The Paradigm Shift in Planning for Special-Needs Populations Brian S. Parsons, MUEP, MPA and Debra Fulmer, MA
Reprinted from Emergency Management in Higher Education: Current Practices and Conversations; Papers from the 2007 FEMA Emergency Management Higher Education Conference
From the 1930s, when disaster More than 1.4 million people in the response was ad hoc and largely United States receive home health focused on the repair of damaged care.3 infrastructure, through the present-day Populations described as emergency management focus on “transportation disadvantaged”— “readiness,” emergency planning has those who do not have access to a inadequately considered populations personal vehicle or are unable to who need additional support. This fact drive—may also require assistance was evident during the California during emergencies. The 2000 wildfires in 2003 and when Hurricane Census reports that in the top-ten Katrina devastated the Gulf Coast in carless cities, between 29 percent 2005. In both cases, a substantial and 56 percent of the households number of individuals did not receive are without a vehicle.4 appropriate warning, were unable to Eighteen percent of the total U.S. access shelters, went without medical population aged 5 and older speak a intervention, or, at worst, perished. language other than English at The U.S. population is aging, home, a finding that highlights the growing increasingly diverse, and more need to ensure that emergency frequently receiving health care at communications are also geared to home. In addition, an increasing number the non-English-speaking residents of Americans are migrating to areas that in the community.5 are at a higher risk of hazard. As of 2003, 53 percent of the nation’s Many of the individuals accounted for in population lived in the 673 U.S. coastal these statistics are part of mainstream counties, an increase of 33 million communities and function independently people since 1980.1 under normal situations. In an To be able to assess the resources emergency situation, however, they may needed for the entire community when a need assistance and are thus identified disaster strikes, emergency managers as “special needs populations.” must ensure that demographic trends The federal government, in are factored into their emergency plans. coordination with its state, local, tribal, For example, and nongovernment partners, is An estimated 13 million individuals undertaking key initiatives to strengthen age 50 or older in the United States planning for the safety and security of will need evacuation assistance, and individuals with special needs. For for about half of them, such example, assistance will be required from In July 2004, President George W. someone outside of their household.2 Bush issued Executive Order 13347,
______1 charging federal agencies to focus National Incident Management on individuals with disabilities when System (NIMS) established developing emergency preparedness considerations related to special plans. This order also established needs throughout the the Interagency Coordinating Council intergovernmental operational on Emergency Preparedness and protocols. Individuals with Disabilities to guide DHS/FEMA is finalizing its the work across governmental and Emergency Management Planning nongovernmental sectors. Guide for Special Needs Populations In June 2006, the U.S. Department as a tool for local, state, and tribal of Homeland Security (DHS), in emergency managers to use in the cooperation with the U.S. development of EOPs that cover all Department of Transportation, populations within the community. released the Nationwide Plan Review Phase 2 Report. Among FUNCTION-BASED PLANNING other things, the report assessed the The term “special needs” is well degree to which state and urban established in the emergency areas have integrated disability- and management vocabulary, yet it is an aging-related issues into their ambiguous term that has been used emergency operations plans (EOPs), inconsistently to define multiple and found that “substantial populations, and sometimes it is used improvement is necessary to simply as a substitute for terms such as integrate people with disabilities in “people with disabilities” and “the emergency planning and elderly.” Thus, state legislators and readiness.”6 Moreover, during the emergency planners are finding it plan review process, emergency advantageous to establish a consistent managers were consistently statewide definition for the term in order requesting technical assistance to to build a common understanding that guide the identification and can guide local jurisdictions in their incorporation of individuals with planning processes and result in the disabilities and other special-needs efficient coordination of resources populations into emergency across local, state, tribal, and regional planning. entities. Pursuant to the 2006 Post Katrina Responding to the recommendations Emergency Management Reform of the Nationwide Plan Review, the Act, FEMA issued its guidelines for federal government introduced within accommodating individuals with the NRF glossary a definition of disabilities in disasters7 and “special-needs populations” that local, established the role of disability state, and tribal governments may adopt coordinator within FEMA for use in developing their EOPs. management. Because mere labeling (individuals with In 2007, the Homeland Security disabilities, children, elderly, etc.) does Grants Program incorporated not convey useful information to the language that focuses on planning emergency management professional for special-needs populations. about the precise needs of group In 2008, the revised National members, the NRF definition, quoted Response Framework (NRF) and the below, is function based, reflecting a
______2 population’s need rather than its can understand and use, and from condition, diagnosis, or label.8 authorities they trust. They may not Accordingly, special-needs populations be able to hear verbal are announcements, see directional signage, or understand how to get populations whose members may assistance because of hearing, have additional