Blind people, say disability advocates, need more accessible at-home coronavirus testing
In the coming weeks, millions of Americans will receive home coronavirus tests by mail, thanks to a collaboration between President Joe Biden’s administration and the US Postal Service.
But while the distro may help people who struggle to acquire rapid tests, it’s not a solution for everyone. For some — those who are blind or partially sighted, elderly, have physical dexterity issues, or have cognitive impairments — the tests are difficult or impossible to use independently. Their options: not testing at home, risking exposing someone else to the virus to help administer the test, or going to a testing center, potentially exposing themselves further.
For many immunocompromised or vulnerable people, home testing can be a lifesaver. So, as the omicron variant continues to fuel high numbers of COVID-19 cases, groups across the country, including in Massachusetts, are advocating for businesses and the government to make testing accessible.
“We are knocking on every political and activism door that we, as a disability activism community, can access, to advocate for accessibility of COVID resources and policies,” Sassy Outwater-Wright said. , executive director of the Massachusetts Association for the Blind. and Visually Impaired, which was founded in 1903 as America’s first social service agency dedicated to the blind and visually impaired. Helen Keller served on its first advisory board.
Home-accessible testing should be a top priority during this phase of the pandemic, she said. “Not all of us have a family member who can help us, especially if we’re self-isolating with COVID.”
Chancey Fleet, who is blind, said when she had to take an at-home test earlier this winter she was lucky to have help from her husband, who is sighted.
The New York-based tech educator has been advocating for more accessible at-home testing since late 2021. By reaching out to more people in her community, she realized that inaccessible testing is a deep public health concern for people with disabilities, especially those who live alone and are still isolated.
“Their alternative would be to find a sighted person, and if they think they really might have COVID, that means bringing a sighted person near the COVID sample to interpret the test, which could harm another person. “, she said. “So it’s a real, very serious public health problem.”
For many people with disabilities, the pandemic has exposed existing disparities. A report from the National Disability Council found that people with disabilities are twice as likely as people without disabilities to live below the poverty line. According to statistics from the National Federation of the Blindpeople over 65 are almost three times more likely to have a visual impairment than people under 65. The pandemic has already had a disproportionate effect on older people and people living in poverty.
There are workarounds. Apps like Be My Eyes, which is free, and Aira virtually connect blind or visually impaired people to a sighted person to help them with life tasks, such as interpreting coronavirus test results. The National Federation of the Blind is now offer blind people free access to Aira to help with home testing. There are also some tests, like the kit from Cue Health Inc., that can send results to a smartphone using Bluetooth technology, which could then be read audibly with a screen reader.
These apps and tests, however, can be expensive or raise privacy issues with sharing medical information with third parties. A packet of three Cue Health tests costs $474. Another home coronavirus test, performed by Ellume, can be used with a free app that includes video and audio instructions, and can send the results to an email address. Its selling price is about $38 for a single test.
“Using these assumes you’re fully proficient in using a smartphone to address accessibility issues,” Fleet said, noting that older people and those newly blind may not be proficient with access technologies. ‘assistance.
Technological workarounds also do not address the challenges of people who have physical dexterity issues or who follow written instructions. Completing each precise step may involve swabbing your nose in a circle repeatedly or inserting an exact amount of droplets into a small meter, all while making sure nothing gets contaminated.
“The test demands more of us than the general population,” Fleet said. “Think not only of people who are blind, but also people with limited fine motor skills, that would be great.”
Fleet said people who live alone or think they have COVID-19 are “put in an impossible position of having to go out and find a test in the community, increasing everyone’s risk of exposure, perhaps in a very long queue”. She added that websites for finding these coronavirus tests aren’t always accessible or easy to use.
The USPS federal site is accessible. from boston COVID-19 Resource Site is primarily accessible to people who use assistive technology, except for a few sections – like drop-down menus and a few linked PDFs – that can be difficult to navigate with a screen reader.
Demand for home testing kits for people with disabilities is high, according to Bill Henning, executive director of the Boston Center for Independent Living. He acknowledges that while not perfect, home testing is an important option for people who want or need to avoid public testing sites.
“These are difficult scenarios. If you don’t have the stamina to be outside, if it’s cold, you know, do you want to cut the line, so to speak, to get that accommodation? It’s intimidating for a lot of people,” he said.
Millie Hernandez, who uses a wheelchair and suffers from lupus, an autoimmune disease, said that for many people who are housebound or dependent on 24-hour medical care, going to a testing site can be difficult.
“Disabled people don’t have that luxury,” Hernandez said. As an advocate who works with the Boston Center for Independent Living, she said mailed test kits are “a lifesaver.”
The center received about 450 kits from the Boston Public Health Commission in late December and distributed them all within about ten days. The agency said it plans to send another round of kits to the elderly and people with disabilities soon.
Henning shared some of the feedback the Boston Center for Independent Living received when people requested home testing. “I am severely immunocompromised and [my doctor] doesn’t want me to take any chances,” one person wrote. Another wrote that her son has five home nurses she would like to test regularly. Another said that in order to take a test he would have to rely on The Ride, the MBTA’s service for people with disabilities, and that he feared exposure.
Accessing existing tools that are meant to be widely available, Henning said, continues to be a challenge.
“The need is understood,” Henning said. “But there is this whole huge segment of older people or people with disabilities and health conditions who still really need [to be] get kits, get PPE, things like that.
“The test demands more from us than from the general population. Thinking not only of people who are blind, but also people with limited fine motor skills would be great.
Chris Danielson, spokesman for the National Federation of the Blind, said so far advocacy groups have not found any fully accessible test kits. They continue to lobby the local and federal government for more options.
“We don’t know of any American company that is innovating in this area,” he said.
Danielson hopes that in the future, tests might show results through changes in touch, temperature, smell or sound.
“There are already thermometers that can detect the temperature and speak it out loud, and they’re not very expensive, so why can’t a device detect the test result and do the same?” He asked.
Danielson mentioned a company in the UK that developed a home pregnancy test that allows users to feel the results rather than relying on visual cues.
John Koval, director of public affairs at Abbott, which makes the BinaxNOW test, did not provide details, but said the company will look at how “testing and technology can work together to enable” more home testing. accessible in the future.
Fleet said the companies have a unique opportunity to be a pioneer not just in coronavirus testing, but in all home medical testing.
“Any company that wants to step in now could be the first and could be the barometer that proves what is possible. And whoever that company is, it could be positioned very favorably,” she said.