team to respond to the
many urgent and unique needs off individuals with disabilities and
ensure that they were timely and adequately addressed. The team
consists of about nine members that represent different agencies
and departments, including Health and Human Service, Federal Communications
Commission, Departments of Education, Transportation, Labor. We
met on a daily basis as we tried to respond to the immediate, urgent,
critical needs of individuals with disabilities that were affected.
We also had a subject matter expert in the affected
region, Texas and Louisiana; this had been requested by the Secretary
of the Department of Homeland Security in a memo that he then issued
to the Admirals leading the operation in the affected region. We
also had several ICC representatives tour several shelters throughout
country. In fact, we had ICC representatives visiting Houston, Dallas,
Tulsa, Louisiana and Mississippi shelters to determine the conditions
of individuals with disabilities and whether their needs were being
met and do whatever they could to make sure their needs were being
responded. .
One problem that arose immediately after the hurricane
was the fact that people were moving from Louisiana to other states
and many of them had a critical, immediate, and urgent medical need
that required medication. Out-of-state pharmacies would not accept
their Medicaid card. The ICC was able to resolve this working with
our partner in Health and Human Services. We were able to get the
Center for Medicaid Assistance to repeal that issue so the individual
could get their life saving medication at pharmacies outside of
their home state.
The FCC also issued a reminder to television stations
about the need to provide closed captioning of emergency broadcasts.
We delivered a truckload of durable medical equipment to the Houston
Astrodome. Some of you saw it play out on television where many
individuals with disabilities, the elderly and other special need
had to leave their equipments behind when they evacuated from shelters,
boarded a bus to go to another shelter or another safe haven--they
were forced to leave their equipment behind. In response, we were
able to work with the Incident Management Team and partner in the
private sector to facilitate the delivery of durable medical equipment.
We also work in partnership with the DHS Web site
personnel to update a Web site designated for donations to include
durable medical equipment, hearing aids, communication access/interpreters
for the deaf and hard of hearing, and other items that individuals
with disabilities need at that time. In the beginning that Web site
included no categories of items specific to what individuals with
disabilities needed. We also found that several Web sites for disaster
relief, like the FEMA web site, had issues with regards to Section
508 compliance; in response, we were able to resolve those issues---Working
with FEMA and the DHS 508 Program office.
We had representatives from the Department of Transportation
provide advice on the transportation needed because that was and
still is critical area of need. In addition to accessible transportation,
another major issue is accessible housing, is a priority of ours.
I was deployed to Baton Rouge in Louisiana and I worked there for
one month. It was an eye opening experience. I think being there
on the ground really put into perspective what we mean when we say
the needs of individuals with disabilities must be fully integrated
in emergency management. We saw a system that tried to deal with
the disability issue on the sideline--as an afterthought, and I
believe that is where a lot of work needs to be done. Eventually,
we brought in a disability accessible architect expert from the
Department of Justice who was able to work side by side with the
FEMA housing officer offering advice and input. DOJ and HUD working
in partnership with the ICC also revised the one of FEMA's manufactured
specifications so that accessibility will be incorporated into the
design of future procurement as opposed to retrofitting post design.
This will help to ensure that families with mobility or other kinds
of disabilities were able to acquire accessible transitional housing.
We are currently working with the leadership of the
Department of Homeland Security to address the challenges ahead,
such as accessible housing, accessible transportation, and identification
of people with disabilities. Where are they now? Who are they? We
know that a lot of individuals who were otherwise living independently
in the community are being placed in nursing homes. And that's another
priority of ours to address, these people need to be returned to
the community in accessible housing.
We are also working to ensure that in future disasters
there will be ways to self-identify as a person with a disability
in the beginning phase of intake or registration for disaster assistance.
Because, as we learned with this disaster--we no longer know where
some of those individuals are located. We can't get a specific grasp
on the number. One thing I found that happened again and again in
Louisiana, the housing contractors, the housing leaders want to
know how much accessible housing is needed. What number? We can't
provide that number. So I think a system will need to be in place
in the future where we can identify individuals. And if not, we
still need to have a systematic approach that will serve as a guideline
for adequately responding to the need for accessible housing.
The Interagency Coordinating Council and partners
in this room, whom some of them I see, we look forward to working
in partnership with all of you, especially with Congress to improve
where we are on this issue. And, Secretary Chertoff, my boss--Daniel
Sutherland, is committed to this issue and we will continue to stress
the importance of this issue with the appropriate leaders within
the Department of Homeland Security. Thank you.
John Lancaster: Thank you
Congressman Ramstad. Thank you for hosting this event. The same
thanks goes to Congressman Langevin. The National Council on Independent
Living is an association made up of centers for independent living
all around the country. We serve, support, and advocate with some
of the most severely disabled people in this country that live independently
and productively in the community.
We have learned many things from this terrible disaster.
In all deference to the remarks from Claudia from the Department
of Homeland Security, we appreciate your efforts personally and
those things the Department has done. However, the bottom line is
that these efforts were way too little, way too late and it is still
late. In addition, there was basically nonexistent, non-coordinated
and clueless execution of evacuation efforts and emergency rescue
and relief at every level possible. It is a situation that as you
address what needs to be done must be approached in conjunction
with the Disability Community in this country. Relief efforts need
to be carefully coordinated with them by retrieving their input
and placing people with disabilities who know what they're doing
in charge of this stuff.
