House spokeswoman Nancy Pelosi said the suffering the winter storm caused in Texas was “heartbreaking”. She said a house panel would take a look “to see how things could have gotten better and better in the future”. (February 18)
For Hannah Giffin, electrical energy is just as important as the air it breathes.
The 24-year-old, recently diagnosed with four new chronic diseases, depends on an oxygen concentrator to help her breathe. When the power went out on Tuesday in San Marco, Texas, she had to ration her oxygen.
“It was emotionally exhausting,” she said. “It’s terrifying not to know if we’ll have the strength to improve my breathing ability.”
No ambulance service was able to refill her oxygen tanks, and since she is at high risk of COVID-19 due to her lung disease, going to the hospital was not an option. Feeling isolated and hopeless, she and her mother Kristin turned to social media to try and get a generator or oxygen tanks from FEMA.
“My husband and I were just beside ourselves,” said Kristin Giffin. “We can’t sleep because we think about what will happen to her when she runs out of oxygen.”
Hannah Giffin rationed her oxygen after her family lost power in the cold Texas weather. (Photo: Hannah Giffin)
Freezing temperatures and winter storms have led to widespread power outages across the country, so people with disabilities and chronic illnesses are looking for ways to access life-saving medical care and recharge the devices they depend on.
For people with disabilities and chronic illnesses, losing power “can be a matter of life and death,” said Jane Buchanan, acting director of the disability rights division at Human Rights Watch.
Earlier this week, more than 4 million people in Texas alone were without electricity after large swaths of the state’s power plants were taken offline. More than 1 million people were without power on Thursday, including more than 400,000 customers in Texas and widespread outages in Louisiana, Alabama, Mississippi, Kentucky and Oregon.
Winter weather has claimed up to 36 lives this week, some of whom died while struggling to find warmth in their homes.
Winter storm tracker: Storm hits northeast, mid-Atlantic; 1M without electricity, including over 400,000 in Texas
According to proponents, the elderly, people with chronic illnesses, and people with disabilities will likely be disproportionately affected by the outages.
“Loss of electricity only exacerbates inequalities that already exist for marginalized people, especially those who are energy, transportation and health dependent,” said Stephanie Duke, attorney at Disability Rights Texas. “It is the mechanisms and processes that we have put in place that create more barriers.”
The disabled community has different needs that could be affected by loss of electricity and water. Electricity is required to power medical devices such as motorized wheelchairs, CPAP machines, and breathing apparatus. Bad weather can also prevent people from getting refills for essential medications and caretakers from reaching patients.
While larger hospitals and facilities do better in Texas, people who live alone or in smaller nursing homes and assisted living facilities are stuck without care, according to Duke.
Duke, also a civil protection officer at Equal Justice Works, said there is tremendous demand in Texas for generators, oxygen, and transportation to heat centers. If they have a serious medical need, people with disabilities may need to go to hospital with unforeseen costs.
This was the case with Ashlynn Hoffner, 32, who was forced to call an ambulance after the battery of her partner’s oxygen machine ran low.
Ashlynn Hoffner called 911 early Monday morning when her partner’s oxygen machine was almost empty. (Photo: Ashlynn Hoffner)
KD Hoffner, 31, is chronically ill with heart and kidney problems that require dialysis and an oxygen concentrator to breathe every few days. Your concentrator needs to be connected at all times and only lasts a few hours with emergency power after the power went out at 2:30 a.m. on Monday.
Hoffner, who works for IBM, guided rescue workers through their darkened home in Richardson. The couple spent the next few days with friends and in an animal shelter, making long drives in icy conditions for dialysis appointments.
“I’m glad I was able to keep it stable. That was very uncertain for the first day,” said Ashlynn Hoffner.
KD Hoffner was rushed to the hospital after losing power to the oxygen concentrator on Monday. (Photo: Ashlynn Hoffner)
While the power is back on in their home, they have no water and Hoffner said they received little help from the local government.
“I’m not going to lie, it’s very frustrating,” she said. “It appears that the government’s response to this has been either ambivalent or downright hostile.”
Mila Clarke Buckley, a 31-year-old with type 1.5 diabetes, also expressed frustration at the lack of communication from local authorities. She said that although she learned in Houston to prepare for natural disasters like hurricanes, no one warned her about the severity of the winter storm.
If your insulin is not stored at a certain temperature, it must be used within 28 days. When she realized she would be without constant power for days, she feared that much of her three-month supply of $ 1,200 would be wasted.
“That’s when I started to panic,” said Buckley. “There seemed to be no end in sight.”
Mila Clark Buckley had to find a new way to store her insulin after her power went out in a snow storm in Texas. (Photo: Courtesy Hangry Woman, Katie Moreno)
To keep the medication cool, she put it outside in an Amazon box with an ice pack and a bluetooth thermometer, usually used for grilling, and remotely monitored the temperature on her phone. While her temporary correction worked, she worries about keeping it up as temperatures change.
“There was a certain point that I just want to give up,” she said.
According to Germán Parodi, co-executive director of the Partnership for Inclusive Disaster Strategies, the “massive” lack of preparation is due to federal, state and local officials failing to work with organizations run by people with disabilities.
Parodi said the FEMA office, which is responsible for the safety of Americans with disabilities, has drastically reduced its staff over the past five years, and local officials have failed to invite people with disabilities to the planning and response process.
“The disability community in Texas has been ignored,” he said.
The effects of the snowstorm on the disabled community are not fully understood and further damage is likely in the coming days, Parodi said.
“We can stop another major disaster if people with disabilities have priority in the next few days,” he said.
The power supply has been restored to the Giffins, and if it fails again, a stranger from Austin has offered to supply them with a generator. Kristen Giffin said the community support has been “overwhelming” and she plans to set up a nonprofit organization to supply generators to people who rely on oxygen concentrators.
“I think a lot of good comes out of tragedy,” she said. “We are interested in this happening now.”
Featuring: Ryan Miller, USA TODAY.
Follow N’dea Yancey-Bragg on Twitter: @NdeaYanceyBragg
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