Be Prepared: Marcie Roth Leads FEMA’s Office of Disability Integration and Coordination

On the morning of August 29, 2005, Marcie Roth received a call she has never forgotten. A friend and colleague asked Roth to help Benilda Caixeta, her sister-in-law. Caixeta, who was a quadriplegic and used a wheelchair, had been trying to evacuate from her Upper 9th Ward New Orleans apartment for three days.

Despite the desperate woman’s repeated requests, the paratransit system responsible for providing transportation to people with disabilities never showed up. Calls to 911 didn’t help. Roth called people she thought could help. But help never arrived, so Roth stayed on the phone with her for most of the day until Caixeta — panic in her voice — told Roth “the water is rushing in,” and then the phone went dead. Five days later, Benilda Caixeta was found dead in her apartment, floating next to her wheelchair.

As Roth testified in hearings in 2005 and 2010, “Sometimes things like this can’t be prevented. Despite the magnitude of the catastrophe, this was not one of those times. Benilda did not have to drown.”

Saving Lives in Emergencies State by State

People with access and functional needs, including those with disabilities, are disproportionately affected by disasters such as hurricanes and terrorist attacks. Caixeta’s fate — and that of others like her — are the reason Roth went to work for FEMA and why she is working so hard to implement comprehensive strategies for inclusive emergency planning. Roth wants to improve the ways we plan for disasters, especially for people who need help getting out of harm’s way — women who are pregnant, people with restricted mobility, either due to disability or old age, and children. Marcie says, “I came to FEMA intending to improve the ways we serve people with disabilities. And the safety measures we put in place for people with disabilities can also help the larger population, similar to the way curb cuts also turned out to benefit parents pushing strollers, travelers hauling luggage and shoppers pushing carts.”

Roth did not originally intend to work in emergency management. But while she was Director of Advocacy and Public Policy at the National Council on Independent Living she was called on to assist after the , the terrorist attacks on September 11, 2001 created new challenges for New Yorkers with disabilities. Dismayed by the slow pace of progress, Roth became more involved in committees developing supports for people with disabilities. She was co-chair of the Consortium for Citizens with Disabilities Emergency Management Task Force, representing over 100 national organizations serving millions of people with disabilities. Roth has directed the Office of Disability Integration and Coordination since its inception in February 2010. She joined as senior advisor for disability issues in June 2009.

When she joined FEMA, Roth brought a strong commitment to integrating the needs of all segments of American society, including people with disabilities, into the disaster planning that goes on in every community. She says that many of the agency’s initiatives are shifting from separate programs for people with disabilities to “real community” planning, which reflects the needs of the entire community, including those who for a variety of reasons might need additional assistance in an emergency. “Why do we plan for real community last?” asked Roth. “We need to plan for the entire community from the beginning, thereby eliminating pointless repetition and maximizing resources.”

What is the best way to “bake it in, not layer it on” across America? Roth says that one avenue is giving states guidance on integrating the needs of people with disabilities in general population shelter planning, such as in the “ADA Best Practices Tool Kit for State and Local Governments.” Chapter 7 of that document, “Emergency Management Under Title II of theADA,” describes some of the problems commonly faced by people with disabilities in accessing emergency- and disaster-related services, programs, activities, and facilities and suggests ways of making them more broadly accessible.

“Different states have different needs, based on likely hazards and specific risk profiles,” Roth says. “We try to provide the kind of assistance and guidance that supports our states’ needs.”

In describing her job, Roth says, “I personally spend a lot of time traveling around the country, speaking to groups, providing information to help people paradigm-shift away from ‘special needs’ toward a more integrated approach. Our agency couples that with very specific tools, including lists that we’ve developed to identify commonly used durable medical equipment and other items planners should think about for general population sheltering. For example, having sufficient temporary cushions for wheelchairs and medications on hand, so people with disabilities can shelter with the general population, rather than being forced to go to an emergency room.”

Under Roth’s direction, the Office of Disability Integration and Coordination has worked with the Mass Care Division to develop “Guidance on Planning for Integration of Functional Needs Support Service in General Population Shelters.” The guidance will help municipalities comply with federal laws to help people with disabilities maintain their independence, health and functioning. Training will be provided in each FEMA region beginning on July 19.

Resources

FEMA’s Citizen Corps grassroots community resilience movement and the Ready.gov awareness campaign work together to actively involve Americans in making themselves and their communities safer, stronger, and better prepared to handle any emergency. Today, 2,447 Citizens Corps Councils serve 228,494,404 people — or 80% of the total U.S. population. These councils strengthen collaboration between government and civic leaders and educate, train, and involve the public. For more information about Citizen Corps, visit www.citizencorps.gov. To learn more about the Ready.gov Campaign, visit www.ready.gov.