We have learned a lot of things. We feel that the
Red Cross and FEMA need to take responsibility for doing in-take
and referral in a manner that is consistent with the civil rights
and personal choices of people with disabilities. Many folks with
severe disabilities were referred to institutional settings without
an appropriate, consistent assessment process or even a record of
why they were being sent there, even though they had previously
been living independently in the community. Even CMS is only somewhat
aware of who has been placed in what institutions. These people
were placed in nursing homes as far away as Utah, Idaho, Pennsylvania,
and the Carolinas leading to an extra caseload onto protection,
advocacy systems and centers for independent living all over the
country, not just in Louisiana, Mississippi, and Texas. Advocates
for people with disabilities were repeatedly denied access to these
nursing homes and shelters and displaced people with disabilities
were separated from service animals and durable medical equipment.
No clear approach has been outlined as to how people
with disabilities that are eligible for FEMA aid are receiving this
aid. We've heard reports of many problems in shelters and reports
of FEMA's failure to provide key communications in alternative formats.
That it is not even to mention the issue posed by the fact that
people placed in nursing homes have not been informed of FEMA assistance
or the application process. In fact, people don't even know where
many of these people are. Reports are fragmentary as to how many
people were involuntarily institutionalized as a result of Katrina
and Rita. But from Alabama and the Atlanta metropolitan area alone,
we can conservatively say that four hundred were placed in institutions
in those areas. Project this over the 29 states to which evacuees
from Katrina were dispersed and the numbers are potentially quite
staggering. We know from Rebecca Tuttle, one of our folks down in
Alabama, that two hundred persons with disabilities were institutionalized
in the Atlanta, Georgia metropolitan area. So 200 of those four
hundred came from Alabama. Yavonka Archaga recently put critical
housing need in the disability community in the New Orleans - Baton
Rouge area at conservatively at least two hundred. Yavonka is the
center director for the New Orleans Center for Independent Living.
Christy Dunaway of LIFE in Mississippi confirms that the stock of
accessible housing is virtually nonexistent in Mississippi.
Though some of the accessible trailers based on the
DOJ approved design have reached Mississippi, they are not suitable
for many who require larger temporary housing due to mobility aids.
Furthermore, we know that very recently 120 people, predominantly
people with disabilities remain in Baker, Louisiana. The shelter
was substandard, temporary housing built in the area to provide
accessible housing. And many of those in the Baker shelter were
on their fifth or sixth or seventh shelter having been shuffled
around from place to place to place.
FEMA and Red Cross have failed to meet the housing
needs of people with disabilities, leaving many people in dire need
of housing or people being shuffled around all over the place, though
HUD has taken recent steps in the form of their Katrina Disaster
Housing Assistance Program voucher. FEMA, on the other hand, has
been extraordinarily slow to meet the housing and shelter needs
of people with disabilities.
Though persons with disabilities were technically
supposed to be the first priority to get housing, in practice they
have often been the last to get their housing needs met. And in
many cases, they're still waiting for desperately needed assistance.
The system of closing shelters and shuffling people around at the
request of a particular jurisdiction is proving dehumanizing. Moreover,
when temporary shelters were placed, for example, the Baker one,
they were not even placed in a site with the capacity to lay down
concrete so that the shelters could be made accessible.
When accessible trailers are made available, our NCIL
directors in Mississippi report that many of those made available
only meet the needs of people with certain types of mobility impairments.
NCIL is dismayed by policy calls for across the board
cuts and budget reconciliation to offset the cost of hurricanes.
NCILs, Protection and Advocacy Systems, NOD, PVA, and some of the
others, like National Spinal Cord Injury Association, that have
been working hard on these issues, have now stepped up to the plate
and spent significant portions of their own, very limited budgets
to fill gaps that the federal government has been totally unable
to address. And at the same time, some of us receive some federal
funds through contracts or grants, directly or indirectly. I know
with NCIL, part of our budget is a federal government contract to
provide much needed technical assistance and training to centers
for independent living and people with disabilities around the country.
And now all of these things are in threat of being cut. And our
centers, most of which receive some federal financial assistance
are probably going to have their budget cuts at the same time all
this extra work is being dumped upon them.
At the same time, you're talking about a reconciliation
bill where people who are on Medicaid now need to co-share or co-pay
when they don't have a job or a house anymore. I mean this is like
a double whammy for people with disabilities. First you throw a
hurricane on top of them, don't bother to evacuate them; then those
that do manage to survive, you don't provide them any services.
Then at the same time, you start fleecing their pockets. It's pretty
darn disgusting. And I'll tell you one thing, it says a lot of where
we've come in this country in terms of civil rights for people with
disabilities and other people who are economically disadvantaged.
Not very far! Instead of being lauded for it and given additional
resources, meaning the Disability Community for the way we've stepped
up, Congress is contemplating across the board cuts that will diminish
our capacity to respond. Funding for accessible transportation that
could get those with disabilities out of harms way during future
hurricanes or disasters, as well as funding for assistive technology
that in many cases people with disabilities lost during Katrina
or never had to start with and might have given them the warning
they needed, are not going to be there. What kind of message is
this? Somehow this sort of forethought planning for the next natural
disaster is lacking.
