g 

Including People with Disabilities

in Emergency Planning

National Council on Disability

April 15, 2005
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

Saving Lives: Including People with Disabilities in Emergency Planning

This report is also available in alternative formats and on the award-winning National Counc

on Disability (NCD) Web site (www.ncd.gov).

Publication date: April 15, 2005

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

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.
 NATIONAL COUNCIL ON DISABILITY 

An independent federal agency working with the President and Congress to increase the 

inclusion, independence, and empowerment of all Americans with disabilities.

1331 F Street, NW  Suite 850  Washington, DC 20004 

202-272-2004 Voice  202-272-2074 TTY  202-272-2022 Fax  www.ncd.gov 

1

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 
2

Letter of Transmittal 

Page 2 

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.)
3

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 
4
5

Table of Contents 

Acknowledgments............................................................................................................................7 

Executive Summary.........................................................................................................................9 

Purpose of the Report ..........................................................................................................9 

Scope of the Report............................................................................................................10 

Who Are People with Disabilities?....................................................................................10 

Major Findings...................................................................................................................11 

Key Recommendations ......................................................................................................13 

Part I. Introduction.........................................................................................................................15 

Purpose of the Report ........................................................................................................15

Scope of the Report............................................................................................................16 

Research Methods..............................................................................................................16 

Who Are People with Disabilities?....................................................................................17 

Disaster Experiences of People with Disabilities ..............................................................17 

Part II. Improving Access to Disaster Services for People with Disabilities ................................21 

Improving Access ..............................................................................................................21 

Preparedness ......................................................................................................................24 

Mitigation...........................................................................................................................32 

Response and Recovery .....................................................................................................33 

Physical, Communication, and Program Access ...............................................................33 

Training..............................................................................................................................39 

Part III. Role of Community-Based Organizations .......................................................................45 

Experience of CBOs in Disasters.......................................................................................45 

Networking with Other CBOs and Government Emergency Response Agencies ............46 

Individual Preparedness Plans for People with Disabilities ..............................................47 

Funding ..............................................................................................................................47 

Recognizing the Value and Talent of CBOs in Disaster Activities...................................48 

Promising Practices............................................................................................................50 

Part IV. The Developing Disability-Related Homeland Security, Emergency 

Preparedness, and Disaster Relief Infrastructure...........................................................................57 

Department of Homeland Security ....................................................................................57 

Federal Communications Commission..............................................................................78 

Part V. Conclusions and Recommendations..................................................................................87 

References......................................................................................................................................91 
6

Appendix........................................................................................................................................99 

Mission of the National Council on Disability ..................................................................99 
7

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. 
8
9

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. 
10

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. 
11

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. 
12

• 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. 
13

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. 
14

• 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. 
15

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. 
16

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 
17

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 
18

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). 
19

• 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 illequipped to respond to the needs of vulnerable populations. The traditional response and 
20

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. 
21

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, 
22

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). 
23

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 
24

• 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 
25

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 
26

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 
27

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). 
28

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. 
29

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 
30

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 
31

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-ofhearing 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). 
32

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) 
33

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 
34

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 
35

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 hearingassistive 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. 
36

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. 
37

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). 
38

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). 
39

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 
40

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). 
41

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 
42

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 
43

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 
44

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. 
45

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, faithbased 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 
46

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. 
47

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). 

Funding 

Federal and state legislation is often a major obstacle because it is not geared toward emergency 

response. Social services agencies often are reluctant to take on added responsibility during a 

disaster because spending additional money may leave them unable to provide basic services to 

their clients for the rest of the fiscal year. Private nonprofit organizations and private for-profit 

organizations are not eligible for reimbursement from federal disaster funds unless they are 

mandated or identified before a disaster by a local or state agency to have specific disaster 

responsibilities (National Emergency Training Center Emergency Management Institute 1993). 

CIDNY’s first attempts to get the attention of FEMA and the Red Cross were hampered by the 

general lack of understanding about the diverse, and sometimes complex, needs of people with 

disabilities. The funding organization was finally convinced after CIDNY submitted an explicit 

grant application detailing real-life examples of the problems people are facing and the center for 

independent living’s unique capability to understand and help resolve them (ILRU 2002a). 

Shortly after 9/11, CIDNY staff and volunteers started a log to track the multitude of contacts 

and requests for assistance. This is a sampling of log notations from November 5, 2001. It is a 

chronicle of the diverse ways people with disabilities were affected when New York City’s 

complex system of services and supports collapsed in the aftermath of the attack on the World 

Trade Center (ILRU 2002a). 

• ...young architect has multiple sclerosis...uses a scooter that he had to leave behind...went 

to parents’ home...60-year-old father carrying him up and down stairs daily... 
48

• ...has CP...uses walker...was told he would have to walk from Brooklyn Bridge or Canal 

Street to his school... 

• ...had to stay in the hospital because there was no way to get back and forth for dialysis... 

• ...21-year-old woman with significant traumatic brain injury...witnessed WTC collapse and 

is traumatized...has no food/income...is scared and highly vulnerable... 

• ...claims she has made 36 trips to four different Red Cross centers... 

• ...consumer with lung and brain cancer was displaced from her home...currently staying 

in hotel...needs transportation to her medical appointment next week... 

Recognizing the Value and Talent of CBOs in Disaster Activities 

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 

often are unable 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). 

It is critical for emergency preparedness and response plans to address and accommodate all 

individuals, including vulnerable populations. Numerous agencies and organizations exist that 

have extensive knowledge and expertise on the needs of these populations. CBOs are often a part 

of naturally occurring local networks, which are powerful support tools (Davis and Cahill 2003). 

CBOs have unique and credible connections with––and expertise in delivering services to––

people with disabilities and activity limitations. This unique know-how and understanding can 

be a valuable resource during planning, preparedness, response, recovery, and mitigation 

activities. CBOs should be included as partners in working with local, state, regional, and federal 

public and private response agencies to deal more effectively with and understand the needs, 

geography, demographics, and resources of their local areas. 
49

“Social service agencies must understand that they have a significant role in emergency 

preparedness, response, and recovery. They provide a support network for people with 

disabilities that emergency management cannot replace. In planning, FEMA, other federal 

agencies, and state and local emergency planners must help to set the expectations for the 

performance of social services agencies, and the social services agencies themselves must 

educate their clients about agency roles in a disaster” (National Emergency Training Center 

Emergency Management Institute 1993).

Emergency managers generally have little knowledge about the needs of people with disabilities. 

“To effectively provide services to these populations and meet the requirements for 

accommodations under ADA, emergency managers must understand the needs of these groups, 

the social services mechanisms that are in place to serve them, and how to work with social 

service agencies to integrate these mechanisms into emergency planning” (National Emergency 

Training Center Emergency Management Institute 1993). 

The social services network for people with disabilities is based on categorical needs and 

therefore is fragmented. As a result, it is not easy to make this network fit into a network to 

provide general services. No single specific-needs system exists, and agencies that provide 

services to a particular group of people often are unaware of agencies with similar missions for 

other groups (National Emergency Training Center Emergency Management Institute 1993). 

Disability-specific CBOs often 

• Are able to assist in preparedness planning and disaster assistance because they know and 

can protect best the specific interests and needs of groups that they assist on a daily basis. 

• Know best how to reach out to the populations they assist. 

• Have the most current records. 

• Are accessible in terms of design and layout of facilities, environmental needs such as indoor 

air quality and temperature, and communication––the way information is delivered through 

signage, technology, interpersonal exchanges, sign language interpreters, picture books for 
50

people with cognitive disabilities, and materials in alternative formats (e.g., Braille, large 

print, disks, audio cassettes). 

• Are able to distribute supplies and administer emergency aid. 

• Can serve as satellite distribution sites to provide alternatives, for some individuals, to 

traditional shelters. 

Because effective disaster response always takes place locally, the challenge for emergency 

management professionals is to integrate the CBOs’ skill and knowledge into the emergency 

service plans and strategy, and connect them to local government. Emergency managers need to 

recognize, recruit, encourage, and provide funding and incentives so that CBOs can participate in 

disaster preparedness and relief. 

Promising Practices 

These are examples of CBOs’ promising practices in disaster planning, response, recovery, and 

mitigation that could be modeled, piloted, and implemented. 

Triad Alliance 

“There is a 70 percent probability of at least one magnitude 6.7 or greater quake, capable of 

causing widespread damage, striking the San Francisco Bay Region before 2030. Major quakes 

may occur in any part of this rapidly growing region,” said the U.S. Geological Survey in 

October 1999. This quote emphasizes the urgency for all communities in the Bay region to 

continue preparing for earthquakes. Acknowledging this significant risk, and recognizing the 

special needs of the community’s vulnerable population, the Triad Alliance was developed to 

ensure that high-risk clients do not fall through the cracks during the response and recovery 

phases of an emergency. The “triad” consisted of the City of San Leandro, California (in the San 

Francisco Bay Area region); the Collaborating Agencies Responding to Disasters (CARD); and 

CBOs in the region. This Triad Alliance has taken the steps to address the special and unique 

needs associated with the community’s vulnerable population during and after a disaster (City of 

San Leandro 2004). 
51

The usual approach to delivering emergency services does not always provide the essential services 

for the portion of the population who have special needs. This population may represent those 

people who are physically or mentally disabled, medically or chemically dependent, elderly, 

children, homeless, and non-English speakers. Recent disasters demonstrate that traditional 

response agencies are often ill-equipped to respond to the special needs of our vulnerable 

populations. Following the Loma Prieta earthquake in October 1989 in the San Francisco area and 

the Northridge earthquake in January 1994 in the Los Angeles area, emergency services 

professionals became painfully aware that the traditional response and recovery systems were not 

able to satisfy all the human needs successfully. The usual approach to delivering emergency 

services does not always provide the essential services for that portion of the population requiring 

special needs––the vulnerable population (City of San Leandro 2004). 

Given the high potential for future catastrophic disasters throughout the United States, it is 

imperative to establish an emergency protocol and plan for delivering services to people with 

language, cultural, and accessibility needs. The vulnerable population is usually served by 

CBOs, the local organizations that meet the needs of specific populations within the community. 

