Moving Beyond Special Needs:
A Function-Based Framework for Emergency Management and Planning
June Isaacson Kailes, Center for Disability Issues and the Health Professions
Alexandra Enders, Research and Training Center on Disability in Rural Communities
Publication in Press - Journal of Disability Policy Studies – Spring 2007
Abstract
Disaster preparation and emergency response processes, procedures, and systems can be made more effective for people with disabilities, as well as for the population as a whole.  An essential element of building appropriate levels of capacity, specific planning, and response success is to move beyond use of the special needs category, which makes up more than 50% of the population. This paper provides disability demographics and describes special needs populations. It suggests development of a more accurate and flexible planning and response framework based on essential, sometimes overlapping, functional needs: communication, medical, maintaining functional independence, supervision, and transportation (C-MIST). It also suggests new approaches to functional support, leadership, service delivery and training.  

Moving Beyond Special Needs:
A Function-Based Framework for Emergency Management and Planning
The special needs population is often viewed as a homogeneous group. This practice, although understandable, is dangerous given this group's significant size. Lumping groups together and using an ambiguous special needs label translates into vague planning which results in response failures.  A major finding of the Nationwide Plan Review: Phase 2 Report (U.S. Department of Homeland Security, 2006) is that federal government should develop a consistent definition of the term special needs. 
	The U.S. experience in the 2005 hurricane season reinforces and underscores the necessity of disaggregating these diverse populations into more function-based groups which can be operationalized, and devising a more effective and operational framework which adequately addresses health, safety, and survival needs.  A function-based framework allows emergency managers to define, locate, reach and plan comprehensively for managing resources and supports for individuals' specific functional needs.  It helps avoid planning that relies on diagnostic labels and definitions of disability used primarily for programmatic eligibility and medical reimbursement.  Such categories are often not helpful in preparing for, responding to and recovering from an emergency.  
	Everyone has functional needs. Individuals from infancy to old age have a wide range of communication, cognitive, auditory, visual, and mobility abilities, as well as an array of physical and emotional capability. People whose functional needs are often labeled special needs include those who need assistance with communication, medical needs, maintaining functional independence, supervision, and transportation (C-MIST). This large, diverse group is too varied for the use of any single designation.
	Using special needs language, especially when it focuses on an individual's impairment or diagnosis, does not provide a framework for relating individual characteristics, strengths, and capabilities to the individual's functional support needs. Adequately addressing functional support needs has a far greater impact on how well individuals survive than does any specific diagnosis. Although everyone has functional needs, the consequences of not receiving C-MIST support for people who require it can be much more severe and much less forgiving. Some people do not have the same margin of resiliency, which is why this population is often labeled as vulnerable. 
	As currently structured, many of the people whose needs are arbitrarily labeled special needs may or may not be included in the regular course of planning, despite the fact that their needs are predictable.  Ensuring that there is a plan for operationalizing support for these predictable needs requires a framework based on function rather than specialness, as well as an understanding that the special needs population makes up at least half of the U.S. population. 
Who Are People with Special Needs?
	The term special needs is widely used within disaster services and the emergency management field.  It generally includes an extremely broad group of people, including people with disabilities, people with serious mental illness, minority groups, non-English speakers, children, and the elderly  (Centers for Disease Control and Prevention [CDC], 2004). Other lists also add single working parents, people without vehicles, people with special dietary needs (FEMA 2004), pregnant women, prisoners, people who are homeless, etc.   While there appears to be little consensus on exactly who should be included in the special needs category, these groups represent a large and complex variety of concerns and challenges for disaster planning and response.  Many of these groups have little in common beyond the fact that they are often left out of programs, services and emergency planning (Kailes, 2000; National Council on Disability [NCD], 2005). 
	We conducted a demographic analysis to estimate the size of the special needs category. For consistency, decennial Census 2000 data were used.  Almost half (49.99%) of the population (n = 141 million) comprised the most typical groups of special needs populations - people with disabilities, including serious mental illness; people who do not speak English or do not speak it well; children, age 15 and under; and people age 65 and over.  Table 1 shows the categories used, with age ranges for each.  Everyone age 15 and under, and age 65 and older, was included. Since people with disabilities were included in the age 15 and under, and age 65 and older categories, only the population aged 16-64 was included in the disability category.  This was necessary to avoid duplication when an individual, such as a 70-year-old with a disability, was in more than one category. Census data were not available for 16 and 17 year olds who do not speak English or do not speak English well, so this category only includes people aged 18-64. Those age 65 and over would already be included in the elderly category. 

