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Saving Lives:
Including People with Disabilities in Emergency
Planning
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
Lex Frieden, Chairperson
April 15, 2005
Saving Lives: Including People with Disabilities in Emergency
Planning
This report is also available in alternative formats and on the
awarding-winning National Council on Disability (NCD) Web site
(www.ncd.gov).
The views contained in this report do not necessarily represent
those of the Administration as this and all NCD documents are not
subject to the A-19 Executive Branch review process.
Letter of Transmittal
April 15, 2005
The President
The White House
Washington, DC 20500
Dear Mr. President:
The National Council on Disability (NCD) is
pleased to submit to you this report, titled Saving Lives: Including
People with Disabilities in Emergency Planning. Under its congressional
mandate, NCD is charged with the responsibility to gather information
on the development and implementation of federal laws, policies,
programs, and initiatives that affect people with disabilities.
In 2003, as a result of your Administration’s initiatives in homeland
security, NCD committed to evaluate the development of the Federal
Government’s work in that area as well as in the areas of
emergency preparation and disaster relief as they relate to and
affect Americans with disabilities.
All too often in emergency situations the legitimate
concerns of people with disabilities are overlooked or swept
aside. In areas ranging from the accessibility of emergency information
to the evacuation plans for high-rise buildings, great urgency
surrounds the need for responding to these people’s concerns
in all planning, preparedness, response, recovery, and mitigation
activities. The man-made homeland security terrorist event of
September 11, 2001, as well as the recent energy blackouts in
the U.S. Northeast and Midwest and, more recently, the natural
disaster hurricane events in Florida and the tsunami event of
December 26, 2004, underscore the need to pay attention to the
concerns raised in this report.
The decisions the Federal Government makes, the priority it accords
to civil rights, and the methods it adopts to ensure uniformity
in the ways agencies handle their disability-related responsibilities
are likely to be established in the early days of an emergency
situation and be difficult to change if not set on the right course
at the outset. By way of this report, NCD offers advice to help
the Federal Government establish policies and practices in these
areas. This report provides examples of community efforts with
respect to people with disabilities, but by no means does it provide
a comprehensive treatment of the emergency preparedness, disaster
relief, or homeland security program efforts by state and local
governments.
This report provides an overview of 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 homeland security programs. This infrastructure would
incorporate access to technology, physical plants, programs, and
communications. It also would include procurement and emergency
programs and services.
NCD commends the Administration and those in leadership positions
for the issuance of the July 22, 2004, Executive Order on individuals
with disabilities and emergency preparedness. In addition, NCD
acknowledges the work of the Department of Homeland Security (DHS)
and the Federal Communications Commission in their efforts to ensure
that Americans with disabilities are included in the developing
infrastructure.
It is our expectation that, through this report, NCD can promote
a focused dialogue and communicate critical information to you
and your staff at the earliest practicable time to address issues
of importance to people with disabilities in the ongoing development
of DHS infrastructure.
We stand ready to work with you and the members
of your Administration to improve the nation’s homeland
security, emergency preparedness, and disaster relief infrastructure
for all Americans.
Sincerely,
Lex Frieden
Chairperson
(The same letter of transmittal was sent to the President Pro
Tempore of the U.S. Senate and the
Speaker of the U.S. House of Representatives.)
National Council on Disability Members and Staff
Members
Lex Frieden, Chairperson, Texas
Patricia Pound, First Vice Chairperson, Texas
Glenn Anderson, Ph.D., Second Vice Chairperson, Arkansas
Milton Aponte, J.D., Florida
Robert R. Davila, Ph.D., New York
Barbara Gillcrist, New Mexico
Graham Hill, Virginia
Joel I. Kahn, Ph.D., Ohio
Young Woo Kang, Ph.D., Indiana
Kathleen Martinez, California
Carol Novak, Florida
Anne M. Rader, New York
Marco Rodriguez, California
David Wenzel, Pennsylvania
Linda Wetters, Ohio
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Analyst
Mark Seifarth, Congressional Liaison
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
TABLE OF CONTENTS
Acknowledgments
Executive Summary
Part I. Introduction
Part II. Improving Access to Disaster Services for
People with Disabilities
Part III. Role of Community-Based
Organizations
Part IV. The Developing Disability-Related Homeland Security,
Emergency
Preparedness, and Disaster Relief Infrastructure
Part V. Conclusions and Recommendations
References
Appendix
Mission of the National Council on Disability
Acknowledgments
A variety of disability
community leaders, disaster preparedness professionals, emergency
managers, government employees, university professors, executive
directors, and staff and board members of nonprofit organizations
made valuable contributions of time and expertise to this report.
We are unable to acknowledge them all individually but wish to
thank them deeply for sharing their time and expertise.
The National Council on Disability thanks June Isaacson Kailes
and Brandi Buchanan for conducting the research for this report.
Executive Summary
Purpose of the Report
All too often in emergency situations the legitimate
concerns of people with disabilities are overlooked or swept
aside. In areas ranging from the accessibility of emergency information
to the evacuation plans for high-rise buildings, great urgency
surrounds the need for responding to these people’s concerns
in all planning, preparedness, response, recovery, and mitigation
activities. The man-made homeland security terrorist event of
September 11, 2001, as well as the recent energy blackouts in
the U.S. Northeast and Midwest and, more recently, the natural
disaster hurricane events in Florida and the Asian tsunami of
December 26, 2004, underscore the need to pay attention to the
concerns raised in this report.
The decisions the Federal Government makes, the priority it accords
to civil rights, and the methods it adopts to ensure uniformity
in the ways agencies handle their disability-related responsibilities
are likely to be established in the early days of an emergency
situation and be difficult to change if not set on the right course
at the outset. By way of this report, the National Council on Disability
(NCD) offers advice to help the Federal Government establish policies
and practices in these areas. The report also gives examples of
community efforts to take account of the needs of people with disabilities,
but by no means does it provide a comprehensive treatment of the
emergency preparedness, disaster relief, or homeland security program
efforts by state and local governments.
This report provides an overview of 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 homeland security programs. This infrastructure incorporates
access to technology, physical plants, programs, and communications.
It also includes procurement and emergency programs and services.
Scope of the Report
This report describes the disaster experiences
of people with disabilities. It also details the contributions
and efforts of community-based organizations (CBOs). And it examines
the nascent work of the Directorate of Emergency Preparedness
and Response (EP&R), which includes the Federal Emergency Management Agency
(FEMA), Department of Homeland Security’s (DHS’s) Office
for Civil Rights and Civil Liberties (CRCL), and FEMA’s federal,
state, local, and private sector partners. It also touches on the
ongoing work of the Federal Communications Commission (FCC) in
specific areas that relate to issues of homeland security and emergency
preparation. While other federal agencies play important roles
in this effort, DHS and FCC efforts represent some of the most
critical operations on behalf of Americans with disabilities. Given
the nature of most disasters, general and disability-specific programs
and services span many different governmental and nongovernmental
organizations.
The report examines the following broad areas:
- Disaster experiences of people
with disabilities and activity limitations and how their access
to disaster services could be improved.
- The experience of CBOs in disasters
and how partnerships with those organizations can help.
- How an effective disability-related
homeland security and emergency preparedness infrastructure could
be developed.
The report’s recommendations urge the
Federal Government to influence its state and local government
partners, as well as community-based partners, to assume major
roles in implementing key recommendations.
Who Are People with Disabilities?
Individuals with disabilities make up a sizable portion of the
general population of the United States. According to the U.S.
Census of 2000, they represent 19.3 percent of the 257.2 million
people ages 5 and older in the civilian noninstitutionalized population,
or nearly one person in five.
In disaster management activities it is important to think about
disability broadly. Traditional narrow definitions of disability
are not appropriate. The term disability does not apply just to
people whose disabilities are noticeable, such as wheelchair users
and people who are blind or deaf. The term also applies to people
with heart disease, emotional or psychiatric conditions, arthritis,
significant allergies, asthma, multiple chemical sensitivities,
respiratory conditions, and some visual, hearing, and cognitive
disabilities.
