EMERGENCY PREPAREDNESS FOR SPECIAL NEEDS POPULATIONS

Held in New York City

In the wake of the 9/11 terrorist attacks, the mainstream media scarcely noted the quiet but heroic efforts of hundreds of home care providers who crossed police cordons in downtown Manhattan to tend the survival needs of thousands of persons with special needs. Also largely hidden from public view were the undaunted efforts of home care providers, social workers, and volunteers who unflaggingly searched for and aided many more thousands of families and individuals with special needs in the aftermath of the recent Midwest floods, the California Wildfires, and numerous other disasters.

Increasingly, the complexities and challenges of serving special needs populations in the emergency management process are the focus of public policy makers and emergency preparedness practitioners. People with special needs make up nearly 20% of our communities, and as such their unique emergency issues are no longer viewed as an addendum or footnote to a community’s emergency preparedness plans and procedures.

Therefore, special needs issues were the center piece of a recent two day conference in September 2008, sponsored by the Federal Emergency Management Agency (FEMA), Region II, it was held at the City University of New York’s Graduate Center in Manhattan. The Conference was part of a continuing series of Urban Hazards Forums sponsored by Region II. The concept for the Conference was that of FEMA’s Region II Administrator Stephen Kempf Jr. and Sean Waters, Emergency Analyst and Acting Director Management Division Director for Region II.

Administrator Kempf understands the importance of addressing special need issues as he himself has a disability. Kempf became disabled in the line of duty and sustained serious and permanent injuries. He is also a two time Gold Medal Olympian from the ParaOlympics held in Toronto in 1976, he was a wheel chair user for 14 years. After years of physical therapy and personal determination Kepf today is fully ambulatory with the aid of canes. For Waters too, the focus on persons with special needs has a personal component as several family members have serious disabilities.

But the Conference’s origins were not solely driven by the personal experiences of its creators. Both men were motivated by current national census that paints a sobering and even alarming picture of the expanding special needs population, and both men are sensitive to the need to get ahead of this curve. These national statistics have far reaching implications for policy makers and practitioners at all levels, and most particularly for FEMA professionals.

Census figures report that more than 50 million Americans have a disability, and of these, 32.5 million persons are severely disabled. As the population ages, so too will the proportion of individuals with disabilities. In fact, more than 70% of Americans who are 80 years and older have disabilities. Among our nation’s youth (ages 6-14­), 11% have a disability. Among residents 15 years and older, more than 40 million persons are categorized as disabled, as defined by the Americans with Disabilities Act (ADA). In particular, more than 11 million individuals use a wheel chair, walker, cane or crutches; 9 million have difficulty seeing or are blind; 7 million have difficulty hearing normal conversation or are deaf; and 14 million have limitations in cognitive functioning or have mental or emotional illnesses.

Given the implications of these statistics for emergency planners, there is little wonder that “planning the Conference was not an easy apple to pick,” as Water said. Nevertheless, it still delivered a number of impressive and groundbreaking accomplishments. Notably, the Conference took a significant step toward bringing together key stakeholders, highlighting the complexities of special needs engagement and planning efforts, and laid the foundation for future action in the Region.

In his opening remarks, Administrator Kempf, said “the greatest contribution the Conference could make is to open up a continuing discussion of the barriers that cause misunderstanding and fear with respect to the special needs population”. Moreover, “Lack of understanding breeds anxiety and anxiety also breeds fear. People become afraid to discuss what's important, what's needed. So as a result, we often wind up oversimplifying and exaggerating. All these things come back to not only haunt the special needs population but those who are trying to help.” Thus the Region could with open eyes start to find ways past those barriers be they attitudinal or structural.M

As event planner, Waters commented that the Conference was specifically designed and structured to accomplish a number of important objectives. With the assistance in design and execution of this conference coming from Elizabeth Davis of EAD & Associates, LLC, an emergency management and special needs consultancy located in the Region, they were able to put together an agenda that focused on attendees’ needs and concerns. A listing of those specific standout contributions includes:

Dialogue and Information Sharing: The Conference brought together a wide array of public policy makers, academicians, state and local officials, non-profit groups, community based providers, advocacy groups, and first responders to exchange ideas and discuss the emergency preparedness process.