Insert Table 1. Emergency Management Special Needs Groups: Percentage of the U.S. Population	

	In addition to the typical special needs group, including the entire institutionalized population, about 4 million people (Census 2000, Summary File 1, Table PCT16) brings the percentage of the population in the special needs category to 51.44% (144,755,840 people out of the entire U.S. population of 281,421,906 reported in Census 2000).  People live in institutionalized group quarters because there is a perceived ongoing need for medical care and/or supervision. The residents of nursing homes, "hospitals/wards, hospices, and schools for the handicapped", correctional institutions, state prisons, halfway houses, etc. have medical or supervision needs that will continue in an emergency. We did not include the almost quarter million individuals who live in group homes, because the 2000 Census counted them as living in noninstitutionalized group quarters, and included them in the tables for people with disabilities. 
	Minority groups are included in some lists of special needs populations. The United States continues to grow in racial and ethnic diversity. California, Hawaii, New Mexico, and Texas are majority-minority states, in which a majority of the population differs from the national majority population.  Arizona, Georgia, Maryland, Mississippi, and New York have minority populations of 40 percent (U.S. Census Bureau, 2005). The 2000 Census reports over 70 million minority individuals if the white-alone population is subtracted from the total population.  Since minorities were included in the age categories 15 years and under, and 65 years and older, only the population age 16-64 years are counted here.  Further adjusting for minority group individuals who do not speak English and who are counted in the language category leaves 35 to 40 million minority group individuals in the 16-64 year old category.
	Other groups with function-based needs that may not be captured in this analysis include people who are morbidly obese, pregnant women, people on kidney dialysis, and people living in zero-vehicle households.  Please note that data below were not included in Table 1, either because the source was not the 2000 Census or the numbers were for households, not individuals. Further, there was no way to correct for possible redundancy (e.g., a morbidly obese person with a disability). 
People with morbid obesity can present a range of challenges in emergency management, from adequate rescue transportation modes to beds and chairs that will support them. The American Obesity Association reports that approximately 9 million adult Americans are morbidly obese, defined as having a body mass index of 40 or more (American Obesity Association, n.d.).  The prevalence of morbid obesity in 2003-2004 was 2.8% in men and 6.9% in women (Ogden et al., 2006). 
The American Pregnancy Association reports there are approximately 6 million pregnancies every year in the United States (n.d.). A pregnant woman may have no needs beyond the need to avoid exposure to toxins, or she may be about to give birth and need medical assistance. 
The United States Renal Data System at the National Institutes of Health reports that in 2001, 287,494 U.S. residents received kidney dialysis (2003). 
The 2000 Census (Summary File 3, Table H44) reports that of about 110 million total occupied households, 10.8 million did not have a vehicle. About 1.1 million of these households are rural; the remainder are urban (these are household numbers and cannot be added to the data on individuals). While lack of a vehicle is generally considered a poverty issue related to lack of personal resources, some cities, such as New York and Washington D.C., typically have good public transportation systems and high rates of zero-vehicle households. In Manhattan, 77% of  households did not have a vehicle in 2000, while 56% households in the five New York City boroughs combined had no vehicles. Loss of all or part of a transportation system can in itself be an emergency, but is compounded by natural disasters, technological acts, or acts of terrorism such as the September 11, 2001, terrorist attacks in New York City and Washington, D.C.  
	Given this demographic data, it is clear that special needs can encompass more than 50% of the nation's population, rendering the term meaningless. Some methods of calculating the totals approach 70% of the population, even allowing for overlap among categories.  Continuing to use the term special needs does a disservice to every group included and greatly weakens the chances of planning for specific needs and providing an effective, comprehensive response.  
	The Nationwide Plan Review: Phase 2 Report (U.S. Department of Homeland Security, 2006) recommends developing a consistent definition of the term special needs. Unfortunately, there is no single term that can be substituted for special needs. Over the years, disability, cultural, and linguistic advocates pleading to replace special needs with more precise, segmented, and discrete groupings have been largely ignored. This is not simply a linguistic issue. Naming this functionally diverse group using a single term is equivalent to trying to describe over half of the United States population. The large number of heterogeneous groups it represents is too large and too diverse for the use of any single designation.
Who are People with Disabilities?
	Disability is not a condition that affects the special or unfortunate few.  Individuals with disabilities make up a sizable portion of the general population within the United States. According to the U.S. Census (Waldrop and Stern, 2003), they represent 19.3 percent of the 257.2 million people age 5 and older in the civilian, noninstitutionalized population, or nearly one person in five. Disability is a common characteristic and occurrence within the human experience. People with disabilities have the same range of personality traits, interests, and desires as everyone else. People with functional limitations are a part of the world's diversity (Kailes, 2002).
	While people with disabilities will compose a major segment of any special needs population, as a group they are very heterogeneous. It is important to understand the range of function-based needs within the population with a disability.  This approach leads to a common framework which can relate functional supports to functional needs, targeted at improving resource management in any type of incident.
	Census 2000 asked disability questions related to sensory, physical, and mental functioning; the capacity for self care; and difficulty going outside the home alone. Table 2 shows the numbers of people who reported within each of these categories, separated into age categories that correspond to Table 1: age 5 -15, age 16-64, and age 65 and over. The question about going outside the home alone was not asked for individuals below age 16. There is overlap among these categories, because one individual may have reported more than one characteristic. While Census 2000 reported that there were about 49 million people with a disability, about 89 million separate conditions are reported. CDC's special needs category of people with serious mental illness is included functionally within the 2000 Census disability categories.  
 
