View from the Experts: As we mark National Preparedness Month we must consider the unique needs of individuals with disabilities

September 21, 2016

Mary Ellen originally decided to ride out Super Storm Sandy at her home in Rockaway Beach, New York, with her husband, a retired firefighter, and her two teen-age sons. Her family had safely weathered Hurricane Irene a year earlier, and had limited evacuation options due to her health and mobility needs. They thought it would be another success story. Ultimately it was, but not without significant risk.

“I can no longer walk due to Multiple Sclerosis. … With the help of neighbors, I was carried onto a surfboard, and began a journey (to safety) in waist-high, smoke- and ember-filled, freezing water. When we had to move again I was placed on a kayak and, with my dog in the front, we were pushed along the water five blocks to our neighbors’ brother’s home, where we stayed until the next morning.”

– Mary Ellen Olsen

As we commemorate National Preparedness Month we must be certain that our emergency planning considers everyone in the community. Mary Ellen uses an electric wheelchair and requires a ramp, accessible bathroom and van capable of transporting her large, heavy wheelchair. It’s impossible for her to retreat to an inland friend or relative’s house or even to access many emergency shelters.  As she explained in the 2013 book, “Surviving Sandy: The Superstorm That Reshaped Our Lives,” Mary Ellen escaped with the help of family, friends and neighbors, including retired firefighters.

While Mary Ellen’s story is harrowing, it’s unfortunately not unique. We have all heard stories of people with disabilities being left behind, often with tragic results, in disasters ranging from the 9/11 terror attacks to Hurricane Katrina. Super Storm Sandy again highlighted the disproportionately damaging impact natural disasters can have on people with disabilities.

Here we are again in hurricane season. Hurricane Hermine swept across the Florida panhandle and up parts of the East Coast. Baton Rouge, Louisiana, is still reeling from devastating floods in August that displaced thousands of people. A strong earthquake in Oklahoma was felt from Nebraska to Arizona, and this summer 10 large wildfires blazed across California. Researchers and scientists say these disasters will only increase in frequency. In fact, a recent New York Times article stated that the long-predicted threat to the eastern coastline due to the rising sea has already begun.

As a person with a disability, as parents of children with disabilities and chronic illness, as neighbors of frail seniors, and as friends of people with chronic illnesses such as diabetes and asthma that require access to medication to stay alive, we can’t help but be concerned. We are worried that our children, our neighbors, or that we ourselves will be left behind, because we might need a little extra help during an emergency. Maybe we move too slowly, we don’t understand emergency alerts, or have too much equipment or technology. Maybe the first responders will be thinking of providing “the greatest good for the greatest number.” That utilitarian efficiency philosophy may leave us out.

One of the Federal Emergency Management Agency’s themes for National Preparedness Month is “getting involved in your community and planning with neighbors.” With that in mind, whether or not we have disabilities, are family members of someone with a disability, or part of a support network, we should participate in local emergency planning efforts. It’s important for us to share experiences and concerns with local emergency managers and public health preparedness planners, and advocate for inclusive and accessible emergency plans, response and recovery.

Research and history indicate that it’s common for the first “first responders” to be friends, family and neighbors. And, as in Mary Ellen’s story, a solution can often be creatively developed. However, it would be much more effective, efficient, and equitable for local emergency plans, response and recovery to be inclusive of persons with disabilities in the first place. And it’s the law. To reach out to your city, town or county emergency planners, contact your city or town hall or your county government office.

We not only believe in inclusive emergency planning, we teach it. Since 2009, UMass Medical School’s Eunice Kennedy Shriver Center has developed inclusive emergency planning solutions aimed at increasing equal access to emergency services, enhancing regulatory compliance,  promoting efficient emergency response, and advancing health equity and resilience for the whole community. We provide consultation, education and programs that raise awareness for people with disabilities, mental and behavioral health conditions, and others with access and functional needs; their families, service providers and support networks; local governments and emergency responders; and health care and public health organizations.

Together, we can ensure that all members of the community are given equal access to rescue efforts and services during an emergency. There is no better time to start working toward this goal than during Emergency Preparedness Month.

Sue Wolf-Fordham, JD, is an instructor in UMass Medical School’s Department of Family Medicine and Community Health and director of the Emergency Preparedness Initiative at its Eunice Kennedy Shriver Center.

Nancy Shea, MPA, JD, is a project coordinator at the Eunice Kennedy Shriver Center who works on the Emergency Preparedness Initiative.

Hilary Deignan, MEd, JD is an intern at the Eunice Kennedy Shriver Center working on the Emergency Preparedness Initiative.

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