Furthermore, NCIL opposes the House's budget reconciliation
bill. The House promotes drastic changes to home and community based
services in section 3131 of that bill. These changes were not developed
in the consultation with disability community advocates. In addition,
many believe it threatened to undercut the only steady principle
around deinstitutionalization. At the same time, we now know that
thousands of people with significant disabilities are institutionalized
as a result of these disasters that weren't before. How are they
going to get out? We do not understand why they have failed to embrace
such provisions as Money Follows the Person, which would allow,
particularly in this time when people are in such great need, the
ability to get some control back in their lives to be able to access
the health care and personal assistance services they may need.
Why isn't that being supported by the House?
So, we have tremendous problems that play into the
issues. They say they need to lower budgets because of these disasters,
in a way that just adds another kick in the face to people with
disabilities. It's a disaster and it's going to be a worse disaster
if this budget reconciliation bill goes through. I want to add a
personal note, say that NCIL would have had the director of the
New Orleans center sitting here to talk to you today if we could
have arranged it. She frankly said I cannot leave the work I am
doing now in New Orleans and Baton Rouge. Actually she's in Baton
Rouge, her center got wiped out in New Orleans and they don't have
a place to go. She has been talking to me regularly and Daniel Davis
on our staff. And right from the get-go, they had over a hundred
severely, significantly disabled people with disabilities that they
were serving and supporting in living independently and productively
in some of the worst neighborhoods of New Orleans, ones that were
totally inundated when the levees broke. And at that time, a hundred
and three people that they were actively following were in their
homes. The center had worked with the authorities in New Orleans
and the state under evidently some FEMA regulations or guidelines
to actually have an evacuation program plan in place for all those
individuals in the event of a terrible disaster such as this or
in the event of some sort of terrorist attack in which an evacuation
would be necessary. They all had an assigned evacuation number;
they were all on an evacuation pick-up route. They had a number
to call if they weren't being picked up. But none were ever picked
up.
As Yavonka and her staff were buttoning down their
center and evacuating, trying to get some computers out and evacuating
to Baton Rouge, they started getting calls from these people. Nobody's
picked me up. Nobody's answering the number I'm supposed to call.
What do we do? Can you get us? The plan was never executed. And
of those hundred and three people, they still have not located or
identified 45 of them. No idea whether they're dead or alive; and
if they're alive, where they are? They do know that some have passed
away. One of the 45 people has a body that is unidentified. And,
they can't officially identify her despite having an idea who she
is because the authorities won't release the body to the family
because the family happens to be out of the country. So there's
nobody they can really, really get in there to identify her.
So, it's a terrible situation, Yavonka suspects that
many of those 45 people just simply never made it; like the woman
that Marcie described who was a good friend. And there was a plan
set up. But nobody even attempted to execute it. Systems totally
failed when it came to the evacuation. And Yavonka says, in her
words, right now, the situation in terms of assisting people, locating
them, providing housing, providing personal assistant services is
ridiculous and virtually nonexistent.
However, what is getting done is being done by people
with disabilities themselves with scant resources. Her center and
staff is overworked and extremely stressed. In addition, they are
working extremely long hours, while receiving virtually no help
from any government source. She said the state of Louisiana is crumbling
in her opinion and is totally nonfunctional when it comes to any
issue relating to people with disabilities. She also said, she has
a tremendous need for personal assistants and personal care attendants
to assist people that they have identified as well as relocate them
to their home areas. She has people who want to become personal
care attendants that have lost their other jobs because of the disaster
and are willing to do this kind of work, but she cannot identify
anybody in the state that will approve and license them because
the state has cut all those services financially. And, the Medicaid
monies that were there to pay those personal care attendants is
not present. She said the situation for people with disabilities
in New Orleans is really, really bad.
So, we hope that the situation is going to start getting
addressed, and seriously addressed on two fronts. Number one: What
do we do about folks now that desperately need services as we sit
here and speak? And number two: How are we going to prevent this
from ever happening again? And, the disability community needs to
be at the table for those conversations.
Lee Page: Thank you for that
eloquent and very frank perspective. You've already heard some of
the thoughts that I spoke about, what PVA's gone through in our
chapter down in the Bayou area. But I want to turn over to Natalia
Mason who is here from the Red Cross and so we can hear some of
her thoughts at that time.
Natalia Mason: Again, I'm
Natalia Mason, I'm the manager for partner services; and I'd like
to thank Congressman Jim Ramstad and Congressman Langevin for hosting
this event to give us an opportunity to listen to the stories that
you've shared, to help inform how we address persons with disabilities
in the entire cycle of a disaster; in preparedness in recovery,
in response, as well as mitigation.
I'd like to introduce my colleague, Mary Lou. She's
with our Office of General Counsel. She's our point of contact for
the ADA issues. As well as Lynn Crab, who is our manager of mass
care. I think it's important for me to take a moment to review with
all of you the role of the Red Cross in a disaster. I'd like to
start there, and then speak with you specifically about what we
are interested in doing with regard to partnering so that we are
able to address the issues of persons with disabilities.
The Red Cross is a humanitarian organization led by
volunteers and people guided by it's congressional charter and the
fundamental principles of the national Red Cross movement that provides
relief to victims of disaster and helps people prevent, prepare
for and respond to emergencies. Our organization is not a federal
government organization, but a non-governmental organization. And
we're a voluntary organization charged with helping people prepare
for and respond to disasters. With regard to our role in the national
response plan, we are the emergency support function number six,
which means mass care.