Insert Table 2. Civilian, Noninstitutionalized Population by Age and Disability Type

Defining Functional Limitations Broadly
	Not all people who experience functional limitations consider themselves to have a disability. Some disability labels (e.g., spinal cord injury or amputation) are little more than diagnostic categories, and say little about how the person actually functions. Generalizations based on particular types of disabilities have numerous exceptions. Two individuals with the same type of functional limitation may have very different abilities and needs. Like everyone, people with disabilities and functional limitations have different histories, resources and attitudes (Kaplan, 1992). 
	There are 67 places where disability is defined in federal laws and regulations. (Cherry Engineering Support Services, Inc. [CESSI], 2003)  Most of them are used to determine eligibility for programs such as Social Security Disability Insurance. Other definitions, such as the one in the Americans with Disabilities Act, are used to establish civil rights and protections. Each definition offers narrow eligibility criteria which are inappropriate in the face of preparing for, responding to and recovering from a disaster. These criteria may help determine access to, and distribution of, resources in the more long term recovery stages. However, the closer to the time of the incident, the more need there is to focus on function-based needs and the functional supports required to address those needs.  
	 In disaster management activities, it is important to think broadly about disability, in terms of function and not an impairment or diagnosis. Traditional narrow definitions of disability are not appropriate. Disability is not limited to wheelchair users and people who are blind or deaf, or just individuals covered by the Americans with Disabilities Act.  Disability can include temporary limitations resulting from, but not limited to, surgery, accidents and injuries (sprains, broken bones), pregnancy, etc. as well as permanent conditions. Some disabilities result from the disaster itself and leave individuals more vulnerable, since they have no prior experience in managing disability related needs.   
	Individuals with disabilities include those with one or more activity limitations such as a reduced capacity or inability to see, lift, walk, speak, hear, learn, understand, remember, manipulate or reach controls, and/or respond quickly. Some limitations are visible, such as use of mobility devices such as wheelchairs, canes, crutches, and walkers. Other limitations such as heart disease, respiratory, emotional or psychiatric conditions, arthritis, reduced stamina, significant allergies, asthma, multiple chemical sensitivities, and some visual, hearing and cognitive disabilities may be less evident.
	The concept that people either have a disability or do not have a disability perpetuates misperceptions about the nature of disability and functional limitations. Activity limitations exist along a continuum of severity and duration (partial to total, temporary to permanent) that affect almost everyone at some point in their lives. 
	Longer life expectancies and decreasing death rates from heart disease substantially prolong longevity and increase the numbers of people living with chronic, nonfatal, disabling conditions (Reis, 2003). As the population ages, people with disabilities and functional limitations rise in proportion to demographic changes. Medical and technological advances continue to keep more people with disabilities, chronic conditions, and functional limitations alive, healthy and functioning independently. Planning for inclusiveness in emergency services is simply more efficient (NCD, 2000). Inclusive planning enables incident managers to have a common framework available for people with similar function-based needs. What they call themselves, how they have been labeled or diagnosed, or the programs for which they are eligible is irrelevant. 
	Identifying impairment or diagnosis does not tell you how to operationalize the need for functional support. There are a large number of impairment categories, diagnoses, and descriptions of individual differences.  According to the World Health Organization, an impairment is a "problem in body function or structure such as a significant deviation or loss" (2001, p.10) that does not always lead to a functional limitation (Brandt & Pope, 1997).   For example, severe skin impairment, may or may not cause functional limitation. 
	By planning for people in terms of functional needs, an operational set of predictable supports can be developed. A functional support framework provides for commonalities in planning among a large array of impairment types. This framework provides a way to operationalize support for similar functional needs and activity limitations, even though the impairments may be very diverse. Asking "What is needed to maintain functional C-MIST?" avoids making inappropriate assumptions about what an individual does or does not need.
	If planning does not embrace the value that everyone should have the chance to survive, few will (NCD, 2005).  By adopting a broad function-based approach, no one is left behind. Everyone involved, from planners to first responders, needs to address the broad spectrum of disability and functional limitation issues (Reis, 2004).
People with Disabilities and Functional Limitations are Part of Every Segment of the Population
	People with disabilities and activity limitations are very diverse and should not be sidelined or compartmentalized into a special needs box.  Special implies difference and isolation. Among disability advocates, the special label is often used for segregated programs (Woodward, 1991).  Programs and services continue to miss the mark when people are seen and served as people having special needs instead of people who are a part of every segment of the general population.
	Individuals with disabilities and functional limitations live in the country and in cities, attend school, work at home and in high-rise buildings. Most people with disabilities and functional limitations are integrated into and actively involved in society. If they live long enough, most people will age into disability. As time alters their bodies, activity and functional limitations are natural occurrences. There is an 80% chance that all people will experience a temporary or permanent disability sometime in their lives (Kailes, 2002). More than 40 percent of noninstitutionalized people age 65 and over have a disability (see Table 3).	
	However, it is important to recognize that most individuals with disabilities (33 million) are in the age 16-64 working age population. Although the employment rate of people with disabilities is lower than that of people without disabilities, people with disabilities are both employees and employers. Emergency planning needs to include people with disabilities in the workplace as well as in residential settings.  Table 3 shows the prevalence of disability by age. 

