Emergency Communication: A Unique Work in Progress for Those with Disabilities

By Murphy, Patti | The Exceptional Parent, November 2009 | Go to article overview

Emergency Communication: A Unique Work in Progress for Those with Disabilities


Murphy, Patti, The Exceptional Parent


Clear communication in the best of human circumstances is often a work in progress, a goal yet to be attained. Efforts to make it happen in an emergency may be thwarted by the shock and distress of people involved or the need to get to a safe place fast. Unique complications may arise for people with limited, if any, natural speech and who are reliant on augmentative and alternative communication (AAC) tools and strategies as their voice. As many in the AAC and disability advocacy communities have learned through unfortunate events spanning the past decade, finding appropriate help in a catastrophic situation--or offering it--requires careful planning.

Significant gaps remain in community emergency preparedness for populations with special needs in the four years since Hurricane Katrina, according to an August 12th Washington Times article summarizing a report by the National Council on Disability to be released this year. Its message echoes that of "Saving Lives: Emergency Planning for People with Disabilities," a similar report the council published in 2005 and based on post-9/11 research on the accessibility of emergency preparations across disability groups. "All too often in emergency situations the legitimate concerns of people with disabilities are overlooked or swept aside," said the authors of that report, which focuses on matters such as local registries identifying people requiring special transportation and evacuation assistance, alert systems for those with hearing or visual impairment, evacuation and relocation procedures, and mitigation of damaging effects. While there is no direct reference to AAC in the 2005 document, it cites the need to ensure that communication is possible during emergencies for individuals with speech, hearing or visual limitations. The Times article notes that the council, in its 2009 report, recommended improvements ensuring safe transport of assistive equipment and allocation of recovery funding for replacement of damaged equipment. For many individuals, that could mean an electronic speech communication device.

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Finding a sound voice in chaos

Pam Kennedy, 37, who has such a device mounted on her wheelchair, remembers April 19, 1997 vividly. That night, the newly built dam in Grand Forks, North Dakota, where she lived at the time, broke in a ravishing flood. The community had hoped to avoid such an incident by constructing the dam and to avert disastrous consequences of anticipated flooding by putting an action plan in place.

Awakened at 2 a.m. by sirens, Kennedy, who cannot speak or walk due to the effects of cerebral palsy, wondered and worried for nine hours how she would reach safety. Then, in the late morning, her aide came. After helping Kennedy transfer to her wheelchair, they scrambled to gather Kennedy's service dog Jessie, medications, and laptop computer with text-to-speech software that served as her primary means of communication. She used it to create and print paper communication displays that allowed her to express herself ore easily and fully than writing notes with paper and pencil a rescue worker gave her initially.

Kennedy, who now lives in Carrollton, Georgia, shared her experience at the "AAC and All That Jazz" conference held in New Orleans in 2008 as part of the post-Katrina restoration effort. Spearheaded by the United States Society for Augmentative and Alternative Communication, the event aimed to raise awareness of issues that people with complex communication needs must deal with when disaster hits and encourage development of proactive safety plans. In her presentation, Kennedy recounted her arrival in a National Guard truck at an emergency shelter set up in a special education classroom at a school.

"Until that moment, I didn't consider myself to be that disabled," Kennedy said using a DynaVox V speech communication device, the type she currently uses. "The waves of grief that washed over my soul seemed far more destructive than the flood waters around me. …

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