Mass care specifically means feeding, sheltering,
first aid, disaster welfare information. So, that's our mandate,
and we provide those services in the immediate aftermath of a disaster.
I'd like to share with you some statistics that will really help
emphasize the catastrophic nature of this particular disaster compared
to any disaster that the Red Cross has encountered in its almost
125 year history of dealing with disasters. The scale with which
we provided immediate relief services to the victims of Hurricane
Katrina and Rita, again, it's unprecedented; overnight stays in
shelters, for example, 3.4 million as of November 2. And let's compare
that to the 2004 hurricanes, which at that time was the largest
disaster event in the history of the Red Cross. At that time, 519,000
clients were housed in shelters. With regard to meals and snacks
served, during Hurricanes Katrina and Rita, we provided 49 million
meals. In the 2004 hurricanes, we provided 16 million meals. As
far as family assistance cases that were opened during Hurricanes
Katrina and Rita, 1.4 million cases were opened, supervised, managed
financial assistance. So, in addition to providing shelter and providing
meals and snacks, there were needs beyond those two areas that we
took on as well and provided some basic immediate financial assistance.
During the 2004 hurricanes, that number was 73 thousand. So, at
one point, I understand the long hours and the immense pressures
that all of us have been under working 18 hour days.
I work in many disaster-operation centers at the national
headquarters. I think that this past weekend, because it was my
anniversary and my birthday, I was able to take the weekend off.
But it was the second weekend that I had off since August 23. And,
it was only because I was able to have someone actually relieve
me who finally had some rest. But, I say that to say that I was
among about 200,000 workers that had been recruited to help support
this particular disaster. And, if we compare that to the hurricanes
of 2004, the total number of workers we had out in the field was
just 34,000.
So, many of the issues I've heard today have much
to do with bringing 200,000 volunteers into the most catastrophic
disaster that the Red Cross has ever had to deal with. And, my particular
area of expertise, or my particular area that I'm responsible for
is community relations. Community relations, for the Red Cross,
insures that the interest, concerns, needs and resources of individuals
and organizations representing the diverse population in the communities
affected by disaster are considered on the relief operation.
So, this is just one of the many areas that partner
services in my particular area handles. And, I think that the response
to Katrina and Rita, based on my having told you what it is we do,
is far beyond the scope of any one organization. We are here to
reinforce how important we know our partnerships are with the organizations
that represent persons with disabilities. We are not so arrogant
to believe that we have been able to address the issues of persons
with disabilities in this particular disaster, and that we know
everything there is to know with regard to providing services in
a catastrophic disaster or any other kind of disaster.
During the time that Katrina and Rita was consuming
our relief efforts, we were also responding to--on an annual basis
we respond to 70 thousand disasters. So in the midst of the worst
disaster of the history of the Red Cross and the history of this
country, we were also addressing disasters all across the country
that were a part of our purview. But, I wanted to make sure to provide
that perspective to everyone, and, specifically with regard to organizations
that represent persons with disabilities.
I am new to this particular role. My interest is in
learning as much as I possibly can. This is a new beginning for
partner services with working with persons with disabilities as
far as my role is concerned. We've already begun our partnerships
with the Interagency Coordinating Council of which Claudia is representative
of that organization. As a result of the meetings that we've conducted
with them, we came away from our initial meetings with some very
concrete actions. We also look forward to future meetings with the
other folks that are sitting here on this panel. I think that we
are where we need to be right now. I personally am committed to
learning as much as I can and also working with our partners to
ensure that we implement actions in a systematic way to help us
deal fairly and equitably with persons with disabilities in the
cycle of disaster.
With the Interagency Coordinating Council, we took
their advice. We did provide guidance to our volunteers and specifically
to our shelters with respect to general information on how to identify
persons with disabilities in order to provide the appropriate services.
That wasn't enough. Based on the advice that we received from the
Interagency Coordinating Council, we have refined that guidance
and expect to publish that guidance broadly and incorporate that
guidance, and any advice that the panel here can provide us, into
a number of different places. With regard to preparedness, we do
have materials that we provide for persons with disabilities on
how to prepare for disaster. We need to do more. With regard to
responding to disaster, training obviously had a critical gap.
With regard to identifying, appropriately, people
who should, in fact, have been allowed into shelters, my commitment
is to ensure that we provide information and training on persons
with disabilities as broadly and as specifically as we possibly
can, both on disaster operations in general and across the organization.
I agree with what I've heard regarding how specialized the knowledge
is that persons providing services to persons with disabilities
needs to be; and I'm in complete agreement. And we have spoken with
our staffing folks about the possibility of creating a specialty
track that would allow that type of support in a disaster. I understand
that it was difficult for persons who are deaf or deaf and blind
to understand what was going on in shelters. We need to do better
with that. We welcome any suggestions that you would have with regard
to how to incorporate technology in the midst of a disaster so that
we can do that before a disaster occurs. This is an opportunity
to take a look at that. In my particular role, it's my job to encourage
chapters to know their community demographics so that we're able
to anticipate where the needs are in the community prior to a disaster.
