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 response was ad hoc and largely focused on the repair of damaged infrastructure, through the present-day emergency management focus on "readiness," emergency planning has inadequately considered populations who need additional support. This fact was evident during the California wildfires in 2003 and when Hurricane Katrina devastated the Gulf Coast in 2005. In both cases, a substantial number of individuals did not receive appropriate warning, were unable to access shelters, went without medical intervention, or, at worst, perished.

The U.S. population is aging, growing increasingly diverse, and more frequently receiving health care at home. In addition, an increasing number of Americans are migrating to areas that are at a higher risk of hazard. As of 2003, 53 percent of the nation's population lived in the 673 U.S. coastal counties, an increase of 33 million people since 1980.¹

To be able to assess the resources needed for the entire community when a disaster strikes, emergency managers must ensure that demographic trends are factored into their emergency plans. For example,

• An estimated 13 million individuals age 50 or older in the United States will need evacuation assistance, and for about half of them, such assistance will be required from someone outside of their household.²
• More than 1.4 million people in the United States receive home health care.³
• Populations described as "transportation disadvantaged"—those who do not have access to a personal vehicle or are unable to drive—may also require assistance during emergencies. The 2000 Census reports that in the top-ten carless cities, between 29 percent and 56 percent of the households are without a vehicle.⁴
• Eighteen percent of the total U.S. population aged 5 and older speak a language other than English at home, a finding that highlights the need to ensure that emergency communications are also geared to the non-English-speaking residents in the community.⁵

Many of the individuals accounted for in these statistics are part of mainstream communities and function independently under normal situations. In an emergency situation, however, they may need assistance and are thus identified as "special needs populations."

The federal government, in coordination with its state, local, tribal, and nongovernment partners, is undertaking key initiatives to strengthen planning for the safety and security of individuals with special needs. For example,

• In July 2004, President George W. Bush issued Executive Order 13347, charging federal agencies to focus on individuals with disabilities when developing emergency preparedness plans. This order also established the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities to guide the work across governmental and nongovernmental sectors.
• In June 2006, the U.S. Department of Homeland Security (DHS), in cooperation with the U.S. Department of Transportation, released the Nationwide Plan Review Phase 2 Report. Among other things, the report assessed the degree to which state and urban areas have integrated disability- and aging-related issues into their emergency operations plans (EOPs), and found that "substantial improvement is necessary to integrate people with disabilities in emergency planning and readiness."⁶ Moreover, during the plan review process, emergency managers were consistently requesting technical assistance to guide the identification and incorporation of individuals with disabilities and other special-needs populations into emergency planning.
• Pursuant to the 2006 Post Katrina Emergency Management Reform Act, FEMA issued its guidelines for accommodating individuals with disabilities in disasters⁷ and established the role of disability coordinator within FEMA management.
• In 2007, the Homeland Security Grants Program incorporated language that focuses on planning for special-needs populations.
• In 2008, the revised National Response Framework (NRF) and the National Incident Management System (NIMS) established considerations related to special needs throughout the intergovernmental operational protocols.
• DHS/FEMA is finalizing its Emergency Management Planning Guide for Special Needs Populations as a tool for local, state, and tribal emergency managers to use in the development of EOPs that cover all populations within the community.

FUNCTION-BASED PLANNING

The term "special needs" is well established in the emergency management vocabulary, yet it is an ambiguous term that has been used inconsistently to define multiple populations, and sometimes it is used simply as a substitute for terms such as "people with disabilities" and "the elderly." Thus, state legislators and emergency planners are finding it advantageous to establish a consistent statewide definition for the term in order to build a common understanding that can guide local jurisdictions in their planning processes and result in the efficient coordination of resources across local, state, tribal, and regional entities.

Responding to the recommendations of the Nationwide Plan Review, the federal government introduced within the NRF glossary a definition of "special-needs populations" that local, state, and tribal governments may adopt for use in developing their EOPs. Because mere labeling (individuals with disabilities, children, elderly, etc.) does not convey useful information to the emergency management professional about the precise needs of group members, the NRF definition, quoted below, is function based, reflecting a population's need rather than its condition, diagnosis, or label.⁸ Accordingly, special-needs populations are

populations whose members may have additional needs before, during, and after an incident in functional areas, including but not limited to: maintaining independence, communication, transportation, supervision, and medical care. Individuals in need of additional response assistance may include those who have disabilities; who live in institutionalized settings; who are elderly; who are children; who are from diverse cultures; who have limited English proficiency or are non-English speaking; or who are transportation disadvantaged [emphasis added].⁹

