Newswise — When Hurricane Ike knocked out the power to Kathleen DeSilva's ventilator at her house in the Heights, a gasoline-powered generator was all that was keeping her alive. And like many Houstonians, her relatives had a hard time finding gas during the two weeks she was without electrical service.
"We had some close calls at first when gas was hard to find," said DeSilva's husband, Peter Simmons, who also has a spinal cord injury. "Sometimes, we only had a couple of hours of gas left."
A new report by The University of Texas Health Science Center at Houston and TIRR Memorial Hermann chronicles some of the post-hurricane challenges experienced by the estimated 30,000 Houstonians with severe disabilities who sheltered in place or were evacuated after the September 2008 storm.
"The outage was hard enough on people who can get around on their own," said Lex Frieden, a professor at The University of Texas School of Health Information Sciences at Houston and senior vice president at TIRR Memorial Hermann. "Imagine how hard it was on people who can't."
The report is based on a community outreach project coordinated by Frieden and UT School of Health Information Sciences colleague Kim Dunn, M.D., Ph.D., to help people with severe disabilities in the Greater Houston area affected by Hurricane Ike.
The Gulf Coast Hurricane Ike Relief Fund through the Greater Houston Community Foundation provided $191,000 for the project, which received additional support from TIRR Foundation, the Christopher and Dana Reeve Foundation, United Spinal Association and numerous other organizations and individuals.
Millions of people in the Houston area were without power as a result of Hurricane Ike " many for weeks. "People who need electricity to power ventilators, chemo pumps, home dialysis machines and wheelchairs were placed in life-threatening circumstances," Frieden said.
There were other issues, too. "Some people lost their homes and transportation. Some were separated from personal care attendants and providers of medical services. Others ran out of medication or lost their ability to live independently because they lost everything and had to move to another location," he said.
A team organized by the faculty members called nearly 28,000 people who were either registered with the METROLift public transportation program or who had enrolled in the 2-1-1 Transportation Assistance Registry program. Of those individuals, 843 needed extra help filing claims with the Federal Emergency Management Agency, getting around, refilling prescriptions and other services.
"One woman who was visited by a project staff member was found on the floor next to her refrigerator so she could easily access her food supply," Frieden said. "She was given a power chair. A ramp was constructed. And food delivery arrangements were made."
Frieden cited another example of assistance. "A generator and fuel were delivered to a woman who was charging her wheelchair at a McDonald's restaurant for eight hours a day," he said.
The information generated by the project is being used to produce a disaster assistance pamphlet with specific and practical information for people with disabilities, Frieden said. The pamphlet and other useful information will be available on www.disability911.com.
The team also contacted people with disabilities at an American Red Cross shelter. "In some instances, people had run out of their medications," Dunn said.
Dunn believes many problems could be avoided by making medical records available electronically. This way, records could be accessed anytime regardless of whether the person sheltered in place or evacuated.
"By providing assistance at a Red Cross shelter, it was clear that there was a critical need to support the continuity of healthcare information in a crisis situation," she said.
Dunn is working with primary care physicians to develop an emergency preparedness plan for their patients with disabilities. "An ounce of prevention truly is worth a pound of cure," she said.
For DeSilva, who broke her neck in a gymnastics accident when she was in high school, the ordeal began as Ike laid siege to the city's power lines.
"The power was going on and off and it was tripping the alarm on the ventilator. I bet the alarm went off 10 to 15 times that morning before the power finally went off for good," said DeSilva, who was the chief counsel for TIRR (now TIRR Memorial Hermann) for more than 20 years.
"As bad as that sounds, it was nothing compared to the next two weeks that followed," said Simmons, who was permanently injured in a 1978 motorcycle accident.
During the outage, relatives had to tote about 200 gallons of gasoline to the couple's home, he said. In addition, the couple's caregivers had to refuel a hot generator in the middle of the night with only flashlights to see.
The couple has since purchased a natural gas generator, which will kick in within 10 seconds of a power disruption. "We were fortunate to have family nearby to help us. In a disaster, you realize how important others are. Hurricane Ike was certainly a challenge for a person with a disability," DeSilva said.
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