Adopting a broad definition leaves no one behind, and the imperative
is clear that emergency managers address the broad spectrum of
disability and activity limitation issues. People with disabilities
should be able to use the same services as the other residents
of the community in which they live. Although they may need additional
services, the emergency management system must work to build provisions
for these services into its plans so that people with disabilities
are not excluded from services available to the rest of the community.
If planning does not embrace the value that everyone should survive,
they will not.
Major Findings
- Disaster management activities
appear to have many access mistakes in common. People with disabilities
frequently encounter barriers to physical plants, communications,
and programs in shelters and recovery centers and in other facilities
or devices used in connection with disaster operations such as
first aid stations, mass feeding areas, portable payphone stations,
portable toilets, and temporary housing.
- Many of these barriers are not
new. Information and lessons learned are not shared across agency
lines, and thus experience does not enlighten the development
of new practices. Many accessibility lessons learned during previous
disasters are not incorporated in subsequent planning, preparedness,
response, and recovery activities. This should not be perceived
as a post-9/11 problem. Segments of the disability community
have reported problems in helping to develop and benefiting from
emergency services over many decades.
- People with disabilities and
activity limitations are left out of preparedness and planning
activities. These activities include analyzing and documenting
the possibility of an emergency or disaster and the potential
consequences or impacts on life, property, and the environment.
- Disaster preparedness and emergency
response systems are typically designed for people without disabilities,
for whom escape or rescue involves walking, running, driving,
seeing, hearing, and quickly responding to instructions, alerts,
and evacuation announcements.
- Access to emergency public warnings,
as well as preparedness and mitigation information and materials,
does not adequately include people who cannot depend on sight
and hearing to receive their information.
- FEMA recently developed one new
course with disability-specific content. Information related
to the emergency needs of people with disabilities, however,
is not widely integrated into a number of general emergency management
courses.
- The strengths and skills of CBOs
serving people with disabilities are not well integrated into
the emergency service plans and strategies of local government.
Emergency managers need to strengthen their relationships with
these organizations by recruiting, encouraging, and providing
funding and incentives to CBOs so that they can participate and
assist in disaster preparedness and relief.
- The CRCL and EP&R/FEMA
do not get many formal complaints about discrimination related
to people with disabilities and activity limitations. This
fact is in dramatic contrast to the barriers reported by
people with disabilities.
- DHS has not initiated funding
terminations to enforce Section 504 of the 1973 Rehabilitation
Act against grantees that violate the law.
- Stronger outreach, targeted technical
assistance, and training initiatives focused on Americans with
Disabilities Act (ADA) and Section 504 compliance issues are
needed.
- Data on complaint
filings and compliance reviews initiated, specific
Section 504 issues, trends in complaint and compliance
reviews, and outcomes and enforcement actions is not
available on DHS’s Web site.
- There is little
evidence of DHS’s
grants program encouraging potential grantees to integrate and
address disability and access issues.
- Current DHS criteria for proposal
selection lack disability-specific indicators for evaluating
proposals.
Key Recommendations
- DHS should establish a Disability
Access Advisory Group, in addition to the Interagency Coordinating
Council on Emergency Preparedness, made up of qualified people
with disabilities and others with disability-specific disaster
experience who meet regularly with senior officials to discuss
issues and challenges.
- The EP&R should integrate
information on people with disabilities and activity limitations
into general preparedness materials. It also should inform readers
and information users on how to get access to more customized
materials.
- The CRCL should regularly issue
guidance for state and local emergency planning departments to
reinforce their legal obligation to comply with ADA and Section
504 and 508 of the Rehabilitation Act in planning for, operating,
and managing programs and services such as Citizen Corps, shelters,
and other disaster services.
- The CRCL should proactively conduct
compliance reviews to identify weaknesses and problems in complying
with ADA and Sections 504 and 508 of the Rehabilitation Act.
- The FCC should develop stronger
enforcement mechanisms to ensure that video programming distributors,
including broadcasters, cable operators, and satellite television
services, comply with their obligation to make emergency information
accessible to people with hearing and vision disabilities, that
it acts immediately on violations, and that it is proactive on
Section 255 hearing aid compatibility.
- DHS should develop and offer
technical assistance and guidance materials for grantees about
their ADA and Section 504 legal obligations and compliance strategies.
- DHS should conduct proactive
reviews of recipients’ compliance
or noncompliance with Section 504 and ADA.
- The CRCL and EP&R/FEMA
should develop information systems that comprehensively
collect, aggregate, and summarize detailed information about
complaints or compliance reviews and their outcomes. This
information should be made available to the public.
- DHS should collect and analyze
Section 504 and ADA program data (complaints or compliance reviews
and their outcomes) for progress made, deficiencies, best practices,
and areas in which DHS could provide coordination or technical
assistance.
- To ensure the widest possible
usage, Portable Document Format (PDF) documents posted on all
DHS Web sites should also be posted in an alternative accessible
format.
- DHS should fund disability-specific
initiatives.
- DHS should integrate disability-specific
indicators into its proposal selection criteria.
NCD believes this report will contribute to
America’s commitment
to building a solid and resilient infrastructure that incorporates
access to emergency programs and services and includes physical,
program, communication, and technological access for people with
disabilities. NCD acknowledges the good work that federal agencies
have undertaken and stands ready to assist in continuing this work.
Part I. Introduction
“On July 22, 2004, I signed an Executive
Order that makes government agencies responsible for properly
taking into account agency employees and customers with disabilities
in emergency preparedness planning and coordination with other
government entities. To help coordinate this effort, the Executive
Order establishes the Interagency Coordinating Council on Emergency
Preparedness and Individuals with Disabilities.”
President George W. Bush
Purpose of the Report
All too often in emergency situations the legitimate
concerns of people with disabilities are overlooked or swept
aside. In areas ranging from the accessibility of emergency information
to the evacuation plans for high-rise buildings, great urgency
surrounds the need for responding to these people’s concerns
in all planning, preparedness, response, recovery, and mitigation
activities.
This report describes the need for the Federal Government, in
partnership with state and local governments and communities, to
build an infrastructure that will enable federal agencies to include
the diverse populations of people with disabilities in programs
and services involving homeland security, emergency preparedness,
and disaster relief. This infrastructure would incorporate access
to technology, physical plants, programs, and communications. It
also would include procurement practices and emergency programs
and services. This report discusses the status of selected federal
agency efforts in the development of such an infrastructure.
Through this report, National Council on Disability (NCD) offers
information that should help the Federal Government establish policies
and practices in these areas. The report also gives examples of
community efforts to take account of the needs of people with disabilities,
but by no means is the report intended to serve as a comprehensive
treatment of the emergency preparedness, disaster relief, or homeland
security program efforts by state and local governments.
Scope of the Report
This report primarily focuses on the seminal
work of the Directorate of Emergency Preparedness and Response
(EP&R), which includes
the Federal Emergency Management Agency (FEMA), the Office for
Civil Rights and Civil Liberties (CRCL) in the Department of Homeland
Security (DHS), and FEMA’s federal, state, local, and private
sector partners. It also touches on the work of the Federal Communications
Commission (FCC). It examines the disaster experiences of people
with disabilities. Finally, it looks at the role that community-based
organizations (CBOs) exercise in the areas of homeland security
and emergency preparedness on behalf of people with disabilities.
Now is the best time to integrate disability
issues effectively and reinforce and strengthen the nation’s commitment to homeland
security and emergency preparedness, while the implementing agencies
are still in their formative stages. The newly created DHS is a
massive organization of government agencies that is still in its
early stages of development. DHS is focusing on developing an efficient
and integrated operation (Walker 2004). The department’s
unparalleled size, scope, and complexity sometimes make it difficult
to decipher specific budgets, action plans, priorities, and partnerships
or, more important, to determine the most appropriate and objective
entry points.
Research Methods
Research for this report spanned the 16-month period from September
2003 to December 2004. The research methods included identifying
and obtaining source materials through extensive document and Internet
searches, literature reviews, and analysis of items recommended
by interviewees. Documents and materials reviewed came from federal
and state publications, journals, news reports, and public and
private Web sites, Webcasts and Webcast transcripts, reports, meeting
minutes and correspondence, public and private disaster and evacuation
plans, and disaster-specific conference content and materials.
