Chapter 1: Overview and Defining Special Needs
Note: Annex 1 of the primer includes a glossary of key terms. Glossary terms are shown in bold when they first appear in the text and are listed in a box at the start of each chapter in which they first appear.
Used in this Chapter:
Americans with Disabilities Act (ADA)
Congregate and Residential Care Facilities (CRCFs)
Durable Medical Equipment (DME)
Emergency Management Agencies (EMAs)
National Response Framework (NRF)
Non-governmental Organization (NGO)
Pandemic and All-Hazards Preparedness Act (PAHPA)
People with Medical Conditions
People with No Access to a Vehicle
Persons with Disabilities
Special Needs Populations
This chapter provides an overview of the primer and its purpose, as well as highlights the challenges in defining populations with special needs. It is important for each community to determine how to define its special needs and how to best plan for and address those needs. The remaining chapters of the primer provide specifics on relevant legislation, details to support planning for each phase of evacuation, and additional resources for further information on these topics.
Purpose of the Primer
Local and state authorities conduct and serve as the decision makers for evacuation operations. This primer, Evacuating Populations with Special Needs , provides local and state emergency managers, government officials, transportation agencies, and other organizations involved in disaster response with best practices and tools to accommodate people with special needs in an evacuation. Specifically, this document should aid in developing an evacuation plan that includes the coordination of transportation resources to meet the requirements of people with special needs.
The US Department of Transportation’s (DOT’s) Federal Highway Administration (FHWA) has developed the Routes to Effective Evacuation Planning Primer Series  to address various aspects of emergency transportation and evacuation. This primer focuses on special needs populations who require assistance during a local or multi-jurisdictional emergency evacuation. T he primer series, as a whole, captures and catalogues transportation management and operations advancements that can improve evacuation planning and operations. As experience in conducting evacuations increases and the concept of disaster support evolves, these primers may undergo adjustment based on new information, findings, lessons learned, best practices, and tools that local jurisdictions and states use and share.
In disaster management, special needs issues are considered a “human” issue. As a result, relevant initiatives have largely been assigned to disaster human services in terms of planning, education and outreach, response, and recovery. However, in recent years, the full integration and incorporation of special needs issues in emergency management is becoming both accepted and implemented on the local, state, and federal levels.
A Kaiser Family Foundation survey found that 40 percent of Hurricane Katrina victims who did not evacuate were either physically unable to leave or were caring for a person with a disability.
In 2005, the Kaiser Family Foundation, Harvard School of Public Health, and The Washington Post  conducted interviews of displaced Hurricane Katrina evacuees then living in Houston and found:
- Over 40 percent of those who did not evacuate were either physically unable to leave or were caring for a person with a disability
- 34 percent of Katrina victims were trapped in their homes
- 50 percent of those who were trapped waited 3 or more days to be rescued.
People with disabilities comprised 25 to 30 percent of those impacted by Hurricane Katrina.
According to the Consortium for Citizens with Disabilities' Emergency Management Task Force in 2006, “The experiences of [2005’s] hurricanes were a wake-up call to everyone, and the disability community was particularly affected by the shortcomings of the various systems that did not serve them well. People with disabilities comprised 25 to 30 percent of those impacted by Hurricanes Katrina and Rita.” The need for best practices and better integration of special needs issues during emergency evacuations is self-evident.
Transportation for Evacuating Special Needs Populations
Coordination is Key
Evacuating a person with dementia who is homebound and bedridden requires several resources, possibly a paramedic, caretaker, ambulance, oxygen support, and a facility ready to receive the patient. Key partners coordinate such a movement-emergency medical services, family, a DME company, nursing home facilities, home health aides, a dispatcher, those keeping a registry for those with special needs, and, of course, the transportation provider.