So that when there is a disaster, we can probe appropriately and
adequately address those needs. That includes identifying who the
persons with disabilities are in their communities. And finally,
it's particularly important for me to re-emphasize just how important
it is for us to all understand that Katrina and Rita was an unprecedented
disaster in the history of the Red Cross and in the history of this
country. And, again, the response and the recovery that we are faced
with, which is going to be several years in the making, is beyond
the scope of any one organization. We welcome your advice. We welcome
your joint action as we move forward. Thank you very much.
Lee Page: Thank you very
much Natalia. That was great. Our last speaker is Patricia Pound
from the National Council on Disability.
Patricia Pound: Thank you,
Lee. I appreciate the hosting of this meeting by the Congressmen.
The National Council on Disability is an independent federal agency
that makes recommendations to the President and Congress to enhance
the quality of life for people with disabilities. Our April 2005
report, Saving Lives: Including People with Disabilities and Emergency
Planning, reviews the status of emergency services and people with
disabilities in America.
The hurricanes this fall certainly provided dramatic,
real life demonstration of the need for disability policy and leadership
in this area. Today, I would like to share some examples of progress,
challenges and recommendations for the future. I address progress
because sometimes the problems seem too immense that they don't
seem solvable.
In my experience with getting people within governmental
and nonprofit structures to move is to show them that it is possible
to build on what progress we have. We saw that governors in Mississippi
and Texas, along with several federal officials had sign language
interpreters as they provided critical hurricane information. We
also think that captioning of emergency information appeared to
be improved, partly because of one state's association of broadcasting
reminding television stations of their legal obligation to do so.
Some state and local leaders made commitments to assist
people with disabilities to evacuate and upheld these commitments.
State and local disability organizations provided evacuation disability
services for people with disabilities. Examples of assistance provided
to the evacuees included replacement of wheelchairs, availability
of transportation, replacement of canes, Braille writers, eyeglasses,
hearing aids, hearing aid batteries, and in the case of one gentleman,
even a replacement of an artificial leg. Some also received home
health services, respite care, substance abuse counseling, etc.
The flexibility of shelter workers was amazing. In
one shelter the age range was six months to 102. In fact, the request
of one of the 102-year-olds was for a bed in front of the big screen
TV. I suspect maybe she had low vision. One of the buses that arrived
in one of the cities in need of shelter contained 80 individuals
who had autism and three nuns. We really were appreciative of the
three nuns. Yes, the hurricanes this fall highlighted awareness
that the relationship between emergency management and people with
disabilities is far from what it needs to be.
Obviously, we've heard a lot about that today. Challenges
revealed included people with disabilities that were unable to leave
their homes, hospitals, nursing homes, without significant assistance.
Some received that assistance; others did not. Available public
transportation was sometimes limited and the degree of accessibility
was often unknown. The amount or availability of personal care attendants
and sign language interpreters was often inadequate or in the case
of people who didn't evacuate, nonexistent. The communication about
evacuation instructions and instructions in shelters was difficult
for people with hearing disabilities without video phones, relay
service, captioning or sign language interpreters.
Some people became separated from life critical aids
such as care givers, medication, or services such as dialysis, as
well as equipment. In light of the serious implications the hurricanes
continue to have on people with disabilities, the National Council
on Disability recommends a coordinated federal plan for hurricanes
be developed that focuses on the needs of people with disabilities.
It should include accessible disaster facilities and services, accessible
communications and assistance, and accessibility of rescue efforts.
Immediate actions that DHS could take include: establishing
a point person on disability reporting to the Secretary to provide
guidance, coordination and leadership: developing and implementing
a coordinated federal disability hurricane recovery plan; and establishing
a disability advisory group targeting resources to make critical
needs of survivors with disabilities accessible, especially affordable
accessible housing.
More long-term actions that NCD recommends DHS do
is ensure that the reconstruction rebuilding efforts have the resources,
medical equipment, and supplies to address the needs of people with
disabilities; educate and train emergency personnel during all phases
of operations on how to support the independence and dignity of
people with disabilities; follow accessibility requirements and
universal design principles during all the reconstruction phases;
rely on disability organizations for ongoing advice and guidance;
and provide funding for them to provide such aid.
NCD's report, Saving Lives,
provides further advice about the steps the Federal Government should
take to build a solid and resilient infrastructure that will enable
the government to include the diverse populations of people with
disabilities in emergency preparedness, disaster relief and planning
Some of the major findings of the report include:
people with disabilities frequently encountering barriers to physical
facilities, communications, and programs in shelters and recovery
centers and elsewhere during the disaster. Many barriers are not
new. Lessons learned are frequently not communicated across agencies
and they're not communicated across disasters.
People with disabilities are too often left out of
preparedness and planning activities related to emergencies, including
the analysis and documentation of the potential impact of possible
emergencies on life and property; disaster preparedness and response
systems are usually designed for people without disabilities who
can rely on walking, running, seeing, hearing or quickly responding
to instructions; and access to emergency public awareness or public
warnings is often not available to people with hearing and vision
disabilities.
