Her doctors told her she would have to get insurance to pay for an interpreter, which is incorrect: Under federal law, it is the physician’s responsibility to provide one.
Goel’s mother stepped in to interpret instead. But her signing is limited, so Goel, who has only some vision, is not sure her mother fully conveyed what the doctors said. Goel worries about the medical ramifications — a wrong medicine or treatment — if something got lost in translation.
“It’s really, really hard to get real information, and so I feel very stuck in my situation,” she signed through an interpreter.
Telemedicine, teleworking, rapid tests, virtual school, and vaccine drive-throughs have become part of Americans’ routines as they enter Year 3 of life amid Covid-19. But as innovators have raced to make living in a pandemic world safer, some people with disabilities have been left behind.
Those with a physical disability may find the at-home Covid tests that allow reentry into society hard to perform. Those with limited vision may not be able to read the small print on the instructions, while blind people cannot see the results. The American Council of the Blind is engaged in litigation against the two dominant medical testing companies, Labcorp and Quest Diagnostics, over touch-screen check-in kiosks at their testing locations.
Sometimes the obstacles are basic logistics. “If you’re blind or low-vision and you live alone, you don’t have a car,” said Sheila Young, president of the Florida Council of the Blind, pointing to the long lines of cars at drive-through testing and vaccination sites. “Who can afford an Uber or Lyft to sit in line for three hours?”
People directly affected by accessibility barriers, especially those living in communal settings or the homebound, often don’t have the time, money or energy to file legal complaints.
“You’re in the middle of a pandemic, how much do you want to alienate your doctor?” she asked.
“There’s no ADA police,” Hamlin said. “All the burden is on the consumer.”
Goel’s doctors broke the law, but they are not being punished or penalized for it. And she doesn’t know whom she would talk to about suing.
“Instead of growing in independence, it just feels like I’ve gone backwards,” she said.
The accelerating shift toward at-home testing that used to be done in doctors’ offices is another growing problem for disabled Americans, said Bryan Bashin, CEO of the LightHouse for the Blind and Visually Impaired in San Francisco.
Take colon cancer screening, he said. Many doctors now recommend patients do a fecal collection at home: Put a portion of one’s poop in a test tube, write the date on it, and send it to the lab.
“Let me tell you, I will never subject a friend of mine to help me with this,” said Bashin, who is blind. While he was eventually able to schedule a screening appointment with his doctor after talking to his insurance company, it delayed his care.
“Accessibility needs to be part of what we do as a government, as a society,” Bashin said. “The ADA says that you don’t just have accessibility when things are running normal.”
“That’s really the indignity,” she said, especially when she didn’t want to risk infecting anyone. Eventually, she talked a manager at Aetna into letting her forward her Amazon receipts.
“Imagine going through this for every single receipt I want to submit,” she said.
When asked about its response to Hackman’s situation, Aetna spokesperson Ethan Slavin said: “We’re committed to making all of our services accessible to our members and make appropriate accommodations for members with disabilities.” The company then reached back out to Hackman to process her forms.
Slavin also sent KHN a medical information release form for Hackman to fill out, which would have allowed the company to discuss her situation. But she would have had to print, write on and rescan it — the problem she called them about at the start.
KHN reporters Victoria Knight and Hannah Recht contributed to this article.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.