Transportation during emergencies is critical to evacuating people who either have specific mobility issues or do not have access to transportation. Evacuation for populations with special needs  must be carefully planned for in advance to ensure maximum safety. This primer addresses key issues that state and local governments will face. Moreover, it provides recommendations to ensure that individuals with special needs are evacuated rapidly and efficiently to save and protect their lives and that resources are used efficiently and to their fullest capacity. During medium to large evacuations, every transportation system will be overwhelmed, especially when evacuating special needs populations. The decision to evacuate special needs populations must be thoughtfully considered because the risks to the individual, particularly the medically vulnerable, during an evacuation must be carefully weighed against the consequences potentially faced if the individual were to remain in place.
Evacuation orders result from a complex and difficult decision-making process that is aided by advance planning. In preparing the plans, local and state emergency management agencies (EMAs), along with any established special needs committee, planning groups, and those agencies (including transportation departments) supporting the evacuation, will consider:
- The full range of medical, physical, developmental, and sensory disabilities and special needs
- The potential harm or impact that the emergency or movement may cause
- The capacity to provide safe, alternate shelter for individuals after the evacuation including medicine, durable medical equipment (DME), and service animals after the evacuation
- The ability to move caregivers, who are essential to the care of special needs people.
- Without a disaster transportation plan for the medically vulnerable, these individuals could face tremendous risks during major disasters.
When a mass evacuation is ordered, key entities must coordinate transportation resources during the emergency evacuation. An emergency evacuation of special needs populations requires close coordination among the local and state EMAs, federal resources, private organizations including businesses and non-governmental organizations (NGOs), and transportation agencies. Conveyances used for an evacuation include automobiles, buses, trains, boats, and even airplanes and helicopters. Each community will have access to specific modes of transportation, and all transportation resources—public, private, and non-governmental—should be considered in evacuation planning and operations. This may include, for example, airport shuttle vans, buses from faith-based organizations, school buses, and paratransit vehicles. In addition, it will be critical to consider specific modes of transportation for people with physical disabilities and those with medical conditions. Prior identification of available transportation resources and commitments for use will be highly valuable during an emergency to avoid competition for resources. To do this, emergency managers must bring together first responders, transportation organizations, and others that can assist during evacuation.
Scope of the Primer
While the primary scope of the primers in the Routes to Effective Evacuations series focuses on transporting populations out of harm’s way, this primer addresses moving special needs populations. “Special needs” will be defined as:
- People with disabilities
- People with medical conditions
- Congregate and residential care facilities (CRCFs)
- People with no access to a vehicle
- Homeless populations
- Correctional facilities
- People with service animals and household pets.
FHWA recognizes that currently there is no universal definition of “special needs.” Therefore, this primer attempts to address the evacuation of those primary populations that may need transportation assistance. While this approach may omit some population groups, individual communities should add to the suggestions in this primer by assessing their population to identify people who will have specific transportation needs during an evacuation. Once identified, those individuals and their advocacy groups and private care facilities should be included in evacuation planning.
“Special Needs” Definitions
No singular definition of the term “special needs” exists, although the term is widely used within the disaster services and emergency management industry to address people with disabilities. However, the term “special needs” is currently under debate in the disability, healthcare, and emergency management communities. “Special needs” can be narrowly defined as a broad and overarching concept (see examples of definitions below). Currently, there is no federally mandated or suggested definition being provided to states and localities. In fact, federal agencies use different definitions in addressing special needs populations and their own missions. In August 2007, the Federal Emergency Management Agency (FEMA) issued a new reference guide titled A Reference Guide for Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing and Human Services, which outlines existing legal requirements and standards relating to access for people with disabilities.
Further, on August 15, 2008, FEMA issued the interim release of Comprehensive Preparedness Guide 301: Special Needs Populations (Version 1.0). In that document, FEMA has included the following language:
“The National Response Framework (NRF) definition for ‘special needs’ provides a function-based approach for planning and seeks to establish a flexible framework that addresses a broad set of common function-based needs irrespective of specific diagnosis, statuses, or labels (e.g., children, the elderly, transportation disadvantaged).  In other words, this function-based definition reflects capabilities of the individual, not the condition or label. Governments that choose to align their language to the NRF definition will improve intergovernmental communication during an incident. The definition of ‘special needs population’ as it appears in the NRF is as follows:
Populations whose members may have additional needs before, during, and after an incident in functional areas, including but not limited to:
- Maintaining independence
- Medical care.