needs before, vision, speech, cognitive, or during, and after an incident in intellectual limitations, and/or limited functional areas, including but not English proficiency. limited to: maintaining Transportation. Individuals who independence, communication, cannot drive or who do not have a transportation, supervision, and vehicle may require transportation medical care. Individuals in need of support for successful evacuation. additional response assistance may This support may include accessible include those who have disabilities; vehicles (e.g., vehicles equipped who live in institutionalized settings; with lifts or otherwise suitable for who are elderly; who are children; transporting individuals who use who are from diverse cultures; who oxygen) and mass transportation. have limited English proficiency or Supervision. Individuals who rely on are non-English speaking; or who caregivers, family, or friends in daily are transportation disadvantaged life may be unable to cope in a new [emphasis added].9 environment, particularly if these individuals are children or have Preparing for the function-based intellectual or psychiatric disabilities. needs of the community is a paradigm Medical care. Individuals who are not shift in emergency planning in that it self-sufficient or who do not have fosters the development of an adequate support from caregivers, operational set of predictable supports. family, or friends may need trained The five functional areas in which medical assistance with managing individuals with special needs may unstable, terminal, or contagious require support during and following a conditions; managing intravenous disaster are described as follows: therapy, tube feeding, and vital Maintaining Independence. signs; receiving dialysis, oxygen, and Individuals who rely on assistance in suction administration; managing order to be independent in daily wounds; and operating power- activities may lose this support dependent equipment to sustain life. during an emergency. This support may include supplies (diapers, The function-based approach to catheters, ostomy materials, etc.), assessing needs furthers life safety and durable medical equipment health objectives during each phase of (wheelchairs, walkers, scooters, emergency planning. It provides a etc.), and attendants or caregivers. strategy for identifying the resources Communication. Individuals who that will be necessary to maximize have limitations that interfere with residents’ health and safety following an the receipt of and response to incident, while at the same time it limits information may need that the need to plan for multiple distinct information provided in ways they populations. Planners can group overall
______3 response resources in terms of function, Building on the freedoms guaranteed with the ultimate goal of expediting by the Constitution, Congress has community recovery. This approach to enacted several laws aimed at identifying and allocating resources protecting the civil rights of populations reduces the chance that a population that historically have been subjected to will be overlooked during any phase of discrimination. Federal civil rights emergency management.10 legislation prohibits discrimination based In particular, a comprehensive on characteristics including a person’s strategy to provide support (e.g., race, color, national origin, religion, sex, warnings, transportation, assistive age, and disability. Key civil rights technology, medicine, or food and legislation includes the landmark Civil water) to individuals with special needs Rights Act of 1964, the Fair Housing Act places the focus on identifying the of 1968, the Higher Education specific resources that will be needed to Amendments of 1972, the Age sustain or restore the pre-disaster Discrimination Act of 1975, the capabilities of those individuals. Rehabilitation Act of 1973, and the Recognizing who is in the community, Americans with Disabilities Act of 1990. where they are located, and what it Federal civil rights laws apply to takes to support them increases the emergency management agencies as likelihood that supplies will be deployed they operate within governmental and to the appropriate location at the nongovernmental sectors. In addition, optimum time. Surplus resources— discrimination during presidentially whether materials, knowledge, or declared disasters is specifically personnel—may be shared with other prohibited by Sections 308–309 of the jurisdictions. Conversely, gaps in Robert T. Stafford Disaster Relief and resource allocation may indicate a need Emergency Assistance Act of 1988, as to form creative partnerships with local amended. community organizations. The function- based approach is easily adaptable to No person shall, on the grounds of scalable planning that meets the needs race, color, national origin, sex, of different jurisdictions depending on religion, nationality, age, disability, such factors as size, risks, and potential limited English proficiency, or hazards. economic status, be denied the benefits of, be deprived of ALIGNMENT WITH CIVIL RIGHTS participation in, or be discriminated STATUTES against in any program or activity Securing additional supports from the conducted by or receiving financial community enables many individuals assistance from FEMA.