​FOR THE DISABLED AND THEIR ADVOCATES, the story of emergency management begins with a woman named Benilda Caixeta. An immigrant from Brazil paralyzed by muscular dystrophy, Caixeta was a prolific volunteer and leader among disability advocates in her adopted hometown of New Orleans. Her efforts were well known and resulted in a citation for her work from then-Louisiana Governor Kathleen Blanco in 2004.

As Hurricane Katrina bore down on the U.S. Gulf Coast late in August 2005, Caixeta, 51, contacted an accessible transportation provider and made arrangements for a ride to a shelter. That ride never arrived. When the storm hit the city on August 29, Caixeta called various government agencies and friends seeking help. Soon, the levee containing the Industrial Canal running alongside her Ninth Ward neighborhood failed. A week later, Caixeta’s wheelchair and her dead body were found floating inside her home.

The aftermath of Hurricane Katrina not only redefined the scope of catastrophe for which authorities must prepare, it laid bare the stark consequences when the concerns of those with special needs are not addressed. These populations include the disabled, the elderly, those without access to automobiles, and those outside the reach of basic crisis communications. Assisting them, experts say, requires inclusive planning, exhaustive outreach, and an informed approach to privacy and federal disability law.

Who’s Included
The first step toward ensuring accessible evacuations is defining special needs populations, says Barbara Citarella, RN, president of RBC Limited and a consultant to the Federal Emergency Management Agency (FEMA) on serving special needs populations. It’s a more inclusive category than one might assume.

FEMA, in its National Incident Management System Resource Center glossary, defines special needs populations as “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 who are non-English speaking; or who are transportation disadvantaged.”

Advocates and government agencies increasingly use the term “accessibility” and “functional needs” populations to refer to both the disabled and the broader special needs population.

Assessment
After understanding who meets the definition of a special-needs population, the next step is assessment. That includes identifying who fits within that population in a given jurisdiction, where they are located, and what their specific needs are. This task is challenging, and it is a job that is never done, says Mark Sloan of Harris County (Texas) Homeland Security and Emergency Management, which serves the Houston region’s 4 million residents. “You never really check the box and say you’ve completed that,” Sloan says.

Who. Identifying the special-needs persons within a jurisdiction and reaching out to them as a part of the planning process is critical. This is done in part through partners and stakeholders, including government agencies, charities, and healthcare institutions. Emergency managers must also remember to reach out to independent individuals who may not be affiliated with any of these stakeholder groups.

Individuals. To access individuals unaffiliated with partner organizations, many states and jurisdictions have developed opt-in registries for residents who require assistance in evacuations. While some emergency management veterans argue that those voluntary registries are a waste of time and resources, others use them and say they work.

Richard Devylder, senior advisor for accessible transportation at the U.S. Department of Transportation and former special advisor to the secretary of the California Emergency Management Agency, is one of those who sees no value in the opt-in registries. Because they are completely voluntary, he notes, they can only accumulate data from members of the special needs population who are aware of them and who are willing to share data, directly or indirectly, with government agencies.

Once a registry is established and populated with data, agencies face the ongoing task of keeping it updated. As Mike Evans, deputy director of the Mobile County (Alabama) Emergency Management Agency notes, a database is “only as good as the data that’s in it,” and contact information and personal circumstances often change between the time a person registers and when disaster strikes.

Still, an opt-in registry may be better than nothing. In Texas, the state Transportation Assistance Registry is coordinated by the United Way of Texas. The public registers through the state’s free 211 information line, which is administered by the Texas Health and Human Services Commission. The United Way compiles the information provided and forwards it annually to emergency management agencies at the county level. To ensure timeliness and accuracy, county agencies follow up by marketing the registry and taking steps to confirm the data periodically with residents.

For example, Galveston County, Texas, which covers the Gulf Coast areas of the Bolivar Peninsula and Galveston Island, including the city of Galveston, has roughly 3,000 county residents who have opted in, explains County Emergency Management Coordinator Charlie Kelly. Once each year, Kelly’s office calls every phone number in the registry. It’s a labor-intensive process but the results show how important the effort is: some years, callers find that only 10 percent of the numbers registered are still current.

