Disaster Preparedness for People With Disabilities
Tom Scott, Editor, United Spinal Association
Introduction
U.S. Census data from 2004 show that 49.7 million (19%) Americans in the US, age 5 and over, have a disability. That’s approximately 1 in 5 US residents. A majority of these individuals have difficulty in performing basic physical activities, such as walking and climbing stairs and are dependent on others, such as caregivers, to assist with daily tasks. This also includes thousands of individuals within the multiple sclerosis population. During a disaster, lack of preparedness in considering these factors could quickly unfold into a dangerous and life-threatening scenario for people with disabilities.
When national disasters occur, the disability population presents the greatest challenge to emergency personnel and is at a higher risk of not receiving proper aid or support. The devastating impact of Hurricane Katrina uncovered numerous failures within state and federal emergency management agencies and disaster relief organizations in coordinating their efforts to aid the affected population, especially those with disabilities. According to Louisiana officials, there were over 1,000 victims of Katrina and many were people with disabilities. The powerful images portrayed in the media resonated throughout the country and brought some much-needed attention for improved emergency response and disaster preparation plans for people with disabilities nationwide. Although Katrina affected a large percentage of the disability population, the percentage of media coverage devoted to the impact of such disasters among this population is extremely low.
Forum on Disaster Preparedness
In December 2005, a panel of experts met at a forum in Berlin, Connecticut to discuss the topic of disaster preparedness and exchange ideas on how to improve assistance for people with disabilities in the state of Connecticut. Lessons Learned: A Forum on Disaster Preparedness for People with Disabilities brought together state and federal emergency management officials, first responders, community leaders, and disability rights organizations, including United Spinal Association.
Keynote Speakers Marcie Roth, executive director and CEO of the National Spinal Cord Injury Association, and Sandee Winchell, executive director of the Louisiana Council on Developmental Disabilities offered the audience unique insight on disaster preparedness. “Like many people I assumed that the gazillions of dollars that has been spent on preparedness planning [after 9/11] adequately prepared us all for the next big disaster and the additional needs of people with disabilities and how those needs would be met,†Roth said. “Due to the unprecedented challenges of Hurricanes Katrina and Rita I think we’ve all come to an understanding that, in fact, all of the preparedness in the world isn’t going to adequately prepare us for disasters of this magnitude. Therefore, it’s really important we take disaster preparedness far beyond the planning phase and we need to be thinking very carefully about who we are trying to help, what we need to be doing, who has the expertise, where we can best shore up limited resources, and how do we prevent the unintended consequences that could have an unnecessarily life-long impact on some people?â€
These are questions that are not only being asked in Connecticut, but at disaster preparedness forums nationwide. People with disabilities represent a large segment of the U.S. population. They all have unique needs and concerns. And, most importantly they all have individual risks in times of emergencies and disasters.
The agency currently in charge of addressing these needs and concerns, representing the top rung of jurisdiction in the area of disaster preparedness for the disability population, is the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities. Under an executive order signed by President George W. Bush in July of 2004, the agency, which is chaired by the head of the U.S. Department of Homeland Security, was established to ensure that the federal government appropriately supports safety and security for individuals with disabilities in disaster situations. Roth, who is also parent to two children with disabilities and has an extensive background in disability advocacy, noted that Dan Sutherland, the head of the Office of Civil Rights and Civil Liberties at the U.S. Department of Homeland Security, took on the task of being the “point person†on emergency planning and preparedness for people with disabilities. “Although [Sutherland] has done a wonderful job, I don’t think anyone would agree that the Office of Civil Rights and Civil Liberties within the Department of Homeland Security is where all things dealing with disability should be centralized in the middle of a disaster, and yet it fell on this man and his team to lead the way. This is an issue and it’s something we are concerned about,†Roth said.
There are other issues that greatly affect how the disability population receives emergency assistance. Roth cited the high number of people with disabilities living below the poverty line and how they are disproportionately affected by disasters. The states impacted by Katrina offer a prime example of how a disaster can profoundly impact a disabled, impoverished, immobile population that is dependent on assistance.