…These with special needs to remain within the prohibitions extend to all entities general population response and receiving Federal financial recovery structures, freeing up assets to assistance from FEMA, including address individuals who have more state and local governments, critical needs. This approach furthers educational institutions, and any the independence and inclusion of organization of any type obtaining individuals, aligning the response and benefits through the Infrastructure or recovery efforts with the requirements of Mitigation Programs. All local civil rights statutes. boards and their participating charitable organizations receiving
______4 aid from the Emergency Food and 4. Effective communication. People Shelter Program are covered in a with special needs must be given like manner.11 information that is accessible, understandable, and timely. To Thus, it is important for emergency ensure that communication is planners and responders to understand effective, planners may have to the civil rights provisions that apply to provide additional support, such as special-needs populations during sign language interpreters through emergencies. A starting point for this on-site or video interpreting. understanding is grasping some of the Messages using simple language key principles that underlie civil rights construction can reach individuals legislation: with cognitive disabilities, and 1. No “one size fits all.” People with foreign-language translations may be special needs do not all require the needed to reach residents with same assistance, do not all have the limited English proficiency. same needs, and are most knowledgeable about their own COMMUNITY ENGAGEMENT IN THE needs. Thus, emergency planners PLANNING PROCESS should prepare for individuals with a Disaster planning is often handled variety of function-based needs by through a top-down approach, collaborating with community conducted for—rather than with—the organizations that are community. Although such an approach knowledgeable about those needs serves well during the crisis, it is and about the local resources that collaboration at the local level that are available. strengthens the foundation for 2. Inclusion. People with special needs successful disaster management. have the right to participate in, and Planning for the entire community receive the benefits of, emergency should involve a participatory and programs, services, and activities inclusive process. Emergency managers provided by governments, private must constantly ask themselves, “Who businesses, and nonprofit are we planning for?” Many planners are organizations in the most integrated finding that the involvement of various setting possible. In addition, the local organizations helps to identify the active involvement of community emergency-related needs of the representatives during each phase of community. emergency planning will help to Many nongovernmental (NGO) ensure the provision of appropriate organizations, including community, support. faith-based, and social service 3. Accessibility. Emergency programs, organizations and neighborhood services, and activities must have associations, have built strong the legally required features and/or connections and trust with the people qualities that ensure entrance to, they support. These organizations may participation in, and usability by be located in, and may work within, individuals with special needs. cultural communities such as Indian Ensuring such accessibility may tribes. Using both paid and volunteer require modifications to rules, labor, faith-based and community policies, practices, and procedures groups can often provide essential and without charge to the individual.
______5 specialized services that would not be American Red Cross, FEMA, DHS, and economically feasible for government NGOs are among the providers of a agencies to offer.12 For example, NGOs, variety of resources that can be Voluntary Organizations Active in accessed via the Web and toll-free Disaster (VOAD), and Citizen Corps phone numbers. volunteers can provide assistance with A preparedness message must developing personal preparedness recognize and reinforce the reality that plans, creating emergency go-kits and personal, family, workplace, and school shelter-in-place kits, or enrolling in an preparedness is essential for a prepared emergency registry service. community. Accordingly, encouraging In addition, there are private sector individuals with special needs to take entities, generally small businesses, that responsibility for their own safety and serve a variety of populations. These well-being to whatever extent they can entities may be home health care will benefit emergency managers and organizations; physical or occupational responders during an incident and therapists; organizations operating throughout the recovery process. group homes, nursing homes, or care Preparedness material should stress the centers for people with significant message of personal preparedness disabilities; or organizations planning and be conveyed via representing specific disability accessible advertising, brochures, and populations. By forming and maintaining special-needs networks within the a network of all these organizations, community. planners can learn how a given population receives emergency Securing Special-Needs Expertise information and can identify potential Increasingly, emergency managers are needs for assistance during the recognizing the importance of securing response or recovery phases. special-needs expertise during planning Assistance may include arrangements and operations activities. This can be for sign language interpreters in a done by reaching out to key community shelter, home health care workers, and representatives to assist in reviewing professionals with expertise in working plans and to participate in emergency with individuals who have cognitive or exercises. psychological disabilities). Engaging Emergency managers can draw from special-needs community organizations community representatives to establish can help planners promote personal a special-needs advisory committee. preparedness, secure subject matter The committee should consist of a expertise, and formalize agreements for cross-section of community residents disaster support. with special needs as well as representatives from the local Promoting Personal Preparedness emergency management agency, Promoting the message of personal service provider organizations, preparedness should be a priority in a advocacy groups, and local government community’s emergency planning agencies. An emergency manager can strategy. Many free sources of establish the special-needs advisory information are available to help the committee as a stand-alone entity, part elderly, individuals with disabilities, of the local disaster planning group, or a children, and people with limited English component of the local Citizen Corps proficiency create personal plans. The Council.