Individuals in need of additional response assistance may include those who have disabilities, live in institutionalized settings, are elderly, are children, are from diverse cultures, have limited English proficiency or are non-English speaking, or are transportation disadvantaged.”
The NRF definition focuses on the following functional aspects:
- “Maintaining Independence—Individuals requiring support to be independent in daily activities may lose this support during the course of an emergency or a disaster. This support may include supplies (e.g., diapers, formula, catheters, and ostomy supplies), DME (e.g., wheelchairs, walkers, and scooters), and/or attendants or caregivers. Supplying needed support to these individuals will enable them to maintain their pre-disaster level of independence.
- Communication—Individuals who have limitations that interfere with the receipt of and response to information will need that information provided in methods they can understand and use. They may not be able to hear verbal announcements, see directional signs, or understand how to get assistance because of hearing, vision, speech, cognitive, and/or intellectual limitations, and/or limited English proficiency.
- Transportation—Individuals who cannot drive or who do not have a vehicle may require transportation support for successful evacuation. This support may include accessible vehicles (e.g., lift equipped or vehicles suitable for transporting individuals who use oxygen) or information about how and where to access mass transportation during an evacuation.
- Supervision—Before, during, and after an emergency, individuals may lose the support of caregivers, family, or friends or may be unable to cope in a new environment (particularly if they have dementia or psychiatric conditions such as schizophrenia or intense anxiety). If separated from their caregivers, young children may be unable to identify themselves and, when in danger, may lack the cognitive ability to assess the situation and react appropriately.
- Medical Care—Individuals who are not self-sufficient or who do not have adequate support from caregivers, family, or friends may need assistance with managing unstable, terminal, or contagious conditions that require observation and ongoing treatment; managing intravenous (IV) therapy, tube feeding, and vital signs; receiving dialysis, oxygen, and suction administration; managing wounds; and operating power-dependent equipment to sustain life. These individuals require the support of trained medical professionals.
The above examples illustrate function-based needs that may exist within the community.”
Despite efforts at the federal level to define what people constitute as those with special needs, jurisdictions and planning groups know the communities they serve and can identify those people who would need help during evacuations, who is caring for those people, and how the jurisdiction should aid those people during times of disaster. As jurisdictions undergo the planning process, including the metropolitan planning organization (MPO) process, and work with these populations and their advocates and caregivers, the universe may expand to include others in the community. It is important that local communities define what “special needs” is for their specific community and as appropriate to their population.
People with Disabilities
While the meaning of the term “special needs” depends on the community, there are some terms that have legal implications and must be considered for evacuation planning.  For example:
- Americans with Disabilities Act (ADA), 1990—According to the ADA, persons with disabilities are a protected class. An individual is defined as someone with a disability if they:
- Have a physical or mental impairment that substantially limits a major life activity
- Have a record of such an impairment, and/or
- Are regarded as having such an impairment.
- US Health and Human Services (HHS), Pandemic and All-Hazards Preparedness Act (PAHPA), 2006—According to the PAHPA, “the term ‘at-risk individuals’ means children, pregnant women, senior citizens and other individuals who have special needs in the event of a public health emergency, as determined by the Secretary.”
- Centers for Disease Control and Prevention (CDC), 2004—The CDC suggests that many health departments use a similar definition: “groups whose needs are not fully addressed by traditional service providers or who feel they cannot comfortably or safely access and use the standard resources offered in disaster preparedness, relief, and recovery. They include, but are not limited to, those who are physically or mentally disabled (blind, deaf, hard-of-hearing, cognitive disorders, mobility limitations), limited or non-English speaking, geographically or culturally isolated, medically or chemically dependent, homeless, frail/elderly, and children.”
