People with Disabilities Left Behind by Telemedicine and Other Pandemic Medical Innovations

Her doctors told her she would have to buy insurance to pay for an interpreter, which is incorrect: under federal law, the onus is on the doctor to provide one.

Goel’s mother stepped in to interpret instead. But her signature is limited, so Goel, who only has some vision, isn’t sure her mother has fully conveyed what the doctors said. Goel worries about the medical ramifications – bad medicine or treatment – if something gets 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, telecommuting, rapid testing, virtual school and drive-through vaccines have become part of Americans’ routines as they enter the third year of life amid Covid-19. But as innovators raced to make life in a pandemic world safer, some people with disabilities were left behind.

People with physical disabilities may find home Covid tests that enable reintegration into society difficult to achieve. People with limited vision may not be able to read the fine print of instructions, while blind people cannot see results. The American Council of the Blind is engaged in litigation against the two major medical testing companies, Labcorp and Quest Diagnostics, over touchscreen check-in kiosks at their testing sites.

Sometimes the obstacles are basic logistics. “If you’re blind or visually impaired and you live alone, you don’t have a car,” said Sheila Young, president of the Florida Council of the Blind, pointing to long lines of cars at drive-through testing and vaccination locations. . “Who can afford an Uber or a Lyft to stand in line for three hours?

One in 4 adults in the United States have some kind of disability, according to the Centers for Disease Control and Prevention. Although barriers for people with disabilities have existed for a long time, the pandemic brings life or death stakes to these longstanding inequalities.
“The only thing I see is that people with disabilities are cured last and die first,” said Matthew Dietzfounding member and current director of litigation of the Disability Independence Group in Florida.

People directly affected by accessibility barriers, especially those living in communal or housebound settings, often don’t have the time, money, or energy to file legal complaints.

Federal, state and local governments also violate disability laws. A KHN Survey last year found that government vaccine registration websites were inaccessible to blind people. Stimulated by this story, the Department of Justice reached an agreement with five New York state and local government agencies to correct these issues. The DOJ has since entered into agreements with Ritual Aid, Hy Vee, Kroger and Meijer ensure accessible registration for vaccination appointments.
Following an outcry from disability advocates, the CDC updated his list people at increased risk of severe Covid to include people with disabilities. And in mid-February, the National Institutes of Health’s Rapid Acceleration of Diagnostics Tech program announced an effort to create home-accessible Covid tests, while the Department of Health and Human Services called on manufacturers to assess the operability of home Covid tests for people with disabilities.
But like many doctor’s appointments have migrated online to keep patients safe amid Covid surges, the inaccessibility of telemedicine has become no longer a problemsaid Howard A. Rosenblum, CEO of National Association of the Deaf. The Americans with Disabilities Act and other disability laws are violated, he said, when health care providers do not provide telemedicine technology with captioning or the ability for interpreters to speak. be in the same conference call.
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When Lise Hamlin needed to see her nurse practitioner in the depths of the 2020 pandemic, she was initially excited to set up a telemedicine appointment to avoid the risk of exposure to Covid. Until she realized the virtual tour wouldn’t have captioning.
As a hard of hearing person, Hamlin reads lips and uses captions to help understand video meetings. The Germantown, Maryland resident could barely keep up during the date. As Director of Public Policy for the Hearing Loss Association of America, she was furious. But she was reluctant to do much with it.

“You’re in the middle of a pandemic, how badly do you want to alienate your doctor?” she asked.

A small number of healthcare providers, such as UAB Medicine in Birmingham, Alabama, and MedStar Health in the Washington, DC area, offer interpreting services. Zoom also has a captioning option. But more than 35% of physicians have no idea of ​​their legal responsibilities to patients with disabilities under the ADA, according to a Health Affairs article published in January.

“There is no ADA font,” Hamlin said. “The whole burden is on the consumer.”

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Goel’s doctors broke the law, but they are not being punished or penalized for it. And she doesn’t know who she would tell about a trial.

Although technological advances during Goel’s lifetime, such as the free interpretation service used to conduct this interview with her — gave her more independence and connection with others, the pandemic stripped a lot of that, she said. This limited her ability to use Uber to get around due to rising costs and the risk of a pandemic, and isolated her at home with her parents.

“Instead of gaining independence, I feel like I’ve stepped back,” she said.

Another growing issue for Americans with disabilities is the accelerated shift to home testing that used to be done in doctors’ offices, said Bryan Bashin, CEO of the LightHouse for the Blind and Visually Impaired in San Francisco.

Take the colon cancer screening, he says. Many doctors now recommend that patients do a faeces collection at home: put some of their poop in a test tube, write the date on it, and send it to the lab.

“Let me tell you, I would never submit any of my friends to help me with this,” Bashin, who is blind, said. Although he was eventually able to schedule a screening appointment with his doctor after talking to his insurance company, it delayed his care.

“Accessibility has to be part of what we do as a government, as a society,” Bashin said. “The ADA says you don’t just have accessibility when things are working normally.”

Michelle Hackman, a blind reporter for the Wall Street Journal in Washington, DC, tried to get reimbursed for his rapid Covid tests through its Aetna Health Care Flexible Spending Account. But Aetna insisted she print and mail or fax the receipts, even after calling and explaining how difficult it would be for her. He then asked him for someone to help him – something Hackman is all too used to hearing.

“It’s really the indignity,” she said, especially when she didn’t want to risk infecting anyone. Eventually, she convinced an Aetna official to let her forward her Amazon receipts.

“Imagine going through that for every receipt I want to submit,” she said.

Asked about his response to Hackman’s situation, Aetna spokesman Ethan Slavin said, “We are committed to making all of our services accessible to our members and to making appropriate accommodations for members with disabilities.” The company then contacted Hackman to process its forms.

Slavin also sent KHN a medical information disclosure form for Hackman to complete, which would have allowed the company to discuss his situation. But she should have printed it, written it down, and rescanned it – the problem she had called them about in the beginning.

KHN reporters Victoria Knight and Hannah Recht contributed to this article.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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