Circa 2006
As Hurricane Katrina brewed over the Bahamas on August 23, 2005, Kim Cook, a 23-year-old New Orleans woman with cerebral palsy, had no idea that in just six days her life would be in danger.
She almost certainly assumed, as many did, that the people, community-based organizations and government she relied upon every day would come to her aid in an emergency. But in the end, Cook would find safety only after a long, arduous journey. Nearly 2,000 others, including many residents with physical and cognitive disabilities, would die in one of the deadliest and most expensive natural disasters to ever hit the United States.
Despite the unprecedented scale of the disaster, it didn’t have to be that way. The problems that plagued the emergency response and relief to Katrina had been identified years earlier. In the wake of the 9/11 terrorist attacks, government and nonprofit groups advocating for the rights of people with disabilities investigated emergency response systems. Their findings, written months and years before Katrina, now read like a summary of all that went wrong.
For example, a 2004 National Council on Disability report entitled Saving Lives identified multiple deficiencies in federal and regional emergency management, which were later demonstrated during Katrina.
Today, concerned disability advocates are focused on preparing their organizations and communities. They say complacency and ignorance cannot be excused again.
Janna Starr, Director of Disability Rights Policy at United Cerebral Palsy, says, “What we must ask now is this: Will we use, as communities and individuals, what we learned from Katrina and other disasters to prevent more needless loss of life?”
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GATHERING STORM
After crossing Florida as a category one hurricane, Katrina exploded over the Gulf of Mexico into the sixth largest Atlantic hurricane ever recorded. As forecasters increased the probability of a direct hit on New Orleans, city officials began to put their meager emergency plans into motion.
On August 27, Kim Cook got word that officials in Saint Bernard Parish, a township bordering the Mississippi River and the city of New Orleans, were calling on residents to evacuate.
Cook lived in an assisted living apartment building, and she depended on her power wheelchair for mobility. She also depended on Pat Williams, a professional caregiver from United Cerebral Palsy of Greater New Orleans, whom she lovingly called “Ms. Pat.” Williams, who worked for UCP on contract through the state’s Medicaid program, supported Cook in performing everyday tasks like getting dressed and cleaning up around her home.
For the most part, however, Cook lived in the community on her own. Her parents had passed away, and she had a small circle of friends. So when word came to evacuate, Cook called Williams for help.
That call highlights a critical aspect of how communities react to emergencies.
According to Dr. Anthony Cahill, a senior research scientist at the University of New Mexico Center for Development and Disability, people with disabilities first turn to other members of their community of interest—such as church groups or disability organizations— for help, whether or not these systems can actually support their needs.
In addition, they tend to mistrust the official response system, a reaction that is understandable, but if not addressed, may frustrate future attempts at better integration of services.
“One of the things that has stunned me—and I don’t stun easily—is the level of apathy [people with disabilities feel] about the official response system at all levels. They are not even angry at us anymore—they just don’t care,” said Cahill at an emergency management meeting sponsored by the U.S. Department of Homeland Security. “That to me is much more dangerous than being really mad at us, and it is something I think we probably need to do something about.”
Nevertheless, if Cook had called St. Bernard Parish officials, they probably wouldn’t have been prepared to help her evacuate anyway. Metropolitan New Orleans did not have a stellar paratransit system to begin with, and local government clearly did not (or could not) reserve or rally the accessible transportation resources required to evacuate large numbers of people with disabilities.
In addition, though the 2000 census found that more than 23 percent of New Orleans residents had disabilities, officials simply had no idea how many people with disabilities were in their district, where they lived or how to effectively communicate with them, especially people with visual, hearing and cognitive disabilities.
Researchers say this lack of awareness is not uncommon. Nobody Left Behind, a University of Kansas research project that examined 30 federal disaster areas across the country, found that 57 percent of emergency managers didn’t know how many people with disabilities lived in their jurisdictions.
“The research says that individual responsibility [for evacuation] is a possibility, but not for all. This has to be a partnered solution for many people with disabilities and for the elderly,” notes Dr. Brenda Phillips, a professor specializing in emergency management at Oklahoma State University.
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HIGHER GROUND
Pat Williams told Cook not to worry—she and her husband would evacuate Cook to their home in New Orleans’ ninth ward. But Williams’ husband, Harold Foy, worried that Cook wouldn’t be able to escape if the storm surge flooded their neighborhood. So, the family decided to ride out the storm at their daughter’s home, still in the path of the storm but on higher ground. And on August 29, Hurricane Katrina reached Louisiana.
“The storm hit and we thought we were going to be okay,” said Cook. “But then the levy broke, and water started coming into the house.”
Abandoning Cook’s power wheelchair and other assistive technology, the Williams family carried her to a neighbor’s two-story home. As the first floor flooded, they brought Cook, who was now totally dependent on others, to an upstairs bedroom. Cook was scared, but she was safe—for now.