CBOs bring unique expertise in delivering services to people with special needs. The challenge 

for emergency management professionals is to integrate the CBOs’ skill and knowledge into the 

emergency services plans and strategy, thus connecting them to local government. This 

connection enhances the response and recovery efforts to our vulnerable populations. The Triad 

Alliance provides that essential participation and linkage (City of San Leandro 2004). 

The Triad Alliance is the best assurance that the special needs of the vulnerable population will 

be successfully addressed during long- and short-term emergency operations. The alliance 

consists of a number of essential elements that together create a program in which CBOs are 

more prepared before a disaster and thus are better able to better serve their clients during and 

following a disaster. The three organizational components of the Triad Alliance are as follows: 

• The City of San Leandro: The emergency services division, located in the city manager’s 

office, is an active cofounder of the alliance and represents the city in alliance matters and 
52

activities. A key objective of the division’s mission is to coordinate emergency response and 

recovery efforts among city government, school districts, business, CBOs, and special districts. 

• CARD: CARD is a cofounder of the alliance. This nonprofit organization was founded in 1994, 

with the support of the American Red Cross and United Way. It was formed as a result of the 

1989 Loma Prieta earthquake, when a gap was seen in meeting the needs of the vulnerable 

populations during and following the quake. CARD’s focus is meeting the needs of the 

community’s underserved population. CARD has received local, state, national, and 

international recognition for its model of coordinating disaster planning for at-risk populations. 

• CBOs: CBOs are the third principal member of the alliance. They form a direct link to the 

community’s vulnerable population––their clients. Two CBOs are selected as lead agencies 

to represent the city’s CBO community. These agencies have special experience, knowledge, 

and skills necessary to serve their clients; this unique know-how, understanding, and 

expertise becomes an invaluable resource during the response and recovery phases of an 

emergency or disaster. The city’s emergency strategy becomes more responsive and effective 

in addressing the human services issues by incorporating CBOs into the city’s emergency 

plan and emergency organization. 

Emergency Network Los Angeles 

The Emergency Network Los Angeles (ENLA) is an organization that has been set up to 

coordinate disaster response and emergency preparedness by establishing links with Los Angeles 

County CBOs, the government, and the private sector. ENLA is part of Los Angeles County 

Voluntary Organizations Active in Disaster (VOAD). ENLA has created a list of local and 

national disaster preparedness and response resources (Los Angeles County Voluntary 

Organizations Active in Disaster 2003). 

Voluntary Organizations Active in Disasters 

VOAD is an organization in each state or region that works to keep CBOs informed and 

involved during times of disaster. VOAD creates a coordinated effort of numerous agencies and 
53

organizations and prevents the reinvention-of-the-wheel effect that limits the amount of services 

and the level of efficiency that each organization provides if working alone. 

The National Voluntary Organizations Active in Disasters organization (NVOAD) was 

established in the 1970s as a way to coordinate the planning and efforts of voluntary 

organizations in the event of a disaster. When a disaster occurs, NVOAD members meet at the 

disaster sites to coordinate the many services that the community members provide. NVOAD is a 

nonprofit organization committed to serving its state and national VOAD member organizations 

through communication, cooperation, coordination, education, leadership development, 

mitigation, convening mechanisms, and outreach opportunities (National Voluntary 

Organizations Active in Disasters 2004). 

During the 1980s, it became clear that individual states should have VOAD organizations to 

coordinate local efforts better. Thus state and regional VOADs serve the local communities in 

which they are established and communicate and interact directly with NVOAD. Examples of 

VOAD members include local churches, the Salvation Army, and the Red Cross. NVOAD is 

committed to serving states and regions that are interested in developing and maintaining a 

VOAD organization and have created a comprehensive guide for doing so. 

National Emergency Resource Information Network 

To date, funding to organize CBOs effectively and include them in these important roles has 

been sporadic and inconsistent. For example, the National Emergency Resource Information 

Network (NERIN) was a temporary program funded in the 1990s by the Department of 

Commerce to determine the feasibility of a national human service network. This project focused 

on the role of human service responders and referral agencies, including CBOs as part of a large 

nonprofit service network that could work with local government agencies. Project plans 

included Web sites and databases with resource information that would be accessible to a variety 

of communities. Outcomes of the project included recommendations for network 

implementation. This important project was not funded beyond the initial study. 
54

Community collaborative groups 

Community collaborative groups bring together local CBOs serving at-risk populations to 

specifically address issues related to disaster preparedness and response. Community 

collaborative groups vary in size, organizational structure, and procedures. Their common bond 

is a commitment to addressing the emergency preparedness needs of vulnerable, high-risk 

populations. They establish cooperative agreements among organizations that support and assist 

similar populations. These agreements allow such organizations to help each other when their 

own staff or resources are reduced or unavailable (Monterey County Emergency Food 

Assistance Project undated, San Francisco CARD undated, VOICE of Contra Costa County 

undated, Volunteer Center of Marin undated). 

By participating in a local collaborative, organizations connect to a network of other service 

providers and a variety of resources to meet their individual needs. Community collaborative 

groups can provide services that the traditional emergency service providers do not, or are not 

permitted to provide. Participating organizations can learn how to stay open and operational after 

a disaster, and ensure that necessary services are provided to the people they support. Through 

the collaborative network, organizations can learn what resources are available to them if they 

are affected by a disaster and how to maintain the documentation that may allow them to be 

reimbursed for disaster service-related costs (Brisson and Petersen undated). 

Information and Referral 2-1-1 

Following the September 11, 2001, terrorist attacks, an estimated 400 telephone hotlines were 

established in New York City, for various funds and services, creating a confusing network for 

victims and volunteers to navigate. A U.S. Comptroller General report on charitable aid 

following the terrorist attacks found that “families of victims generally believed they had to 

navigate a maze of service providers in the early months” and that “good information about and 

easy access to available assistance could help survivors in the recovery process” (Walker 2004).

In 2000, the FCC assigned the phone number 2-1-1 for community information and referral 

nationwide, making this scarce resource available for the sole purpose of community information 

and referral. The 107th Congress recognized the importance of 2-1-1 telephone service in 
55

community preparedness and response by including use of that telephone number for public 

information as an allowable use of funds under grants for preparedness and response to 

bioterrorism and other public health emergencies. The phone number 2-1-1 provides callers with 

a way to access information about and referrals to human services for everyday needs and in 

times of crisis (United Way of Connecticut undated). 

Currently established 2-1-1 systems are completely funded by the state and local government, 

businesses, nonprofit organizations, and other agencies. While 20 percent of the population has 

access to 2-1-1 telephone service in 21 states, inadequate funding prevents access to that 

telephone service throughout each of the states. Currently, 2-1-1 telephone service is available 

statewide only in Connecticut and Hawaii (United Way of Connecticut undated). 

Rapid deployment of a nationwide 2-1-1 telephone service as a means of access to information 

about and referral to human services requires collaboration among state governments, 

comprehensive and specialized information and referral centers, human service organizations 

and service providers, emergency management and homeland security officials, telephone 

companies, and other relevant entities (United Way of Connecticut undated). 

Working with CBOs as partners in disaster response and relief does not relieve government 

responsibility. It augments government efforts and forms a critical partnership with the 

community. DHS should value and offer funding and other incentives to encourage CBOs to 

become involved in disaster activities (Kailes 2000a). CBOs can do the following: 

• Develop organization disaster plans that include information about how CBOs can survive a 

disaster and continue to serve people. 

• Participate in Community Emergency Response Teams and Citizen Corps (Citizen Corps 

undated, FEMA undated-b). 

• Participate in cross-training with disaster response personnel and disability-specific 

organizations personnel so both groups gain a better understanding of each other’s expertise 

and roles and can plan together for a coordinated response. 
56

• Assist the people they support in developing individual and family preparedness and 

mitigation plans. 

• Preestablish contracts so that CBOs are not encumbered by procedural delays. Such contracts 

would allow emergency response funds––from local, state, regional, and Federal 

Government agencies as well as foundations and corporations––to be immediately 

appropriated and used. This would allow for quick deployment of disability-specific relief 

services. For example, relocation to shelters might not be needed if such backup services 

were available. Provision through contracts for backup electrical units, such as standalone or 

portable generators to reactivate or recharge assistive devices, elevators, and appliances, can 

alleviate overcrowding at shelters and help people with disabilities remain in their home or 

communities in potentially safer and more accessible environments. 
57

Part IV. The Developing Disability-Related Homeland 

Security, Emergency Preparedness, and 

Disaster Relief Infrastructure 

Department of Homeland Security 

The Homeland Security Act, passed on November 25, 2002, combined 22 government agencies 

into the new DHS. DHS says it “streamlines and centralizes federal actions into one cohesive unit. 

It provides one point of contact for state and local groups and the private sector” (DHS, 2004a). 

The 22 agencies are divided into five directorates: 

• Border and Transportation Security 

• EP&R 

• Science and Technology 

• Information Analysis and Infrastructure Protection 

• Management 

The Coast Guard and the Secret Service are not part of the five directorates because these two 

departments report directly to the secretary of homeland security (Stichter 2003). This government 

reorganization was initiated to provide a more uniform set of directions to the many departments, 

agencies, and units that each do a part to serve and protect the people of the United States. 

Budget 

The budget for DHS included $41 billion in 2004 and $47 billion in 2005. Spending for these 

efforts in 2001, although not yet under the direction of DHS, totaled approximately $21 billion. Of 

the 2004 DHS budget, 37 percent was allocated to support efforts by the border and transportation 

authorities; 30 percent was allocated to protect critical infrastructure within the country; 17 percent 
58

was allocated for EP&R efforts; and 15 percent was apportioned for counterterrorism, defending 

catastrophic threats, and intelligence and warning activities (Schmit 2004). 