In addition, in-depth structured interviews
were conducted with individuals, inside and outside of government,
who had relevant knowledge and background as well as extensive
and diverse experience in disability and emergency management.
Key interviewees included people in the disability communities,
in emergency services, and in local, state, and federal agencies.
Interviews covered these people’s occupational background
and experience; involvement with public or private agencies;
knowledge of resources used, training procedures, guides, and
courses, and organizations that have incorporated good disability-specific
practices; and referrals to additional people and materials with
relevant information.
Most interviews were conducted by phone. Notes were taken and
interviews were often taped for reference purposes. When all of
the interviews were completed, responses were grouped by topic
and analyzed for qualitative and quantitative information.
Who Are People with Disabilities?
Individuals with disabilities make up a sizable portion of the
general population of the United States. According to the U.S.
Census of 2000, they represent 19.3 percent of the 257.2 million
people ages 5 and older in the civilian noninstitutionalized population,
or nearly one person in five.
In this report, the term people with disabilities
includes people who are “vulnerable” or “at risk” and
cannot always comfortably or safely use some of the standard
resources offered in disaster preparedness, relief, recovery
and mitigation. They may include people who have a variety of
visual, hearing, mobility, cognitive, emotional, and mental limitations,
as well as older people, people who use life-support systems,
people who use service animals, and people who are medically
or chemically dependent.
Adopting a broad definition helps to ensure that
no one is left behind, and the imperative is clear that everyone
address the broad spectrum of disability and activity limitation
issues (Reis, Breslin, Iezzoni, and Kirschner 2003). If planning
does not embrace the value that everyone should survive, they will
not.
Disaster Experiences of People with Disabilities
There is a wealth of disaster related anecdotal
accounts from the disability community in the popular press,
the disability press and in meeting minutes, unpublished reports
and correspondence. There is, however, scarce research on experiences
of people with disabilities and activity limitations in disaster
activities that include planning, mitigation, preparedness, response,
and recovery (Pollander and Rund 1989, White 2003, White et al.
2004). One study, “Nobody
Left Behind: Investigating Disaster Preparedness and Response for
People with Disabilities,” was conducted at the Research
and Training Center on Independent Living, Kansas University (White
et al. 2004).
The same access mistakes appear to be made repeatedly
in disaster management activities. Lessons learned after a disaster
about reducing access barriers following disasters are not integrated
into subsequent practice. Such barriers include access to physical
plants, communications, and programs in recovery centers; other
structures and buildings used in connection with disaster operations
such as first aid stations, mass feeding areas, portable payphone
stations, portable toilets, temporary housing; and shelters, which
may present barriers to identification, access, management, training,
and services (California Department of Rehabilitation 1997, California
State Independent Living Council 2004, Center for Independence
of the Disabled 2004, Kailes 2000a, U.S. Department of Justice
2004, White et al. 2004).
The following is a sample of the types of barriers experienced
by people with disabilities that are documented by empirical research:
- People with disabilities have little input into
counties’ disaster planning (White et al. 2004).
- Only 39 percent of people surveyed
had an emergency plan in place for evacuating their home in the
event of an emergency (National Organization on Disability [NOD]
2002b).
- Only 39.9 percent of Texas residents
with disabilities in cities surveyed were involved in disaster
planning and preparedness activities. However, cities surveyed
reported that 77 percent of their emergency shelters were physically
accessible. After security perimeters were expanded at government
buildings and airports following 9/11, only 45.9 percent reevaluated
accessible parking and paths of travel to ensure compliance with
ADA (Pound 2002).
- Disaster preparedness and emergency
response systems are typically designed for people without disabilities,
for whom escape or rescue involves walking, running, driving,
seeing, hearing, and quickly responding to directions (White
et al. 2004).
- People with disabilities often
do not have as much access to earthquake preparedness materials
as people without disabilities. Sometimes disaster advice for
the general population is not equally applicable to people with
disabilities (Rahimi 1991).
- The lack of captioning on major
broadcast systems, as well as on Internet news sites, created
anxiety as many people could see pictures of the Twin Towers
collapsing and the fire at the Pentagon without knowing what
was happening (Heppner, Stout, and Brick 2004).
- The lack of captioning kept many
people in California from understanding the danger they were
in during the California wildfires of 2003, as the visual images
often did not include printed names of specific areas and neighborhoods.
This affected their ability to evacuate the area safely or in
a timely manner. People with hearing disabilities did not hear
the evacuation announcements being broadcast from patrol cars
(California State Independent Living Council 2004).
- Many people with disabilities
were inappropriately referred to medical facilities during the
Northridge, California, earthquake in 1994 when Red Cross personnel
misidentified their disabilities as acute medical conditions.
Some shelters refused people on the basis of these mislabeled
conditions (Bowencamp 1994, Lathrop 1994).
- Emergency disaster organizations
are not trained in what constitutes accessible facilities when
selecting sites for and operating shelters and disaster recovery
centers and disaster field offices (Kailes 1994, 2000a, Kailes
and Jones 1993).
- During the 1997 Minnesota Red
River flood, people with disabilities experienced many barriers,
including inaccessible disaster relief centers and temporary
housing such as travel trailers and mobile homes (Options Resource
Center for Independent Living 1997).
- Although local, state, regional,
and Federal Government agencies play a major role in disaster
planning and response, traditional government response agencies
are often ill-equipped to respond to the needs of vulnerable
populations. The traditional response and recovery systems are
often not able to satisfy many human needs successfully. The
usual approach to delivering emergency services does not always
provide the essential services for segments of the population
(City of San Leandro 2004).
- At higher levels of (homeland)
security, as perimeters expand, unique problems for people with
disabilities arise. These include loss of the use of accessible
parking unless it is redesignated, unavailability of close dropoff
points, and longer walks from available parking (Pound 2005).
These experiences and others are described in greater detail in
Part III of this report.
Part II. Improving Access to Disaster Services for People with Disabilities
Improving Access
Research gaps
There is a wealth of disaster related anecdotal
accounts from the disability community in the popular press,
the disability press and in meeting minutes, unpublished reports
and correspondence. There is, however, scarce research on experiences
of people with disabilities and activity limitations in disaster
activities that include planning, mitigation, preparedness, response,
and recovery (Pollander and Rund 1989, White 2003, White et al.
2004). One study, “Nobody
Left Behind: Investigating Disaster Preparedness and Response for
People with Disabilities,” was conducted at the Research
and Training Center on Independent Living, Kansas University (White
et al. 2004).
Planning
People with disabilities are often left out of emergency management
activities. Many of the barriers encountered are not new. Accessibility
lessons learned during previous disasters often do not appear to
be incorporated into subsequent planning, preparedness, response,
and recovery activities.
This should not be perceived as a post-9/11 problem. Segments
of the disability community have reported problems in participating
in and benefiting from emergency services over many decades. This
section reviews a representative sample of barriers and details
recommendations to help to begin to eliminate these barriers.
Disability-specific plan content
People with disabilities are often left out of planning activities
such as analyzing and documenting the possibility of an emergency
or disaster and the potential consequences or impacts on life,
property, and the environment. These activities include assessing
the hazards, risks, mitigation, preparedness, response, and recovery
needs. Planning includes development and preparation of emergency
plans and procedures and the identification of necessary personnel
and resources to provide an effective response.
People with disabilities should be able to use the same systems
as other residents of the community in which they live. Although
they may need additional services, the emergency management system
must work to build provisions for these services into its plans
so that people with disabilities are not excluded from services
available to the rest of the community (National Emergency Training
Center Emergency Management Institute 1993).
The California Specialized Training Institute conducted a survey
of more than 1,200 California agencies to determine what plans
community organizations have to address the disaster needs of people
with disabilities. The study found that few of the 168 respondents
believed that plans had been made in their communities. Other findings
included the following:
- Fewer than half had plans in
place to assist people with disabilities.
- One-third believed that their
communities had plans in place to transport institutionalized
people with disabilities.
