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Dear Readers, The following letter from Marcie Roth, Executive Director and CEO of the National Spinal Cord Injury Association, addresses many of the ongoing concerns associated with emergency preparedness of people with disabilities, despite all the hard work of advocates to address these complex issues in the wake of recent disasters. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ To whom it may concern: The National Spinal Cord injury Association has been working on the many complicated issues associated with preparing for emergencies for people with disabilities across the country and helping communities to plan for their additional needs. We have made a real effort to educate our members and our constituents about their responsibility to be prepared and to become active in their community preparedness activities. As a result, we often hear from people about their experiences. The stories we hear are occasionally encouraging, often disturbing, and sometimes we hear about a situation that is so worrisome that it makes us wonder what it will take for communities to adequately plan for the additional needs of their community members with disabilities to avert real danger. The Georges story is one of those it was featured in a recent issue of SCI Life and it is being updated, below. When Hurricane Ernesto came through Broward County, FL last year, Laura and Greg George, residents of the county, were concerned about Laura's additional needs as a pregnant woman and Greg's additional needs after he became paralyzed due to a T-5 spinal cord injury a few months prior. While planning for possible evacuation, as they had been encouraged to do, the Georges discovered that not only was it difficult to find an appropriate shelter for a family that included a close-to-term pregnant woman, they were shocked to discover that there was nowhere at all for Greg to go! They were stunned when they were told that he was ineligible for admission to the Broward County Special Needs Shelter! Throughout the many meetings and workgroup sessions I participated in over the past year, addressing and integrating the additional needs of people with disabilities in emergencies and disasters into the National Response Plan and other initiatives, Florida was consistently held up as the "best state" for people with disabilities to be in an emergency or disaster, due to their large population of seniors and people with disabilities, their considerable experience in evacuation and sheltering and their need to repeatedly address the additional needs of a large population of people with disabilities. For this reason, I was initially skeptical about the George's story. NSCIA has not been supportive of the plan to create separate "special needs" shelters because of our concern about separating people with disabilities from their family and other community supports in a disaster. We believe that the best approach is for all shelters to plan to meet the functional needs of all but those with acute medical needs that should be addressed by the med surge experts. This is because we are well aware of the problems that occur when large numbers of people with additional needs are congregated separately from the rest of the community who may be able to offer what we call "natural supports". We believe that concentrating a large group of people who all have additional needs might sound logical, but in fact, this approach limits the available assistance of family, friends and those citizens who might be willing to help in an emergency, including the many skilled individuals who are employed to assist people with disabilities every day throughout our communities. And, when planning for the additional needs of people with disabilities to be met at a location separate from the rest of the community, the general shelters are left entirely unprepared if the special needs shelter turns out to be at "ground zero" and the general shelters become the only option for people who were registered for the special needs shelter. In Broward County, with addresses like Fort Lauderdale, Hollywood, and others just north of Miami, "special needs residents are defined as persons with health-related problems who do not qualify for admission to a public shelter operated by the American Red Cross due to the nature of their health care needs". However, according to their website, http://www.broward.org/hurricane/hm_special_needs.htm, special needs shelters in Broward County "CANNOT accommodate persons in a wheelchair who cannot transfer to a bed or toilet without assistance, persons who are incontinent and not accompanied by a caregiver" and other exclusions. The Broward County website goes on to say, "People with disabilities have the same choices as other residents about whether to evacuate their homes and where to go when an emergency threatens." But, it gives no additional information for those who will be denied access to the Red Cross and Broward County shelters, and, according to the Georges, people with disabilities really don't have the same choices about where to go. In fact, they simply have nowhere to go. The Georges have been taking their concerns to their elected officials for a year now, and have tried to work with the Broward County Office of Emergency Management. Last week, they were told that OEMS was working on a resolution, but that there was still no place for Mr. George to go in the event of a hurricane or other evacuation. Mrs. George reports that one individual who works for the "Hurricane Registration" office asked if the family would consider moving or asking a doctor to "fudge" a statement that would establish a reason for Mr. George to be admitted to a hospital in an evacuation. After a year of contacting local officials and shelters, the Georges still have no place to go and less than one month until the official start of hurricane season. I wonder, despite all of our best efforts, where else are people with disabilities excluded and what else can we do to ensure that all communities are prepared to meet the additional needs of residents and visitors in an emergency. If the Georges are any indication, a lot of hard work by thousands of people and a lot of tax and donor dollars have not yet been very effective in addressing these critical issues for the real people behind all of the planning! Sincerely, Marcie Roth
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