The agenda reflected the theme of creating an informed and inclusive emergency support and delivery system amidst a wide diversity of players and concerns.

The roster of speakers read like a “Who’s Who” on the topic of emergency preparedness and special population needs, with particular emphasis on leaders and subject experts from New York City and other Region II states. Starting with a call to action Dr. Patricia Morrissey, Commissioner Administration on Developmental Disabilities with the Administration for Children and Families of the U.S. Department of Health and Human Services, the Conference featured presentations by leading policy makers, and included reports on the status of current emergency preparedness activities from New York State and New Jersey.

The Conference also provided a forum for promoting the theme of inclusive emergency management based on a functional model for people with special needs in all phases: mitigation, preparedness, response, and recovery. An impressive stable of expert presenters delivered addresses on a broad spectrum of topics, including:

• Pediatric Improvements and Challenges in Emergency Preparedness and Response
• Using Demographics to Understand, Motivate, and Support Evacuations with Special Needs Populations
• An Overview of Service During Times of Disaster by Home Based Care Programs from an Executive Director’s Perspective
• An Overview of the Department Justice’s “Tool Kit” on Emergency Management under title II of the ADA
• Implications of Pandemic Influenza for People with Disabilities as Presented by the Center for Disease Control (CDC)
• The Latest Developments in the Field of Accessible Media Technology, and how it can to used to reach segments of the special needs community.

Best Practices

The Conference introduced replicable models being used outside the Region that have a proven track record and which could be useful to attending government agencies. Some of the most successful programs and practices were featured in a number of interactive breakout sessions. These sessions provided Conference participants an opportunity to interact with representatives who have developed or used these concepts, and ask pointed questions about their effectiveness, as well as whether they can be replicated in the Region Conference breakout sessions included workshops on:

• The Senior Center/Safe Center model now in use in Alabama and Florida in which a Senior Center is designed and built to function in that capacity on a regular basis, but is equipped to function as a special needs population shelter in the event of an emergency. Staff are trained for both purposes
• An account of the need for Continuity of Government Operations (COOP) planning for the service provider agencies within the community so that a continuum of service remains in place for those who receive a level of in-home support from visiting nurses, home health aids, and homecare attendants even when disaster strikes.
• The results of discharge planning, and the need to develop an appropriate care exit strategy as soon as shelter operations are stood, a gap uncovered by experiences in Florida during the 2004 hurricane session.
• FEMA’s Special Needs Unit, which has existed for some time; its history, accomplishments, and current organization.
• An EMT training overview for responders about how to respond to disability when encountered on a medical response, with an overview of how best render the necessary and appropriate care.

The FEMA Special Needs Unit is a particularly noteworthy example of an effective model program instituted by FEMA that promotes the best and latest practices for identifying and assisting special needs populations. Marianne Jackson, FEMA’s Region II Federal Coordinating Officer and lead facilitator for this break out session, explained that the unit’s mission is to identify older adults and people with physical or developmental disabilities affected by a presidentially declared disaster, and to make sure they receive all the assistance to which they are entitled.

In these situations, Ms. Jackson remarked that it is imperative that FEMA, the State, and other partners “set up a strong special needs operation so that nobody falls through the cracks”. Jackson commented that it is essential to insure, therefore, that units established at the local level are staffed by knowledgeable people. ” Social workers are a wonderful resource”, Jackson noted. Jackson explained that it is crucial that “all of our constituents know that we are running a Special Needs Unit”. The reason for this is that if our constituent’s encounter any people with special needs who need extra help, they should “turn to us”. Jackson concluded by saying that Congressional representatives are often gratified to learn that both FEMA and States have set up Special Needs Units because it demonstrates that federal and State agencies are working cooperatively together. This also makes it possible for elected representatives to help their constituents.