- Seventy percent of those in public
safety agencies reported that their organizations did not have
plans for people with disabilities, or they believed that the
existing plans would not work in an actual disaster (California
Specialized Training Institute 1983, Challenge Magazine 1983).
Members of the emergency management community must learn to discuss
and think about a broad range of issues related to people with
disabilities, including not only the range of disabilities but
also how to integrate people with disabilities into the existing
emergency services (National Emergency Training Center Emergency
Management Institute 1993).
Many state, regional, and local plans do not specifically address
the transition needs to reestablish predisaster conditions that
are required for people with mobility disabilities (White et al.
2004).
Participation in stakeholder and planning groups
People with disabilities are often not included
in stakeholder and planning groups. Stories include roadblocks
encountered by some who proactively attempted to participate.
People with disabilities have received flip responses like “Don’t worry, you’ll
be taken care of; after plans are formulated we will include you” or “Meetings
take too long as it is without adding someone else” or “I’m
not the person you want to speak with” (Cohen 2004).
The “Nobody Left Behind” study’s preliminary
findings show that people with disabilities have little input into
counties’ disaster planning (White et al. 2004).
National Response Plan
The Homeland Security Act mandates the creation of a National
Response Plan (NRP) predicated on a new National Incident Management
System (NIMS). The NRP and the NIMS provide the structure that
weaves the capabilities and resources of all of the jurisdictions,
disciplines, and levels of government and the private sector into
a cohesive, unified, coordinated, and seamless national approach.
The NRP is intended to help develop a unified approach to domestic
incident management across the nation (Department of Homeland Security
[DHS] 2004b). The overall goal is to harmonize and integrate existing
federal domestic prevention, preparedness, response, and recovery
plans into a single all-hazards plan.
The NRP’s Emergency Support Function (ESF) Annexes (listed
in Part I––Emergency Support Functions) provide detailed
descriptions of the mission, policies, structure, and responsibilities
of federal agencies for coordinating resource and programmatic
support to a state or other federal agencies during incidents of
national significance. The Support Annexes provide functional descriptions
and specific administrative requirements for operational elements
common to most incidents that are not addressed in the body of
the NRP. Support Annexes cover the following topics:
- Donations Management
- Financial Management
- Insular Affairs
- International Coordination
- Logistics Management
These NRP annexes should incorporate disability-specific access
information in at least two ways. One is to integrate disability-specific
access issues into all appropriate annexes. The other is to establish
a disability-specific annex as a means of supporting disability
content in more depth.
Preparedness
People with disabilities are left out of preparedness activities.
Preparedness activities are needed when mitigation measures have
not prevented disasters or cannot prevent them. In the preparedness
phase, governments, organizations, and individuals develop plans
to save lives and minimize disaster damage (e.g., compiling state
resource inventories, conducting training exercises, installing
early warning systems, and preparing predetermined emergency response
forces). Preparedness measures also seek to enhance disaster response
operations (e.g., by stockpiling vital food and medical supplies,
through training exercises, and by mobilizing emergency response
personnel on standby) (Johnson 2000).
For example, at the time of Florida’s
Hurricane Andrew in 1991, people with disabilities did not have
emergency plans in place to cope for several days without power
or telephone service. Nobody checked on them and nobody knew
they needed help. Adequate records were not being kept, and individuals
spent days trying to locate loved ones (Queen 1993).
Survey results
Although it would seem that the events of September 11, 2001,
would have created widespread change and innovation related to
disaster preparedness for all individuals, including people with
disabilities, this has not been the case. A December 2003 Harris
poll found only 44 percent of people with disabilities knew whom
to contact to get information in times of disaster or emergency,
compared with 40 percent in a 2001 poll conducted soon after the
events of September 11 (NOD 2001b, 2004).
The National Organization on Disability (NOD),
which conducted both surveys, was disappointed to learn that
in 2002, only 39 percent of people surveyed had a plan for evacuating
their home in the event of an emergency, compared with the 38
percent who had a plan in the 2001 survey. People with disabilities
also noted higher rates of anxiety than were found in the general
population about future disasters and emergencies (NOD 2002b,
2004). Alan Reich, NOD president, says “The disability community has good reason
to be anxious. The 54 million American children, women, and men
who have disabilities are among the most vulnerable in disasters” (NOD
2004).
A 2002 poll by the Texas Governor’s Committee
on People with Disabilities found similar results. Only 30 percent
of cities surveyed have training and procedures to accommodate
service animals, and fewer than half said they had training and
procedures for providing and allowing use of medical equipment
such as wheelchairs, walkers, and canes. Only 21 percent said
they were prepared to provide specific diets, and 25 percent
said they could provide insulin or asthma medications. While
76 percent of cities surveyed said they had telecommunication
devices for the deaf (TDDs), 15 percent said they provide no
training for shelter staff to use them (Pound 2002).
Employers and people with disabilities have made some improvement
in workplace planning and emergency preparedness. The 2004 Harris
poll indicates that 68 percent of people surveyed have established
evacuation plans in the event of an emergency, up from 45 percent
in the 2001 poll (NOD 2001b, 2004).
Evacuation experiences
Disaster preparedness and emergency response
systems are typically designed for people without disabilities,
for whom escape or rescue involves walking, running, driving,
seeing, hearing, and quickly responding to directions (White
et al. 2004). “A common theme
emerging after 9/11 is there are virtually no empirical data on
the safe and efficient evacuation of persons with disabilities
in disaster planning,” White (2003) found. The media heightened
the public’s awareness of this problem from the reports of
many individuals with disabilities trapped in the World Trade Center
towers on 9/11. While one can hope that such acts of terrorism
are rare, other catastrophic events such as floods, tornadoes,
hurricanes, and fires are frequent occurrences across this nation
and can lead to tragic results (White 2003).
One man’s final image as he left the 80th floor (of the
World Trade Center on September 11, 2001) and made it to safety
was that of a room full of people using wheelchairs and walkers
waiting to be rescued by the firefighters who were coming up the
stairs. They all perished as the building collapsed shortly after….After
the [earlier] 1993 bombing, many tenants of the World Trade Center
and the building management for the complex were aware that evacuation
plans for people with disabilities were needed. Unfortunately,
the evacuation plan for people with disabilities was lethal to
them: it consisted simply of requiring them to go to predetermined
meeting sites within the building and wait for evacuation assistance
(Center for Independence of the Disabled 2004).
The media repeatedly reported stories about the two wheelchair
users who successfully escaped from the World Trade Center using
evacuation chairs on 9/11 and a story about one wheelchair user
who died (Byzek and Gilmer 2001). The public did not hear about
others whose activity limitations prevented them from successfully
evacuating. The public did hear reports from those who successfully
evacuated the towers and who told of passing people who could not
keep up (e.g., older people, people with respiratory conditions
and limited endurance, and other people with no apparent disability).
Their chances of surviving could have significantly improved if
evacuation plans had been in place that included them, and that
were regularly practiced by using both announced and unannounced
drills for reviewing procedures. It is essential that regular drills
be conducted, and that people with disabilities and activity limitations
not be excused from participating.
One wheelchair user who did escape from the World Trade Center
on 9/11 using an evacuation chair told the press that she forgot
that the evacuation chair was under her desk. Two secretaries remembered
and reminded her where it was (Byzek and Gilmer 2000). The fact
that this woman forgot about the device, and that another wheelchair
user who worked at the World Trade Center recalled only a single
demonstration of the device shortly after the 1993 bombing, are
clear indications that the need for preparedness had worn off soon
after the first attack. Whatever evacuation plan existed had not
been practiced regularly. When disaster struck, the plan fell apart.
Most of those who had been assigned to help with rescue devices
were frightened and fled downstairs.
Michael Hingson, a 9/11 survivor who is blind,
used his guide dog, his associates, and his previous experience
during drills to evacuate the building safely. He says, “I feel like I
was as prepared as possible. I knew the evacuation procedures,
I attended all the building fire drills, I knew the exit routes.
So when the attacks hit, I had a sense of preparedness, self-sufficiency,
and the confidence to take a leading position in evacuating myself
and others to safety” (Kailes 2002a).