In advance of hurricane season each year, county officials hold a huge public gathering to get the word out. To encourage attendance, the event is held on the beach and billed as “fun for the whole family.” Among the attractions is an aerial rescue demonstration by the U.S. Coast Guard, says Kelly. Attendees are reminded to update data in the registry and to have neighbors and relatives with special needs do the same.

When an evacuation is ordered in Galveston County—usually a couple days before a major storm is scheduled to make landfall—the county calls everyone in the special-needs registry and instructs them to report to designated embarkation points from where they will be transported on state buses to inland shelters.

If they are disabled or cannot make it to the pick-up point themselves, an accessible county transit bus will pick them up. And if the resident has special medical needs, first responders will pick them up and transport them via ambulance. The process was activated prior to the arrival of Hurricane Ike in September 2008, and it worked as planned, Kelly says.

After hard lessons learned from Katrina, New Orleans established a similar registry in 2008 as part of its City Assisted Evacuation Program (CAEP). The program contributed to a largely successful evacuation in advance of Hurricane Gustav in August of the same year. CAEP registration data, for example, was used to select locations for 18 evacuation transportation hubs in the city before Gustav, says John Kiefer, a public administration professor at the University of New Orleans who studies the city’s handling of mass evacuations post-Katrina.

Gustav was not without its problems and lessons-learned, Kiefer says. For example, registration for CAEP, which city residents can do either online or by dialing 311, was initially steady, but surged enormously as Gustav approached. Government phone lines devoted to 311 and CAEP were overwhelmed, Kiefer says. Officials learned that the city needed to more aggressively market CAEP to residents, emphasizing that they shouldn’t wait until a storm was imminent to register.

Additionally, when the city’s first responders and volunteers from the region’s evacuteer.org organization canvassed the city to round up CAEP registrants who lacked access to transportation, many declined to leave because they had elderly or disabled relatives elsewhere who either refused to leave or had not arranged for transportation. A potential solution Kiefer suggests is organizing CAEP registry data based not on individuals or even households, but on families.

Partners. Given the limitations of reaching special-needs individuals through voluntary registration, it is critical to work with organizational stakeholders to maximize outreach to the special-needs population in a jurisdiction. Emergency response managers can do this by reaching out to their partner government agencies that serve those populations, from social services to health and mental health agencies. Emergency managers must also reach out to leaders in various private organizations and industries that serve and represent special-needs communities, explains Georgianna Armstrong, emergency management coordinator for Kern County, California, whose efforts Devylder points to as a national model. Included in the latter category are groups such as hospitals, nursing homes, home healthcare providers, charitable organizations, and advocacy groups.

What. After identifying who in a jurisdiction qualifies as a special-needs person or organization, the next step is to work with those stakeholders to determine their needs.

Crisis management authorities can use planning to forge relationships across agencies and among public and private sector participants. Similarly, security professionals and other first responders involved in evacuation planning at a facility or for a locality should use the planning process to forge relationships with special needs populations and assess needs.

Kern County has used this approach. For example, during development of a dam-failure evacuation plan, officials established a primary committee to oversee the process. Leadership established three subcommittees representing different segments of the special needs population: the medically fragile or mobility challenged, the cognitive or sensory challenged, and the “resource challenged,” generally referring to residents without access to cars. Each subcommittee includes not just advocates but also members of the populations they target. Representatives with special needs were sought out and invited to participate by relevant social service agencies and organizations.

The result was eye opening, says Armstrong, who like her peers had feared friction and poor communication. Those fears proved unfounded. Government planners were thrilled to have the special needs community’s input, while the community didn’t know that emergency managers wanted it. “They were glad someone asked,” she says.

The subcommittees and their members served primarily to voice concerns and highlight needs to members of the primary committee, which drafted the plan that was recently approved by the county’s board of supervisors. Throughout 2011 and 2012, the county will exercise and test this plan, and the subcommittees will be called on to recruit members of the accessibility and functional needs communities to participate in the drills.

The exercises, Armstrong says, are critical to highlight any lingering gaps in plans and services. “We can’t guess what their needs are,” she says.

The collaboration must carry on throughout the emergency management process, up to and including event response, Devylder says. He recommends that every emergency operations center (EOC) include an advocate for special needs populations. That person should either have a background in advocacy or be a member of the special needs community “with the expertise and responsibility to ask hard questions,” he says.