Others, however, were not so lucky. In testimony before Congress, Marcie Roth, the executive director of the National Spinal Cord Injury Association, spoke passionately about Benilda Caixetta, a New Orleans woman with quadriplegia. After the hurricane, Caixetta’s panicked sister contacted Roth and pleaded for help. Roth called Caixetta, who was still in her New Orleans home.
“She kept telling me she’d been calling for a ride to the Superdome since Saturday, but despite promises, no one came,” Roth told the U.S. House Ways and Means Committee. “I was on the phone with Benilda when she told me, with panic in her voice, ‘The water is rushing in.’ And then the phone went dead.”
Roth learned five days later that Caixetta had drowned and had been found floating in her apartment next to her wheelchair.
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BACK SIDE OF THE SUPERDOME
Kim Cook huddled with the Williams family on the second floor of their neighbor’s home for a full day before the rising water became too much.
“It’s like it was chasing us,” Cook told the TimesPicayune.
They flagged down a Coast Guard boat and escaped through a second story window, carrying Cook with a blanket. The boat brought them to a highway overpass.
Williams shielded Cook from the blazing sun and kept her hydrated and nourished. Then another boat came along and carried them to the chaotic Superdome, which the city had declared a shelter of last resort.
Emergency responders at the shelter told the Williams family that Cook had to go to the special needs shelter at the back side of the Superdome. Williams, concerned that Cook would not survive alone, decided to stay with her while the rest of the family remained at the main shelter. She would not see her husband again for three months.
“I said I wasn’t leaving her,” Williams told the TimesPicayune. “They would have put her in a nursing home. I told [my family] I would see them later.”
When they got to the special needs area, police and National Guard soldiers told them no more people could be taken into the shelter. Instead, Cook and Williams were placed on a truck that later dropped them off at a highway overpass.
Immediately following Katrina, the National Organization on Disability led an investigation—called the Special Needs Assessment for Katrina Evacuees (SNAKE)—to examine special needs shelters across the gulf coast. The group’s Emergency Preparedness Initiative is a cross-disability program dedicated to disability preparedness.
The SNAKE report found that there were no consistent standards for special needs shelters. Only 50 percent had policies, plans or guidelines for serving people with disabilities, and only 36 percent had staff members with specific expertise. The report also noted that shelter workers were not trained to identify disabilities effectively, and that scores of shelters failed particularly in communicating with evacuees who were deaf.
The National Council on Disability, an independent advisory group whose members are selected by the President, pointed a finger at the Red Cross, which raised more than $1 billion, mobilized 245,000 volunteers and operated 1,300 general shelters in the aftermath of Katrina. Chartered by Congress, the Red Cross receives significant federal funding.
In a report, the group said the Red Cross refused to accept people with disabilities in many of their general shelters. As a result, families were split up when relatives with disabilities were turned away. Other people with disabilities could not access critical services because shelters were not accessible to people with a variety of disabilities.
Going further, the report said, “The existence of special needs shelters does not relieve managers of general shelters of their legal obligation to provide reasonable accommodations for people with disabilities.”
Compounding the problem, the term special needs shelter has been poorly defined, and therefore most have not been prepared for many of the needs they encounter. Frequently run by community health departments, special needs shelters served disparate groups during Katrina, from people who needed constant medical care to non-English-speaking evacuees needing translators.
Some experts now say emergency managers should throw out the special needs label altogether and adopt more descriptive language. And disability advocates are strongly urging the Red Cross not only to discard the special needs label, but also to improve the accessibility standards of all shelters nationwide and beef up volunteer training.
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RESTORING INDEPENDENCE
Williams flagged down an ambulance and convinced the driver to take them to Baton Rouge, where they waited in a shelter at Louisiana State University for a week. There they met Father Sam Maranto, the pastor of St. Gerard’s Majella Church in Baton Rouge. He offered his business card, telling them to call if they needed help.
Days later, they did. Sent to a shelter in Lake Charles, the women were told they would be evacuated to Texas as Hurricane Rita once again threatened the Gulf Coast region. Tired of traveling and longing for home, they called Father Maranto and asked him to come pick them up. Back in Baton Rouge, Cook and Williams settled into Father Marento’s church rectory.
But Cook still didn’t have a wheelchair, and Williams, whose husband was now in New Mexico, wasn’t getting paid for staying by Cook’s side. They both struggled to restore their independence.
Thousands of other people with disabilities were struggling, too. They had abandoned wheelchairs and other assistive technology in the rush to evacuate. With limited space in helicopters, boats and buses, some rescuers refused to save service animals. And shelters were full of people with disabilities desperate for things like walkers, hearing aids and even adult diapers.
“Basic things that you take for granted as part of an emergency triage were not really being addressed for the special needs population,” says Elise Hough, executive director of United Cerebral Palsy of Greater Houston, which coordinated services for evacuees with disabilities at the Astrodome. “The needs that are determined as basic for the general population are not always going to be adequate for the special needs population.”
In addition, shortages of equipment and medicine drove people with functional disabilities—conditions that cause difficulty taking care of personal needs but don’t require constant medical attention—to already overwhelmed special needs shelters. The consequence, according to Dr. Steven Christianson, Medical Director of the Visiting Nurse Services of New York, was that “Three times the space and probably four times the staff were taking care of people who otherwise would be independent if they had what they needed.”