Insert Table 3. Prevalence of Disability by Age

Better Equipped to Serve All: Using a Function-Based Approach
	Accommodating this large group often translates into being better equipped to serve all people. Disasters and terrorism instantly escalate the number of people with new disabilities and functional limitations. 
	In addition, emergencies can intensify an individual's vulnerabilities.  Different environments change the level of support needed to reduce functional limitations.  For example, an older person with moderate memory loss may do quite well at home, but become disoriented and confused due to transfer trauma in an unfamiliar environment. Loss of mobility equipment may render independent wheelchair users mobility dependent (Brandt & Pope, 1997). 	
	Effective planning and incident response that includes people with a wide range of function-based needs should be woven into the fabric and culture of emergency management and disaster planning. As long as disability and other special needs groups are viewed as unique or special, the system's existing inefficiencies will continue.  The following common framework incorporates function-based issues as routine elements in effective emergency planning and response.
A Function-Based Framework for Emergency Management and Planning
	This article proposes C-MIST, a flexible framework built on five essential function-based needs: communication, medical, maintaining functional independence, supervision, and transportation. The intent is to reduce negative consequences and improve readiness in all planning, preparedness, response, recovery, and mitigation activities. Addressing functional limitations includes both people who identify as having a disability, and the larger number of people who do not identify as having a disability, but who have a functional limitation in hearing, seeing, walking, learning, language, and/or understanding. 
	 Federal and several state planning teams began the process for operationalizing this framework in 2006. This framework may need future refining but these five areas of essential, and sometimes overlapping, functional needs and responses could lead to specific action plans now: 
Communication Needs
Most people who have limitations that interfere with receiving and effectively responding to information are self-sufficient, but may need information provided in ways they can understand and use.  Hearing, understanding, cognitive or intellectual limitations may prevent them from hearing verbal announcements, seeing directional signage to assistance services, or understanding how to get food, water and other assistance. They include people who are ethnically diverse; have limited or no ability to speak, read or understand English; have reduced or no ability to speak, see, and hear; and have limitations in learning and understanding. In addition to those who cannot see, hear or understand, many people have a difficult time hearing, seeing and understanding when their environment is noisy and chaotic.
Effectively meeting communication needs can include, for example:  (a) posting content of oral announcements in a specified public area so that people who are deaf, hard of hearing or beyond hearing range can go there to get or read the announcements; (b) designating a specific time of the day and place where foreign language and sign language interpreters will be available to communicate information; and (c) employing trusted community-based organizations to effectively communicate with the communities they serve.