______6 Increasingly, emergency Partnering with independent living, management agencies are hiring consumer service, and advocacy permanent staff and/or contracting with organizations can extend the subject-matter experts to provide outreach to individuals with focused special-needs expertise within disabilities, helping them to plan the Incident Command System (ICS). ahead for sheltering in place or The ICS is the standardized on-scene evacuating from home, school, emergency management structure, workplace, or community venues. integrating facilities, equipment, Working with community groups to personnel, procedures, and convey public information in the communications. Many emergency primary languages of community managers are appointing a special members can greatly increase the needs advisor to provide guidance reach of preparedness messages. related to the impact of the incident on Engaging leaders from distinct the community and coordination of cultures can build community appropriate resources. This role ensures understanding and trust, mitigate that special needs issues are integrated backlash discrimination, and improve into emergency response operations. the investigation following a terrorist incident. Formalizing Community Partnerships Engaging community organizations Jurisdictions with the most success at to pre-identify accessible mass care planning for special-needs populations shelters can ensure that individuals have established formal relationships with limited mobility are not with a variety of community misdirected to medical facilities. organizations that provide a link to the special-needs populations they serve. Response By working together on an ongoing Educating media broadcasters basis to develop a joint response, regarding the Federal government agencies and community Communications Commission’s organizations will be better able to regulation requiring that emergency identify not only assets and capabilities alerts be issued in visual and aural but also opportunities for improvement formats helps to ensure that critical and cooperation. The players in this and time-sensitive information process should consider developing reaches community members who mutual aid agreements and memoranda are deaf and members who are of understanding (MOUs) that cover blind. procedures for sharing resources during Forging agreements with transit emergency events. providers can ensure that accessible Proactively forming partnerships with vehicles will be readily available to community organizations across all evacuate the elderly and individuals phases of emergency management can with physical disabilities. lead directly to improved life safety and Making advance arrangements with health outcomes for all affected suppliers of pharmaceuticals and segments of special-needs populations. durable medical equipment can help What follows are some examples of in the timely restoration of pre- partnerships: disaster levels of functional independence. Mitigation and Preparedness
______7 Involving advocates for children centers, nursing homes, and places of during first-responder training fosters worship. vigilance in protecting children who If emergency managers compile the have been separated from their numbers from various lists, often parents or guardians during referred to as the “list of lists” approach, emergencies. they will have an estimate of how many community residents may need additional response assistance, such as accessible transportation and sheltering. Recovery Although there may be some overlap Coordinating in advance with whereby individuals may appear on community organizations can help to multiple lists, there will also be some ensure that case management, individuals who require assistance mental health services, and during an emergency but do not use accessible housing are readily these service providers or agencies. available to individuals who are Emergency managers should also rebuilding their lives following the gather as much information as possible disaster. about the types of services that these Partnering with local agencies on individuals require, so that emergency aging can ensure that elderly staff can be adequately trained, persons have access to advocacy equipment acquired, and resources services that can protect them from allocated. The key to the “list of lists” is exploitation. cultivating relationships between Consulting with architects who have agencies and organizations before the expertise in accessibility standards disaster. It is also essential to keep can ensure that destroyed municipal these lists updated by conducting new buildings that are reconstructed are assessments at least annually. made fully accessible to all members In addition to assessments of overall of the community. need, some jurisdictions are establishing voluntary emergency PLANNING CONSIDERATIONS assistance registries—databases of All planning considerations should be individuals who meet the eligibility informed by a community demographic criteria (as established by the state, analysis. Emergency planners, in local, or tribal jurisdiction) for receiving collaboration with community members, emergency response services. can base their assessments on lists and Experience has shown that some information collected from multiple people may choose not to sign up for a sources within which individuals with variety of reasons, including fear or lack special needs are represented. These of information about who has access to sources may include U.S. census data, the data and how the information will be social services listings, dialysis centers, used. Where registries are maintained, Meals on Wheels, paratransit providers, participation should be voluntary, and health departments, utility providers, job the information should be kept access services, large-scale senior confidential and updated regularly. housing developments, congregate care Specific information