When developing the parameters of the term “special needs” in your community, consider the following information:
- People with disabilities are an important and significant part of the overall population. According to the 2000 US census, there are close to 50 million people with disabilities, which is approximately 17 percent of the total population in the United States.  It is estimated that, of the 50 million who have identified themselves as having a disability, 28 percent are 65 years and over. According to the Federal Interagency Forum on Aging Related Statistics, in 2003, there were 36 million people 65 years and older in the United States.
- The ADA defines disability in specific terms. Some types of disabilities (includes age spectrum from pediatric to geriatric) are:
- Physical (e.g., severe arthritis, spinal cord injuries, people who use wheelchairs, people with Multiple Sclerosis)
- Sensory (e.g., people who are blind, deaf, hard of hearing)
- Cognitive (e.g., people with mental illness, learning disabilities, mental retardation/developmental disabilities).
- Some people with disabilities may have co-existing disabilities. Planners will recognize that some individuals have co-existing disabilities. For example, there may be a person in a wheelchair who is also mentally retarded/developmentally delayed (MRDD). During an evacuation, much like the dementia example cited before, many factors must be considered including level of understanding of emergency evacuation messages, appropriately moving the person in a wheelchair, and knowing where the person will be evacuated once moved. Several entities will most likely be involved, including caretakers/family members, home health aides, emergency medical services (EMS), ambulette services, and others.
- There is an overlap of aging and disability. There is a high correlation between aging issues and disability. According to the 2000 US census, there are over 14 million people over the age of 65 who also have one or more disabilities.
- Likewise, there are young people who have one or more disabilities.There are 5.2 million children between the ages of 5 and 20 with a disability in the United States, according to the 2000 US census.
The Transit Cooperative Research Program (TCRP) report, Public Transportation, Emergency Mobilization and Emergency Operations Guide , includes evacuation planning information for people with disabilities. This guide discusses how message warnings should be in various and alternate formats (e.g., Braille, large font, and verbal) as well as general guidelines on evacuating communities.
People with Medical Conditions 
Many people throughout the United States may have one or more existing medical conditions, some more severe than others. For the purposes of this primer, “people with medical conditions” will refer to individuals who have one or more medical diagnoses that may or may not interfere with activities of daily living, but who may need assistance during an emergency evacuation. This may include, but is not limited to, people with:
- Alzheimer’s and other forms of dementia
- Psychiatric disabilities such as schizophrenia, bipolar disorder, severe depression, severe anxiety borderline personality
- Heart conditions such as heart disease, congestive heart failure, stroke
- Multiple Sclerosis
- Cerebral Palsy
- Severe traumatic brain injuries
- Parkinson’s Disease
Examples of individuals with medical conditions who may need assistance during an evacuation may include some who have:
- A stable medical or psychiatric condition, but will need access to medications
- Oxygen or other specific medical needs
- Weight beyond the safety restrictions of general issue cots or requiring lifting equipment
- Difficulty in eating, dressing, bathing, and/or using the toilet
- Ambulatory challenges, requiring assistance with ambulation, mobility, position change, and transfer
- Periodic observation needs (e.g., glucose, vital signs, ostomy, urinary, catheter care)
- Periodic wound care assistance
- Full-time medical or pharmaceutical needs outside of hospitalization.
The American Association of Homes and Services for the Aging estimates that more than 1.4 million people live in nursing homes and 900,000 in assisted living residences in the United States. Of these, 150,000 individuals receive care and services at an adult day center, and 1.1 million seniors reside in some type of senior housing community.
CRCFs include nursing homes, assisted living centers, drug treatment centers, group homes, residential homes, foster homes, adult and childcare facilities, etc. Emergency management, transportation, and other coordinating agencies or entities (such as paratransit, ambulettes, and NGOs) should give specific consideration to planning for and evacuating CRCFs. It is important to keep in mind that while nursing homes are required to have evacuation and emergency plans in place, not all residential care facilities are under the same requirements. Regulating authorities and roles and responsibilities must be taken into consideration when evacuating CRCFs. 