Medical Needs
People with visible disabilities tend to be automatically, but often mistakenly, placed in this category.  Disaster management training should incorporate a more specific function-oriented determination of medical needs.  Medical needs can include: (a) managing unstable, terminal, or contagious health conditions that require observation and ongoing treatment; (b) managing medications, intravenous therapy, tube feeding and/or regular vital signs readings; (c) dialysis, oxygen, and suction administration; (d) managing wounds, catheters or ostomies; and (e) operating life-sustaining electrical equipment.	 
Maintaining Functional Independence Needs
	At-risk individuals who are identified early, screened and whose functional independence needs are addressed within the first 48 hours can avoid costly deterioration of their health and functional mobility. Early disaster response intervention services provided by competent organizations that are familiar with functional needs allow people to maintain their health, mobility, independence, and to manage in mass shelters. Effectively meeting these needs prevents secondary conditions and institutionalization, and reduces the use of scarce and expensive intensive emergency medical services.
	Maintaining functional independence can include: (a) replacing essential medications for blood pressure management, seizures, diabetes, psychiatric conditions, etc; (b) restoring functional mobility by replacing lost adaptive equipment (wheelchairs, walkers, scooters, canes, crutches, etc.) and essential consumable supplies (catheters, ostomy supplies, padding, dressings, sterile gloves, etc.), and (c) providing orientation assistance for those with visual limitations.  It can include individuals who are not self-sufficient, who do not have support from assistants, family or friends, and who need assistance with activities of daily living such as bathing, feeding, toileting, dressing, and grooming
Supervision Needs
Support for individuals who do not have or have lost adequate support from family or friends must be determined on a case-by-case basis. For example, in an emergency some people with mental illness may function well and have healthy responses and coping skills; others with serious and persistent mental illness may need a protected and supervised setting (U.S. Department of Health And Human Services [HHS], 1996).
	People with supervision needs can include: (a) people who decompensate because of transfer trauma, trauma stressors beyond their ability to cope, or inability to function in a foreign environment; (b) people with conditions such as dementia, intellectual disability, Alzheimer's and psychiatric conditions such as depression, schizophrenia, and intense anxiety; (c) people who function adequately in a familiar environment, but become disoriented and unable to function in an unfamiliar environment; (d) prisoners; and (e) unaccompanied children.
Transportation Needs
Emergency response requires mobility. Many people cannot drive due to disabilities, age, addictions, legal restrictions, etc. (Littman, 2005). As noted in the demographic analysis, 10.8 million U.S. households have no vehicle. This includes people who are old, poor, and people who need wheelchair-accessible transportation. Many non-drivers and people from zero-vehicle households can function independently once evacuated to safety.  
	Transportation is a well established component of emergency response plans, and merits detailed focus beyond the limited scope of this paper. However, according to Littman, information about transportation-dependent people may be inadequate because "decisionmakers are unfamiliar with and insensitive to their needs" (2005, p.12). Emergency action plans need to routinely specify exactly who will do what and when to address the logistical and function-based needs of people with a wide range and different combinations of physical, economic, and social challenges.
Improving Readiness Involves Leadership, Service Delivery, Expertise, and Training
	Although government plays a major role in disaster planning and response, traditional government emergency agencies are not equipped to respond with the essential services needed by people with a variety of functional needs. Events of the 2005 U.S. hurricane season confirm that traditional response and recovery systems are often not successful at meeting many human needs (NCD, 2005).