After the 1993 World Trade Center bombing,
at the suggestion of the local emergency management office, The
Associated Blind (a local service provider for low- and no-vision
clients) worked with the New York City Fire Department to develop
a building evacuation plan and drill for the staff, most of whom
have limited or no vision. The Associated Blind wanted a plan
for its staff members covering the range of problems that could
occur during a disaster. On September 11, their efforts paid
off. The entire staff calmly and safely evacuated their building’s
9th floor, a success they attribute directly to the customized
advance planning and drills (Center for Independence of the Disabled
2004).
On 9/11, Ed Beyea, a wheelchair user, was working
on the 27th floor of One World Trade Center. He declined an offer
of assistance from a coworker because he knew his weight of 300
pounds required several people to move him properly. Abe Zelmanowitz,
a friend of Beyea’s, stayed by his side, waiting for help from fire
personnel, while Beyea’s personal assistant, Irma, traveled
down to the street to find help. She told a fireman where Beyea
and Zelmanowitz were and that Beyea would need oxygen. Zelmanowitz
talked to his mother by cell phone to notify her that he was all
right. She encouraged him to get out. Zelmanowitz and Beyea have
not been heard from since (Byzek and Gilmer 2001).
During the attack on the Pentagon, equipment previously installed
to help employees and visitors with low or no vision to evacuate
the facility in the event of an emergency made it possible for
dozens of sighted individuals to flee the smoke-filled corridors
as well (Center for Independence of the Disabled 2004).
Experiences with other disasters yielded similar reports.
- At the time of the earthquake in Northridge, California,
in 1994, a woman who used a wheelchair was living on the second
floor of a building whose elevator was shut down due to the power
outage. She was told by another resident, “We all have our
problems,” when she questioned how to evacuate their unsafe
apartment building (Hammitt 1994).
- In 2001, Paul Ray, a programmer,
was a contractor for Ford Motor Company in Dearborn Heights, Michigan.
His office had a fire drill. Ray, who had quadriplegia and worked on
the second floor, said it was the first fire drill in the 18 months
he had worked there. When the alarm went off, he went to the elevator
bank, where he said designated fire wardens seemed surprised to
see him. He said he had never been told about the building’s
evacuation plan. “I was a little surprised. I thought Ford
would have a little better control over the situation,” he
said. “I’m hoping that [now] they’re at least
a little more aware of the fact that I am there, working on their
second floor….I don’t know if it’s something
they just don’t think about it or everybody’s just
so stressed out with their other nonsense that they don’t
have time to deal with it. As a quadriplegic I do not go down stairs,
period. I don’t have the balance for it. It’s a little
disturbing” (Bondi 2001).
- In New York City, one individual
responded to a survey: “I ambulate with forearm crutches and my leg stamina
is limited. As a social service provider in New York City, I am
in tall buildings often and one in particular they had an evacuation
drill. There were no plans or equipment to assist me. They told
me to ignore the drill. I felt very vulnerable because I attend
regular work meetings in this building” (Research and Training
Center on Independent Living 2004).
- In response to another survey
in Los Angeles, an individual said: “I have juvenile rheumatoid arthritis and
use a wheelchair. We had a bomb threat at work, which was very
scary. Everyone evacuated, but I was still left on the third floor
by the stairwell for the firefighters to come get me. But no one
came. Finally, I just struggled, and I used pure fear to get myself
down the stairs and outside. It was scary just to realize that
there are not really any procedures in place to help someone like
me in an emergency” (Research and Training Center on Independent
Living 2004).
- In Oklahoma, a person reported, “We had a
fire at work and the evacuation plan didn’t work to get me
out. Even so, management refused to change the plan” (Research
and Training Center on Independent Living 2004).
Disability-specific materials
One study conducted following the 1989 Loma
Prieta Earthquake found that people with disabilities often did
not receive as much earthquake preparedness materials as people
without disabilities. Rahimi (1991) commented that sometimes
disaster advice for the general population is not equally applicable
to people with disabilities. “For
example, many wheelchair users cannot take cover under tables and
desks, advice commonly given regarding how to respond to an earthquake.”
Examples abound of information
that is vague, incomplete, impractical, and naïve, and of
language that is outdated and that perpetuates negative attitudes
and false stereotypes.
- According to FEMA’s Disaster Preparedness
for People with Disabilities (Federal Emergency Management Agency
[FEMA] 2003a), people who use wheelchairs as their primary modes
of transportation are instructed: “Show friends how to operate
your wheelchair so they can move you if necessary. Make sure your
friends know the size of your wheelchair in case it has to be transported.” FEMA
comments, “This information is vague. What about the option
of having a light weight manual chair available for emergencies?
What if the chair is a heavy motorized chair; and the individual
is unable to transfer without the assistance of several strong
people? What if your trained friends are not with you during a
disaster?”
- One volume of the Fire Risk Series
published by FEMA and the U.S. Fire Administration (1999) instructs: “Have
a Fire Extinguisher and Learn How To Use It. If you are confined
to a wheelchair, consider mounting (or having someone mount) a
small ‘personal use’ fire extinguisher in an accessible
place on your wheelchair and become familiar with its use. Then,
if you cannot ‘stop, drop, and roll’ during a fire,
you should ‘pull, aim, squeeze, and sweep.’”
- The National Emergency Training
Center Emergency Management Institute (1993) reported that “Many
people with disabilities and activity limitations do not receive
information through social services agencies because they have no
need to seek support from these organizations. Information must
be easily available, through the same means as other material is
distributed to them with specific and useful advice in accessible
formats.”
- Emergency preparedness information
often is not available in accessible formats (e.g., Braille,
large print, disks, audio cassettes, and accessible media, including
Web sites or captioned and audio-described films and videos).
Access to emergency public warnings
Many community emergency public warning systems remain inaccessible
to a segment of the disability community with hearing or vision
disabilities. The following are some examples.
- The September 11 television scenes
were disturbing, and without efficient and correct captioning,
people who are deaf experienced heightened anxiety and confusion
as they struggled to learn about the events (Heppner et al. 2004,
Independent Living Research Utilization [ILRU] 2002b). The lack
of captioning on major broadcast systems, as well as on Internet
news sites, created anxiety as many people could see pictures
of the towers collapsing and the fire at the Pentagon without
knowing what was happening. Scrolling messages often blocked
captions, making it difficult to read captioned information.
The increased rate of captioning errors because of increased
anxiety and long working hours for the captioners made it necessary
for many people who are deaf or hard of hearing to decode and
unscramble emergency information. The inability to use TTYs (teletypewriters),
amplified phones, and other equipment dependent on electricity
was a problem for many deaf individuals. They could not hear
auditory announcements on airplanes and did not know why their
planes landed early and in the wrong destinations. A deaf individual
working in the Pentagon smelled the smoke from the fire before
learning that a plane had crashed into the building, whereas
other individuals knew long before they smelled smoke.
- A deaf individual had no knowledge
of what had happened at the Twin Towers or the Pentagon. A coworker
hand-signed the word “war” and told him to get out. When he was outside
the building, he didn’t see any of his coworkers, so he went
back into the office. One coworker who was still there spelled
out in sign alphabet the word “war” and told him to
go home. He had no detailed information on what was going on (U.S.
Department of Labor’s Office of Disability Employment Policy
2004).
- Emergency e-mail and wireless
network alerts are viewed as helpful by the deaf and hard-of-hearing
communities, but information can be spotty. For example, before
a hurricane in the Washington, D.C., area in 2003, information about
the storm’s
approach was sent frequently to keep people updated. Once the hurricane
hit, there was no information about such things as where emergency
shelters were and no warnings about water not being safe to drink,
and so on. In addition, Heppner (2004) wrote, some information
is truncated when sent to various devices.
- During the California wildfires
of 2003, the lack of captioning kept many people with hearing
impairments from understanding the danger they were in, as the
visual images often did not include printed names of specific
areas and neighborhoods. Also, people did not hear the evacuation
announcements from patrol cars. As a result, the California State
Independent Living Council (2004) reported, these people were
not able to evacuate the area safely and quickly.
- Queen (1993) wrote that during
Hurricane Andrew in Florida in 1991, people with hearing loss
were unable to access the emergency broadcast system.