Mission 

DHS’s mission includes preventing and reducing the risk of future terrorist attacks; minimizing 

the damage if such acts do occur, as well as aiding in recovery efforts; continuing to carry out 

the functions of each of the individual units in the newly created department; maintaining the 

same level of service to nonterrorism-related items from each of the individual units in the 

department; ensuring that the country’s economic security is not diminished in spite of the newly 

created department; and continuing to monitor and sever connections between drug trafficking 

and terrorism (Walker 2004). 

Directorate of Emergency Preparedness and Response 

DHS’s EP&R is charged with ensuring that the country is prepared for catastrophes––whether 

natural disasters or terrorist assaults. The directorate coordinates with first responders and 

oversees the Federal Government’s national response and recovery strategy. 

DHS builds on FEMA’s long track record of aiding the nation’s recovery from emergency 

situations. EP&R continues FEMA’s efforts to reduce the loss of life and property and protect 

the nation’s institutions from all types of hazards through a comprehensive, risk-based 

emergency management program of preparedness, prevention, response, and recovery. 

EP&R develops and manages a national training and evaluation system to design curriculums, 

set standards, evaluate, and reward performance in local, state, and federal training efforts. 

EP&R continues FEMA’s practice of focusing on risk mitigation in advance of emergencies by 

promoting the concept of disaster-resistant communities, including providing federal support for 

local governments that promote structures and communities that reduce the chances of being hit 

by disasters. EP&R coordinates with private industry, the insurance sector, mortgage lenders, the 

real estate industry, homebuilding associations, citizens, and others to create model communities 

in high-risk areas. 
59

EP&R leads DHS response to all biological or radiological attacks, and it coordinates the 

involvement of other federal response teams, such as the National Guard, in the event of a major 

incident (DHS 2004a). 

Federal Emergency Management Agency 

On March 1, 2003, FEMA became part of DHS’s EP&R, which brings together, in addition to 

FEMA, the Strategic National Stockpile and the National Disaster Medical System (from the 

Department of Health and Human Services [HHS]); the Nuclear Incident Response Team (from 

the Energy Department); Domestic Emergency Support Teams (from the Justice Department); 

and the National Domestic Preparedness Office (from the Federal Bureau of Investigation). 

FEMA’s continuing mission within the new department is to lead the effort to prepare the nation 

for all hazards and effectively manage federal response and recovery efforts following any 

national incident. FEMA also initiates proactive mitigation activities, trains first responders, and 

manages the National Flood Insurance Program and the U.S. Fire Administration. 

FEMA has more than 2,600 full time employees. They work at FEMA headquarters in 

Washington, D.C., at regional and area offices across the country, at the Mount Weather 

Emergency Operations Center in Virginia, and at the National Emergency Training Center in 

Emmitsburg, Maryland. FEMA also has nearly 4,000 standby disaster assistance employees who 

are available for deployment after disasters (FEMA 2004a). 

To understand what FEMA does, think about the life cycle of disasters. The disaster life cycle 

describes the process by which emergency managers prepare for emergencies and disasters, 

respond to them when they occur, help people and institutions recover from them, mitigate their 

effects, reduce the risk of loss, and prevent disasters such as fires from occurring. At every stage 

of this cycle, FEMA is charged with building and supporting the nation’s emergency 

management system (FEMA 2004a). 

Emergency management is not the result of one government agency. FEMA’s influence is farreaching, especially in response to a presidentially declared disaster, when FEMA may work 

with as many as 27 federal agencies and the American Red Cross to provide assistance. These 
60

agencies provide state and local governments with personnel, technical expertise, equipment, and 

other resources, and they assume an active role in managing the response. In addition to its 

federal partners, FEMA works with many nonprofit and private sector agencies to assist the 

public in preparing for, responding to, and recovering from a disaster. Together, these players 

make up the emergency response team (FEMA 2004c). 

To coordinate the federal efforts, FEMA recommends that the President appoint a Federal 

Coordinating Officer for each state that is affected by a disaster. This officer and the state 

response team set up a disaster field office near the disaster scene. It is from this office that the 

federal and state personnel carry out response and recovery functions. These functions represent 

12 ESFs (emergency support functions), each headed by an agency supported by other agencies. 

Emergency support functions 

The resources provided by the federal government are grouped into the following 12 ESFs: 

• ESF 1: Transportation. Providing civilian and military transportation. Lead agency: 

Department of Transportation 

• ESF 2: Communications. Providing telecommunications support. Lead agency: National 

Communications System 

• ESF 3: Public Works and Engineering. Restoring essential public services and facilities. 

Lead agency: U.S. Army Corps of Engineers, Department of Defense 

• ESF 4: Fire Fighting. Detecting and suppressing wild land, rural, and urban fires. Lead 

agency: U.S. Forest Service, Department of Agriculture 

• ESF 5: Information and Planning. Collecting, analyzing, and disseminating critical information 

to facilitate the overall federal response and recovery operations. Lead agency: FEMA 

• ESF 6: Mass Care. Managing and coordinating food, shelter, and first aid for victims; 

providing bulk distribution of relief supplies; operating a system to assist family 

reunification. Lead agency: American Red Cross 
61

• ESF 7: Resource Support. Providing equipment, materials, supplies, and personnel to federal 

entities during response operations. Lead agency: General Services Administration 

• ESF 8: Health and Medical Services. Providing assistance for public health and medical care 

needs. Lead agency: U.S. Public Health Service, HHS 

• ESF 9: Urban Search and Rescue. Locating, extricating, and providing initial medical 

treatment to victims trapped in collapsed structures. Lead agency: FEMA 

• ESF 10: Hazardous Materials. Supporting federal response to actual or potential releases of 

oil and hazardous materials. Lead agency: Environmental Protection Agency 

• ESF 11: Food. Identifying food needs; ensuring that food gets to areas affected by disaster. 

Lead agency: Food and Nutrition Service, Department of Agriculture 

• ESF 12: Energy. Restoring power systems and fuel supplies. Lead agency: Department 

of Energy 

Office for Civil Rights and Civil Liberties 

The CRCL protects civil rights and civil liberties and supports homeland security by providing 

DHS with legal and policy advice on the full range of civil rights and civil liberties issues the 

department will face, and by serving the public as an information and communications channel 

on all aspects of these issues. Congress created the Office to review and assess allegations of 

abuse of civil rights or civil liberties, and racial or ethnic profiling, by DHS personnel. The 

office is required to report annually to Congress on any such abuses committed by DHS 

personnel, how much money was required to resolve these complaints, and how the complaints 

were resolved (DHS 2004b). 

Leadership 

On July 22, 2004, President Bush signed an Executive Order emphasizing the importance of 

implementing emergency preparedness plans that accommodate individuals with disabilities 

(White House Office of the Press Secretary 2004). Tom Ridge, the first director of the Office of 
62

Homeland Security, stated in November 2001 at a White House meeting with representatives 

from the disability community–– 

One of the challenges for the Office of Homeland Security––and it’s a wonderful challenge–

–is to integrate all the Americans who want to help be part of homeland security into a 

national strategy....Obviously, they’ve got some unique and very special challenges that we’d 

have to deal with, but they also have some very unique and, I think, probably helpful ideas 

and we want to integrate them in the process of developing a national strategy (NOD 2001a). 

Like this presidential order and Secretary Ridge’s statement, clear and continual strong messages 

and directives from multiple visible leaders must communicate and reinforce values, directions, 

and performance expectations. 

Interagency Coordinating Council on Emergency Preparedness and 

Individuals with Disabilities 

In April 2004, DHS’s CRCL assembled an internal working group made up of a variety of 

departments and agencies. This group meets monthly and focuses on disability issues such as 

Section 504 and 508 of the 1973 Rehabilitation Act, ADA, and issues related to the 

Transportation Security Administration (TSA). The goal is to examine what is in place and to 

identify gaps. FEMA, the Office of Domestic Preparedness (ODP), TSA, and the Citizen Corps 

are some of the members. (ODP is the principal component of DHS responsible for preventing 

and preparing the United States for acts of terrorism. In carrying out its mission, ODP is the 

primary office responsible for providing training, funds for the purchase of equipment, support 

for the planning and execution of exercises, technical assistance, and other support to assist 

states and local jurisdictions to prevent, plan for, and respond to acts of terrorism.) 

The July 2004 President’s Executive Order on emergency preparedness for people with 

disabilities established an Interagency Coordinating Council on Emergency Preparedness and 

Individuals with Disabilities, which will help agencies and private individuals and organizations 

take into account the unique needs of people with disabilities in their emergency preparedness 

planning (White House Office of the Press Secretary 2004). 
63

The council is to submit a report to the President each year, beginning one year after the date of 

this order, through the assistant to the president for homeland security. This report describes the 

achievements of the council; the best practices among federal, state, local, and tribal 

governments and private organizations and individuals for emergency preparedness planning 

with respect to individuals with disabilities; and recommendations of the council for 

advancing policy that ensures that the Federal Government appropriately supports safety and 

security for individuals with disabilities in situations involving disasters (White House Office of 

the Press Secretary 2004). 

Civil rights enforcement 

Resources Needed. Two key resources are required for an effective civil rights enforcement 

program: adequate staffing and adequate funds to support enforcement. Civil rights 

compliance is a labor-intensive effort. Without sufficient staff, investigations and compliance 

reviews may be delayed or deferred. Financial resources are required to support investigations, 

pay for travel, provide training and technical assistance materials, underwrite new initiatives, 

and provide expertise that is not otherwise available to the agency. Each federal agency that 

provides federal financial assistance is responsible for investigating complaints of 

discrimination in the use of its funds. 

Filing a Complaint Online. A search of the FEMA home page for “filing a complaint,” “504 

complaint,” or “disability complaint” quickly resulted in appropriate information. The subject 

“ADA complaint” did not yield any complaint-related “how-to” information. The helpline 800 

number did not include a TTY number (FEMA 2003b). A search of DHS’s home page for “filing 

a complaint quickly” resulted in appropriate information. “ADA complaint” did not yield any 

complaint-related “how-to” information. 