The strength that community-based organizations can
provide in emergency planning is frequently not utilized. The DHS
offices do not get many complaints from people with disabilities,
but this is inconsistent with the stories that we hear about the
true experiences. Key recommendations from the Saving Lives report
include: DHS should establish a disability access advisory group
separate from the organizations coordinating council; DHS should
integrate information about people with disabilities into all materials
as well as advise people where they can locate more customized materials;
DHS should issue guidance to state and local governments about meeting
the responsibilities of Sections 504, 508, Rehabilitation Act and
the Americans with Disabilities Act; the FCC should strengthen the
enforcement mechanism to insure video distributors comply to make
emergency information accessible to people with vision disabilities
and they should act on violations quickly, as well as promote Section
255 hearing aid compatibility; DHS should develop and offer technical
assistance and guidance materials for grantees regarding the grantee's
responsibility to comply with Sections 504 and 508 and ADA. They
should proactively review compliance efforts of grantees and publish
such information where people can understand what's happening on
compliance; and DHS should collect and aggregate information about
compliance efforts and also make that information available.
Lastly, I want to share that our chairperson, Lex
Frieden has written a letter to the President talking about the
tremendous opportunity that we have in the rebuilding, reconstruction
and resettlement efforts. We will be rebuilding homes that could
be designed by universal design elements. We'll be rebuilding schools,
hospitals, medical facilities, government infrastructure, all of
which need to meet ADA standards for the rebuilding. We also could
make our communities, as we rebuild them, more livable. Also, earlier
this year the National Council on Disability published a report
on livable communities for adults with disabilities. It describes
many aspects of livability that exists around our country, things
that could be modeled as we rebuild. Each livable community is one
that promotes the independence, productivity, safety, security,
inclusion and choice for all people within the community. We have
an opportunity to apply those concepts and use the information that
is already gathered and consistent so that people can use and make
our communities useful to us all. I hope that we will come out with
some actions that we can all be proud of a year from now, if not
sooner.
And, I would like to say too, that in the handout
in the back of the room there's a number of internet addresses for
the two reports mentioned, as well as all the work the National
Council has done related to emergency management. Thank you.
Lee Page: Thank you, Patricia
for those words and what NCD is doing. At this time, that concludes
what the panel has to say. As you can tell, we've covered a lot
of bases of what people with disabilities face in the light of Hurricanes
Katrina and Rita. And our time is short now, but we do have time
for some questions and answers, and I do see some hands going up.
So I'll start over here. And just if you can ask your question,
or maybe come up and use the microphone. I will leave it open to
anyone on the panel to please answer at their discretion.
Edwina Schula: I'm an advocate
for people with disabilities fire and life safety. I don't work
for any agency, been an advocate on my own, and I know most of the
people at the table. I'd like to specifically address this question
to Hilary Styron of NODPDI, the national organization of disabilities
recognized on the 18th of September, 2001 created in response to
the disability community rising up and saying that we needed to
address these issues for us. I think 9-11 was the bell for them
that got their attention. Mr. Reich, who passed away on Tuesday
called that meeting on September 18, just several days after 9-11.
What came out of it was their Emergency Preparedness Initiative.
To my knowledge and I've been around doing this for more than thirty
years, it's the only disability-based organization that has ever
tackled the problem of disabilities in Emergency Preparedness. So,
that being said, I'd like to ask Hilary, who is the newest person
in the field here.
Hilary Styron: No.
Edwina Schula: But has a
comprehensive background. I'm hearing things I've been hearing over
and over and over again and what can happen now to change things?
I know Claudia and her organization has done massive amounts of
work, but how are we going to get government to support what we're
doing? This is a very simple question.
Hilary Styron: It's a simple
question, but it's not a simple answer. It's going to take everyone
to become self-reliant, self-prepared, and personally accountable.
It is also going to take all levels of government recognizing that
this is a critical part to emergency management planning. I may
be new at this table as far as we are concerned being everybody
else has been up here for 20 years in their organizations, but I've
been in emergency management for the last fifteen years and spending
years on Capitol Hill doing their accessible emergency planning
and working with the house committee, it is ownership that we're
fighting right now, politically, who owns it, is it the mayor's
job, the governor's job? It's everyone's job. It begins at your
house. Preparedness is every day. It is not one month a year. It
needs to be tied in to federal funding, minimal meet or exceed compliance
regulations. We have OSHA, but we don't have anything that regulates
emergency management for people with disabilities.
The national response plan was written, we're not
in there. If you're written in to emergency management plan, special
needs are usually part of an annex. You're thought of afterwards.
Government needs to open their blind minds and think outside the
box; and bring disability leadership and emergency managers to the
table to work through this problem that we continue to have.
We can set up effective operations, we can make this
change; and it can happen. There will be loss of life, I understand
that, but I do not want to go in to another room and be told by
a first responder or an emergency manager or a general or a major
that the special needs population is automatically collateral damage.
I will not hear that again and you should not either.
Edwina Schula: One last thing,
you mentioned government is for all people.
Hilary Styron: The government
is for all people, and we elect these people to protect us.
Carl Vaughner: I am with
Fairfax county government. I'm just wondering if anybody on the
panel knows of a local jurisdiction whether it be state, county,
city that has done a good job, at least on paper of including people
with disabilities and the issues facing them in emergency planning
development and management. At least as far as strategic plans go.
Hilary Styron: Working with
the national capital region for several years now in emergency planning
there are several local jurisdictions that actually are in good
practices. They are working on redeveloping and reanalyzing their
plans. There has been, for the last several years a push to focus
on terrorism preparedness and we lost sight of some of those issues.