- On September 11, 2001, flashing
news updates on TV broadcasts often were not accompanied by verbal
reports critical for people with visual disabilities (Heppner
et al. 2004).
- A national reverse 911 phone-based
public warning system that can quickly target a precise geographic
area and saturate it with thousands of calls per hour and that
also has capability for TTY calls was not used (Sigma Communications
2004).
Mitigation
Mitigation includes ongoing efforts that can prevent a hazard
or lessen the impact of disasters on people and property (National
Council on Disability [NCD] 2004, 2005). Mitigation also includes
long-term activities designed to reduce the effects of unavoidable
disaster (e.g., land use management, establishing comprehensive
emergency management programs such as vegetation clearance in high
fire danger areas, or building restrictions in potential flood
zones).
People with disabilities and activity limitations sometimes lack
the resources or the support systems to undertake some of these
mitigation activities, such as the following:
- Installing hurricane shutters
- Strengthening roofs
- Installing fire-resistant shingles
- Installing shatter-resistant
window film
- Anchoring outdoor items that
can become projectiles in hurricanes and high winds
- Implementing vegetation
management––for
example, removing fire-prone dry plant material from gutters and
around residences and other buildings, or trimming tree limbs that
overhang roofs to avoid roof damage during hurricanes, tornadoes,
or high straight-line winds
- Clearing streams
- Bolting bookshelves to walls
- Installing backflow
valves––special
valves that prevent toilet overflows when the household sewer is
infiltrated with floodwater
- Building safe rooms––specially
designed rooms built to withstand high winds generally associated
with tornadoes
- Placing a fuse box higher on
a wall in a flood-prone area (FEMA undated-a)
During the 2003 California wildfires, people with activity limitations
had difficulty with fire prevention and maintenance activities,
such as cutting back trees and underbrush to create a defensible
fire-safe perimeter (California State Independent Living Council
2004).
Response and Recovery
Response activities following an emergency or disaster are designed
to provide emergency assistance for victims (e.g., search and rescue,
emergency shelter, medical care, and mass feeding). They also seek
to stabilize the situation and reduce the probability of secondary
damage (e.g., shutting off contaminated water supply sources, and
securing and patrolling areas prone to looting) and to speed recovery
operations (e.g., damage assessment).
Recovery activities are needed to return all systems to normal
or better. Short-term recovery activities return vital life support
systems to minimum operating standards (e.g., cleanup, temporary
housing, and access to food and water). Long-term recovery activities
may continue for a number of years after a disaster. Their purpose
is to return life to normal or improved levels (e.g., redevelopment
loans, legal assistance, and community planning).
After an earthquake at Glendora, California,
a resident told the Research and Training Center on Independent
Living (2004): “Disabled
persons have the same freedom of choice as any other American.
The paternalistic attitude was frightening beyond belief that I
experienced [while trying to access after-disaster services and
information].”
In the aftermath of the 2003 hurricanes in Florida, individuals
who are deaf and hard of hearing reported that they did not receive
information about the availability of dry ice during the power
outages and that in some locations water was unsafe to drink (Heppner
2005).
Physical, Communication, and Program Access
Common access mistakes appear to be made repeatedly in disaster
management activities regarding access to physical plants or buildings,
communications, and programs. Lessons learned after each disaster
about access do not get integrated into subsequent practice (California
Department of Rehabilitation 1997, California State Independent
Living Council 2004, Center for Independence of the Disabled 2004,
Kailes 2000a, U.S. Department of Justice 2004, White et al. 2004).
The Center for Independence of the Disabled
(2004) reported a number of lessons learned during and immediately
after 9/11 about preparation and accommodations for people with
disabilities. The most prominent and disturbing conclusion was
that––even
though many of these lessons had been learned before 9/11––systemic
preparation conceived of or conducted by mainstream emergency responders
and relief agencies did not consistently take into account the
specific needs of people with disabilities. Or when these issues
were taken into account, the results often were not shared across
agency and jurisdictional lines.
Physical access
Physical access involves the removal of architectural barriers
such as curbs and steps; narrow exterior and interior doorways
and aisles; narrow rest room doorways and stalls; and inaccessible
parking spaces, food service, drinking fountains, and telephones.
Physical access allows individuals to get to, into, and around
facilities.
These are a few of many examples of continuing physical access
problems needing attention:
- During the 1994 earthquake at
Northridge, California, many people with disabilities were inappropriately
referred to medical facilities when Red Cross personnel misidentified
their disabilities as acute medical conditions. Some shelters
refused people because of these mislabeled conditions (Bowencamp
1994, Lathrop 1994).
- Emergency disaster organizations
are not trained to understand what constitutes accessible facilities
when they are selecting sites for and operating shelters, disaster
recovery centers, and disaster field offices (Kailes 1994, 2000a,
Kailes and Jones 1993). These facilities are not surveyed using
a comprehensive accessibility checklist. Shelter managers and
volunteers are not trained in how to clearly designate a facility
as fully or partially accessible or how to maintain, and how
important it is to maintain, accessible routes and walkways for
safe mobility, prevention of falls, and so on.
- During the 9/11 crisis and the
2003 California wildfires, emergency housing and shelters were
not adequately equipped for people who needed accessible lodging
(California State Independent Living Council 2004). Temporary
housing (tents, travel trailers, mobile homes, and accessible
hotel rooms within the community or in nearby communities) did
not include identification of accessible units.
- One of the many recorded complaints
was that during a hurricane in Alexandria, Virginia, “The disaster volunteer
was not trained on accessibility issues. He said that the shelters
should be accessible since the law requires it. He didn’t
understand the impact of me getting there only to discover that
they were in violation of the law” (Research and Training
Center on Independent Living 2004). Another complaint, following
the earthquake in Los Angeles, was that “We had to move out
of our house for several weeks to have it repaired. All the places
that people referred us to were not accessible to me in my scooter” (Research
and Training Center on Independent Living 2004). A third complaint,
after the earthquake at Northridge, California, was that “At
the temporary shelter I couldn’t get to the bathrooms, as
you had to walk up stairs” (Research and Training Center
on Independent Living 2004).
Communication access
Communication access enables effective communication with people
who are deaf or blind or who have speech, vision, or hearing limitations.
It includes the use of written materials available in alternative
formats (e.g., Braille, large print, disks, audio cassettes), and
hearing-assistive technologies such as amplified phones, TTYs,
and listening systems. Communication access also involves the use
of auxiliary aids and services, when needed, such as sign language
interpreters, CART (communication access real-time translation)
readers, people to assist with completing paperwork, and people
to take notes. In addition, it includes accessible media such as
Web sites, captioned and audio-described films and videos, videoconferences,
and public service announcements.
Shelter managers and volunteers are not trained
in communication access issues. Hammit (1994) reported after
the 1994 earthquake in Northridge, California, that a deaf person
had been turned away from a shelter because no one understood
sign language. After the same earthquake, the text of oral announcements
was not posted in a public area so that people who are deaf,
hard of hearing, or out of hearing range could go to a specified
area to get or read the content of announcements (California
State Independent Living Council 2004, Kailes 2000a). The Independent
Living Center of Southern California (1994) reported that a “deaf man applying
for admittance to a shelter was given a form to complete which
asked about ‘Medical Problems.’” When asked to
list all past and present conditions, he included having tested
positive for TB more than five years ago. As a result, shelter
volunteers told him he could not be admitted. A woman who was able
to sign saw the man frantically signing to the Red Cross worker.
She went over, signed to the man, and found he was concerned he
might pick up a disease in the shelter. She tried to communicate
this verbally to the Red Cross worker. The worker did not understand
what she was telling him. As a result, neither of them was allowed
into the shelter. The worker assumed they were together because
they were both deaf.
During the 2003 California wildfires, telephones on temporary
telephone access trailers placed at shelters were not within reach
of some people with disabilities and they were not equipped with
TTYs (California State Independent Living Council 2004).
Program access
Program access refers to overall accessibility of programs to
people with disabilities. It involves individuals being able to
participate fully in programs and services provided by organizations.