A 2004 Harris Poll shows that over 65% of working-age adults with disabilities are unemployed. Of these working-age adults, nearly one third earn an income below the poverty level. This demonstrates that a large percentage of the disability population throughout the country may potentially be as severely affected by disasters as the disability population in Louisiana, Mississippi, and Alabama.
One of the unintended consequences of Hurricane Katrina was that many individuals with disabilities were transferred to facilities and shelters out of their home state without their adaptive equipment and medical supplies. The lack of preparation for this mass influx of people with various disabilities to these facilities and shelters led to inadequate availability of equipment and supplies. Therefore, assistance from outside organizations was greatly needed. United Spinal Association volunteered in this relief effort. The not-for-profit agency donated a filledto-capacity, wheelchair accessible bus and box truck, which was overflowing with supplies and equipment. This included 30 new manual wheelchairs, two power wheelchairs, two hospital beds, a Hoyer lift, 30 new wheelchair cushions, and numerous canes, crutches and walkers, all of which was greatly needed by a New Orleans Resources for Independent Living Center. United Spinal also donated the wheelchair accessible bus, bringing the value of this contribution to over $50,000.
Executive Director Gerard M. Kelly and Deputy Executive Director Paul J. Tobin (front left and right), wished a happy voyage to (back row, left to right) Hubert Fairweather, Ziggi Landsman and Ray Grim before they set off for Baton Rouge, Louisiana, with a bus full of wheelchairs and other equipment destined for consumers of the New Orleans Resources for Indpenednet Living Center.
Future Plans
Winchell’s organization, the Louisiana Council on Developmental Disabilities, was also an active participant in Katrina relief efforts. Witnessing the effects of the hurricane first-hand, Winchell highlighted ways that disaster preparedness can be improved on a national level, including:
• Providing disability training to all personnel involved in emergency response and relief efforts
• Including disability experts in emergency preparedness planning meetings
• Ensuring that disaster relief shelters are accessible to people with disabilities and that accommodations for people with sensory impairments are made
• Creating a tracking system to identify what shelters people are transferred to
• Establishing a clear chain of command
• Ensuring that accessible transportation is available
• Ensuring that all disaster relief shelters accept people with disabilities as well as their family and caregivers.
Although state and federal agencies and organizations are making a more focused effort in correcting such bureaucratic failures and improving disaster preparedness and response strategies, it’s important that individuals with disabilities realize that they can take their own action. Disasters can happen at any time and with limited, or no, warning. Organizations such as the American Red Cross and the Federal Emergency Management Agency have outlined various steps individuals with disabilities can take to prepare for disasters. You can begin by completing a disaster preparedness personal assessment sheet. A printable example of one can be accessed at http://www.redcross.org/services/disaster/beprepared/assess.html. It will give you a good idea of the type of questions you should consider when preparing for a disaster. Upon completion of an assessment of your needs, you should organize a support network of your most trusted friends, family, and co-workers to share this information with. This is one of the best ways to ensure that you reach safety, no matter what emergency may arise. Your network should include people who you routinely share space with, whether it is at home, work, school, and so forth. You may also want to include people who are familiar with your daily schedule, have knowledge of your disability and needs, and can quickly identify your location. The more people you include in your network, the better chances are that you will receive quick and reliable assistance when you most need it. It’s also important to discuss various methods of contacting you during a disaster. Keep in mind that phone lines may not be working. Plan a meeting with your support network and outline as many disaster scenarios as possible. Consider safety solutions for each. Create and share an emergency and medical contact list with everyone and keep copies available. Your support network should be familiar with the function of the adaptive equipment you use and have access to your residence and vehicles at all times. Additionally, if you have a service animal, make sure it is comfortable interacting with everyone in your network.
Conclusion
Disaster preparedness involves the coordination of hundreds of individuals. Although we cannot predict the consequences of every disaster, the more discussion that occurs, and the better informed people with disabilities are, the greater the chance that more lives will be saved.