Pandemic medical innovations are leaving people with disabilities behind

Divya Goel, a 35-year-old deaf-blind woman from Orlando, Florida, had two telemedicine appointments during the pandemic. Each time she was denied an interpreter.

Doctors told her that she would have to get insurance to pay for an interpreter, which is not true: according to federal law, the doctor is responsible for the interpreter.

Instead, Goel’s mother stepped in to translate. But her signatures are limited, so Goel, who has only some vision, isn’t sure her mother fully conveyed what the doctors said. Goel worries about the medical consequences – the wrong medicine or treatment – if something gets lost in the transfer.

“It is very, very difficult to get real information, and therefore I feel very stuck in my situation,” she signed through a translator.

Telemedicine, remote work, rapid tests, virtual school and vaccine delivery have become part of the daily routine for Americans as they enter their 3rd year of life under COVID-19. But as innovators have sought to make life safer in a pandemic world, some people with disabilities have been left behind.

For people with physical disabilities, COVID home tests that allow them to re-enter the community can be difficult to complete. Visually impaired people may not be able to read the fine print in instructions while blind people can’t see the results. The American Council of the Blind is suing two leading medical testing companies, Labcorp and Quest Diagnostics, over touch-screen registration kiosks at their testing locations.

Sometimes the obstacles are related to elementary logistics. “If you’re blind or visually impaired and live alone, you don’t have a car,” said Sheila Young, president of the Florida Council for the Blind, pointing to the long lines of cars being tested and vaccinated. “Who can let Uber or Lyft sit in line for three hours?”

One of 4 adults have a disability according to the US Centers for Disease Control and Prevention. While barriers to disability have been in place for a long time, the pandemic is bringing betting on life or death to this age-old inequality.

“The only thing I see is that people with disabilities are the last to be cared for and they die first,” he said. Matthew Dietzone of the founders and current Litigation Director of the Disability Advocacy Group in Florida.

People directly affected by accessibility barriers, especially those living in communal settings or at home, often do not have the time, money or energy to file legal complaints.

Federal, state, and local governments also violate disability laws. BUT KHN investigation Last year, it turned out that the websites of the state registration of vaccines are inaccessible to the blind. Inspired by this story, the Department of Justice reached an agreement with five New York City local and state agencies to correct such issues. Since then, the Department of Justice has reached an agreement with Rite of Help, Hi-Vee, krogeras well as Meyer provide accessible registration for vaccination appointments.

After Outrage by Disability Rights Defenders CDC updated my list those at increased risk of severe COVID include people with disabilities. And in mid-February, the NIH Diagnostic Technology Rapid Acceleration Program. announced efforts to create affordable COVID home tests, and the Department of Health and Human Services called on manufacturers to evaluate the performance of COVID home tests for people with disabilities.

But so many visits to the doctor went online to ensure patient safety during COVID outbreaks, the inaccessibility of telemedicine has become rather a problemsaid Howard A. Rosenblum, CEO National Association of the Deaf. The Americans with Disabilities Act and other disability laws are violated when healthcare providers don’t provide telemedicine technology with captioning or the ability for interpreters to participate in the same teleconference, he said.

When Liz Hamlin she needed to see her nurse practitioner in the midst of the 2020 pandemic, she was initially elated that she made an appointment with telehealth to avoid the risk of contracting COVID. Until she realized that the virtual visit would not be accompanied by subtitles.

As a person with hearing loss, Hamlin reads lips and uses subtitles to better understand hangouts. A resident of Germantown, Maryland, barely managed to follow during the meeting. As Director of Public Policy Hearing Loss Association of America, she protested. But she didn’t dare to do anything about it.

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

A small number of health care providers, such as UAB Medicine in Birmingham, Alabama, and MedStar Health in Washington, DC, offer interpretation services. Zoom also has subtitle option. But more than 35% of physicians have no idea what their legal obligations to disabled patients are under the ADA, according to the ADA. Health Issues article published in January.

“There are no ADA police,” Hamlin said. “The burden is on the consumer.”

Goel’s doctors broke the law, but they are not punished and punished for this. And she doesn’t know who she’ll be talking to about the lawsuit.

While Goel’s technological advances, such as free interpretation services who interviewed her gave her more independence and connection with others, the pandemic has robbed her of most of it,” she said. This limited her ability to use Uber for commuting due to increased costs and the risk of the pandemic, and isolated her at home with her parents.

“Instead of growing up in independence, I just feel like I went backwards,” she said.

The accelerating transition to home testing, which used to be done in doctors’ offices, is another growing challenge for Americans with disabilities, said Brian Bashin, CEO of San Francisco’s LightHouse for the Blind and Visually Impaired.

Get screened for colon cancer, he said. Now many doctors recommend that patients collect feces at home: put part of the feces in a test tube, write the date on it and send it to the laboratory.

“Let me tell you that I will never force my friend to help me with this,” said the blind Bashin. Although he was eventually able to make an appointment with his doctor after speaking with his insurance company, this delayed his treatment.

“Accessibility should be part of what we do as a government, as a society,” Bashin said. “ADA says you don’t only have access when everything is working fine.”

Michelle Hackman, blind reporter for the Wall Street Journal from Washington, D.C. Tried to get reimbursed for rapid COVID tests through her Aetna Health flexible spending account. But Etna insisted that she print and mail or fax the receipts, even after she called and explained how difficult it would be for her. He then asked her for someone to help her – Hackman was too used to hearing that.

“It’s really humiliating,” she said, especially when she didn’t want to risk infecting anyone. Eventually, she persuaded Aetna’s manager to allow her to forward checks to Amazon.

“Imagine you go through this for every receipt I want to send,” she said.

Asked about the reaction to the Hackman situation, Aetna spokesman Ethan Slavin said: “We are committed to making all of our services accessible to our members and to create an appropriate environment for members with disabilities.” The company then contacted Hackman again to process her forms.

Slavin also sent a medical information release form to KHN for Hackman to fill out, which would allow the company to discuss her situation. But she would have to type, write, and rescan, a problem she called them about in the beginning.

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

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