Publicly funded organizations are prohibited from denying people
with disabilities equal access to participate in programs and activities
because facilities are not accessible. Program access means that
publicly funded organizations operate each program so that when
viewed in its entirety, the program is readily accessible to and
usable by people with disabilities. Program access can be achieved
by creating physical access through both structural methods and
nonstructural methods.
The following lists give a few examples of continuing program
access problems that need attention.
Shelters. It is common that alternatives to inaccessible shelters
are not thought through and are not clearly communicated to people.
If a shelter cannot accommodate people with a specific set of needs,
prompt transfer to a better equipped facility should be offered.
- For example, if one shelter is
well equipped to assist people who are deaf and another shelter
is equipped to assist people with mobility disabilities, an agreement
for cross-referring should be established quickly.
- Recognition of a family’s
need to stay together has not been given proper attention. The
person with a disability is not the only one who will need to
be transported to a more accessible shelter. Accessible transportation
(equipped with a lift or ramp) to another shelter should be provided
for the individual with a disability and his or her family (Kailes
2000b).
- When there is only one shelter,
it is especially important to have a plan in advance for acquiring
additional shelter services when they are needed. In 1993, for
example, Red Cross volunteers were allowed to drive people to
get a shower and their mail. But they were not allowed to transport
people with disabilities (Independent Living Center of Southern
California 1994).
Food and Supplies. FEMA and the County Department
of Public Social Services arranged for food stamps to be provided
on an emergency basis after the 1994 Northridge, California,
earthquake. But people with disabilities and activity limitations
were unable to wait in long lines, from three to eight hours,
to complete applications, and distribution centers were not accessible
to many people with disabilities. Many did not have friends or
family they could send as their designees (Westside Center for
Independent Living 1994). The state agreed to allow SSI (Supplemental
Security Income) recipients to get the emergency food stamps
by mail. They were mailed an application for the stamps, and
once the form was returned, the state mailed an approval letter
with the location where the food stamps could be picked up. This
had been the problem in the first place—people
were unable to get to the distribution site (Independent Living
Center of Southern California 1994).
After San Francicso’s Loma Prieta earthquake
in 1989, a critical need was water. But for people with disabilities
it was difficult to impossible to wait up to seven hours in lines
(Wangeman and Nandi 1996). First aid stations lacked the capacity
to keep certain life-sustaining medications. Stocked supplies
for shelters, temporary housing, and assistance did not include
access signs (wheelchair logo) to indicate the location of accessible
routes and accessible lines for food, water, and disaster relief
applications; auxiliary air and heating units; or portable emergency
call units for people at risk of falling or other isolation-related
risks.
During the 1997 Minnesota Red River flood, people with disabilities
experienced many barriers, including inaccessible disaster relief
centers and temporary housing (i.e., travel trailers and mobile
homes) (Options Resource Center for Independent Living 1997).
A problem for many people with disabilities after the 1994 Northridge
earthquake was finding permanent housing. FEMA provided vouchers
that were valid for 18 months. At the end of this time people were
in jeopardy of losing their ability to remain in their community.
Most were long-term residents who had lost affordable housing and
faced pressure to relocate to more affordable, but higher crime
neighborhoods (Westside Center for Independent Living 1994).
Mental Health. In New York City after 9/11,
trauma counselors did not always fully appreciate the experience
of trying to remain independent when routine services and supports
are no longer available. Relief
volunteers, many of them from other states, were unfamiliar with
Manhattan and unable to offer reliable assistance (ILRU 2002a).
Following 9/11, a deaf person in New York City
who was unable to get accessible trauma counseling was asked
to assist in counseling another deaf person seeking the same
services because of that person’s
ability to both speak intelligibly and sign (Heppner 2005).
Transportation. Following the California wildfires in 2003, public
transportation was limited because many of the areas affected by
the fires are rural and people did not have emergency transportation
plans in place (California State Independent Living Council 2004).
After 9/11, relief workers often had difficulty understanding
why the public transportation shutdown prevented people from getting
access to emergency assistance (ILRU 2002a).
Even if transportation systems are not damaged, emergency response
personnel may restrict travel for security or other reasons. Personal
vehicles were not allowed into Manhattan for a period of time after
the 9/11 attacks. Without public or accessible transit, people
who had medical appointments or needed to travel to apply for relief
benefits or on other important business had no way to get into
town (ILRU 2002a).
After Florida’s Hurricane Andrew in 1991,
transportation plans for accessible emergency evacuation did
not exist (Queen 1993).
Training
FEMA’s National Emergency Training Center in Emmitsburg,
Maryland, is home of the Emergency Management Institute and the
National Fire Academy. There, emergency managers, firefighters,
and elected officials take classes in many areas of emergency management,
including emergency planning, exercise design and evaluation disaster
management, hazardous materials response, and fire service management.
FEMA courses are also given by many states. An independent study
program is also available to private citizens. Special seminars
and workshops are offered via satellite as part of FEMA’s
Emergency Education Network, called EENET. From “tabletop” discussions
of a specific problem to full-scale exercises (e.g., dress rehearsals
for the real thing) that involve a detailed disaster scenario that
unfolds over several days, FEMA coordinates events that bring together
every agency and volunteer organization that would respond in a
real disaster.
Disaster workers training
From the outset, lack of appropriate access and accommodations
for people with disabilities seeking response and recovery services
in the aftermath of the World Trade Center attack was evident,
reflecting, among other factors, methods of program administration
that disregarded needs specific to those with physical, medical,
cognitive, or psychiatric conditions. Through its work with World
Trade Center consumers, CIDNY (the Center for Independence of the
Disabled, New York) identified a series of administrative procedures
that resulted in inappropriate service denials with a wide range
of public and private agencies (Center for Independence of the
Disabled 2004).
After the 9/11 attacks displaced a woman with a mobility disability,
she called FEMA to register and assess damage to her apartment.
FEMA regulations required that she meet the FEMA representative
at her apartment to assess damage. This was physically impossible
for her, given the debris and other barriers situated around Ground
Zero. When she was unable to comply, FEMA discontinued her application.
The independent living center successfully advocated with FEMA
to establish a waiver of this requirement for people with mobility
disabilities (Center for Independence of the Disabled 2004).
Shelter managers and volunteers are not trained
to work with people with disabilities. After 9/11, the Center
for Independence of the Disabled (2004) reported, people at the
Red Cross were polite and interested, but everything had to be
brought to their attention. Their volunteers were from all over
the country. They did not understand transportation issues for
people with disabilities in New York City. Volunteers would ask, “can’t they get a neighbor
to drive them?” and would have be told that “the neighbors
don’t have cars.”
After the earthquake at Northridge, California, in 1994, individuals
with cerebral palsy and multiple sclerosis were denied help at
a shelter because they were perceived as being under the influence
of drugs or alcohol (Hammitt 1994, Independent Living Center of
Southern California 1994).
After the Northridge earthquake, the Los Angeles
independent living center servicing the San Fernando Valley reported
the Red Cross to be ignorant of disability issues and unwilling
to work at the national level with disability organizations.
Complaints received by the center included inaccessible shelters,
unreachable supply distribution points, and poorly trained volunteers––in
a number of cases, people with disabilities were turned away from
shelters and told to go to hospitals by staff members who assumed
that they were sick or injured (Lathrop 1994).
A blind individual using a service animal after that 1994 earthquake
was denied access to a shelter because he would not agree to place
his guide dog in a kennel for the length of his stay at the shelter
(Westside Center for Independent Living 1994).
Shelter managers and volunteers were not trained in how to identify
at-risk individuals to help prevent unnecessary deterioration of
their emotional and physical health, or in the importance of designating
an area for people who use service animals (e.g., guide dogs) and
for pets of other people, especially older single people, for whom
their relationships with their pets may be life sustaining.
First responders
In April 2004, the New York City Transit Authority
conducted training drills to educate and instruct transit workers
about what to do in the event of an emergency. During one such
drill in the New York City subway system, participants were told
that “Our
main concern is to evacuate as many people as possible, as quickly
and safely as possible.” The instructor then proceeded to
tell the students to move the handicapped person off to the side
and provide assurances that “help is on the way.” The
rider would probably have to wait for firefighters to arrive (Luo
2004). Such assistance may never arrive. Some people in the disability
community feel this is equivalent to leaving the individual in
the oven. Some people with disabilities were left behind in evacuated
buildings because rescue agencies did not fully understand how
someone could not be aware of the evacuation effort (ILRU
2002a).
