By Elizabeth A. Davis and Kelly Rouba

June Trach and Anestal Elmitor push Syvlia Tunis to a waiting car, that will take her to another retirement center in Boynton Beach, Fla. Thursday, Aug. 25, 2005 as Tropical Storm Katrina approaches. (AP Photo/J. Pat Carter)

In an article that appeared in New Mobility magazine (“Are We Ready for an Emergency?” August 2009), Chip Wilson, Florida’s statewide disability coordinator for emergency management, was quoted as saying that “for far too long, people with disabilities have been an afterthought by many involved in emergency management.”

In support of that statement, disability advocate and Mercer County (N.J.) CERT member Norman Smith, who has cerebral palsy, added that for many years, “On the emergency management side, there was the assumption that someone else was ‘responsible’ for us—an agency, an institution, a parent, or the health care system.”

Recognizing that changes needed to be made, the National Council on Disability commissioned our organization to conduct extensive empirical research on emergency management issues pertaining to people with disabilities. The resulting report of over 500 pages examines all phases of emergency management.

This report is the result of culling through thousands upon thousands of pages of materials found inscholarly journals, news reports, firsthand accounts, testimony, after action reports, and the like from across a variety of disciplines. We looked to works in emergency management, protective services, sociology, social anthropology, medicine (disaster, geriatrics, pediatric), transportation, housing and much more.

The goal was to not just reiterate known or presumed gaps based in part on the lack of reporting on the issues, but to find replicable solutions and promising practices and to offer an organized roadmap for change.

Titled “Effective Emergency Management: Making Improvements for Communities and People with Disabilities,” the report calls for significant changes in the field and highlights a number of best practices whose adoption might better address the needs of people with disabilities.

Here are some of the findings and recommendations pertaining to each life cycle of emergency management.

Preparedness: Based on extensive research, it seems that many emergency managers and people with disabilities are not adequately prepared for disaster. This appears to be because many emergency management agencies have limited office staff who are overtaxed and unable to devote more time to special-needs populations. When planning for those with special needs does occur, it’s often done without their input.

A key recommendation in this area is to foster inclusive planning by inviting disability advocates (especially those representing various disabilities) to participate in such efforts.

Response: A number of areas in the response phase need improvement, including emergency communications, evacuation and sheltering.

For instance, when emergency alerts are issued, messages are often too complex for people with cognitive impairments to understand. Furthermore, these alerts are not always issued in accessible formats (like captioning for broadcasts or alternate font sizes for print formats) so that people who are deaf or hard of hearing or have low vision, for example, can receive them and act accordingly.

In terms of evacuating, there is a significant need for more accessible transportation options. Much more must also be done to accommodate people with disabilities and their caregivers and service animals in shelters.

Recovery: Research on the recovery phase shows that people with disabilities have experienced difficulty with applying for aid and even obtaining housing after a disaster. This is due to a variety of factors, from a lack of accessible housing to a need for assistance in filling out paperwork because it is not always available in specialized formats, like Braille.

Furthermore, many people with disabilities struggle to return to their activities of daily living, because many of the support networks and service providers people with disabilities rely on for help are no longer running normally, if at all. For this reason, it’s crucial that these agencies have plans in place to ensure that their consumers are not neglected following disaster.

Mitigation: Not a lot has been done in this phase of emergency management when it comes to addressing the needs of people with disabilities.

In that regard, simple steps can be taken to be sure their needs are met following disaster, like ensuring that generators are not kept in basements or at low levels due to potential flooding. Safe rooms can also be adapted so that they are accessible. More special-needs funding also needs to be made available to help emergency managers in this effort.

In every phase of emergency management, the report stresses a need for greater collaboration among emergency management officials and key stakeholders from the community, such as disability advocates and those who provide services to the special-needs population.

Fortunately, Marcie Roth, FEMA’s Senior Advisor on Disability Issues, and FEMA Administrator Craig Fugate have already taken proactive roles in working towards this end and better meeting the needs of people with disabilities.

In a conference call hosted by FEMA on Sept. 24, 2009, Fugate said, “We need to do a better job of making sure that all of the resources that we provide are geared towards the populations we serve and not segregate out [by looking] at people differently but really try to fulfill…[and ensure] their needs are met.”

And when it comes to collaborating with individuals with disabilities, Fugate added, “We want to take the approach that people with disabilities both have tremendous capabilities to assist and provide input into the planning process. “…[W]e should not look at people with disabilities as a separate part of the plan; we need to incorporate the needs into our plans at the state and local levels, but obviously (in) the FEMA guidance.”

It should be our goal that all people move from the position, perceived or actual, of passive victim to that of informed and involved consumer of emergency management. This makes individuals stronger and agencies more appropriately responsive. Together we can move this past the awareness level and into implementation.