Office for Civil Rights and Civil Liberties. DHS’s CRCL protects civil rights and civil liberties 

and supports homeland security by providing DHS with legal and policy advice on the full range 

of civil rights and civil liberties issues. The office, which began operations in March 2003, was 

created by Congress to review and assess allegations of abuse of civil rights or civil liberties, and 

racial or ethnic profiling, by DHS personnel. The CRCL is required to report annually to 
64

Congress on any such abuses committed by DHS personnel, how much money was required to 

resolve such complaints, and how such complaints were resolved (DHS 2004b). The CRCL’s 

2004 budget request was $12,950,000. 

Civil Rights Program of EP&R/FEMA. Michael D. Brown, under secretary of DHS for EP&R, 

has said that EP&R/FEMA’s goals–– 

...are to protect lives and prevent the loss of property; to reduce human suffering and 

enhance the recovery of communities after disaster strikes; and to ensure that EP&R/FEMA 

is a high-performance organization serving the public in a timely and cost-efficient manner. 

We will not truly fulfill these goals unless we also protect precious rights and prevent 

discrimination. I expect support from every employee of EP&R/FEMA in carrying out our 

Civil Rights mandates (FEMA 2003a–i). 

FEMA states that it is the policy of DHS and EP&R/FEMA to ensure that the civil rights of all 

persons receiving services or benefits from agency programs and activities are protected. 

No person shall, on the grounds of race, color, national origin, sex, religion, age, disability, 

or economic status, be denied the benefits of, be deprived of participation in, or be 

discriminated against in any program or activity conducted by or receiving financial 

assistance from EP&R/FEMA. In particular, all personnel carrying out federal major disaster 

or emergency assistance functions, including the distribution of supplies, the processing of 

applications, and other relief and assistance activities, shall perform their work in an 

equitable and impartial manner without discrimination (FEMA 2003 a–i). 

Any person eligible to receive disaster aid or other services from FEMA is entitled to those 

benefits without discrimination. The laws that guarantee these protections include the following: 

• Section 504 of the 1973 Rehabilitation Act, which prohibits federal agencies and federally 

funded programs from discriminating on the basis of disability. It is designed to promote and 

expand opportunities for people with a broad range of disabilities and offer broad-based 

protection from unwarranted discrimination stemming from prejudice, social stigmas, and 

negative assumptions about their ability to participate fully in the mainstream of society. 

Section 504 covers a number of entities and federally funded activities not reached by the 

ADA. It is intended to make certain that tax dollars will not be used to establish, promote, or 

reinforce discrimination against people with disabilities (NCD 2003b). Congress also 
65

intended the federal agencies to address and correct the ways in which recipients of these 

funds were discriminating against individuals with disabilities. 

• Section 508 of the 1973 Rehabilitation Act, which deals specifically with access to 

computers and information technology. 

• Title VI of the Civil Rights Act of 1964, which protects individuals from discrimination on the 

basis of their race, color, or national origin in programs that receive federal financial assistance. 

• Section 308 of the Robert T. Stafford Emergency Management and Disaster Assistance Act, 

which prohibits discrimination on the basis of race, color, religion, nationality, sex, age, or 

economic status in all disaster assistance programs. 

EP&R/FEMA’s civil rights program section of the Office of Equal Rights (OER) provides the 

following: 

• Technical assistance––policy guidance to the agency in meeting civil rights mandates. In 

disaster operations, staff work closely with community organizations to resolve tensions and 

eliminate potential complaints. The office also provides assistance to the agency and the 

national emergency management community in the effort to make publications, programs, 

and facilities accessible to people with disabilities; provides guidance to the federal 

coordinating officer on equal employment opportunity (EEO) and civil rights matters; and 

presents training on sexual harassment prevention, cultural diversity, and the EEO process. 

• EEO counseling––assistance to FEMA employees, employment applicants, and managers to 

resolve problems quickly; guidance to supervisors through downsizing to achieve the best 

possible outcome; and processing of all complaints that cannot be resolved informally 

(FEMA 2003d). 

• Complaints resolution––a contact point for anyone who believes he or she has been 

discriminated against in receiving services or benefits from FEMA. Disaster applicants can 

obtain help from an equal rights officer through the FEMA helpline. If that officer cannot 

resolve the issue, a formal written complaint may be filed with OER. This office is 
66

responsible for processing complaints, acknowledgment, acceptance/dismissal, 

investigations, compliance reviews, and issuing final decisions (FEMA 2003d). 

Equal Rights Officer Cadre. The equal rights officer cadre is a diverse group composed of 

people with backgrounds in such fields as EEO, civil rights, human resources management, 

conflict resolution, and community organization. They serve on the direct staff of the federal 

coordinating officer at the disaster field office. 

In addition to technical assistance and training and EEO counseling, the equal rights officer 

cadre focuses on resolution of civil rights complaints. The cadre staff work proactively with 

community relations, public affairs, human services, and other disaster field office components 

to resolve individual or group civil rights issues; visit and speak with key community leaders and 

organizations; assess accessibility at disaster recovery centers; and distribute information about 

EP&R programs. They investigate disability-specific civil rights complaints and maintain 

contact with the disability community. 

If individuals believe they or others protected by civil rights laws have been discriminated 

against in receiving disaster assistance, they can contact one of FEMA’s equal rights officers, 

who have the job of ensuring equal access to all FEMA disaster programs. That officer will 

attempt to resolve the issues. If the matter is not resolved, individuals may file a complaint with 

FEMA. A signed, written complaint needs to be sent to the OER, generally within 180 days of 

the date of the alleged discrimination. 

Once a complaint is filed, FEMA reviews it to determine whether FEMA has jurisdiction to 

investigate the issues raised. If the complaint is accepted, FEMA will investigate it and attempt 

to resolve any violations that are found. If negotiations to correct a violation are unsuccessful, 

enforcement proceedings may be instituted. 

The civil rights program manager supervises the equal rights officers and spends approximately 

45 percent of the time on disability-specific activities, such as attending national meetings, 
67

advising other federal agencies, and providing disability-specific emergency planning and 

technical assistance to state and local government agencies. 

Using Funding Sanctions to Enforce Section 504 and ADA. The CRCL is currently working on a 

draft document that will remind grantees of their Section 504 and ADA obligations. A more 

proactive approach may be needed. The CRCL also stated that the Department of Justice is 

actively working on guidance for state and local emergency planning departments that reinforces 

their legal obligation to comply with Section 504 and ADA in planning for, operating, and 

managing shelters and other disaster services. 

Often the threat of temporarily withholding even a portion of the funds is enough to persuade a 

grantee to rethink its plans and attend to the assurances that are often in very small print, buried 

in the back of grant and contract agreements. Congress included this as an effective remedy to 

address discrimination on the basis of disability by recipients of federal funds. 

To combat disability discrimination in the most effective way possible, it is NCD’s view that 

federal agencies should use their sanctioning authority, including making recipients ineligible to 

apply for continued or new funding while they are not in compliance with federal civil rights 

laws. This strategy could effectively be incorporated into notices of funding availability and 

program eligibility requirements, so that no recipient or potential recipient can be funded while a 

preliminary or final finding of noncompliance is pending. This strategy should become an 

integral part of agencies’ Section 504 enforcement efforts. DHS should also develop and apply a 

range of sanctions to help bring recipients of federal funds into compliance with Section 504. 

Additionally, DHS should publicize their efforts to maximize deterrence against violations of the 

rights of people with disabilities (NCD 2003a, b).

Federal funding agencies have the authority and the ability to influence their recipients’ choices 

of how to spend their federal dollars. Recipients, for example, have used their federal funds to 

create separate recreation activities or swimming classes; to deny participation in employment 

programs to applicants who take medications for psychiatric disabilities; and to place public 

benefit programs in inaccessible buildings. Each of these decisions is likely to be or to lead to a 
68

violation of both Section 504 and ADA. However, only the funding agency can withhold the 

amount of funding that is equivalent to the amount that would support the illegal activity. It can 

do much more, of course, but often the threat of temporarily withholding even a portion of the 

funds is enough to persuade the city to rethink its plans (NCD 2003b). 

Encouraging beneficiaries to comply with civil rights obligations and agreements is a very 

effective way for DHS to maximize its resources and compliance. To date, DHS has not initiated 

funding terminations to enforce Section 504 against grantees that violate the law. NCD believes 

that stronger efforts should be devoted to clearly communicating to grantees that their funds can 

be withheld if they violate Section 504 or ADA. 

Congress provided this remedy to give federal agencies the leverage they needed to force 

recalcitrant grantees to stop using tax dollars in discriminatory ways and to otherwise encourage 

voluntary compliance with the law. 

Technical Assistance, Training, and Outreach. Encouraging the help of the public to ensure that 

DHS’s disaster management networks comply with civil rights laws is an effective way for DHS 

to maximize its resources. It assists DHS by turning to the public and to DHS recipients for help 

in identifying discrimination and technical assistance needs (NCD 2003b). 

Stronger outreach, targeted technical assistance, and training initiatives focused on ADA and 

Section 504 compliance issues are needed, NCD believes. A search for “504 technical assistance 

or guidance” and “ADA technical assistance or guidance” from the FEMA and DHS home pages 

resulted in only one resource: 

Americans with Disabilities Act (ADA) Access Requirements, Date Published: October 26, 

2000, Response and Recovery Directorate Policy Number: 9525.5. This policy provides 

guidance in determining the eligibility of costs for federally required ADA access 

compliance associated with Public Assistance (PA) program grants. This policy is applicable 

to all major disasters and emergencies declared on or after the publication date of this policy. 

It is intended for Federal Emergency Management Agency (FEMA) personnel involved in 

making eligibility determinations for the PA program (FEMA 2003f). 
69

Successful Technical Assistance Practices. Examples of successful technical assistance practices 

at the HHS office of civil rights can be found at www.hhs.gov/ocr/generalinfo.html and 

www.hhs.gov/ocr/selectacts. This office has a wide array of technical assistance materials 

available online. The HHS Web site contains references to a large number of technical assistance 

materials (easily accessed through a drop-down menu that includes “civil rights” and 

“disabilities”), including complaint filing information, fact sheets, regulations, and case 

summaries. The case summaries include examples of HHS enforcement actions and summaries 

of several resolutions of Section 504 complaints. The civil rights resource page contains links to 

other federal enforcement agencies (NCD 2003b, pp. 81–82). 