There are few training opportunities for first responders related
to the specific needs of people with disabilities and activity
limitations. First responders, including police officers and law
enforcement officials, rely on street experience and react to situations
as they arise (Homeland Defense TV 2004).
Lack of training and experience dealing with people with disabilities
is a problem and a safety issue for people with disabilities and
for responders. When triage methods are used, people with disabilities
are often told to wait in a specific location for assistance. This
practice puts people with disabilities and activity limitations
and responders at risk. These practices need to be rethought and
updated.
If first responders receive proper training and have plans to
assist people with disabilities, reported Homeland Defense TV (2004),
they will eliminate the risk of having to go back or use triage
planning for people with disabilities, and they are likely to become
more competent in serving all victims of disaster.
Information transfer
After the 1994 Northridge, California, earthquake, a significant
number of disaster response problems affecting people with disabilities
were reported. Most of these problems were the same problems reported
five years earlier after the 1989 Loma Prieta earthquake (California
Department of Rehabilitation 1997). These issues included accessibility
of shelters, potentially discriminatory policies toward people
with disabilities, lack of knowledge and coordination of existing
disability-related resources that could have ameliorated some of
the problems, and lack of support services needed by people with
disabilities.
Common access mistakes appear to be made repeatedly in disaster
management activities. Lessons learned after each disaster about
physical, communication, and program access for recovery centers,
and other structures and buildings used in connection with disaster
operations (e.g., first aid stations, mass feeding areas, portable
payphone stations, portable toilets, and temporary housing, as
well as shelter identification, access, management, training, and
services) do not appear to get integrated into subsequent practice
(California Department of Rehabilitation 1997, California State
Independent Living Council 2004, Center for Independence of the
Disabled 2004, Kailes 2000b, U.S. Department of Justice 2004, White
et al. 2004).
One major issue was the need for accommodations at the disaster
assistance centers, where people applied for assistance from dozens
of government and private relief agencies. Multiple visits were
often required. Many people with disabilities were unable to apply
for benefits because they could not stand in line for the long
periods of time required. At the start, there were no chairs at
centers, and people were not allowed to send representatives to
file applications on their behalf, even if they were homebound
before the attack.
As the anecdotal evidence illustrates, there has been a significant
amount of relearning and reinventing of good disability-specific
practices during response to new disasters. Deploying well-versed
disability-related experts would mean that more of these lessons
would be learned quickly and permanently integrated into existing
protocols, strengthening the nature, sensitivity, and quality of
the response.
FEMA devotes significant resources to training.
This report underscores the need for more focus on integrating
disability issues into all aspects of this training. In an attempt
to infuse disability content into a variety of disaster management
training, DHS’s CRCL
is expecting to learn more and improve its efforts. One venue for
this was the Conference on Emergency Preparedness for People with
Disabilities, held in Arlington, Virginia, on September 22–24,
2004, sponsored by the NOD in partnership with DHS and the National
Capitol Region. High-level authorities from the emergency management
community, disability communities, government agencies, private
business, and the service, advocacy, and care networks shared and
learned from each other’s experiences, resources, and best
practice models.
FEMA has three national processing centers
that centralize disaster application services for FEMA customers.
These centers house an automated “teleregistration” service––a
toll-free phone bank through which disaster victims apply for assistance
for individuals and households and have their applications processed
and questions answered. A major advantage of teleregistration is
timeliness. Toll-free lines can be staffed quickly, although in
catastrophic or multiple disaster situations there may be busy
signals until staffing is complete. Calls can normally be taken
within hours after the President declares a major disaster (FEMA
2003g).
An Internet search reveals that, typically
but not always, a TTY phone number is posted for these centers.
For example, FEMA can provide disaster housing assistance to
those whose homes are damaged or destroyed. To apply for assistance,
all you have to do is call the special toll-free telephone number,
1-800-621-FEMA (3362), and register. Specially trained operators
at one of FEMA’s
national processing service centers will process your application
(FEMA 2003f).
A disaster recovery center is a facility established
in, or in proximity to, the community affected by a disaster
where people can meet face-to-face with representatives of federal,
state, local, and volunteer agencies (FEMA 2003a–i) to
discuss their disaster-related needs; obtain information about
disaster assistance programs; teleregister for assistance; update
registration information; learn about measures for rebuilding
that can eliminate or reduce the risk of future loss; learn how
to complete the Small Business Administration loan application;
and request the status of their application for assistance to
individuals and households.
Part III. Role of Community-Based Organizations
CBOs are local organizations (usually nonprofit) serving the needs
of specific populations within the community. They represent a
vast array of human and social service organizations, faith-based
organizations, and neighborhood associations.
Experience of CBOs in Disasters
These are a few of many examples of the experiences of CBOs in
disaster mitigation, preparedness, and response:
- After Hurricane Andrew in Florida
in 1991, no plans existed for people with disabilities who use
group homes, residential programs, day programs, and other supportive
communities and environments to continue to receive the assistance
and services that were essential for their daily living (Consortium
for Citizens with Disabilities 1992).
- Service organizations lacked
emergency plans that would have enabled them to locate the people
they work with and inquire about their needs (Queen 1993).
- Group homes did not have plans
for emergency housing of residents, with the result that some
people were reinstitutionalized (Queen 1993).
- There were few disability-specific
agencies to pitch in and help the affected areas (Queen 1993).
- After the 1997 Minnesota
Red River flood, many people with disabilities were displaced
from their homes. Finding no housing and other resources to
meet their needs, people in Grand Forks
and East Grand Forks had to band together with CBOs to find ways
to meet individual needs and design a recovery plan (Options Resource
Center for Independent Living 1997).
On 9/11 the executive director of CIDNY watched
the World Trade Towers collapse. “An act of war happened down the street
from us!” CIDNY was simply not prepared to handle a
disaster of this magnitude. “I think we were on the right
track with everything we’ve been doing [beginning to plan
for emergencies]. I wish we had been further along” (ILRU
2002a).
Networking with Other CBOs and Government Emergency
Response Agencies
“I wish we’d had a stronger relationship with all
the other community-based agencies so we could coordinate efforts,” CIDNY’s
executive director said. “The time to build relationships
is not in the middle of a crisis. I wish we’d paid more attention
to efforts to include people with disabilities in disaster planning.
I wish we’d had better mechanisms in place to get the word
out that we exist and what we can do for people who need help” (ILRU
2002a).
Before September 11, CIDNY had no relationship
with the big players––FEMA,
the Red Cross, and many other local, state, and federal assistance
agencies. Now the big players realize that the independent living
community has a responsibility to educate and work with these agencies
on an ongoing basis (ILRU 2002a).
An important lesson these agencies learned
after 9/11 was not to trust that the needs of their clients would
be met by emergency management personnel during an emergency.
Emergency personnel do not have the knowledge or the resources
to provide all the necessary services to these populations (National
Emergency Training Center Emergency Management Institute 1993).
People with disabilities should not assume that emergency and
relief agencies understand accessibility, accommodations, communication,
transportation issues, or any other aspect of disability or independent
living. If people with disabilities haven’t worked to raise
the awareness of emergency personnel before the emergency, people
can plan to spend a lot of time educating them in the midst of
the crisis (ILRU 2002c).
In the past, CIDNY had been invited to participate in various
emergency preparedness meetings; but in the day-to-day reality
of providing independent living services after 9/11, those meetings
were not given much priority. That has changed now, and CIDNY hopes
to build on the relationships and learning that have occurred since
9/11.
Individual Preparedness Plans for People with Disabilities
CIDNY will also pay more attention to helping
consumers develop personal emergency preparedness plans. The
executive director explains, “We’ve
come to know a lot of people who were doing their own things and
had successfully created their own support networks. When their
support systems crumbled,” as they so dramatically did, “many
still thought they could work things out themselves. But as things
dragged on, they found they needed assistance” (ILRU 2002a).
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