The national capitol region has recognized that within
each county they need to re-evaluate strongly what they're doing
for the special needs population. As part of this last fall's September
national preparedness month activities, they produced a survey where
they interviewed the population of people with disabilities and
nondisabled individuals; it was a general, random survey. They were
able to assess people's level of preparedness. They're incorporating
those answers, which by the way are not good. How many people in
this room have a plan right now? Do you know how to get out of this
room? Five hands. Have fun.
Now, this is the House, we're working on getting accessible
elevator use and planning, we're getting there, I'm working on it.
They're definitely re-evaluating their plan. They'll be incorporating
this in their plans because I'm meeting with them on the 29th of
November. I will be meeting with the DC mayor and the emergency
management director and Tom Lockwood with DHS; so we'll be doing
things regionally.
Lee: Claudia did you have
a response?
Claudia: A brief response
to the man that asked the question about city, county, if I understand
the question correctly. I had the pleasure of traveling to Tulsa,
Oklahoma and you would be interested in what they're doing there.
They've been doing an excellent job for the whole community on individual
preparedness, but have also incorporated people with disabilities
in their work. And I have several examples. Is there a safe room
because Tulsa is very susceptible to tornado? Were they able to
work and get a safe room that is accessible to an individual with
a physical disability. They also partner with the Tulsa speech and
language hearing association to provide sign language interpreters
for individuals who are deaf or hard of hearing. Another example
of their work is that they're partnering with NOAA to develop a
radio with flashing alert for people that are deaf or hard of hearing
so that they could receive a warning. So, Tulsa is a model in this
area, I believe.
Bill Parsons: I am with Congress
Chris Van Hollen's office. I have a question that I think should
be addressed to Claudia. When Hurricane Katrina hit, we had a constituent
caller who had a son in an ICMFR facility; and he was concerned
about similarly situated people in the impact zone. We called FEMA,
HHS, and CMS to double check the locations of nursing homes and
of ICFMR facilities as a matter of basic protocol of first responders
who were in the position to go to geographic locations where these
people are. I can't tell you how many people I talked to and nobody
could confirm for us that was done as a matter of basic protocol.
It struck us and the Congressman that it would make good sense to
do something that certainly could be done beforehand as a matter
of preparedness. Can you tell us today whether or not that is part
of basic protocol; if it's not, whether you think that would be
advisable.
Claudia: Let me see if I
understand the question. You are asking about what happens when
taking this person to a shelter?
Bill Parsons: No, what I'm
talking about is a matter, as part of preparedness planning, are
the first responders, the actual people who are in a position to
go to facilities and in particular, in this context, I'm talking
about nursing homes ICFMR facilities that are going to be housing
people. It's safe to assume many of whom are not in a position to
evacuate themselves necessarily, are the physical locations of those
facilities as a matter of course provided to first responders for
purposes of evacuation in the event of a disaster.
Claudia: We try to promote
community preparedness as a part of outreach and education. Nursing
home, group home, and individuals with disabilities themselves should
make information available to their local emergency manager about
their location and the need they have in case of emergency or disaster
so that in the event of a disaster, like Katrina, they can respond
and know where to find the individual. But it has to be in place
before and that's part of outreach that we intend to push even further
and more aggressively giving the lessons that we have learned.
Bill Parsons: If you ask
me, we have no assessment date, mandate in the state or local facility
emergency management entity to do that.
Hilary Styron: There is no
law that requires that nursing home facilities are at the table
with the emergency management planners and vice versa. Those hardened
facilities and locations obviously we know where they are, but the
responders have to know to ask where they are. In New Orleans, the
responders, the people working in the operation center, did not
know based on zip code of what the break down was of the disabled
in their community. And that is rampant across this country. There
is not a law that requires it. It should be common sense, one would
think. But it's not.
Claudia: If we need to pass
a law to make that happen. we should probably pass a law. My suspicion
is there's nothing that prohibits it.
Hilary Styron: There's nothing
that prohibits. It has to occur. They both have to come to table.
Claudia: I'm offering that
as a suggestion.
Marcie Roth: I'm going to
respond to that as well as a resident of Montgomery County, Maryland.
I know we're doing a dismal job on a daily basis of meeting the
needs of people with disabilities. As a parent of two children with
disabilities, I know we're not making huge progress on that front.
I know for sure I cannot rely on my community to do an adequate
job of meeting my children's needs, my family's needs, in case of
an emergency. I know that's not happening. If that's not happening
in Montgomery County, Maryland, I'm sure it's happening even less
in other parts of the country.
Kathy Hardgan: I'm a member
of the President's Committee for People with Intellectual Disabilities.
I appreciate Marcie acknowledging that the population exists and
are under the radar. Every meeting I ever attended when they talk
about disabilities, they talk about mainstream disabilities. They
forget there are people with developmental disabilities who cannot
plan for themselves. They're dependent on their stakeholders, families,
group home providers, whoever does the plan for them. Many of these
people have cognitive disabilities. That's not what brought me up
here. What brought me up here is an understanding I have that many
families were separated when they were evacuated and that they are
still separated. And I want to know who is taking responsibility
for finding those families and reuniting them now.
Hilary Styron: I understand
that cognitive and intellectual disabilities take a different level
of planning. We're reaching out to their care providers and constituents
that are responsible for advocating and protecting those individuals.
We developed training materials for individuals themselves but also
their care providers. It's a very different approach, and I'm not
denying or negating that issue exists. I absolutely acknowledge
that it does.
