Moving Beyond ÒSpecial NeedsÓ

1 Moving Beyond special needs . A Function-Based Framework for Emergency Management and Planning June Isaacson Kailes Western University of Health Sciences Alexandra Enders University of Montana Disaster preparation and emergency response processes, procedures, and systems can be made more ef- fective for people with disabilities, as well as for the population as a whole. An essential element of build- ing appropriate levels of capacity, specific planning, and response success is to move Beyond use of the special needs category, to better identify and address the diverse needs of those included under this label. This article provides disability demographics and describes special needs populations to lay the foundation for this change. It suggests the development of a more accurate and flexible planning and response framework based on essential, sometimes overlapping, functional needs : communication, medical needs , maintaining functional independence, supervision, and transportation (C-MIST).

2 It also proposes new approaches to functional support, leadership, service delivery, and training. The 2005 hurricane season in the United States reinforced the ognize and meet their needs in an emergency. As it is widely need to discontinue the use of all-inclusive labels such as spe- used within disaster services and the emergency management cial needs for disaster planning. Combining groups too broadly field, the term special needs generally includes an extremely translates into imprecise planning and, as a result, emergency broad group of people, including people with disabilities, peo- response failures. As the term is typically used, the special ple with serious mental illness, minority groups, non English needs population makes up at least half of the population. speakers, children, and the elderly (Centers for Disease Control The label special needs generally incorporates people whose and Prevention [CDC], 2004). Other lists add single working functional needs include assistance with communication, medi- parents, people without vehicles, people with special dietary cal needs , maintaining functional independence, supervision, needs (Federal Emergency Management Agency [FEMA], and transportation (C-MIST).)

3 Not receiving C-MIST support 2004), pregnant women, prisoners, people who are homeless, when it is needed can have severe consequences for those who and others. While there appears to be little consensus on ex- need it. As a result, to ensure that the needs of this large seg- actly who should be included in the special needs category, ment of the population receive necessary attention, it is vital these groups represent a large and complex variety of concerns that disaster preparation include a plan for operationalizing and challenges for disaster planning and response. Many of support for the population's needs . these groups have little in common Beyond the fact that they The purpose of this article is to begin to identify the are often left out of programs, services, and emergency plan- groups included in the population of special needs that require ning (Kailes, 2000; National Council on Disability, 2005). specific disaster planning above and Beyond the average per- We conducted a demographic analysis to estimate the son.

4 In addition, we explore a framework for disaster plan- size of the special needs category. For consistency, we used the ning based upon identifying and addressing functional needs decennial Census 2000 data. The total of the most typical through the use of functional supports, leadership, service de- groups of special needs populations people with disabilities, livery, and training. including people with serious mental illness; people who do not speak English or do not speak English well; children, ages 15 years and under; and people 65 years old and over was al- Who Are People With special needs ? most 141 million people, of the population. Table 1. shows the categories used, with age ranges for each. Everyone Identifying the demographics of who is included in the term in the ages 15-years-and-under and ages 65-years-and-older special needs will help planners better understand how to rec- categories was included. Because people with disabilities were 230 JOURNAL OF DISABILITY POLICY STUDIES VOL.

5 17/ NO. 4/2007/ PP. 230 237. JOURNAL OF DISABILITY POLICY STUDIES VOL . 17/ NO. 4/2007 231. TABLE 1 2005). The Census 2000 reported more than 70 million mi- Emergency Management special needs Groups: nority individuals if the White alone population is sub- Percentage of the Population tracted from the total population. Because minorities were included in the age categories of 15 years and under and 65. % total years and older, only the population ages 16 to 64 years are Population category Total population counted here. Further adjusting for minority-group individu- Children, age 15 and younger 64,272,779 als who do not speak English and who are counted in the lan- Elderly, age 65 and older 34,991,753 guage category leaves 35 million to 40 million minority group individuals in the 16- to 64-year-old category. Speak English not well, 5,703,904 Other groups with function-based needs that may not be ages 18 64 yrs captured in this analysis include people who are morbidly Speak English not at all, 2,575,154 obese, pregnant women, people on kidney dialysis, and people ages 18 64 yrs living in zero-vehicle households (see Note 2).