CRCFs should have strong and comprehensive shelter-in-place and operational continuation plans in effect in addition to plans to safely evacuate patients and staff to an alternate facility during disasters. The ADA mandates that evacuation planning and operations take into account accessibility issues. In addition, Section 504 of the Rehabilitation Act states that “no otherwise qualified individual with a disability in the United States, as defined in section 7(20) shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.” This includes all government entities that conduct the planning for or participate in evacuation operations, particularly those that receive DOT funding.  Chapter 6 of this primer includes additional details about CRCFs.
People with No Access to a Vehicle
The US General Accounting Office’s 2006 report Preliminary Observations on the Evacuation of Vulnerable Populations due to Hurricanes and Other Disasters states:
“In preparing for and carrying out the evacuation of transportation-disadvantaged populations who are not in institutions during a disaster, states and localities face challenges in identifying these populations, determining their needs, and providing for and coordinating their transportation. Identifying these populations and determining their needs present challenges because their overall size, location, and composition can be difficult to determine in advance of an emergency.”
In this primer, “people with no access to a vehicle” sometimes called carless populations, refers to individuals and families in a community that do not have a personal vehicle and generally rely on public transportation on a daily basis. They may not have a vehicle for reasons including economic factors, geographic location (e.g., residents of urban areas may not own a vehicle), health conditions (e.g., those with physical disabilities, some of the very elderly), environmental conscientiousness, and those without a license. Regardless of why they do not have a vehicle, their needs must be incorporated into emergency evacuation plans and considered during emergency evacuations.
Transportation agencies must consider those dependent on public transportation as part of their planning responsibility. “People without vehicles”  (“transportation-disadvantaged”) is a broad category, which will need to be identified on the local level. This population may be concentrated in urban (e.g., high-rise apartments, public housing) and rural (e.g., migrant farm community, elders) areas.
Many urban and suburban environments have homeless populations within them. According to the National Coalition for the Homeless (NCH) in 2007, homelessness can be either permanent or temporary, with some families and individuals moving in and out of homelessness. The NCH estimates that there are some 3.5 million people in the United States who are homeless, but the NCH cautions that the number is realistically higher because of restraints on how to define and count homeless populations. These restraints include the transient nature of the homeless population, difficulty with data collection methodologies, and difficulty in locating people who are homeless as they often stay in cars or “make-shift” housing such as tents or boxes.
Although the movement of homeless populations during an emergency evacuation is not specifically addressed herein, they should be considered among those with limited access to transportation, and strategies for communicating pick-up points to the homeless should be considered. Some homeless populations have health conditions; others have limited English proficiency. They may reside in temporary shelters or eat at kitchens that serve the homeless. Pinellas County Florida’s plan, Homeless Hurricane Evacuation/Sheltering Plan (2006), illustrates some of the issues that must be addressed when evacuating homeless populations including, but not limited to:
- Communicating with a transient population who has very limited access to radio, television, or the Internet; who may not speak English; or who may have low levels of literacy
- Helping the homeless population access transportation during an emergency
- Appropriately managing people who are mentally ill and/or substance abusers and homeless
- Keeping homeless families together during an evacuation.
Correctional facilities manage the evacuation of their resident population in coordination with, but separately from, general community evacuations including special needs populations. The facility operators address issues such as security and detention for the safety of the incarcerated evacuees and protecting the public from potential escapees. Prisons are subject to the same hazards as the general public and, as such, significant facility-specific planning must be a part of evacuation considerations.
The National Institute of Corrections commissioned guidance for responding to a variety of prison emergencies, including transportation needs, titled A Guide to Preparing for and Responding to Prison Emergencies: Self-Audit Checklists, National Survey Results, Resource Materials, Case Studies.