	Typically, disaster preparedness and emergency response systems are designed for people for whom escape or rescue involves walking, running, driving, seeing, hearing and quickly responding to directions. Emergency management systems need help with the very specific and sometimes complex needs of people with functional limitations. Well-intentioned emergency medical and public service personnel do not adequately address complex functional independence, physical, communication, supervision, and transportation needs because they lack knowledge of available services, the values and goals of independent living and self-determination, human and civil rights laws and protections, and cultural and linguistic issues.
	The Nationwide Plan Review: Phase 2 Report (HHS, 2006) recommends strengthening collaboration between governments and non-governmental entities at all levels. The review found that governments at all levels do not adequately involve civic organizations, faith-based organizations, special needs advocacy groups, the private sector, neighborhood associations, and educational institutions in planning processes, and recommends that these organizations can assist planners in developing and testing plans for public preparedness, direct assistance, and surge capacity.  
	 Functional Support Coordinators (FSCs) could serve as point people vested with the leadership responsibility, authority, and means for coordinating, and managing resources for people with functional needs in emergency preparedness, disaster relief and recovery operations.  These positions should be within the emergency service agency at the senior executive level of government (federal, state and local).  Minimum FSC qualifications should include in-depth understanding of and proven community-based experience in: (a) the implementation of values and goals of independent living and self-determination; (b) human and civil rights policies, procedures, and implementation practice; and (c) providing for people's complex function-based needs.
	FSCs would lead and coordinate activities that: (a) ensure programs and services are accessible to, accommodate, and include people with essential functional limitations; (b) employ people with functional needs and activity limitations to serve as interpreters, ham radio operators, and shelter managers; (c) document, disseminate, promote and support the use of good practices; (d) use community-based organizations (CBOs) and non-governmental organizations (NGOs), and partner with experts who are closely connected to and trusted by the communities they serve; (e) recruit, encourage and provide sustained funding incentives that allow CBOs/NGOs to integrate disaster work into their missions; (f) fund, orient, mobilize and deploy teams of CBOs/NGOs to coordinate disaster planning, preparedness, response, recovery and mitigation services and integrate them with existing emergency systems in a way that is immediate, flexible, and collaborative; (g) establish mutual aid agreements that integrate the strengths and skills of CBOs/NGOs into the emergency service plans and strategies of local government; (h) integrate function-based issues into all emergency management courses, so the subject is not considered special; and (i) integrate and evaluate function-based scenarios, goals and objectives in all drills, exercises and post-action evaluations.
	FSCs should be required to have the skills and the resources to build teams of qualified subject matter experts who are knowledgeable in emergency management, and who would also: (a) be present in shelters, temporary housing and other assistance centers; (b) add intake screening questions that identify, triage, and track needs so people can maintain their functional independence by receiving appropriate just in time assistance, referrals, and long-term solutions; (c) work beside shelter personnel and emergency managers and quickly orient them to the essential functional needs of populations and to the resources available (National Organization on Disability, 2005); (d) train shelter emergency personnel to distinguish between people who only need assistance in maintaining their health, medical stability and mobility, and those whose medical and supervision needs cannot be met in a mass shelter because they are not self-sufficient or do not have adequate support from family or friends; and (e) train shelter emergency personnel to make quick access fixes such as installing temporary ramps and designating a specific time of the day and place where interpreters will be available to communicate information. 

