A new report from a UK disability rights group along with US research paint a grim picture of what life is like for people living with disabilities amid the COVID-19 global pandemic. The pandemic, according to the group Inclusion London, has “shone a light on the long-standing structural inequalities and discrimination that Deaf and Disabled people experience.” Shockingly, the report stated that individuals who said they were limited by an impairment in 2011 were twice as likely to die from COVID-19. In the US, research has shown that people with intellectual disabilities or autism are contracting COVID-19 at twice the rate and are at least twice as likely to die from COVID-19 as the rest of the population. In New York, they are 2.5 times more likely to die.
The high rate of death “is disturbing, but it’s not surprising,” Scott Landes, an associate professor of sociology at Syracuse University’s Maxwell School of Citizenship and Public Affairs told National Public Radio (NPR). “They’re more likely — four times more likely, we’re showing — to actually contract COVID-19 than the general population,” he explained. “And then if they do contract COVID-19, what we’re seeing is they’re about two times more likely to die from it.”
Extremely High Death Rate
Landes’ study, published in Science Direct, found that people with intellectual disabilities are at greater risk for contracting COVID-19, “especially at younger ages.” Those aged 17 and under have a death rate of 1.6% compared to less than 0.01% for the rest of the population aged 17 and under. Individuals with developmental disabilities aged 18-74 had a death rate of 4.5% compared to a death rate of 2.7% for the rest of the population in that age group, and for those age 75 and over, the numbers evened out with a death rate of 21.2% for those with intellectual disabilities compared to 20.7% for those without.
Landes told NPR that there are two main contributing factors to the higher death rates: 1) people with developmental disabilities are more likely to have a preexisting health condition known to increase the risk of death from COVID-19 such as respiratory disease, and 2) individuals with disabilities are more likely to live in a setting with roommates and staff.
Up to 20% of people with disabilities live in a group setting compared with just six percent of people over age 65. The staff who work in these homes are less likely to have access to personal protective equipment.
READ: Senator Ben Sasse introduces bill to stop health care discrimination against those with disabilities
Pressured to sign DNRs
A survey of individuals with disabilities in the UK found that many have been pressured to sign Do Not Resuscitate (DNR) paperwork amid the pandemic. There are also reports that people with disabilities are being told they won’t be admitted to a hospital if they do become ill with COVID-19 and would be denied life-saving emergency treatments.
“I can’t access the government scheme for support because apparently I’m not disabled enough,” said one respondent. “However I’m disabled enough to get suggested to sign a DNR, and inferred I’d be left to die if hospitalized.”
The National Institute for Health and Care Excellence also told doctors that they should assess their patients who have learning disabilities, autism, and other disabilities for frailty in order to deny some of them care and treatment based on how frail they are. They were threatened with legal action for doing so, but the emotional damage was already done.
“And, the thing that caused me more distress was when the government decided they were going to publish the frailty guidance,” said another respondent. “I looked to see how frail I am and am I going to be offered a ventilator if I need one. The reality according to that guidance was no, not necessarily, And, then thinking how can I prove my worth to people to make sure I get that treatment if needed.”
Left to die
Individuals with disabilities in the UK survey reported feeling “scared” and even “terrified” to contact doctors or go to the hospital if they feel sick. They worry about proving their value or the value of their disabled child to a doctor or team of doctors who believes it would be better to let them die from COVID because of a disability.
In the United States during the pandemic, people with certain preexisting conditions including Down syndrome and cystic fibrosis have been disallowed from receiving care such as ventilators.
In Texas in June, 46-year-old Michael Hickson died after doctors refused to treat him for COVID-19 because he had a disability. He was refused food and treatment for six days before he died.
“I’m struggling to understand how and why this could ever happen,” said his wife Melissa. “I was stripped of my rights as a wife, and left helplessly watching my husband be executed. I now have no husband, a widow at 47. My children left with no father to celebrate Father’s Day. All taken away from us. I have no words to express how I feel today except hurt, angry, and frustrated.”
Lack of access to health care
Additionally, people with disabilities are reporting increased difficulty accessing medications and health care for the conditions they already live with because of COVID-19. According to the report, over 60% of people with disabilities “struggled to access food, medicine and necessities.”
“I have no idea how I’m meant to get medication at this time and I’m very worried because friends of mine on the same medication have found that their pharmacies have run out of it,” said one survey respondent. Going to the pharmacy is a particular challenge for many people who have disabilities and now have a lack of personal assistance since social support care has been cut back amid the pandemic. In addition, they have no access to personal protective equipment to help them feel safer going to a pharmacy or store.
People have also faced difficulty keeping up with treatments as medical facilities have closed down and appointments have been canceled.
Alone and afraid
Overall, the experiences of psychological distress, social isolation, lack of access to health care, and other daily discrimination faced by individuals with disabilities have been “exposed and amplified” by the pandemic said Inclusion London. “The failures, moreover, have reinforced the widespread perception that the voices of Disabled people are being ignored and have led many of us to conclude that we have been forgotten and abandoned.”
The results of this survey correspond with the results of research by the UK organization Scope, which found that 28% of people with disabilities feel forgotten during the pandemic.
Todd Goodwin, who runs John F. Murphy Homes, a provider agency in Maine, told NPR, “Nobody sees them. Nobody notices them. We see that repeatedly through policy, we see that in financing at the state and federal level. It’s been an issue for years.”
Inclusion London said that the failure of the government to properly ensure the safety and wellbeing of its disabled citizens is “epitomised by the Coronavirus Act, which has downgraded and curtailed Disabled people’s rights and branded us as ‘vulnerable’.” Scope believes there “needs to be a cultural shift in how the term ‘vulnerable’ is used by policy makers and service providers.”
“Despite the government’s rhetoric about protecting and supporting Disabled people,” said Inclusion London, “the reality is that during the pandemic we have been treated less fairly and discriminated against across all areas of our lives.”
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