Natalia Mason: Evacuees and
those trying to restore their family links with folks that have
been dispersed, actually there's a vehicle that's called our family
links registry; it's on www.RedCross.org. You can go to the family
link at www.KATRINASAVE.com. That's a resource. I don't know whether
that resource allows for family members to self-select in any way
to identify themselves other than their predisaster address and
some contact information.
Marcie Roth: I don't believe
that web site is accessible. And I also think for people who don't
read or for people for that matter who don't have access to a computer,
it's not an option.
Jeff Rosen: I just have a
quick question. I work at the National Council on Disability. My
question is to the American Red Cross. We work with the Red Cross
trying to set up more of a stronger response that's more accessible;
and we continue to collaborate. One thing that I continue to hear
is that we tend to talk about the response in terms of providing
guidance, but that's not enough. Until you dedicate personnel, resources,
funding, you're never going to achieve your objective. I haven't
heard the Red Cross once commit to doing that because accommodations
cost money. You need money to pay for interpreters; you need money
to get access to different shelters. And when you don't have the
resources available or set up, then things fall apart and they continue
to. When are you going to commit those resources? When are you going
to agree that that is necessary? When are you going to send somebody
who's a responsible person who serves in that community?
Natalia Mason: Thank you
for your question. With regard to personnel, it is my responsibility,
in fact, to identify and actually hire someone to address the needs
of persons with disabilities. I strongly believe, and I know the
Red Cross strongly believes that in order to provide service delivery
to our evacuees, clients, and victims of disaster in general, our
service volunteers need to look like the people they are serving
and need to be like the people they are serving. So, that is one
thing that I can say that I can do. With regard to other resources
and funding, again, this is not a disaster that we can address on
our own. We need to reach out to our partners. To leverage all of
the resources that are available so that we can approach this situation
productively and efficiently.
Lee Page: Yes, question?
Come on up. Feel free, come on up.
Bonnie: I work with Claudia
in the Interagency Coordinating Council. I do appreciate all of
your efforts to work with us and get guidance from us. In follow-up
to Jeff's suggestion, I'm just wondering/recommending that the Red
Cross undertake a comprehensive approach to training staff across
the country so that the staff and volunteers can work in collaboration
with the civilian community. I know you've been working on guidance,
but do you have more comprehensive training than you do?
Natalia Mason: There is a
need for more comprehensive training, but also a need for some very
specific training that can address the specific needs of persons
with disabilities. I think that one area that could serve the persons
with disabilities particularly well are the representatives or volunteers
that we have in community relation organizations. They are specifically
tasked with going out into the community and identifying persons
whose needs are beyond the scope of our standard services. So, that's
one area that I know we can impact. We have had discussions internally
regarding incorporating training into many of the different curricula
that help our volunteers provide services on a disaster. So that
means not only are we considering providing some specialized training
and considering a specialty track, because we've heard that a number
of times, that's really something that's necessary. But, ensuring
that exposure to and knowledge about working with persons with disabilities
happens across all of Red Cross training for all of our volunteers.
Marcie Roth: It's critically
important that as a part of that process, certainly people with
disabilities need to be hired and brought in to the team.
Natalia Mason: Yes.
Marcie Roth: It's not enough
to have a disability. It needs to be absolute top experts on facilitating,
resourcing, responding, information referral, and those kinds of
skill sets. So, it's beyond training because people who have been
trained will come and go.
Natalia Mason: I agree.
Lee Page: Okay, any more
questions. Seeing none - yes.
Speaker from the floor: It
was mentioned earlier about emergency managers. Who are they, and
how do we find out who they are in the area?
Hilary Styron: Emergency
managers, depending on your jurisdiction will vary. It could be
a mayor as a designated emergency manager. It could be the fire
chief in your community. It could be secretary of the principal
federal officer on a disaster. The emergency manager as your designated
official will vary depending on what level of government is involved.
If you want to know who your emergency manager is in your community,
you should visit the community's web site. If they have one, call
the city administrator's office or the fire department. A non-emergency
number, please. And ask them who their emergency manager is. If
they cannot tell you, then you can call me and I will find out and
tell you. I have a list of all emergency managers in the country
at different levels of government and will be able to access that
for you if your own community cannot tell you. We did have that
experience recently here in a local jurisdiction that couldn't spell
it out for us, so we spelled it out for them.
Lee Page: I'd like if you
could give a big hand. Thanks, of course, Congress Langevin and
Jim Ramstad and Amy Judge for the room here today. I guess in closing,
you know, we've discussed a lot of heavy topics today. You know,
here we are two months out after Hurricanes Katrina and Rita devastated
the gulf region and the biggest void in the room is that there's
nobody here from FEMA, but which is the federal emergency management
response. But, saying that we are all trying to do our best, one
of the things that we must recognize is responsibility starts at
home with people with disabilities and all citizens themselves first.
Whether you live in the Gulf States region or California where earthquakes
are, or where tornadoes are, or where there's a fire or whatever,
the responsibility starts with us first. We've had systems that
failed from the top and the bottom and the middle and the side.
We need better communication, better coordination and obviously
people with disabilities need to be involved from the beginning.
So, having said that, thank you for coming. Thank you for being
here and we're adjourned.
Adjournment
Meeting ended at 3:50 p.m.
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