Conclusion
	It is critical to move beyond using the category special needs to using a more effective, accurate and flexible framework built on essential functional needs.  This is the crucial element needed to: (a) build appropriate levels of capacity for disaster preparation, emergency response processes, procedures and systems; (b) adopt appropriate guidelines and protocols for resource management; (c) strengthen service delivery and training; (d) improve response successes; (e) prevent secondary conditions, and reduce institutionalization and the use of scarce and expensive  intensive emergency medical services and  downstream services; (f) allow disaster services to integrate the value that everyone should have the chance to survive; and (g) translate documented lessons into knowledge and application.
A special needs category doesn't work because it cannot be operationalized.  It does not provide adequate guidance on which operational tasks are required for an appropriate response.  Continuing to use the term special needs does a disservice to each of the groups represented by over 50% of the nation's population, translates into vague planning for specific needs, and results in response failures.  "Future actions must be based on needs not doctrine." (Harrald. 2006).

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Population category		Total		% of U.S. total  population (281,421,906)	
					
Children, age 15 and under	64,272,779		 22.84    		
Elderly, age 65 and over	34,991,753		12.43		
Speak English “not well”, age 18-64	5,703,904		2.03		
Speak English “not at all”, age 18-64	2,575,154		0.92		
Noninstitutionalized population 
with a disability, age 16-64	33,153,211		11.78		
Total special needs population	140,696,801		49.99		
Data Source. U.S. Census Bureau, Census 2000 Summary File 1: table P2, total population; table PCT12, total population sex by age. Summary File 3: table P19, age by language spoken at home by ability to speak English for the population 5 years and over and table P42, sex by age by disability status for the civilian noninstitutionalized population age 5 years and over. 	
Table 1. Emergency Management Special Needs Groups: Percentage of the U.S. Population

 Table 2. Civilian, Noninstitutionalized Population by Age and Disability Type
Population age	Sensory	Physical	Mental	Self-care	Going outside the home	Total	
5 to 15 years	442,894	455,461	2,078,502	419,018	*	3,395,875	
16 to 64 years	4,123,902	11,150,365	6,764,439	3,149,875	11,414,508	57,890,659	
65 years and over	4,738,479	9,545,680	3,592,912	3,183,840	6,795,517	27,856,428	
Total	9,305,275	21,151,506	12,435,853	6,752,733	18,210,025	89,142,962	
Data source: U.S. Census Bureau, Census 2000 Summary File 3, table P41. All numbers are based on the civilian noninstitutionalized population. * The U.S. Census does not collect going outside the home disability data for people aged 5 to 15.	

	
Population age	Total	% of age category	
	
5 years and over	257,167,527	100.0		
   With any disability	49,746,248	    19.3		
5 to 15 years	45,133,667	100.0		
   With any disability	2,614,919	    5.8		
16 to 64 years	178,687,234	100.0		
   With any disability	33,153,211	    18.6		
65 years and over	33,346,626	100.0		
   With any disability	13,978,118	    41.9		
Data source. U.S. Census Bureau, Census 2000 Summary File 3: table P42, civilian noninstitutionalized population 5 years and over. 	
Table 3. Prevalence of Disability by Age

Co-authors full names and addresses, email: 

June Isaacson Kailes 
Disability Policy Consultant 
Associate Director, Center for Disability Issues and the Health Professions
Western University of Health Sciences, 
Pomona, California 
310.821.7080
jik@jik.com
www.cdihp.org | www.jik.com

Alexandra Enders
Senior Research Associate/Policy Analyst
Research and Training Center on Disability in Rural Communities
52 Corbin Hall
University of Montana
Missoula, Montana 59812
406.243.2655
enders@ruralinstitute.umt.edu
www.DisabilityCounts.org 

Bios

June Isaacson Kailes, Associate Director, Center for Disability Issues and the Health Professions Western University of Health Sciences, Pomona, California, is well known for her national and international work in disaster preparedness for people with disabilities. Her publications include Living and Lasting on Shaky Ground: An Earthquake Preparedness Guide for People with Disabilities, distributed by California Office of Emergency Safety and Creating a Disaster: Resistant Infrastructure for People at Risk Including People with Disabilities used and published in several countries. Inspired by 9/11 and influenced by her past work in disaster preparedness, she authored Emergency Evacuation Preparedness: Taking Responsibility for Your Safety: A Guide for People with Disabilities and Other Activity Limitations. Material from this guide has been incorporated into several government and private sector evacuation plans as well as used by emergency management personnel.

