Like many Texans, Rafael Garcia couldn't sleep while his power was out last week.
He wasn't just cold. He was afraid he'd stop breathing in the middle of the night.
“I had gone a full 24 hours without my breathing treatments, which keep my airwaves open. I remember thinking, ‘OK Ralph, you gotta keep breathing. You can’t have an asthma attack. You can’t panic.’”
The 25-year-old disability rights advocate from San Antonio has spinal muscular dystrophy.
He and his mother endured more than two days of rolling blackouts. Garcia had to ration the medical equipment he uses every day.
“My bed has a two-day battery. My chair has about a five-hour battery. I’m not able to use my ventilator. I’m not able to use that because it needs power.”
Across Texas, people with disabilities and their families struggled to keep powering the equipment they rely on to stay alive or to keep pain at bay.
In the city of Joshua, Ellen Bauman and her granddaughter Kayla went more than a week without running water.
“We have a big family and friends who have been bringing water, and I’ve been heating it on the stove for her to bathe a couple of times a day, which is her routine," Bauman said. "She also has scoliosis, and warm soaps are one of her favorite things to get her some relief there as well.”
Kayla has autism, and Bauman says even breaking from their daily routine takes a huge toll.
“There will be a lot of caregivers who are physically and emotionally drained when this is over with, especially those families that are in life-threatening situations,” she said.
Bauman is president of The Arc of DFW, a nonprofit that advocates for people with intellectual disabilities.
She says the first hurdle is simply getting in touch with people who need help during a disaster.
“I know that there is a huge gap in any type of connection. We have people that are, so to speak, off the grid. Their life is much harder than it has to be, much harder than it should ever be.”Ellen Bauman
Advocates say there aren't many statewide resources for people with disabilities during an extreme weather event. Stephanie Duke with Disability Rights Texas specializes in disaster resiliency.
“There has been a push for inclusive preparedness as far as the obligations of local government," Duke said. "Texas has a volunteer registry for individuals with disabilities to sign up for."
The registry gives local emergency management teams basic information about residents with disabilities.
"But whether or not the local government utilizes that is up to them. There’s no oversight or authority to enforce that," Duke said.
And, the registry doesn't guarantee help. Local nonprofits often have to fill the gap.
Ability Connection serves about 750 people with intellectual disabilities in North Texas.
“Everybody got on the phone right away and started calling people," said Ability Connection CEO Jim Hanophy. "What members were living on their own. They took it upon themselves to get in their cars, despite the weather, to go check on them.”
The winter storm impacted living facilities for older and intellectually disabled Texans across the state. The Texas Standard reports 996 facilities reported weather-related problems the week of the storm. There are more than 4,000 facilities in the state.
It's even more difficult for individuals with disabilities that are not part of a network. Hanophy said there isn't a reliable way to ensure the safety of people that aren't part of a network like Ability Connection, "and that's something that troubles us."
Garcia is not surprised by that. He and his mother had to rely on each other to weather the storm.
“There’s not going to be an organization that goes door-to-door before this happens," he said. "The disabled community, the elderly. In reality we have no safety net whatsoever.”
Advocates say state and local officials need to bolster their emergency disaster plans. Until then, people with disabilities will have to turn to the community for help.
Garcia launched a GoFundMe campaign in the wake of the storm to help pay for a solar generator.
He said he can't afford to rely on the state's power grid.
“It’s not a matter of if this happens again. It’s a matter of when this happens again," Garcia said. "How many lives is it going to take for you to open your eyes?”
Got a tip? Email Miguel Perez at mperez@kera.org. You can follow him on Twitter @quillindie.
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