6 Noninstitutionalized population 33,153,211 Obesity: People with morbid obesity can pre- with a disability, ages 16 64 yrs sent a range of challenges in emergency manage- Total special needs population 140,696,801 ment, from adequate rescue transportation Note. Data source: Census Bureau, Census 2000, Summary File 1: Table P2, total modes to beds and chairs that will support population; Table PCT12, total population, sex by age. Summary File 3: Table P19, age them. The American Obesity Association ( ). by language spoken at home by ability to speak English for the population 5 years and over; Table P42, sex by age by disability status for the civilian noninstitutionalized pop- reported that approximately 9 million adult ulation age 5 years and over. Americans are morbidly obese, defined as hav- ing a Body Mass Index (BMI) of 40 or more. The prevalence of morbid obesity in 2003 2004 was included in the 15-years-and-under and 65-years-and-older in men and in women (Ogden et al.)

7 , age categories, only the population 16 to 64 years was included 2006). in the disability category. This was necessary to avoid overcount- Pregnancy. The American Pregnancy Associa- ing when an individual, such as a 70-year-old person with a tion ( ) reported that approximately 6 million disability, was in more than one category. Census data were not pregnancies occur every year in the United available for 16- and 17-year-olds who do not speak English or States. A pregnant woman may have no needs who do not speak English well, so we were only able to include Beyond the need to avoid exposure to toxins, or people ages 18 to 64 in this category. Those ages 65 years and she may be about to give birth and need medical over would already be included in the elderly age category. assistance. Populations not included in Table 1 include the entire in- Kidney dialysis. The United States Renal Data stitutionalized population. Including this segment (4,059,039 System at the National Institutes of Health people; Census 2000 Summary File 1, Table PCT16) would (2003) reported that in 2001 there were 287,494.

8 Bring the percentage of the population in the special needs cat- residents receiving kidney dialysis. egory to (144,755,840 people out 281,421,906 in the Zero-vehicle households. The Census 2000. entire population reported in the Census 2000. People live (Summary File 3, Table H44) reported that in institutionalized group quarters because there is a perceived million households out of about 110 million to- ongoing need for medical care and/or supervision. The resi- tal occupied households did not have a vehicle. dents of nursing homes, hospitals/wards, hospices, and About million of these households were in schools for the handicapped, correctional institutions, state rural areas; the remainder were urban. (These prisons, and halfway houses have medical or supervision needs are household numbers and cannot be directly that will continue in an emergency. In addition, we did not in- added to the data on individuals.). clude the almost quarter million individuals with disabilities who live in group homes, because in the Census 2000 they were Although lack of a vehicle is generally considered a pov- counted in noninstitutionalized group quarters and already erty issue related to lack of personal resources, some cities, included in the Census 2000 tables for people with disabilities.)

9 Such as New York and Washington, DC, typically have good Minority groups are included in some lists of special public transportation systems and high rates of zero-vehicle needs populations (see Note 1). The United States continues to households. In Manhattan, 77% of the households did not grow in racial and ethnic diversity. California, Hawaii, New have a vehicle in 2000, whereas 56% of the households in the Mexico, and Texas are majority minority states, in which the five New York City boroughs combined had no vehicles. Loss majority of the population differs from the national majority of all or part of the transportation system can in and of itself population. Arizona, Georgia, Maryland, Mississippi, and New be an emergency situation, but it is compounded by natural York have minority populations of 40% ( Census Bureau, disasters, technological acts, or acts of terrorism, such as the 232 JOURNAL OF DISABILITY POLICY STUDIES VOL . 17/ NO. 4/2007. terrorist attacks in New York City and Washington, DC, on function-based needs within the population.)

10 This approach September 11, 2001. leads to a common framework that can relate functional sup- Given this demographic data, it is clear that special needs ports to functional needs , targeted at improving resource man- can cover much more than 50% of the nation's population, agement in any type of incident. rendering the term meaningless. Some methods of calculating Census 2000 asked disability questions related to sensory, the totals approach 70% of the population, even when figur- physical, and mental functioning; the capacity for self-care;. ing in the overlap among categories. Continuing to use the and difficulty going outside the home alone. Table 2 shows the term special needs does a disservice to every group included numbers of people who reported within each of these cate- and greatly weakens the chances of planning for specific needs gories, separated into age categories that correspond to Table 1: and providing an effective, comprehensive response. ages 5 to 15 years, ages 16 to 64 years, and ages 65 years and The Nationwide Plan Review: Phase 2 Report ( Depart- over.)