Partnerships and Planning

Reflecting on the work of the Conference, Waters observed that “Because FEMA is a threshold agency, it is the nature of our organization to partner with other federal, state, local, and tribal partners as well as not-for-profits and the private sector. So, if we can bring these folks together, and if they’re just able to network and collaborate, then they’ll be able to drive their own solutions”.

Waters talked poignantly about several individuals with whom FEMA had partnered in planning the Conference who had severe disabilities or had family members with disabilities. He pointed out that these persons and literally thousands of other individuals with disabilities have very specific and particular needs that have enormous implications for providing emergency preparedness and disaster assistance services. Take, for example, one individual who played a central role in planning the Conference who is vitally dependent on her daily dose of medication to aid in her mobility. “So, what are the consequences for someone like this person and many others if she were impacted by a disaster, required to evacuate, and were put into a shelter situation?” Waters asked.

Davis added that Waters’ point supports the fact that planning – be it for a conference or on emergency plans -- must include meaningful ways for stakeholders from the special needs population to participate in the process. “It is quite simply talking the talk and walking the walk. We all have contributions to make to the process, and we must work with and not for any group of our community.”

Regional Advisory Council

Flowing directly from the Conference was a ground breaking announcement that would significantly elevate special population needs and issues and institutionalize within the structure of the Regional Advisory Council (RAC) for Region II special needs considerations in the emergency preparedness and disaster assistance process. The RAC is a post-Katrina congressionally mandated requirement for each FEMA Region aimed at supporting the mission and work of its parent body, the congressionally mandated National Advisory Council­ (NAC) in Washington DC. For Region II, the RAC includes the Governors of New York State, New Jersey, Puerto Rico, the Virgin Islands and their Homeland Security and Emergency Management Directors.

The Conference highlighted the pressing need for the establishment of such a sub-committee and the appointment of a senior level representative to head up that Sub-Committee. At the Conference, Waters announced on behalf of Administrator Kempf the creation of the new Sub-Committee and the appointment of Elizabeth Davis as its first Chair. As both a national and local expert on emergency management and special needs issues, Ms. Davis moderated and planned the Conference in conjunction with FEMA Region II.

Ms. Davis’ long list of credentials and credits include her previous role as a member of the NYC Mayor’s Office for people with Disabilities, the first Special Needs Advisor to NYC Office of Emergency Management, the first Director of the Emergency Preparedness Initiative out of the National Organization on Disability, appointed member of several national research studies, advisory boards, and review teams, as well as founder of two consultancies focused on emergency management and special needs populations.

Under Ms. Davis Leadership, the new sub-committee would have the authority to forge new partnerships with experts in the field, other institutions, and private and not for profit entities on ad hoc special needs issues and long term issues affecting special needs populations.

Above all, the overriding Conference goal, Waters explained, was to get people really thinking, get them open to the possibilities of new collaborative ventures, and then hopefully get them poised for action.

Gratified by the outcome, Waters exclaimed, “I think the Conference was a success. But we did not want to just execute a conference, consider the matter closed, and then walk away and focus on something else.” By the same token, he stressed, “it was not our intent to get something finished but to get something started.” Davis added that the best result is summed up by one Fire Chief who upon leaving the conference told her he was on his way back to immediately change his own training curriculum. A full assessment of the Conference will set the future agenda and flush out what action steps are needed. Among the options Waters mentioned were the rolling out a series of emergency management courses on serving special needs populations and putting top priority on activating the new RAC special needs sub-committee.

Perhaps the single most important contribution of the Conference, however, is that it raised the bar on what is required to address special population emergency issues in this Region. For this reason, it represents an important step toward fulfilling the FEMA mission and assuring that this population takes its rightful place in all aspects of the emergency management process.

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