from facilities, schools, county emergency assessments and registries may be alert e-mail lists, Medicaid lists, day care applied to geographic information systems (GIS) to map communities,
______8 facilities, and households where a list of the criteria for achieving persons with special needs reside accessibility? relative to response assets and hazards. Does the plan stipulate that GIS maps can expedite the process of durable medical products be identifying what areas of a community provided and identify suppliers for require additional resources, and what those products? types of resources they may need. Does the plan call for the Below are examples of questions provision of subject-matter experts to that can help emergency managers assist shelter operations on matters identify function-based needs that may related to disability, cultural diversity, exist across the community. The five elderly populations, and children? functions are those mentioned above: maintaining independence, Communication communication, transportation, Does the target audience for supervision, and medical care. When public education campaigns include developing an EOP, the manager people from a broad range of should address these needs throughout special-needs populations? the plan, including the base plan, How are emergency managers emergency support functions, annexes, reaching non-English-speaking and corresponding standard operating migrant populations? procedures. Some of the questions Have religious or ethnic leaders raised will cross functions. For example, been identified who are willing to elements that fall under transportation transmit important information in a and supervision may be closely tied to timely manner to their communities? maintaining independence. How will disaster-related information reach individuals who do Maintaining Independence not self-identify as having a Does the plan ensure that people disability? are not separated from mobility How can the messages be devices, medication, other durable crafted to minimize backlash against medical products, and/or service cultural or ethnic groups following a animals? terrorist event? How does the plan ensure that Does the plan identify alternative evacuees are relocated to shelters or methods of communication—both for facilities in the least restrictive warnings and for ongoing settings, but with appropriate levels communication about the disaster— of care? for deaf and hard-of-hearing Does the plan identify MOUs that populations and for individuals with have been established with vendors limited English proficiency? of medication, providers of assistive Does the plan specify the technology, sign language provision of accessible formats (e.g., interpreters and translators, and large print, Braille, and alternative child care providers? languages) for emergency and Does the plan stipulate the need disaster related messages and to select accessible facilities for instructions? sheltering, and does it give a In the event of a public health definition of accessible that includes emergency, which populations would
______9 be most at risk of not receiving Medical Care critical information? Is consideration given to resolving issues of medical licensing Transportation across state lines? Does the plan identify accessible Does the plan identify surge transportation options for people with support for those individuals whose disabilities who depend on public disabilities or medical needs are transportation, or for people who do exacerbated by the incident or who not own or cannot drive their own are injured as a result of it? vehicles? Does the plan establish Are alternative transit procedures for the daily reporting of mechanisms (e.g., trains, school and numbers of people with disabilities over-the-road buses, planes) in and people receiving medical place for mass evacuation? treatment, and does it specify the Does the plan consider the types of assistance needed? transportation needs of individuals Is consideration given to the residing in shelters or temporary provision of prescription drugs to housing when it is time to return help individuals with chronic health them to their communities? conditions (e.g., high blood pressure, Does the plan call for the diabetes, seizures, depression, and establishment and maintenance of a schizophrenia)? registry that identifies people who Is consideration given to tracking will need additional assistance? people when they are placed in nursing homes or other institutional Supervision settings during a disaster? How does the plan ensure that Does the plan reflect the need for people who require supervision or post-disaster mental health support? assistance (e.g., sheltering in place, evacuation, returning to the CONCLUSION community) will receive it throughout Emergency planning can be hampered the response phase? by uncertainties about how to identify What is the plan to support special-needs populations and how to people who need assistance with address the needs for assistance across activities of daily living (e.g., several distinct groups within the individuals with disabilities, the community. However, adopting a elderly, or children) during function-based approach to planning for evacuation or sheltering in place? special-needs populations allows Is there a plan to address the planners to group overall response needs of unsupervised minors during resources on the basis of core functional all phases of the disaster? areas, including maintaining Have MOUs been established independence, communication, with home health care agencies to transportation, supervision, and medical assist individuals who function care. A comprehensive strategy to reach independently in their homes but are individuals with appropriate support in need of assistance when outside focuses on what specific resources will their familiar environment? be needed to sustain or restore pre- disaster capabilities.