Prisons are required by law to have their own transportation and evacuation plans. If the facility cannot provide appropriate transportation, requests for assistance should be directed to the relevant EMA, as with all resource requests. The EMA will coordinate with transportation agencies if needed. In such cases, transportation agencies may need to provide additional staff and vehicle resources. Normally, prisons will evacuate in advance of other populations and should never be transported with general populations. They are sheltered at like facilities as available—federal-to-federal, county-to-county, etc. However, there are county and state prisons that do provide (“rent out”) space to the federal prisons. These arrangements are generally not in the scope of emergency planners, except to coordinate with them to ensure they have plans in place and do not need additional assistance from the local government. (See Case Study #3 in Annex 5.)
Service Animals and Household Pets
A household pet is defined in FEMA’s October 27, 2007 Eligible Costs Related to Pet Evacuations and Sheltering (DAP9523.19) as a “domesticated animal, such as a dog, cat, bird, rabbit, rodent, or turtle that is traditionally kept in the home for pleasure rather than for commercial purposes, can travel in commercial carriers, and be housed in temporary facilities. Household pets do not include reptiles (except turtles), amphibians, fish, insects/arachnids, farm animals (including horses), and animals kept for racing purposes.”
For the purposes of this primer, animals will be discussed in two categories: (1) service animals and (2) household pets. The ADA defines service animals as “any guide dog, signal dog, or other animal individually trained to provide assistance to an individual with a disability, including but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair, or fetching dropped items.”  Service animals assist people with disabilities in various activities including sight (seeing-eye dogs) and hearing (hearing dogs). Often, a service animal enables a person with a disability to live independently. This is why it is critical that officials do not separate people with disabilities from their service animal during an evacuation. Household pets must not be confused with a service animal. Chapter 7 further discusses both service animals and household pets.
This chapter provides an overview of the primer and its purpose as well as highlights the challenges in defining populations with special needs. It is important for each community to determine how to define special needs for the community and how to best plan for and address those needs. The remaining chapters of the primer provide more specifics on relevant legislation, more detail to support each phase of evacuation, and additional resources for further information on these topics.
 The Washington Post, Kaiser Family Foundation, Harvard University Survey of Hurricane Katrina Evacuees (2005).
 It is important to acknowledge that “special needs” is a contentious term within the disability community, and there has been much debate on whether or not to change the term within the disaster field. Some people with disabilities find the term special needs to be disparaging. As this debate continues, and again, for the purposes of this primer, special needs will respectfully be used to define people with disabilities across the age spectrum.
 The concept of a function-based approach to defining special needs populations has been developed by June Isaacson Kailes. See Kailes, J. and Enders, A. in “Moving Beyond ‘Special Needs’ A Function-Based Framework for Emergency Management Planning,” Journal of Disability Policy Studies, Vol/No. 44/207, pp. 230-237.
 It is important to differentiate between agencies that have a definition of “special needs” populations such as HHS, the Department of Homeland Security (DHS), and the CDC, and that of the ADA definition. Since the ADA is law, the definition of “people with disabilities” means that they are a protected class and can use the ADA as statutory authority for enforcement and lawsuits. Other agencies can offer definitions of special needs as guidance or for the purposes of that specific agency’s planning benefit, but often are not enforced or regulated in the same way that the ADA law is regulated and enforced.
 Several disability organizations, such as the National Organization on Disability (NOD), place the number of people with disabilities higher; they estimate the number is 54 million with approximately 20 percent of the population affected by one or more disabilities (NOD, 2005).
 If a person with a medical condition becomes debilitated, limited, or otherwise impaired, he/she may be protected under the ADA.
 Cahalan and Renne, 2007
 Cahalan and Renne, 2007
 Communities throughout the country use different terminology regarding people who do not have access to their own vehicle. For example, the State of Florida refers to such populations as “transportation-disadvantaged.” The General Accounting Office, DOT, and FHWA use both “transportation-disadvantaged” and “people without cars.”