The Department of Education’s Web site has a number of technical assistance materials, 

including a short list of frequently asked questions, case decisions, a description of the 

complaint investigation process of the department’s office of civil rights, and a breakdown of 

complaints by type. The site is at www.ed.gov/offices/OCR/disabilityresources.html. The 

Department of Education also has technical assistance materials directed at recipients, 

including guidance on developing a nondiscrimination policy and developing effective 

grievance policies and similar resources (www.ed.gov/offices/OCR/prevention.html). 

Production of ADA and Section 504 guidance materials available online and through technical 

assistance, including fact sheets, technical briefs, and regulation and case summaries, are very 

helpful in increasing compliance with civil rights laws. 

Compliance Reviews. DHS does not conduct proactive reviews of recipients’ compliance or 

noncompliance with Section 504 and ADA. Agencies enforcing Section 504 have the authority 

to conduct proactive reviews of recipients’ compliance, or noncompliance, with Section 504. 

This authority is discretionary because it is not driven by complaints; it can be exercised even in 

the absence of complaints. Compliance reviews permit a comprehensive examination of the 

activities of a particular recipient for compliance with the law. A compliance review may be 

used to identify hitherto undisclosed compliance issues, it can provide an early alert about 

emerging problems, and it can be used as a vehicle for training or technical assistance. 

Compliance reviews may be, and sometimes are, used as an effective enforcement tool, carrying 

with them the possibility of a wide variety of sanctions, including suspension or termination of 

funding. Compliance reviews are an effective way to conduct systematic enforcement of the law 
70

without an individual complaint. Especially when victims of discrimination do not, or cannot, 

speak for themselves, compliance reviews help ensure that congressional intentions for civil 

rights laws are met (NCD 2003b). 

A good practice, in addition to complaint investigations and actions to resolve noncompliance, 

involves reviewing whether an agreement actually accomplishes a Section 504 goal on a caseby- case basis. Having the flexibility to work with a recipient to modify agreements and generate 

better outcomes for people is the goal. It emphasizes results over process (NCD 2003b). 

Data Collection and Reports. NCD asked FEMA and the CRCL to provide detailed information 

about their complaint processing and compliance review information, in general and with respect 

to Section 504 enforcement activities. 

The CRCL has a staff of 20, including five attorneys. Staff share complaint processing 

responsibilities, and there is no designated individual with the sole responsibility for handling 

disability issues. CRCL staff felt the timing of this report was too early; they could not provide 

some of the information requested because the CRCL is still in the initial phases of developing 

initiatives and priorities. 

For fiscal year 2004, the CRCL logged 60 complaints (not limited to Section 504). The CRCL 

has 180 days to resolve a complaint. The number of complaints resolved was not available. The 

CRCL reports that, given its newness, it has not developed information systems that 

comprehensively collect, aggregate, or summarize detailed information about complaints or 

compliance reviews and their outcomes. 

EP&R/FEMA also has no designated individual with the sole responsibility for handling 

disability issues. Many of the equal rights officers have partial responsibility for this activity. In 

fiscal year 2003, 1 out of 85 complaints was disability related, and in fiscal year 2004, 18 out of 

288 were disability-related issues. 

EP&R/FEMA does not collect and analyze Section 504 and ADA program data (complaints or 

compliance reviews and their outcomes) for progress made, deficiencies, best practices, or 
71

areas where DHS could provide coordination or technical assistance. It has been more than 10 

years since EP&R/FEMA has issued guidance for state and local emergency planning 

departments reinforcing their legal obligation to comply with Section 504 in planning for, 

operating, and managing shelters and other disaster services. Guidance on ADA compliance 

has never been issued. 

The CRCL and EP&R/FEMA do not get many formal complaints on discrimination related to 

people with disabilities and activity limitations. On first examination, there seems to be a 

dramatic disconnect between the experience of people with disabilities and activity limitations in 

disasters and the number of civil rights complaints received by DHS. There are probably 

multiple reasons for the low number of complaints, which may include the following: 

• After a disaster many people are overwhelmed with dealing with their immediate survival 

needs and losses. Filing complaints can be a low priority. 

• Complaints may be filed with the states as well as nonfederal partners. 

• Many of the barriers experienced by people with disabilities are the result of activities 

conducted by states and local government and other partners. This underscores the critical 

importance of DHS reminding and reinforcing all of its partners, grantees, and contractors of 

their legal obligation to comply with ADA and Section 504 and 508 of the Rehabilitation Act 

in planning for, operating, and managing shelters and other disaster services. It also 

reinforces the importance of DHS regularly issuing guidance for state and local emergency 

planning departments to reinforce their legal obligation to comply with these laws. 

• Many people with disabilities do not know how to make a complaint or where it should be 

directed for resolution. 

Information systems that comprehensively collect, aggregate, or summarize detailed information 

about complaints or compliance reviews and their outcomes are critical to the public and to 

consumers and recipients of service. Among the kinds of information that should be readily 

available are the numbers of complaints and compliance reviews initiated, completed, and 

remaining for every fiscal year. Additionally, data routinely compiled should include the length 
72

of investigations and reviews, the issues or claims reviewed and findings on each, detailed 

information about findings of compliance and noncompliance made, and similarly detailed 

information about the ways complaints and compliance reviews are resolved (NCD 2003b).

This data is important in assessing trends and themes in Section 504 and ADA issues, identifying 

the workload and the outcomes of cases, and assessing the quality and quantity of work done. 

The information is important for internal management purposes, but it is also critically important 

to consumers, advocates, and recipients, who rightfully expect to be informed about the types of 

enforcement activities being conducted and their outcomes (NCD 2003b). 

People with disabilities want to read data easily about agencies’ compliance with Section 504 

and ADA. Such data includes complaint filings and compliance reviews initiated, specific 

Section 504 issues and trends in complaint and compliance reviews, and outcomes and 

enforcement actions. Routinely reporting Section 504 activities on the Web sites would allow 

DHS to publicize Section 504 and ADA accomplishments (NCD 2003b). 

Section 508. DHS has committed to comply with the requirements of Section 508 of the 

Rehabilitation Act. Section 508 requires that individuals with disabilities who are members of 

the public seeking information or services from DHS have access to and use of information and 

data that is comparable to that provided to the public who are not individuals with disabilities, 

unless an undue burden would be imposed on DHS. 

Section 508 also requires DHS to ensure that federal employees with disabilities have access to 

and use of information and data that is comparable to the access to and use of information and 

data by federal employees who are not individuals with disabilities, unless an undue burden 

would be imposed on DHS. 

Web Site Access. It is DHS policy that No. 6-03, 9/2/04 reads as follows: 

The Department of Homeland Security (DHS), Emergency Preparedness and Response 

(EP&R), Federal Emergency Management Agency (FEMA) is committed to serving all 

individuals equally and therefore considers accessibility to information a priority for all 

employees and external customers, including individuals with disabilities. Federal employees 
73

and members of the public who have disabilities must have access to and use of information 

and services that are comparable to the access and use available to nondisabled federal 

employees and members of the public. It is directorate policy to prohibit discrimination in 

the accessibility of electronic and information technology (DHS 2004c).

PDF Documents. DHS’s Web site states: 

Section 508 also requires us to ensure that federal employees with disabilities have access to 

and use of information and data that is comparable to the access to and use of information 

and data by Federal employees who are not individuals with disabilities, unless an undue 

burden would be imposed on us. If the format of any material on our Web site interferes with 

your ability to access the information, due to an issue with accessibility caused by a 

disability as defined in the Rehabilitation Act, please contact webmaster@dhs.gov for 

assistance. To enable us to respond in a manner most helpful to you, please indicate the 

nature of your accessibility problem, the preferred format in which to receive the material, 

the Web address (URL) of the material with which you are having difficulty, and your 

contact information (http://www.dhs.gov). 

FEMA’s Web site states: 

Some of the files are provided in Adobe Acrobat Portable Document Format. All PDF 

documents on the FEMA Web site are characterized by the following or similar graphic icon 

(). This icon is usually placed next to the document link. Download Adobe Acrobat Reader. 

If you have accessibility problems viewing any PDF document on these pages, go to Adobe’s 

Online Converter to obtain the document in text format. 

If you have accessibility problems viewing any PDF document on these pages, go to 

http://access.adobe.com/simple_form.html and use the online conversion tools to obtain the 

document in text format. Once you download the files you want into the desired directory, 

open the Acrobat Reader program and then open the files you want to view or print. 

Download directions are also available with each course. It is recommended that the user 

download the course material files and view them off-line at their convenience, saving time 

and money for Internet connection charges. 

If you have a disability and the format of any material interferes with your ability to access 

information contained on our Web site, please e-mail the FEMA/U.S. Fire Administration 

webmaster at usfaweb@dhs.gov. The webmaster will refer your request to the appropriate 

USFA component. The component will respond promptly to you by providing you with an 

alternate format of the requested material. 

To enable us to respond in a manner that will be of most help to you, please indicate (FEMA 

2004a): 
74

• the nature of the accessibility problem, 

• your preferred format (e.g., electronic format (Word, ASCII, etc.), standard print, 

large print, etc.), 

• the Web address of the requested material, and 

• your full contact information so we can reach you if questions arise while fulfilling 

your request.

The American Red Cross (one of EP&R/FEMA’s private sector agencies serving as a major 

player in assisting the public in preparing for, responding to, and recovering from a disaster) 

Web site, in addition to PDF, provides most of its preparedness documents in hypertext markup 

language (HTML). 

Section 508 Requirements. Section 508 requires that federal Web pages containing a PDF file 

include a link to a plug-in that complies with the software requirements of Section 508. In 

addition, it requires provision of a text equivalent for every nontext element. Many agencies use 

PDF files to post documents to their Web site because they create an exact representation of the 

original document. To view a PDF file, a user must use a browser plug-in. 