Alexandra Enders is Senior Research Associate/Policy Analyst at the Research and Training Center on Disability in Rural Communities at the University of Montana. Her policy analysis focus is on the infrastructure issues - Transportation and Telecommunications – which determine the availability, accessibility, and usability of the vehicles of modern participation. Using GIS, rural and disability demographics, she has been incorporating spatial analysis into policy and survey projects focused on service system access and distribution.  She has a long time interest in universal design, accessible media, and dissemination.  For more than 25 years, she has been involved with service delivery systems and networks, public policy, funding and quality assurance issues, program development and training activities, information services, independent living program development, and technology evaluation and effectiveness studies, at the Electronic Industries Foundation in Washington, D.C., the Rehabilitation Engineering Center at Children’s Hospital at Stanford, and the Center for Independent Living in Berkeley, California.  She is a past-president of RESNA, the Rehabilitation Engineering and Assistive Technology Association of North America.

Author Note

June Isaacson Kailes is an Associate Director at the Center for Disability Issues and the Health Professions (CDIHP), Western University of Health Sciences, Pomona, California. Alexandra Enders is Senior Research Associate/Policy Analyst at the Research and Training Center on Disability in Rural Communities at the University of Montana. This study was funded in part by CDIHP, and in part by grant (H133B030501) from the US Department of Education, National Institute on Disability and Rehabilitation Research to the University of Montana Research and Training Center on Disability in Rural Communities. The article expands on the ideas in Kailes, J. I. (2005). Disaster Services and "Special Needs"- Term of Art or Meaningless Term? International Association of Emergency Managers Bulletin, Special Focus Issue: Emergency Preparedness for Individuals With Disabilities, Part 2, April, 200,  which was supported in part by NIDRR grant (H133B000500-04B) to the University of Kansas.  

The opinions expressed are those of the authors and do not necessarily represent those of sponsoring agencies. We wish to acknowledge the assistance of Zack Brandt in analyzing the demographic distribution of people included a wide variety of "special needs" categories, and the disability community for constantly reminding us of the important of the content of this article. 

The article is dedicated to the many people who lost their independence or their lives because information transfer and the lessons learned and documented over the last 30 years, are not yet applied.

Author Note

June Isaacson Kailes is an Associate Director at the Center for Disability Issues and the Health Professions (CDIHP), Western University of Health Sciences, Pomona, California. Alexandra Enders is Senior Research Associate/Policy Analyst at the Research and Training Center on Disability in Rural Communities at the University of Montana. This study was funded in part by CDIHP, and in part by grant (H133B030501) from the US Department of Education, National Institute on Disability and Rehabilitation Research to the University of Montana Research and Training Center on Disability in Rural Communities. The article expands on the ideas in Kailes, J. I. (2005). Disaster Services and "Special Needs"- Term of Art or Meaningless Term? International Association of Emergency Managers Bulletin, Special Focus Issue: Emergency Preparedness for Individuals With Disabilities, Part 2, April, 2000, which was supported in part by CDIHP and in part by NIDRR grant (H133B000500-04B) to the University of Kansas.  The opinions expressed are those of the authors and do not necessarily represent those of sponsoring agencies. We wish to acknowledge the assistance of Zack Brandt in analyzing the demographic distribution of people included a wide variety of "special needs" categories, and the disability community for constantly reminding us of the important of the content of this article. The article is dedicated to the memory of the many people who lost their independence or their lives because information transfer and the lessons learned and documented over the last 30 years, are not yet applied.