Where and how. It’s all well and good to get a list of the special needs population and to know what their requirements are, but exactly how will those needs be accommodated? With regard to the evacuation itself, many jurisdictions have a two-pronged approach: they make fairly concrete plans to assist in evacuations of institutions like hospitals and assisted-living facilities but must rely on partner organizations in the community to target special needs populations living independently in the community.

Then there are the additional needs that will arise once those persons have been evacuated to shelters or temporary accommodations. What it takes to meet that goal has shifted over time. In the late 1990s, for example, authorities who selected sheltering accommodations typically planned to have an appropriate fraction of shelter space designated and specially equipped to handle the needs of the elderly and disabled. And whenever possible, they favored use of shelter spaces that were built after 1992—the first year the requirements of the Americans with Disabilities Act (ADA) were imposed on newly constructed public spaces. Individual shelters were designated and prepared to serve populations with specific needs, like hospital patients, the physically disabled, and the elderly.

But requirements for meeting the needs of various populations have greatly expanded. As one emergency manager notes, there has been a “pretty significant shift in what ADA compliance is over the past eight years.”

The trend began with the launch of the U.S. Department of Justice’s (DOJ’s) Project Civic Access about a decade ago, explains attorney David Bohannon of the University of Maryland’s Center for Health and Human Security. Under that initiative, the DOJ selects specific cases among formal complaints of ADA violations submitted by county and municipal governments. It investigates those and seeks resolution through a public settlement that yields corrective measures without litigation.

Since 2000, the DOJ has arrived at more than 180 program settlements around the country. The DOJ also brings lawsuits where that is the only way to resolve a case. Among the localities with cases pending are Broward County, Florida, and Montgomery County, Maryland. Bohannon says that emergency managers may not realize that the DOJ will prosecute for noncompliance.

And the legal pressures are increasing. With the national focus on emergency management that followed 9-11 and Katrina, the disability advocacy community has pressed hard for accessible programs. Responding to those demands, FEMA has raised the bar for accessibility by issuing the Guidance on Planning for Integration of Functional Support Services in General Population Shelters (FNSS guidance) late in 2010. In that document, the agency recommends that all emergency shelters go well beyond basic ADA compliance. They should be capable of catering not only to evacuees’ medical and special needs but also to their religious needs and other preferences.

Among the guidance’s recommendations: development of agreements for vendors to supply equipment like oxygen generators, hearing aids, telecommunications devices for the deaf, such as TTY/TDD phones, software for computer-aided real-time translation, and synthesizers for computer-based text-to-speech services. FEMA further recommends accommodations in shelters such as communications materials printed in Braille, a “quiet area” for the elderly and persons with autism, mental health services, and food to accommodate personal dietary restrictions, such as vegetarian and kosher meals.

Kiefer notes that the regulations do not forbid “niche” shelters, such as those focused on caring for the elderly or new mothers, but they imply that all shelters should be able to accommodate any special needs population.

The document has raised serious concerns among emergency managers who are committed to accessibility but who worry how they can address those requirements and still protect as many people as possible, given their limited resources.

“It’s pretty concerning,” comments Mike Womack, director of the Mississippi Emergency Management Agency. “I think it could force a change, really impacting the number of local governments and the number of nonprofit organizations that are willing to do sheltering,” Womack states.

Womack says he hopes the DOJ will provide states with a better sense of what constitutes a “good faith effort to comply with the FNSS guidance.”

Bohannon, who attended a briefing on the document hosted by FEMA and the DOJ, says that both agencies portrayed the guidance “as being an aspirational document, meaning that this is what you should aim for.”

The problem, he said, echoing Womack’s concerns, is that budgets are tight, so emergency managers need to know “where is the safe harbor or [what are] the minimum requirements.” They do not need to know “what the top of the mountain is,” Bohannon says.

The critical legal standard in ADA cases is “reasonable accommodation,” Bohannon says. “A DOJ prosecutor would see the role of FNSS as helping establish what is a reasonable standard within the profession of emergency management.” Different emergency managers may define that standard differently, but from a legal standpoint, Bohannon explains, “a DOJ prosecutor may say, ‘we think it’s reasonable because FEMA says so.’”

How emergency managers will handle those demands remains to be seen.

Education
Another part of the process is to engage with and educate the general population, a task that carries unique demands and challenges in the case of special needs populations. Here, as in the planning process, it’s important to leverage relationships with those organizations already serving the affected groups.