______10 This paradigm shift in emergency planning furthers life safety and health objectives, creates efficiencies in allocating resources, and aligns emergency management efforts with the principles of civil rights laws. It hinges on engaging special-needs community organizations in efforts to promote personal preparedness, secure subject matter expertise, and formalize agreements for disaster support. As a result of a function-based approach to planning, emergency managers can build special-needs considerations into all aspects of the EOP, thus raising the community’s capacity to respond to and recover from an emergency.
______11 ENDNOTES
______12 1 Kristen M. Crossett et al., Population Trends along the Coastal United States: 1980–2008 (Washington, D.C.: National Oceanographic and Atmospheric Administration, U.S. Department of Commerce, September 2004), 1, oceanservice.noaa.gov/programs/mb/pdfs/coastal_pop_trends_complete.pdf (accessed Match 15, 2008).
2 AARP, We Can Do Better: Lessons Learned for Protecting Older Persons in Disaster (May 2006). www.aarp.org/research/assistance/lowincome/better.html (accessed March 15, 2008).
3 Centers for Disease Control and Prevention, National Center for Health Statistics, Home Health Care, www.cdc.gov/nchs/fastats/homehealthcare.htm (accessed March 15, 2008).
4 U.S. Government Accountability Office, Transportation-Disadvantaged Populations: Actions Needed to Clarify Responsibilities and Increase Preparedness for Evacuations (Washington, D.C.: GAO, December 2006), 2, www. gao.gov/new.items/d0744.pdf (accessed March 15, 2008).
5 U.S. Bureau of the Census, Language Use and English-Speaking Ability: 2000 (October 2003), 2, www.census.gov/prod/2003pubs/c2kbr-29.pdf (accessed March 15, 2008).
6 U.S. Department of Homeland Security (DHS), Nationwide Plan Review Phase 2 Report (Washington, D.C.: DHS, June 16, 2006), 41, dhs.gov/xlibrary/assets/Prep_NationwidePlanReview.pdf (accessed March 15, 2008).
7 FEMA, Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing, and Human Services, www.fema.gov/oer/reference/index.shtm (accessed March 15, 2008).
8 The concept of a function-based approach to defining special needs populations has been developed by June Isaacson Kailes, disability policy consultant, Los Angeles, California. See June Isaacson Kailes and Alexandra Enders, “Moving Beyond ‘Special Needs’: A Function-Based Framework for Emergency Management and Planning,” Journal of Disability Policy Studies 17, no. 4 (2007): 230–237.
9 FEMA, National Response Framework Resource Center, Glossary, www.fema.gov/emergency/nrf/glossary.htm#S (accessed March 15, 2008).
10 Although it is recognized that significant emergency planning must be done for incarcerated populations, this group cannot be integrated into general population planning. Therefore, these individuals are not included in a function-based definition.
11 FEMA, Robert T. Stafford Disaster Relief and Emergency Assistance Act (Public Law 93-288) as amended, www.fema.gov/about/stafact.shtm (accessed March 15, 2008).
12 Rural Assistance Center, “Faith Based Initiative” (2006), raconline.org/info_guides/faith/ (accessed March 15, 2008).
______Through their work at the Department of Homeland Security Office for Civil Rights and Civil Liberties, Brian Parsons and Debra Fulmer oversee outreach to state, local, and tribal governments and non-government organizations to promote proactive emergency planning for special needs populations. In addition, they examine the impact of homeland security policy on civil rights and civil liberties.