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FINDING A NEW HOME
Generous new friends in Baton Rouge helped Cook find a new power wheelchair, which was fitted to her specifications. United Cerebral Palsy of Greater New Orleans scraped together funds to pay Williams, at least for a time. But Cook and Williams, having lived in the St. Gerard’s church rectory for weeks now, longed for their own home and to get on with their lives.
After Williams’ husband arrived in Baton Rouge, the three decided to find a new home to share. They pooled together all their resources, which amounted to just over $50,000.
Father Marento, who knew his community inside and out, found a well-kept two-bedroom house close by for exactly $54,000. Thrilled, Cook and the Williams family moved into a fully furnished house, thanks again to Marento, on December 22, 2005.
Thousands of people with severe disabilities, including many seniors, were not so fortunate. Not only did at least 68 nursing home residents die because they couldn’t evacuate, but thousands more were shuttled from one institution to another for months. Others who had lived independently before the storm were placed indefinitely in institutions, many of which were already overwhelmed and unsafe.
Indeed, a 2005 report by the National Council on Disability suggested that many nursing homes are not a hospitable environment for residents with disabilities. At the time of the evaluation, 1.5 million Americans lived in 17,000 nursing homes, 30 percent of which had been cited for harming residents or placing them at risk of serious injury or death. In addition, up to 85 percent of abuse incidents in these institutions went unreported. Policymakers, the group said, cannot even begin to solve the problems associated with evacuating people in institutions without addressing the systemic violation of their civil rights.
Shortly after Katrina, mini trailer park ghettos popped up across the South. Louisiana storm victims alone occupied more than 75,000 FEMA trailers. Although some experts estimated that up to 25 percent of Katrina evacuees were people with disabilities, less than two percent of FEMA trailers were actually accessible.
In September 2006, more than a year after Katrina, FEMA settled a lawsuit brought by 11 Katrina and Rita evacuees with disabilities and agreed to make just five percent of its trailers accessible. In addition, the agency agreed to respond to requests for accessible trailers within five days, and then offer a timeframe, within 30 to 60 days, for finishing modifications. According to the agreement, evacuees with disabilities were entitled to a trailer with a ramp, wider doorways and more turn space for wheelchairs, among other modifications.
Even today, about 5,000 Louisianans remain in FEMA trailers.
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PROGRESS ON PREPAREDNESS
“You can’t hurt my feelings—I’m way beyond that,” said FEMA Director David Paulison at an emergency management conference in June 2006. “Let’s work together and fix it.”
Paulison spoke at the Working Conference on Emergency Management and Individuals with Disabilities and the Elderly, which brought together emergency management officials from all 50 states to discuss disability preparedness.
While continuing to point out serious deficiencies, many disability advocates cautiously approve of the Bush Administration’s new-found focus on preparedness, including a willingness to include disability advocates in conversations on emergency management.
For example, Hilary Styron, Director of the National Organization on Disability’s Emergency Preparedness Initiative, participated in a national plan review ordered by the president and offered critical feedback on behalf of the disability community.
Congress has also made some progress, with Senator Susan Collins (R-ME) and the Senate Committee on Homeland Security and Government Relations leading the way. A number of far-reaching provisions, including the creation of a new National Disability Coordinator, were attached to a U.S. Department of Homeland Security appropriations bill, which was recently signed by the president. Importantly, the legislation also mandated nondiscrimination in disaster assistance for people with disabilities.
In addition to advancing public policy, disability service and advocacy organizations are focusing more on preparing their own groups and the individuals they serve. Improving personal preparedness, they say, is a critical step towards making real progress.
“We’ve learned that organizations like ours and people with disabilities need to be extra vigilant in preparing themselves for an emergency because our needs are often far more extensive,” says Janna Starr.
People with disabilities can make their own emergency plan by locating the best evacuation routes from their homes and workplaces, storing extra prescription medicines in an accessible place and keeping an emergency kit close by. In addition, families and friends can establish communication plans in the event traditional channels fail. Simple steps taken now, says Starr, can make a big difference in an emergency.
And as people with disabilities, communities and government improve preparedness, hopefully no one will need as many miracles as Kim Cook did to find safety and happiness in the wake of disaster.
by Jim Baker
PREPARING MAKES SENSE…
1. Get a Kit
Prepare an emergency kit based on your individual needs, which might include water, food, a battery-powered radio, a flashlight and a first aid kit. Make sure you remember to keep personal documents needed for essential government services accessible.
2. Make a Plan
Identify family, friends and co-workers in your personal support network, and plan how you will communicate with them if telephone service is interrupted. Consider evacuation routes from your home and workplace.
3. Be Informed
Understand the unique emergency risks in your community, and follow information alerts put out by emergency officials. Educate yourself about personal preparedness by visiting www.ready.gov
To read the entire National Organization on Disability’s Preparing Makes Sense guide for people with disabilities, visit www.nod.org/emergency