DHS has two options when addressing PDF content. First, it can ensure that its PDF file is 

accessible and include a link to a PDF reader that conforms to the software requirements of 

Section 508. Or, if such a plug in is unavailable, the agency can provide a link to a duplicate file 

that contains the same information in an accessible format (Section 508 2002). 

Adobe has made efforts to make PDF files more accessible, but many people continue to have 

serious difficulties accessing public information that is made available only in PDF. The many 

problems associated with accessing PDF documents constitute a burden on people with visual 

impairments that is significantly greater than the burden placed on individuals without 

disabilities with regard to PDF files (Sajka and Roeder 2003). 

Accessible authoring is not enforced by all available authoring tools. “In fact,” say Sajka and 

Roeder (2003), “some PDF authoring tools simply do not support Adobe’s accessibility guidelines. 

Without a massive effort to upgrade these tools and educate authors on how to use them, or a 
75

systematic approach to prevent the use of these tools to create documents intended for public 

access, the government will continue to produce thousands of pages of inaccessible documents.” 

The American Foundation for the Blind, the American Council of the Blind, National Industries 

for the Blind, and other groups in the blind community say that “problems of access by people 

who are blind or otherwise print disabled and the mandates of Section 508 lead to the conclusion 

that documents in alternative, accessible formats must always accompany PDF for information 

that is intended for the public” (Sajka and Roeder 2003). 

Grant programs 

The DHS Secretary is responsible for administering grant programs for state and local first 

responders, including firefighters, emergency medical personnel, law enforcement officials, and 

related personnel. DHS functions as a clearinghouse that assists state and local responders with 

planning, training, equipment, and exercise needs necessary to respond to disasters. FEMA fully 

or partially funds the emergency management programs and staff in all 56 states and territories 

and helps design and equip emergency operations in thousands of localities. 

ODP is the principal component of DHS with responsibility for preparing the United States for 

acts of terrorism. In carrying out its mission, ODP is the primary office responsible for providing 

training, funds for the purchase of equipment, support for the planning and execution of 

exercises, technical assistance, and other support to assist states and local jurisdictions in 

preventing, planning for, and responding to acts of terrorism. 

Integrating Disability and Access Issues. NCD found little evidence of DHS’s grants program 

encouraging potential grantees to integrate disability and access issues except for an April 2004 

ODP announcement for a fiscal year 2004 competitive training grants program. One of six issue 

areas was titled “Addressing Training Gaps Related to Prevention and Preparedness, to Include 

Assistance for Special Needs Populations.” 
76

Procurement. The creation and enforcement of procurement policies and procedures that are 

similar to, but that go beyond, Section 508 of the Rehabilitation Act can help to increase access 

to products and services. 

DHS’s procurement policies on acquiring and using accessible products and services should be 

integrated and enforced internally and through all contracts and funded projects. 

DHS should ensure that, wherever possible, purchasing specifications reflect the most 

universally designed products that are accessible and usable by the greatest number of 

people, regardless of their capabilities. The concept helps people use products and negotiate 

environments they otherwise would find inaccessible or difficult to manage. For example, a 

group of architects, product designers, engineers, and environmental design researchers 

collaborated to establish the Principles of Universal Design to guide a wide range of design 

disciplines including environments, products, and communications. These seven principles 

can be applied to products. Consider adopting Principles of Universal Design as a best 

practice (Center for Universal Design 1997). 

Geographic Information System. During emergencies, it is critical to have the right data, at the 

right time, displayed logically, in order to respond and take appropriate action. Most of the 

data requirements for emergency management are of a spatial nature and can be located on a 

map (Johnson 2000). Ensure that any surveillance systems used to assess risk include people 

with disabilities. 

Emergency planners and others must also take into account the needs of people with disabilities 

who travel and may be in their community at the time of an emergency. For example, one 

individual reported: 

In 2002 I was in a Santa Rosa, California, hotel room when I saw a graphic on an 

uncaptioned TV news program that warned of high winds. I didn’t know if the winds were so 

dangerous that I should take action to protect myself. In 2003 I was at a conference in Las 

Vegas and uncaptioned TV news talked of the wildfires raging in California but I didn’t 

know how close they were. I also didn’t know that the smoke was being carried on the wind 

and that the air quality could be unsafe. In 2004 I was in Omaha at a conference when yet 

another uncaptioned TV news program was interrupted with a graphic warning of tornado 

activity and a picture of a Doppler map showing only names of counties. It was my first time 

in Omaha and I had no idea which county my hotel was located in (Heppner 2005). 
77

Proposal Selection Criteria. Current DHS proposal selection criteria lack disability-specific 

indicators for evaluating proposals. Where appropriate to the grant focus, these indicators should 

specifically detail and show evidence of how applicants will achieve the following: 

• Deal with the communications, evacuation, transportation, physical access, and health needs 

of people with disabilities. 

• Form partnerships among first responders, emergency planners, and people with disabilities 

to ensure that accurate training information and usable services are developed. 

• Increase communication and cooperation with the disability community. 

• Appoint qualified people with disabilities to emergency planning committees, and as 

advisors, trainers, contractors, and consultants and project staff. 

• Educate people with disabilities and activity limitations about what they can do to be 

prepared for any type of emergency. 

• Assist localities in reviewing and, where needed, creating disability-specific policies and 

regulations. 

• Integrate new and updated disability-specific training content into training and preparedness 

materials. 

• Follow policies on procuring and buying accessible products and services. 

• Work with CBOs. 

Current disability-specific initiatives 

DHS has taken some important first steps in its disability-specific plan. The CRCL provides 

legal and policy advice to DHS related to the myriad civil rights and civil liberties issues that the 

Department will encounter (DHS 2004a). 

CRCL has identified a number of objectives that reflect a commitment to making DHS a model 

workplace for people with disabilities, including the following: 
78

• Providing paid internships for students with disabilities to gain experience and build new skills. 

• Integrating people with disabilities into emergency preparedness and planning. 

• Working with private organizations that have increased knowledge and information about the 

important issues facing people with disabilities. 

• Communicating with people with disabilities about homeland security. 

• Ensuring that DHS has an efficient Section 508 program (DHS 2004b). 

Federal Communications Commission 

Current FCC rules 

FCC rules state that to accommodate people who are deaf or hard of hearing, emergency 

information that is provided in the audio portion of the programming must be provided using 

closed captioning or other methods of visual presentation such as open captioning, crawls, or 

scrolls that appear on the screen. Emergency information provided by these means should not 

block any closed captioning, and closed captioning should not block any emergency information 

provided by crawls, scrolls, or other visual means. This rule on access to emergency information 

for people with hearing disabilities became effective on August 29, 2000 (Federal 

Communications Commission [FCC] 2004). 

The same information must also be provided in a manner that is accessible to persons who are 

blind or have low vision. Specifically, emergency information that is provided in the video 

portion of a regularly scheduled newscast or a newscast that interrupts regular programming 

must be made accessible to these people. This requires the oral description of emergency 

information in the main audio, such as open video description. If the emergency information is 

being provided in the video portion of programming that is not a regularly scheduled newscast or 

a newscast that interrupts regular programming (e.g., the programmer provides the emergency 

information through crawling or scrolling during regular programming), this information must be 

accompanied by an aural tone. This tone is to alert people with vision disabilities that the video 

programming distributor is providing emergency information, and to alert those persons to tune 
79

to another source, such as a radio, for more information. This rule on access to emergency 

information for people with vision disabilities became effective February 2, 2001 (FCC 2004). 

The FCC has reminded broadcasters of these rules and their obligations to comply on four occasions, 

the last being on May 28, 2004. In spite of these reminders, widespread problems continue. 

Clear communication is the cornerstone of all successful planning and response. Access to 

emergency public warnings, as well as to preparedness and mitigation information and materials, 

must include people who receive their information orally and visually, and people who use 

alternative formats (e.g., Braille, large print, disks, and audio cassettes) to access print materials. 

There must be a national policy of public warning that includes communication access.

The FCC, in coordination with DHS, held a Homeland Security Summit on March 25, 2004, 

aimed at addressing emergency communications issues uniquely faced by the disability 

community. In addition to the ongoing interagency relationships, the FCC is exploring other 

communications issues related to the specific needs of the disability community that would lend 

themselves to other partnerships with DHS. 

Access policy issues 

Many broadcasters and public emergency management agencies are not aware of their legal 

responsibilities to modify their information procedures. The following are some examples: 

Captioning 

• Line 21 on television screens is reserved for closed captioning. Captions are not visible 

unless activated by the viewer. The FCC oversees the Telecommunications Act of 1996 

regulations that phase in closed captioning of TV programs by 2006. These regulations, 

however, do not require 100 percent captioning of all programs, including news programs. 

Programs shown between 2:00 a.m. and 6:00 a.m. local time are exempt. Only news 

programs by the four major broadcast network affiliates in the top 25 TV markets and cable 
80

networks serving at least 50 percent of the total number of households subscribing to the 

program are required to have real-time captioning (Heppner et al. 2004). 

• Emergency Alerting System captions use a different format. Individual television stations 

and networks have increased use of scrolling text and captions. In spite of FCC requirements 

that these forms of captioning not interfere with Line 21 captioning, reports by individuals 

who are deaf and hard of hearing confirm that they do. One reported that on 9/11, 

“Captioning began to disappear....All I could see was pictures of terror....My local and cable 

news had their closed captions blocking the local feeder” (Heppner et al. 2004). 

• It is increasingly difficult for people to determine which information is the most recent and 

most important when several forms of captions and text appear on the screen (Heppner et al. 

2004). 

Description of Visual Information. The FCC oversees regulations requiring “visual presentation” 

of emergency information. These regulations do not specify that information must be verbatim or 

provided in real time. These requirements, written in pre-9/11 days, are intended to provide all 

crucial information in an emergency, but there are widespread reports from across the United 

States that emergency information is not being provided and, when it is provided, crucial 

information is omitted (Heppner et al. 2004). 

Users report that the FCC regulation on description of visual information is not being enforced. 

This affects many people, but it has a much greater detrimental effect on people with no or 

limited vision or ability to read. These are two examples. 

