Aug. 15, 2006 – During Hurricane Katrina, Benilda Caixeta, a New Orleans resident with quadriplegia, tried for two days to seek refuge at the Superdome. Despite repeated phone calls to authorities, help never arrived for Caixeta. Days later, she was found dead in her apartment, floating next to her wheelchair.
"Benilda need not have drowned," testified Marcie Roth before the US House of Representatives Bipartisan Disabilities Caucus in November 2005. Roth, executive director of the National Spinal Cord Injury Association, had personally placed calls to prompt Caixetaâ€™s evacuation.
"People with disabilities are not in good hands," Roth said.
While there are no concrete estimates of how many people with disabilities died as a result of Hurricane Katrina, 71 percent of the 1,330 victims were older than 60, according to a 2006 report by the White House, suggesting people with special needs suffered disproportionately.
Disabled-rights activists have been calling for inclusive disaster-preparedness plans for years â€“ from wheelchair-accessible transportation to closed-caption emergency messages on television. But despite some progress on both the federal and state levels, and even a 2004 Executive Order to strengthen preparedness plans to serve people with disabilities, critics say recent disasters illustrate how disabled people are still being left out of evacuation plans.
Disabled-rights advocates say traditional evacuation plans, which often rely on at least some walking, driving, seeing and hearing, are not appropriate for many people with disabilities.
The Americans with Disabilities Act (ADA) of 1990 requires that emergency preparedness and response programs be accessible to people with disabilities. But critics say there is currently no standardized federal preparedness plan for disabled people, and many state and local emergency management offices do not have appropriate plans in place to account for special needs.
"There isnâ€™t ownership clearly defined by the federal government as to who is responsible for disability planning," Hilary Styron, director of the Emergency Preparedness Initiative for the National Organization on Disability, told The NewStandard.
While President Bushâ€™s executive order created the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities, the council is only instructed to "encourage" state and local jurisdictions to consider special needs in its planning.
The ADA defines a disability as a "physical or mental impairment that substantially limits one or more of the major life activities of such individual." There are an estimated 50 million people living with disabilities in the United States.
Disabled-rights advocates say traditional evacuation plans, which often rely on at least some walking, driving, seeing and hearing, are not appropriate for many people with disabilities. Activists have been pushing for more responsive plans, and for governments to include people with disabilities and their advocates in the planning process. Although some states have adopted measures that have begun to account for the needs of people with disabilities, such as a reverse 9-1-1 system and more accurate records on the locations of people with disabilities, gaps still exist.
â€œWhat happens if you lose your wheelchair and then youâ€™re placed in a shelter? You can no longer get up to go to the bathroom by yourself. People lose their independence.â€
Styron said emergency managers have difficulty planning for people with disabilities because there is no "one-size-fits-all approach."
She also said many states have seen emergency management funding cut in recent years. According to the National Emergency Management Association, a national nonprofit that produces the only report to examine state-level emergency management funding, there is currently a $246 million shortfall in the governmentâ€™s Emergency Management Performance Grant Program. The program is the primary federal funding source for states and local jurisdictionsâ€™ emergency management programs.
A three-year study completed in 2006 by the Research and Training Center on Independent Living at the University of Kansas investigated 30 randomly selected counties, cities or boroughs in the US that had recently experienced a natural or man-made disaster. Researchers found that only 20 percent of the emergency managers had specific guidelines to assist people with mobility impairments during emergencies.
Additionally, the study discovered that 57 percent of emergency managers did not know how many people with mobility impairments lived in their jurisdiction, and only 27 percent of managers reported completing a course offered by FEMA to help emergency responders understand the needs of people with disabilities.
"People [with disabilities] are being left behind," said Cat Rooney, project coordinator for the study.
FEMA and emergency management offices in Louisiana, Arizona, Florida, California and Delaware that were part of the University study, did not return TNS interview requests.
â€œIf you have a disability, you could be dependent on medical equipment. You could have a special diet. You could have medication that you have to take. You donâ€™t just need a house; you need an accessible house.â€
Jeanne Abide, complaints specialist for the Advocacy Center, a disabled-rights organization in New Orleans, said there simply was not appropriate assistance for people with disabilities after the hurricane. According to the National Council on Disability, 155,000 residents living in the three cities hardest hit by Katrina â€“ Biloxi, Mississippi; Mobile, Alabama; and New Orleans â€“ were disabled and over the age of five.
