Disabled Americans report high levels of distress during pandemic

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A survey of 441 adults conducted between October and December of 2020 found that 61% of respondents who self-reported a disability had signs of a major depressive disorder. Photo by truthseeker08/Pixabay

Loneliness, isolation and fears about contracting COVID-19 have turned life upside down for people with disabilities, causing high levels of depression and anxiety, a new survey finds.

Even before the pandemic, individuals with disabilities were more likely to experience social isolation than their peers without disabilities.

But this survey of 441 adults conducted between October and December of 2020 found that 61% of respondents who self-reported a disability had signs of a major depressive disorder. About 50% had probable anxiety disorder.

That’s significantly higher than in previous studies in which people with disabilities had a 22% chance of being diagnosed with depression over a lifetime, the researchers said. In an average year, about 3% of adults in the United States have a generalized anxiety disorder and 7% have a major depressive disorder.

“Sadly, [this] did not surprise me — many of our research team have disabilities ourselves and we’re very connected to the disability community, so we knew the stories that people were going through already, but it was important to document,” said study co-author Kathleen Bogart, an associate professor of psychology at Oregon State University in Corvallis.

Bogart said the value of this research goes beyond documenting high levels of distress, however.

“We can look at what is associated with those high levels of stress, so that’s a way that we can find things to intervene upon,” Bogart said.

People who have disabilities often have other health issues that put them at higher risk from SARS-CoV-2, according to the study.

Early in the pandemic, stories about people with disabilities not being prioritized when medical care was being rationed may have added to the isolation, the study author suggested.

Some places had explicit policies to prevent people with disabilities from receiving priority for a ventilator or COVID-19 tests, Bogart noted. The healthcare system often underestimates the quality of life of a person who has a disability, she said.

When providers stopped “non-essential” care to prevent the spread of COVID-19 or to cope with limited resources, it meant individuals with disabilities could not access physical therapy or surgery, the study authors pointed out.

“Our findings did show that anxiety and depression was associated with having experienced disability-related stigma,” Bogart said, adding that healthcare rationing became less common later in the pandemic.

“Even so, there have been many examples many of us have experienced throughout the pandemic where hospitals and healthcare workers are so strapped dealing with COVID, that people are not able to go in for their regular healthcare,” Bogart said. “And for some people with disabilities, simply being able to go into physical therapy once every few weeks or to get an infusion, say that they may need once a month, to have those disrupted can severely impact their daily function, their pain and all of those things.”

The findings were recently published online in the journal Rehabilitation Psychology.

The study is worth noting, but is also small, said Rhoda Olkin, a professor in the clinical psychology doctoral program at Alliant International University in San Francisco. Olkin was not involved with the study but reviewed the findings.

Olkin said she would like to see more research on the issue. Past research has suggested rates of depression may vary depending on specific types of disability.

Several factors specific to the pandemic could contribute to mental health issues in people with disabilities. For those who already have impaired breathing, an illness that affects breathing, as COVID-19 often does, is particularly scary, she noted.

Fear of infection also made some individuals concerned about having aides visit their homes, which may have caused significant lifestyle changes.

“If people went home or they went to live with their parents or someone else in the family, that brings about … all kinds of issues. Especially now if they become your personal attendant,” Olkin said.

Individuals may have had to wait longer than usual for repairs of equipment that can affect their daily life, such as a broken wheelchair or vehicle lift.

“All of the systemic problems that existed were exacerbated during the pandemic,” Olkin said. “So, suppose you’re blind and you don’t drive. Do you feel safe getting on a bus? Do you feel safe getting on a train or an airplane? The paratransit systems are notoriously unreliable, and you might feel reluctant to be the only person on a bus in a paratransit situation with just a driver. All the systemic things from insurance to transit systems to rules about getting federal funding or food stamps or anything else, those all get exacerbated during a pandemic.”

These aren’t new problems, she said, they’re just “more paramount” during a pandemic.

It’s not known whether rates of anxiety and depression among people with disabilities have dropped since vaccines became widely available and some services reopened.

One positive, Bogart noted: Some of the social isolation and difficulty accessing medical care were eased through video conferencing. That includes telehealth appointments with healthcare providers and social events on Zoom. Several large disability organizations have been organizing virtual community events.

“There have been some really nice examples of the disability community coming together, especially virtually,” Bogart said. “We have all, I think, gotten a little bit better at using video conferencing, connecting online and things like that, and I think the disability community has been a good example of using that well.”

There’s more about mental health during the COVID-19 pandemic at the Kaiser Family Foundation.

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