• Emergency text information including phone numbers is often not read (“call the number on 

your screen”). Logic suggests that people could switch to radios for this information. This 

may not work in some rural communities when radios run automated broadcasts in the 

evenings and weekends. In addition, some rural communities only have statewide 

information, and not local information, available. 

• Consistent, unique, specific tones, music, and voice tags such as “this is a special report” do 

not always precede emergency information. 
81

FCC’s Complaint Processing. The FCC reports that it is continually in the process of updating 

all of its rules. Therefore, the commission will continue to monitor compliance with its rules on 

the provision of emergency information and, if necessary, initiate a rulemaking procedure to 

amend the rules. 

The FCC Web site is clear about how to file a complaint, but it does not say how long it takes to 

process a complaint. Complaint procedures are found by typing in “complaint” in the search engine 

or by choosing the “for consumers” icon, which links to an electronic complaint filing form. 

The FCC’s rules currently require that accessible information be made available to members of the 

disability community in times of emergency. Section 79.2 of the FCC’s rules requires that 

emergency information be provided in an accessible format. That section further requires that all 

critical details must be made accessible. Critical details include specific details on the areas that 

will be affected by the emergency, evacuation orders, detailed descriptions of areas to be 

evacuated, specific evacuation routes, approved shelters or the way to take shelter in one’s home, 

instructions on how to secure personal property, road closures, and how to obtain relief assistance. 

The FCC reports that it occasionally receives informal complaints from a consumer about blocking 

of closed captioning by emergency information crawls or scrolls or other on-screen information. 

Section 79.2 of the FCC’s rules states that video programming distributors must ensure that 

emergency information does not block any closed captioning and that any closed captioning not 

block any emergency information provided by means other than closed captioning. Through a 

series of public notices, the FCC has diligently reminded broadcasters and multichannel video 

program distributors of their obligation to provide captioning for emergency information. 

The FCC believes that its complaint process is effective. Under Section 79.1 of the FCC’s rules, 

when consumers make informal allegations about a lack of closed captioning in video 

programming, the Consumer Inquiries and Complaints Division of the Consumer and 

Governmental Affairs Bureau contacts the broadcaster, cable, or satellite company directly, on 

behalf of the consumer, for the purpose of resolving the closed captioning concern. In addition, 

the FCC’s enforcement bureau reviews these informal complaints to determine whether any 
82

additional action is required. Consumers always receive a response from the FCC, and every 

complaint is taken seriously. If the enforcement bureau finds that a party is in violation of the 

captioning rules, the FCC may revoke the party’s license, impose forfeitures, and, in the case of 

“flagrant” rule violations, require captioning in excess of the current hourly requirement. 

The FCC welcomes specific comments and suggestions as to how to improve its processing of 

consumer complaints. Currently, FCC staff meet with members of the disability community on a 

regular basis to discuss issues affecting people with disabilities. In addition, the FCC receives 

consistent feedback on its complaint process through the Consumer Advisory Committee, a Federal 

Advisory Committee charged with providing recommendations to the FCC on consumer issues. 

Some consumers do not believe, as the FCC does, that the complaint process is effective. They 

raise the following four kinds arguments: (1) public information provided to consumers by the 

FCC about their rights and the complaint process is not always clear; (2) complaints are not 

being passed on within the FCC and consumers have not been kept informed of the status of their 

complaints; (3) action on the complaints is slow when speed is required because of their 

emergency nature; and (4) despite numerous complaints submitted––many of them well 

documented and involving repeat offenders––the FCC has yet to fine a single broadcaster. 

Overall, according to these individuals, the message to consumers is that their complaints are not 

taken seriously and that their lives are not important. Furthermore, some consumers report that 

there is no education or enforcement regarding the need to have closed captions activated on 

TVs in public places. When there is an emergency, sometimes no one knows how to activate the 

captions on these public TVs, the remote control may be missing, and there may be several steps 

involved to activate the decoder. In addition, some people may be new to hearing loss or may 

have temporary hearing loss and not know about closed captions (Heppner 2005). 

Digital Television Closed Captioning. In July 2000, the FCC adopted technical standards for 

display of closed captioning on digital television (DTV) receivers. The order incorporated sections 

of industry standard EIA-708-B, “Digital Television (DTV) Closed Captioning,” into the FCC 

rules. The standard provides instructions for the encoding, delivery, and display of closed 

captioning information for DTV systems, with a July 1, 2002, effective date. Devices covered 
83

under the rules include DTV sets with integrated “widescreen” displays measuring at least 7.8 

inches vertically, DTV sets with conventional displays measuring at least 13 inches vertically, and 

standalone DTV tuners, whether or not they are marketed with display screens. As a result, viewers 

can choose and alter the color, size, and font of their captioning and choose between multiple 

streams of captioning, such as “easy reader” or alternate language captioning. The rules require that 

cable providers and other multichannel video programming distributors transmit captions in a 

format that will be understandable to the decoder circuitry in DTV receivers. 

On August 4, 2004, the FCC adopted a report and order clarifying its digital closed captioning 

rules to ensure that those services are consistently and effectively delivered. This should allow 

caption users to reap the benefits of new digital technologies enabling caption viewers to 

customize their caption displays––location, size, font, color, and so on. 

Broadcasters’ Interpretation of “Emergency”. Stations across the country interpret regulations 

requiring the captioning of emergency information to apply too narrowly to situations dealing 

with adverse weather conditions. As a result, key information such as airport closings and new 

security requirements, tightened security on major transportation routes, suspected anthrax 

exposure, sniper attacks, and other important news is not captioned (Heppner 2004, Heppner et 

al. 2004). 

In April 2004, the FCC sent letters to several local television stations in the Washington, D.C., area 

about the failure of these stations to caption reports on the sniper shootings in the Washington area 

in 2002. In the letters, the FCC clarified that those sniper shootings did constitute an emergency 

event during which “emergency information” might have been broadcast. 

The FCC interprets the “emergency information” language broadly enough to include events other 

than just weather-related emergencies. Emergency information is information about a current 

emergency that is intended to further the protection of life, health, safety, or property. Examples of 

the types of emergencies about which emergency information might be broadcast are tornadoes, 

hurricanes, floods, tidal waves, earthquakes, icing conditions, heavy snows, widespread fires, 

discharge of toxic gases, widespread power failures, industrial explosions, civil disorders, school 
84

closings and changes in school bus schedules resulting from such conditions, and warnings and 

watches of impending changes in weather. This list of emergencies is not intended to be 

exhaustive. The rule may also apply to terrorism-related events and other similar instances. 

In addition, through a series of public notices, the FCC has diligently reminded broadcasters and 

multichannel video program distributors of their obligation to provide captioning for emergency 

information. The FCC is continually updating all of its rules. Therefore it will continue to 

monitor compliance with its rules on the provision of emergency information and, if necessary, 

initiate a rulemaking to amend the rules. 

Telecommunications Relay Services. Telecommunications relay services (TRS) enable callers 

with hearing and speech disabilities who use TTYs and other technologies, and callers who use 

voice telephones, to communicate with each other through a third-party communications 

assistant. On 9/11, TRS providers were unprepared for the volume of calls that were made, 

resulting in the breakdown of TRS communications in several states. It appears that none of the 

nation’s TRS providers had clear procedures in place to inform communities about the disruption 

in relay services (such as 72 hours of power backup, plans that clearly identify essential staff 

during emergencies, use of and access to a reliable national database allowing the service to 

connect users with appropriate public safety answering points (PSAPS–911 Centers) in an 

emergency, and contingency plans for transferring calls from centers unable to operate because 

of overwhelming volume or damage) (Heppner et al. 2004). 

PSAPS–911 Centers are not keeping up with advances in accessible telecommunications and 

thus may not be prepared to handle voice carry over (VCO), IP-relay (Internet protocol), VRS 

(video relay service), CapTel (captioned telephones), and other calls from individuals who are 

deaf and hard of hearing. CapTel works like other telephones but with one important distinction: 

users can read a captioned version of their conversations on the text screen of their phone. This is 

possible through voice-recognition technology, which the operator at the captioning service 

center uses to transcribe everything the other party says into written text. Captions appear almost 

simultaneously with the spoken word, allowing users access to what is said, either by hearing it 

or by reading. 
85

In a TRS rulemaking initiated in June 2003, the FCC sought comment on whether TRS facilities 

should be part of the telecommunications service priority (TSP) program, which was created in 

1988 as the regulatory framework to guide telecommunications carriers in repairing or providing 

new telecommunications services in the event of a disaster. The program was established to help 

reduce the potential chaos after a disaster when carriers may be overwhelmed with requests for 

repairs or new services. In accordance with the TSP rules, priorities are set for 

telecommunications services so that the carriers can determine which services to repair first. A 

service designated under the TSP program guarantees the of restoration of existing circuits or 

provision of new circuits before service is restored to non-TSP services. The TSP program is a 

voluntary program. As a general matter, “service users” may make a request that particular 

telecommunications services they rely on receive a priority assignment. These requests are 

directed to the office of priority telecommunications of DHS’s national communications system. 

In a report and order (FCC 04-137) adopted June 10, 2004, the FCC encouraged TRS facilities to 

enroll all qualifying services in the TSP program, and agreed to sponsor such applications. The 

FCC believes that all appropriate steps should be taken to ensure that service to TRS facilities is 

made available in times of emergency, and that restoration of service to TRS facilities should 

occur, to the extent feasible, in tandem with restoration of dial tone service to the general public, 

thus ensuring that individuals with hearing or speech disabilities have service available on the 

same basis as individuals without such disabilities. 

Emergency Use Televisions with Screens Smaller Than 13 Inches. Because of portability and 

energy requirements, most televisions selected for emergency use have screens smaller than 13 

inches. The Television Decoder Circuitry Act of 1990 requires that all TV broadcast receivers 

with screens 13 inches or larger manufactured or imported after July 1, 1993, have the capability 

to receive and display closed captions. 