Abide told TNS that the preparedness problems specific to people with disabilities in New Orleans included a lack of appropriate transportation and emergency housing. In February, the Center filed a lawsuit against FEMA, alleging that five months after the hurricane, the agency was still not supplying accessible trailers to people with disabilities.
Disabled-rights advocates say that people with disabilities have a host of concerns that non-disabled people may not consider during emergencies. Groups say many people with disabilities in New Orleans were evacuated without their medicine, medical equipment, wheelchairs and even guide animals.
"What happens if you lose your wheelchair and then youâ€™re placed in a shelter?" said Rooney. "You can no longer get up to go to the bathroom by yourself. People lose their independence."
Dr. Glen White, the principal investigator for the University of Kansas study also stressed the needs of people with mental impairments. "If someone has schizophrenia and theyâ€™re put in a great big shelter with all these other people around them, and they donâ€™t have medication, that can cause a lot of problems," White told TNS.
Other recent disasters have also put the shortfalls of emergency preparedness and response for those with disabilities in the public eye.
A 2004 report by the California State Independent Living Council (CALSIC) found that the emergency response plan for people with disabilities floundered during the 2003 wildfires, in which 730,000 acres of the state burned. The report said that many people with impairments were unable to see approaching danger, or hear announcements to evacuate, which police sometimes made over loudspeakers. There was a lack of transportation for people who were unable to drive themselves, and power outages meant that emergency responders could not access computerized lists of disabled people. Finally, emergency telephones set up at evacuation sites were not equipped for people who were deaf, and were not within reach of people in wheelchairs.
"Thereâ€™s just so many tiny things that people donâ€™t think about," White said. "Are these all going to go away? No. But the more planning we can do, the better we can make it for people."
Filling the gaps
As local, state and federal planning fails, people with disabilities and their advocates are doing their best to compensate.
Susan Fitzmaurice, who uses a mobility scooter and has a child who is disabled, was concerned about the temporary housing being offered to Katrina victims, with no mention of the special needs of people with disabilities. Although she lives in Michigan, Fitzmaurice was determined to help. Within days of the hurricane, she set up a website, KatrinaDisability.info, to provide much-needed resources.
"With a typical able-bodied person, you could snatch them up out of their house, take them to a motel room and say, â€˜Hereâ€™s $50 to get you through the next couple of days,â€™" Fitzmaurice told TNS. "But if you have a disability, you could be dependent on medical equipment. You could have a special diet. You could have medication that you have to take. You donâ€™t just need a house; you need an accessible house."
Fitzmauriceâ€™s site has now become a clearinghouse for disability-preparedness information, and includes links to local and national emergency response information for Louisiana. She has made similar sites for 30 other states.
"Itâ€™s wonderful, but then on the other hand," she said, "Iâ€™m like: â€˜I shouldnâ€™t be doing this. The federal government should be doing this.â€™".
Members of the Central Virginia Post-Polio support group are also taking matters into their own hands by inviting speakers to discuss disaster planning at their meetings. Dr. Henry Holland, a polio survivor who uses a wheelchair, and a member of the support group, told TNS that people with disabilities have to become self-reliant.
Holland said the threat of a disaster for someone with a disability is "scary." He said a good support network and generator at his home made him well-equipped if a disaster hit.
"But what about people who canâ€™t afford that or donâ€™t have access to help?" he said.
Addressing the needs
As some people with disabilities and their advocates take matters into their own hands, Styron and others are still pushing federal and local governments to adopt adequate emergency preparedness measures.
Styron said she would like to see a disability coordinator at the federal level, a coordinator assigned to every FEMA region in the country, and a designated official within each state responsible for disability planning.
She is also advocating for state and local jurisdictions to integrate people with disabilities and their advocates into the emergency planning process.
"If you donâ€™t even know the population that youâ€™re dealing with, youâ€™re never going to get there," she said.