‘I don’t know who cares about us’: How Texas failed people with disabilities during the freeze

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Olivia Esparza grew desperate as she watched her daughter, Diana, get colder and colder in the February freeze.

Diana, 20, has a condition called Rett syndrome and is non-verbal and non-mobile, and needs electricity to power the machines that keep her healthy: one that helps her breathe at night and another suctions saliva out of her mouth so she doesn’t choke. When Esparza’s house lost power, she worried about whether Diana would be able to breathe; if the milk she feeds her would spoil without refrigeration.

And she seethed.

She had filled out paperwork to register with CenterPoint as a critical care customer, and she believed she would get a warning about coming outages. She never heard anything.

Power outages from storms or other catastrophes are not just inconveniences for many medically fragile Texans. They are life threatening.

When power abruptly shut off across the state in February, it imperiled thousands of Texans who need electricity to survive. State officials have so far attributed 110 deaths to the storm — though a Houston Chronicle analysis has pegged that number at nearly 200 — and at least 20 are believed to have suffered from serious medical conditions and needed power to help keep them alive or healthy.

Despite a stream of natural disasters hitting the state over the past decade, the February freeze revealed continued problems Texas’ disabled community faces in times of emergencies And the measuresthat are in place, such as the State of Texas Emergency Assistance Registry statewide registry — meant to help emergency planners prepare for disasters — orspecial designations with power companies like the one Esparza signed up with, provided little help during the blackout, according to a survey of nearly 600 disabled residents that asked about their experience during the freeze.

Advocates for the disabled community say both STEAR and utility company programs promote a “false promise.”

“When you have these big events, that’s when people really need help,” said June Kailes, a consultant who specializes in disability policy. “And that’s when it doesn’t work. … So you don’t dangle this registry in front of people, it’s a false sense of security.”

Turner’s disabilities czar, Gabriel Cazares, said, “In theory, registries seem like a good idea. But the STEAR Registry is a data dump that the state collects — and makes available to cities without any funding, without any support, without any guidance.”

Now, Cazares said, many in the disability community are deeply suspicious of registries.

“The state of Texas provides inadequate support for people who are electrically dependent. It’s terrible,” said Laura Stough, a professor of psychology at Texas A&M University who studies the impact of disasters on people with disabilities and advised the Texas Department of Emergency Management.

Read the full article on the Houston Chronicle’s Website.