The FCC’s rules track the statute’s 13-inches-or-greater requirement. For DTV sets, the 

requirement is as follows: All digital receivers with picture screens in the 4:3 aspect ratio 

measuring at least 13 inches diagonally, DTV receivers with picture screens in the 16:9 aspect 

ratio measuring 7.8 inches or larger vertically (this size corresponds to the vertical height of an 
86

analog receiver with a 13 inch diagonal), and all DTV tuners, shipped in interstate commerce or 

manufactured in the United States, must comply with the minimum decoder requirements 

adopted by the commission in the July 2000 report and order that addressed digital captioning 

requirements (FCC 2004). 

Emergency E-Mail and Wireless Network. This system lacks an emergency e-mail and wireless 

network (i.e., personal computers, pagers, cell phones, personal digital assistants, and test radios 

that caption the spoken word) that will inform people of local, regional, national, and 

international emergencies using the Internet and e-mail. Such a network could be effective if 

emergency agencies endorse and work with such a system. 

The FCC says it is not clear what role the commission has in facilitating the availability of email alerts. The FCC does not regulate the Internet. The FCC says it would be willing to review 

any concrete, written proposal about how emergency e-mail alerts fit under the FCC’s authority. 

Cell Phone Compatibility with Hearing Aids. Users of hearing aids and cochlear implants 

continue to experience compatibility and interference problems when using cell phones. On 

August 14, 2003, the FCC released a report and order that modified the exemption for wireless 

phones under the Hearing Aid Compatibility Act of 1988 to require that digital wireless phones 

be capable of being effectively used with hearing aids. The report and order requires digital 

phone manufacturers and service providers to take steps to reduce the amount of interference 

emitted from digital wireless phones and to provide the internal capability for telecoil coupling. 

On October 16, 2003, several interested parties filed petitions requesting that the commission 

reconsider and/or clarify various aspects of its decision. By public notice, the FCC’s wireless 

telecommunications bureau sought comment on the issues raised in the petitions.
87

Part V. Conclusions and Recommendations 

While the new DHS is still in its formative stages, the opportunity is ripe for drawing on people 

with disabilities and activity limitations so that they can contribute to, participate in, and benefit 

from emergency planning, mitigation, preparedness, response, and recovery activities and 

services. When access for people with disabilities is designed and planned from the beginning, 

there is little extra cost. Attention to access and disability-specific needs contributes to a higher 

quality response for everybody when emergencies occur. 

DHS leadership must continue to promote and model principles of nondiscrimination and 

inclusion by example in the behavior, speeches, meetings, planning, publications, and internal 

and external communications of its employees. These principles should include policy, practice, 

resources, research, and training––and viewing people with disabilities as contributors and 

collaborators, not just users. 

The Federal Government’s decisions, the priorities it accords to civil rights, and the methods it 

adopts to ensure uniformity in the ways agencies handle their disability-related responsibilities 

are being established now. These efforts will continue to require sustained communication, 

coordination, cooperation, and collaboration with other government departments and agencies 

and particularly with private sector organizations. If these procedures and policies are not set on 

the right course at the outset, they will be much more difficult to add later. 

Based on its research, NCD believes that the Federal Government needs to create and follow a 

clear roadmap that builds on its nascent homeland security, emergency preparedness, and 

disaster relief infrastructure as it relates to people with disabilities. Such a roadmap will need to 

rely on best practices in intergovernmental planning and communication. In addition, the Federal 

Government will benefit greatly from reviewing and adopting or adapting best practices of CBOs 

such as those described in this report. Finally, the Federal Government should consider the 

following key NCD recommendations in the development and implementation of its roadmap: 
88

• DHS should establish a Disability Access Advisory Group made up of qualified people with 

disabilities and others with disability-specific disaster experience who meet regularly with 

officials to discuss issues and challenges. 

• DHS’s EP&R should integrate information on people with disabilities and activity 

limitations into general preparedness materials, and it should inform readers of those 

materials of how to gain access to more customized materials. 

• DHS’s CRCL should regularly issue guidance for state and local emergency planning 

departments reinforcing their legal obligation to comply with ADA and Sections 504 and 508 

of the 1973 Rehabilitation Act in planning for, operating, and managing shelters and other 

disaster services.1

• DHS’s CRCL should proactively conduct compliance reviews to identify weaknesses and 

problems in complying with ADA and Sections 504 and 508 of the 1973 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, and that violations are acted on immediately. The FCC 

also should be proactive on Section 255 hearing aid compatibility. 

• DHS should develop and offer technical assistance and guidance materials for its grantees 

regarding their ADA and Section 504 legal obligations and compliance strategies. 

• DHS should conduct proactive reviews of grant recipients’ compliance or noncompliance 

with Section 504 and ADA. 

 

1 The Department of Homeland Security states that “The Department of Justice (DOJ) is already handling 

this. In addition to the numerous settlement agreements that are a part of Project Civic Access, the DOJ has issued a 

technical assistance document to the state and local governments with this legal interpretation.” See 

www.usdoj.gov/crt/ada/emergencyprep.htm (Dan Sutherland, e-mail communication of February 7, 2005). 
89

• DHS’s 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.2

• DHS should collect and analyze Section 504 and ADA program data (complaints or 

compliance reviews and their outcomes) for progress made, for deficiencies, for best 

practices, and for areas where DHS could provide coordination or technical assistance. 

• To ensure the widest possible usage, 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 expects this report to contribute to America’s commitment to build 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 and 

activity limitations. NCD acknowledges the good work that DHS has begun, as well as the work 

that the FCC has continued to engage in, and stands ready to assist in continuing this work so 

that the Federal Government can indeed serve and protect all. 

 

2

 “It would have been more accurate for the report to reflect, as we stated during the interview, that the data 

sought after by the [NCD] interviewers was not yet available because the office at that time was in existence for only 

a few months and, as we further pointed out, we were in the midst of instituting a case management system that 

allows CRCL to track the nature and progress of each complaint. Notably such a system has since been implemented 

and is now operational.” (Dan Sutherland, e-mail communication of February 7, 2005).
90
91

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Appendix 

Mission of the National Council on Disability 

Overview and purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 members 

appointed by the President of the United States and confirmed by the U.S. Senate. The purpose 

of NCD is to promote policies, programs, practices, and procedures that guarantee equal 

opportunity for all individuals with disabilities regardless of the nature or significance of the 

disability and to empower individuals with disabilities to achieve economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society. 

Specific duties 

The current statutory mandate of NCD includes the following: 

• Reviewing and evaluating, on a continuing basis, policies, programs, practices, and 

procedures concerning individuals with disabilities conducted or assisted by federal 

departments and agencies, including programs established or assisted under the 

Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities Assistance 

and Bill of Rights Act, as well as all statutes and regulations pertaining to federal programs 

that assist such individuals with disabilities, to assess the effectiveness of such policies, 

programs, practices, procedures, statutes, and regulations in meeting the needs of individuals 

with disabilities. 

• Reviewing and evaluating, on a continuing basis, new and emerging disability policy issues 

affecting individuals with disabilities in the Federal Government, at the state and local 

government levels, and in the private sector, including the need for and coordination of adult 

services, access to personal assistance services, school reform efforts and the impact of such 

efforts on individuals with disabilities, access to health care, and policies that act as 

disincentives for individuals to seek and retain employment. 

• Making recommendations to the President, Congress, the Secretary of Education, the director 

of the National Institute on Disability and Rehabilitation Research, and other officials of 

federal agencies about ways to better promote equal opportunity, economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society for Americans 

with disabilities. 

• Providing Congress, on a continuing basis, with advice, recommendations, legislative 

proposals, and any additional information that NCD or Congress deems appropriate. 

• Gathering information about the implementation, effectiveness, and impact of the Americans 

with Disabilities Act of 1990 (ADA) (42 U.S.C. § 12101 et seq.). 

• Advising the President, Congress, the commissioner of the Rehabilitation Services 

Administration, the assistant secretary for Special Education and Rehabilitative Services 
100

within the Department of Education, and the director of the National Institute on Disability 

and Rehabilitation Research on the development of the programs to be carried out under the 

Rehabilitation Act of 1973, as amended. 

• Providing advice to the commissioner of the Rehabilitation Services Administration with 

respect to the policies and conduct of the administration. 

• Making recommendations to the director of the National Institute on Disability and 

Rehabilitation Research on ways to improve research, service, administration, and the 

collection, dissemination, and implementation of research findings affecting people with 

disabilities. 

• Providing advice regarding priorities for the activities of the Interagency Disability 

Coordinating Council and reviewing the recommendations of this council for legislative 

and administrative changes to ensure that such recommendations are consistent with 

NCD’s purpose of promoting the full integration, independence, and productivity of 

individuals with disabilities. 

• Preparing and submitting to the President and Congress an annual report titled National 

Disability Policy: A Progress Report. 

International 

In 1995, NCD was designated by the Department of State to be the U.S. government’s official 

contact point for disability issues. Specifically, NCD interacts with the special rapporteur of the 

United Nations Commission for Social Development on disability matters. 

Consumers served and current activities 

Although many government agencies deal with issues and programs affecting people with 

disabilities, NCD is the only federal agency charged with addressing, analyzing, and making 

recommendations on issues of public policy that affect people with disabilities regardless of age, 

disability type, perceived employment potential, economic need, specific functional ability, 

veteran status, or other individual circumstance. NCD recognizes its unique opportunity to 

facilitate independent living, community integration, and employment opportunities for people 

with disabilities by ensuring an informed and coordinated approach to addressing the concerns of 

people with disabilities and eliminating barriers to their active participation in community and 

family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became ADA. NCD’s present list of key issues includes improving 

personal assistance services, promoting health care reform, including students with disabilities in 

high-quality programs in typical neighborhood schools, promoting equal employment and 

community housing opportunities, monitoring the implementation of ADA, improving assistive 

technology, and ensuring that people with disabilities who are members of diverse cultures fully 

participate in society. 
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Statutory history 

NCD was established in 1978 as an advisory board within the Department of Education (P.L. 95-

602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into an 

independent agency. 
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: Including People with Disabilities in Emergency Planning 

National Council on Disability • April 15, 2005