Sloan explains that his office directly engages stakeholders, such as the region’s home healthcare providers and device vendors. Those organizations can help the authorities by directly educating their patients and clients about individual preparedness and about what they can do and what they should expect when evacuation is necessary, he says. Another effective option is inclusion of emergency services literature with meals-on-wheels deliveries, experts say.

In New Orleans, government agencies faced the challenge of accessing and educating populations with limited access to news media, high illiteracy rates, and widespread skepticism about the motives of government and outsiders. Kiefer recalls the rumors within the city’s poor communities—shared by community activists testifying before Congress—that the city’s levees had been bombed to destroy poor neighborhoods and force out or even kill their residents.

The solution, Kiefer says, is “working through established trusted agents.” One example is Operation Brother’s Keeper, a program that predates Hurricane Katrina. Coordinated by the Southeast Louisiana Chapter of the American Red Cross, the program focuses on faith-based organizations in the city and region as agents for preparedness. Program staff and volunteers train faith-based organizations in disaster readiness and response, help them conduct emergency preparedness assessments of their own organizations, and recruit members to serve as volunteers in preparedness and response.

In diverse regions such as the Gulf Coast, where communities speak languages ranging from French dialects and Spanish to Cambodian and Vietnamese, communications must target residents in their native languages and through their own cultural organizations as well. Emergency managers can also use online social media to help get the word out.

Privacy
The ideal practical solution to the challenge of identifying special needs populations would be a “database of databases” that aggregates volunteer registries, government social services rolls and private provider databases. This, however, is not feasible, given the privacy and data security implications of collecting data on people’s health and social welfare. In particular, private database “owners” fear—perhaps incorrectly—that they could be charged with violation of 1996’s Health Insurance Portability and Accountability Act (HIPAA), which carries heavy penalties for unauthorized sharing of confidential patient information.

The concerns have hampered special needs programs like the one in Arlington County, Virginia. That effort sought to combine social services databases for use in emergencies by transit agencies, specifically Specialized Transit for Arlington Residents, or STAR, the county’s service for mass transit accessibility, says Steve Yaffe, transit services manager for the Transportation Division of Arlington’s Department of Environmental Services. County social service agencies told program developers that they would not share data on residents for fear of violating privacy laws. That, combined with a dispute over intellectual property rights from the program between the federal grant agency and its software developer, doomed the effort, he explains.

Armstrong, of Kern County, California, relates similar experiences when seeking to leverage existing data about special-needs communities. When you ask for information, he says, “Everyone will say, ‘HIPAA’ and tell you ‘I can’t talk to you about that.’”

Kern County and a partner agency arrived at a workaround in one emergency, Armstrong says. In that case, a moderate power outage threatened residents who relied on electricity for household medical devices. By law, California’s PG&E had to have a database of those residents. During the outage, Kern County called the utility and requested data, including addresses, for customers that were at risk without power.
 
PG&E declined due to privacy concerns. The utility did, however, offer to call each at-risk customer affected by the outage, ask if they needed medical assistance, and provide those people’s addresses to the county. PG&E made the calls, found that fortunately none of its customers were in distress, and power was promptly restored.

While well-intentioned, PG&E’s handling of the situation was too restrictive, and its protection of the database in that case was not required by the law, Citarella of RBC says. HIPAA explicitly allows sharing of patient information during emergencies and responses, and perhaps more important, generally allows sharing of information “that’s needed for the care and treatment of the patient,” she says. “If you’re trying to evacuate someone in an emergency, that’s care and treatment of the patient.”

The utility’s handling of the situation illustrates the need for more education in HIPAA, Citarella says. Every stakeholder in emergency management should be trained in the fundamentals of HIPAA and when it’s legal to share information. Training exercises must emphasize critical thinking, she says, because in an emergency, imminent safety risks supersede regulatory compliance concerns.

Armstrong, meanwhile, proposes a separate solution that might also facilitate sharing in emergencies: legal waiver forms that when signed by the citizen, explicitly allow for sharing of personal information only in the event of an emergency, avoiding the privacy risks of routine access.

Nothing can bring back Banilda Caixida or ease the pain of loss of those who knew her. But combined efforts to apply the lessons learned from her tragedy, it is hoped, will help to prevent similar situations from occurring in the future.