Preparing for the function-based needs of the community is a paradigm shift in emergency planning in that it fosters the development of an operational set of predictable supports. The five functional areas in which individuals with special needs may require support during and following a disaster are described as follows:

• Maintaining Independence. Individuals who rely on assistance in order to be independent in daily activities may lose this support during an emergency. This support may include supplies (diapers, catheters, ostomy materials, etc.), durable medical equipment (wheelchairs, walkers, scooters, etc.), and attendants or caregivers.
• Communication. Individuals who have limitations that interfere with the receipt of and response to information may need that information provided in ways they can understand and use, and from authorities they trust. They may not be able to hear verbal announcements, see directional signage, or understand how to get assistance because of hearing, vision, speech, cognitive, 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., vehicles equipped with lifts or otherwise suitable for transporting individuals who use oxygen) and mass transportation.
• Supervision. Individuals who rely on caregivers, family, or friends in daily life may be unable to cope in a new environment, particularly if these individuals are children or have intellectual or psychiatric disabilities.
• Medical care. Individuals who are not self-sufficient or who do not have adequate support from caregivers, family, or friends may need trained medical assistance with managing unstable, terminal, or contagious conditions; managing intravenous therapy, tube feeding, and vital signs; receiving dialysis, oxygen, and suction administration; managing wounds; and operating power-dependent equipment to sustain life.

The function-based approach to assessing needs furthers life safety and health objectives during each phase of emergency planning. It provides a strategy for identifying the resources that will be necessary to maximize residents' health and safety following an incident, while at the same time it limits the need to plan for multiple distinct populations. Planners can group overall response resources in terms of function, with the ultimate goal of expediting community recovery. This approach to identifying and allocating resources reduces the chance that a population will be overlooked during any phase of emergency management.¹⁰

In particular, a comprehensive strategy to provide support (e.g., warnings, transportation, assistive technology, medicine, or food and water) to individuals with special needs places the focus on identifying the specific resources that will be needed to sustain or restore the pre-disaster capabilities of those individuals. Recognizing who is in the community, where they are located, and what it takes to support them increases the likelihood that supplies will be deployed to the appropriate location at the optimum time. Surplus resources—whether materials, knowledge, or personnel—may be shared with other jurisdictions. Conversely, gaps in resource allocation may indicate a need to form creative partnerships with local community organizations. The function-based approach is easily adaptable to scalable planning that meets the needs of different jurisdictions depending on such factors as size, risks, and potential hazards.

ALIGNMENT WITH CIVIL RIGHTS STATUTES

Securing additional supports from the community enables many individuals with special needs to remain within the general population response and recovery structures, freeing up assets to address individuals who have more critical needs. This approach furthers the independence and inclusion of individuals, aligning the response and recovery efforts with the requirements of civil rights statutes.

Building on the freedoms guaranteed by the Constitution, Congress has enacted several laws aimed at protecting the civil rights of populations that historically have been subjected to discrimination. Federal civil rights legislation prohibits discrimination based on characteristics including a person's race, color, national origin, religion, sex, age, and disability. Key civil rights legislation includes the landmark Civil Rights Act of 1964, the Fair Housing Act of 1968, the Higher Education Amendments of 1972, the Age Discrimination Act of 1975, the Rehabilitation Act of 1973, and the Americans with Disabilities Act of 1990.

Federal civil rights laws apply to emergency management agencies as they operate within governmental and nongovernmental sectors. In addition, discrimination during presidentially declared disasters is specifically prohibited by Sections 308—309 of the Robert T. Stafford Disaster Relief and Emergency Assistance Act of 1988, as amended.

No person shall, on the grounds of race, color, national origin, sex, religion, nationality, age, disability, limited English proficiency, or economic status, be denied the benefits of, be deprived of participation in, or be discriminated against in any program or activity conducted by or receiving financial assistance from FEMA...These prohibitions extend to all entities receiving Federal financial assistance from FEMA, including state and local governments, educational institutions, and any organization of any type obtaining benefits through the Infrastructure or Mitigation Programs. All local boards and their participating charitable organizations receiving aid from the Emergency Food and Shelter Program are covered in a like manner.¹¹

Thus, it is important for emergency planners and responders to understand the civil rights provisions that apply to special-needs populations during emergencies. A starting point for this understanding is grasping some of the key principles that underlie civil rights legislation:

1. No "one size fits all." People with special needs do not all require the same assistance, do not all have the same needs, and are most knowledgeable about their own needs. Thus, emergency planners should prepare for individuals with a variety of function-based needs by collaborating with community organizations that are knowledgeable about those needs and about the local resources that are available.
2. Inclusion. People with special needs have the right to participate in, and receive the benefits of, emergency programs, services, and activities provided by governments, private businesses, and nonprofit organizations in the most integrated setting possible. In addition, the active involvement of community representatives during each phase of emergency planning will help to ensure the provision of appropriate support.
3. Accessibility. Emergency programs, services, and activities must have the legally required features and/or qualities that ensure entrance to, participation in, and usability by individuals with special needs. Ensuring such accessibility may require modifications to rules, policies, practices, and procedures without charge to the individual.
4. Effective communication. People with special needs must be given information that is accessible, understandable, and timely. To ensure that communication is effective, planners may have to provide additional support, such as sign language interpreters through on-site or video interpreting. Messages using simple language construction can reach individuals with cognitive disabilities, and foreign-language translations may be needed to reach residents with limited English proficiency.

COMMUNITY ENGAGEMENT IN THE PLANNING PROCESS

Disaster planning is often handled through a top-down approach, conducted for—rather than with—the community. Although such an approach serves well during the crisis, it is collaboration at the local level that strengthens the foundation for successful disaster management. Planning for the entire community should involve a participatory and inclusive process. Emergency managers must constantly ask themselves, "Who are we planning for?" Many planners are finding that the involvement of various local organizations helps to identify the emergency-related needs of the community.

Many nongovernmental (NGO) organizations, including community, faith-based, and social service organizations and neighborhood associations, have built strong connections and trust with the people they support. These organizations may be located in, and may work within, cultural communities such as Indian tribes. Using both paid and volunteer labor, faith-based and community groups can often provide essential and specialized services that would not be economically feasible for government agencies to offer.¹² For example, NGOs, Voluntary Organizations Active in Disaster (VOAD), and Citizen Corps volunteers can provide assistance with developing personal preparedness plans, creating emergency go-kits and shelter-in-place kits, or enrolling in an emergency registry service.

In addition, there are private sector entities, generally small businesses, that serve a variety of populations. These entities may be home health care organizations; physical or occupational therapists; organizations operating group homes, nursing homes, or care centers for people with significant disabilities; or organizations representing specific disability populations. By forming and maintaining a network of all these organizations, planners can learn how a given population receives emergency information and can identify potential needs for assistance during the response or recovery phases. Assistance may include arrangements for sign language interpreters in a shelter, home health care workers, and professionals with expertise in working with individuals who have cognitive or psychological disabilities). Engaging special-needs community organizations can help planners promote personal preparedness, secure subject matter expertise, and formalize agreements for disaster support.

Promoting Personal Preparedness
Promoting the message of personal preparedness should be a priority in a community's emergency planning strategy. Many free sources of information are available to help the elderly, individuals with disabilities, children, and people with limited English proficiency create personal plans. The American Red Cross, FEMA, DHS, and NGOs are among the providers of a variety of resources that can be accessed via the Web and toll-free phone numbers.

A preparedness message must recognize and reinforce the reality that personal, family, workplace, and school preparedness is essential for a prepared community. Accordingly, encouraging individuals with special needs to take responsibility for their own safety and well-being to whatever extent they can will benefit emergency managers and responders during an incident and throughout the recovery process. Preparedness material should stress the message of personal preparedness planning and be conveyed via accessible advertising, brochures, and special-needs networks within the community.

Securing Special-Needs Expertise
Increasingly, emergency managers are recognizing the importance of securing special-needs expertise during planning and operations activities. This can be done by reaching out to key community representatives to assist in reviewing plans and to participate in emergency exercises.

Emergency managers can draw from community representatives to establish a special-needs advisory committee. The committee should consist of a cross-section of community residents with special needs as well as representatives from the local emergency management agency, service provider organizations, advocacy groups, and local government agencies. An emergency manager can establish the special-needs advisory committee as a stand-alone entity, part of the local disaster planning group, or a component of the local Citizen Corps Council.

Increasingly, emergency management agencies are hiring permanent staff and/or contracting with subject-matter experts to provide focused special-needs expertise within the Incident Command System (ICS). The ICS is the standardized on-scene emergency management structure, integrating facilities, equipment, personnel, procedures, and communications. Many emergency managers are appointing a special needs advisor to provide guidance related to the impact of the incident on the community and coordination of appropriate resources. This role ensures that special needs issues are integrated into emergency response operations.

