By Venessa Wong: For Entire Post, Go Here…
America’s safety net for people with disabilities was never secure. In the pandemic, it’s failing them.
Chelsy knew something was seriously wrong with her health after she suddenly fell asleep while driving with her infant daughter in the backseat. It was her first major narcoleptic event — she was in her mid-twenties — and “it was absolutely the most terrifying moment in my whole life,” she said. By chance, she was at a stoplight, her foot stayed on the brake, and no one was hurt. She awoke to a cacophony of horns, and “I absolutely lost my mind.”
She underwent a long succession of tests. Chelsy was diagnosed with a number of conditions: episodic sleep disorder, insomnia, chronic fatigue, and fibromyalgia. She continued to feel terrible. It took more than a year before she was diagnosed with primary immunodeficiency disorder, a genetic condition that weakens the immune system. Her daughter, who also experienced some health challenges, had it as well. They both saw their conditions progress to common variable immune deficiency (CVID).
She found part-time work at a contract post office run from a quiet hardware store outside of Denver and freelanced as a journalist. The post office paid close to minimum wage, offered no benefits, and she still got sick — a lot — but her boss understood her medical needs, and the job filled the gap where the disability checks fell short, allowing her to buy medicine, groceries, and gas. She got engaged again; they bought a house. “It’s not like I’ve ever drawn my disability check, and then just kicked my feet up,” she said. “But my body can only do so much, and it will only ever be able to do so much.” For the last seven years, Chelsy and her daughter got by this way, if barely.
Then the coronavirus arrived.
The country’s disability safety net was never adequate to support many of the people who rely on it, and throughout the pandemic, it has failed those like Chelsy who are now unable to find ways to make up the shortfall. She still has medical expenses to pay. Chelsy said while the government’s Social Security Disability Insurance provides necessary aid, it was never possible to survive on it alone, making it hard for recipients like her to get by if they lose their supplementary earnings.
“I’ve done essentially everything, adjusted every knob and dial to try and maximize and make our finances work as best as possible, and trimmed every bit of fat. And as of last month, I am officially out of money,” she said. “I have nothing left for the rest of the year.”
Social Security offices have been closed since March, which disability experts say has caused applications from people who need help to plummet. Unemployment remains high. There’s little else Chelsy can do until the country’s crises are under control. “In the short term, I need money. But I can’t go back to my job at the post office without risking not only my life, but my daughter’s life. That’s just 100% not a risk I’m willing to take.”