Formalizing Community Partnerships
Jurisdictions with the most success at planning for special-needs populations have established formal relationships with a variety of community organizations that provide a link to the special-needs populations they serve. By working together on an ongoing basis to develop a joint response, government agencies and community organizations will be better able to identify not only assets and capabilities but also opportunities for improvement and cooperation. The players in this process should consider developing mutual aid agreements and memoranda of understanding (MOUs) that cover procedures for sharing resources during emergency events.

Proactively forming partnerships with community organizations across all phases of emergency management can lead directly to improved life safety and health outcomes for all affected segments of special-needs populations. What follows are some examples of partnerships:

Mitigation and Preparedness

• Partnering with independent living, consumer service, and advocacy organizations can extend the outreach to individuals with disabilities, helping them to plan ahead for sheltering in place or evacuating from home, school, workplace, or community venues.
• Working with community groups to convey public information in the primary languages of community members can greatly increase the reach of preparedness messages.
• Engaging leaders from distinct cultures can build community understanding and trust, mitigate backlash discrimination, and improve the investigation following a terrorist incident.
• Engaging community organizations to pre-identify accessible mass care shelters can ensure that individuals with limited mobility are not misdirected to medical facilities.

Response

• Educating media broadcasters regarding the Federal Communications Commission's regulation requiring that emergency alerts be issued in visual and aural formats helps to ensure that critical and time-sensitive information reaches community members who are deaf and members who are blind.
• Forging agreements with transit providers can ensure that accessible vehicles will be readily available to evacuate the elderly and individuals with physical disabilities.
• Making advance arrangements with suppliers of pharmaceuticals and durable medical equipment can help in the timely restoration of pre-disaster levels of functional independence.
• Involving advocates for children during first-responder training fosters vigilance in protecting children who have been separated from their parents or guardians during emergencies.

Recovery

• Coordinating in advance with community organizations can help to ensure that case management, mental health services, and accessible housing are readily available to individuals who are rebuilding their lives following the disaster.
• Partnering with local agencies on aging can ensure that elderly persons have access to advocacy services that can protect them from exploitation.
• Consulting with architects who have expertise in accessibility standards can ensure that destroyed municipal buildings that are reconstructed are made fully accessible to all members of the community.

PLANNING CONSIDERATIONS

All planning considerations should be informed by a community demographic analysis. Emergency planners, in collaboration with community members, can base their assessments on lists and information collected from multiple sources within which individuals with special needs are represented. These sources may include U.S. census data, social services listings, dialysis centers, Meals on Wheels, paratransit providers, health departments, utility providers, job access services, large-scale senior housing developments, congregate care facilities, schools, county emergency alert e-mail lists, Medicaid lists, day care centers, nursing homes, and places of worship.

If emergency managers compile the numbers from various lists, often referred to as the "list of lists" approach, they will have an estimate of how many community residents may need additional response assistance, such as accessible transportation and sheltering. Although there may be some overlap whereby individuals may appear on multiple lists, there will also be some individuals who require assistance during an emergency but do not use these service providers or agencies. Emergency managers should also gather as much information as possible about the types of services that these individuals require, so that emergency staff can be adequately trained, equipment acquired, and resources allocated. The key to the "list of lists" is cultivating relationships between agencies and organizations before the disaster. It is also essential to keep these lists updated by conducting new assessments at least annually.

In addition to assessments of overall need, some jurisdictions are establishing voluntary emergency assistance registries—databases of individuals who meet the eligibility criteria (as established by the state, local, or tribal jurisdiction) for receiving emergency response services. Experience has shown that some people may choose not to sign up for a variety of reasons, including fear or lack of information about who has access to the data and how the information will be used. Where registries are maintained, participation should be voluntary, and the information should be kept confidential and updated regularly.

Specific information from assessments and registries may be applied to geographic information systems (GIS) to map communities, facilities, and households where persons with special needs reside relative to response assets and hazards. GIS maps can expedite the process of identifying what areas of a community require additional resources, and what types of resources they may need.

Below are examples of questions that can help emergency managers identify function-based needs that may exist across the community. The five functions are those mentioned above: maintaining independence, communication, transportation, supervision, and medical care. When developing an EOP, the manager should address these needs throughout the plan, including the base plan, emergency support functions, annexes, and corresponding standard operating procedures. Some of the questions raised will cross functions. For example, elements that fall under transportation and supervision may be closely tied to maintaining independence.

Maintaining Independence

• Does the plan ensure that people are not separated from mobility devices, medication, other durable medical products, and/or service animals?
• How does the plan ensure that evacuees are relocated to shelters or facilities in the least restrictive settings, but with appropriate levels of care?
• Does the plan identify MOUs that have been established with vendors of medication, providers of assistive technology, sign language interpreters and translators, and child care providers?
• Does the plan stipulate the need to select accessible facilities for sheltering, and does it give a definition of accessible that includes a list of the criteria for achieving accessibility?
• Does the plan stipulate that durable medical products be provided and identify suppliers for those products?
• Does the plan call for the provision of subject-matter experts to assist shelter operations on matters related to disability, cultural diversity, elderly populations, and children?

Communication

• Does the target audience for public education campaigns include people from a broad range of special-needs populations?
• How are emergency managers reaching non-English-speaking migrant populations?
• Have religious or ethnic leaders been identified who are willing to transmit important information in a timely manner to their communities?
• How will disaster-related information reach individuals who do not self-identify as having a disability?
• How can the messages be crafted to minimize backlash against cultural or ethnic groups following a terrorist event?
• Does the plan identify alternative methods of communication—both for warnings and for ongoing communication about the disaster—for deaf and hard-of-hearing populations and for individuals with limited English proficiency?
• Does the plan specify the provision of accessible formats (e.g., large print, Braille, and alternative languages) for emergency and disaster related messages and instructions?
• In the event of a public health emergency, which populations would be most at risk of not receiving critical information?

Transportation

• Does the plan identify accessible transportation options for people with disabilities who depend on public transportation, or for people who do not own or cannot drive their own vehicles?
• Are alternative transit mechanisms (e.g., trains, school and over-the-road buses, planes) in place for mass evacuation?
• Does the plan consider the transportation needs of individuals residing in shelters or temporary housing when it is time to return them to their communities?
• Does the plan call for the establishment and maintenance of a registry that identifies people who will need additional assistance?

Supervision

• How does the plan ensure that people who require supervision or assistance (e.g., sheltering in place, evacuation, returning to the community) will receive it throughout the response phase?
• What is the plan to support people who need assistance with activities of daily living (e.g., individuals with disabilities, the elderly, or children) during evacuation or sheltering in place?
• Is there a plan to address the needs of unsupervised minors during all phases of the disaster?
• Have MOUs been established with home health care agencies to assist individuals who function independently in their homes but are in need of assistance when outside their familiar environment?

Medical Care

• Is consideration given to resolving issues of medical licensing across state lines?
• Does the plan identify surge support for those individuals whose disabilities or medical needs are exacerbated by the incident or who are injured as a result of it?
• Does the plan establish procedures for the daily reporting of numbers of people with disabilities and people receiving medical treatment, and does it specify the types of assistance needed?
• Is consideration given to the provision of prescription drugs to help individuals with chronic health conditions (e.g., high blood pressure, diabetes, seizures, depression, and schizophrenia)?
• Is consideration given to tracking people when they are placed in nursing homes or other institutional settings during a disaster?
• Does the plan reflect the need for post-disaster mental health support?

CONCLUSION

Emergency planning can be hampered by uncertainties about how to identify special-needs populations and how to address the needs for assistance across several distinct groups within the community. However, adopting a function-based approach to planning for special-needs populations allows planners to group overall response resources on the basis of core functional areas, including maintaining independence, communication, transportation, supervision, and medical care. A comprehensive strategy to reach individuals with appropriate support focuses on what specific resources will be needed to sustain or restore pre-disaster capabilities.

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.

END NOTES

¹Kristen 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 (PDF, 54 pgs, 4.7M) (accessed Match 15, 2008).

²AARP, We Can Do Better: Lessons Learned for Protecting Older Persons in Disaster (May 2006). www.aarp.org/research/ppi/ltc/Other/articles/better.html (accessed March 15, 2008).

³Centers for Disease Control and Prevention, National Center for Health Statistics, Home Health Care, www.cdc.gov/nchs/fastats/homehealthcare.htm (accessed March 15, 2008).

⁴U.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 (PDF, 71 pgs, 1.2M) (accessed March 15, 2008).

⁵U.S. Bureau of the Census, Language Use and English-Speaking Ability: 2000 (October 2003), 2, www.census.gov/prod/2003pubs/c2kbr-29.pdf (PDF, 11 pgs, 481K) (accessed March 15, 2008).

⁶U.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 (PDF, 174 pgs, 3.8MB) (accessed March 15, 2008).

⁷FEMA, 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).

⁸The 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.

⁹FEMA, National Response Framework Resource Center, Glossary, www.fema.gov/emergency/nrf/glossary.htm#S (accessed March 15, 2008).

¹⁰Although 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.

¹¹FEMA, 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).

¹²Rural 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.