Disability rights advocate and wheelchair user Ryan Honick relies on public transit or rideshare options to get to appointments and go grocery shopping in Washington, D.C. Since he started social distancing, he can no longer use those options so Honick turned to the delivery service Instacart to obtain supplies.
“It’s usually a couple hours from when you place your order,” Honick said of his previous Instacart deliveries. But the service wasn’t nearly as quick when he placed an order on March 12. “The wait time was a week,” he said.
For most people, this extended wait time would be merely an inconvenience, but for those with disabilities — especially those whose support systems have been decimated by the coronavirus — it can mean the difference between sustenance and starving.
As COVID-19 continues to spread worldwide at an alarming rate, politicians are scrambling to put together contingency plans. One noticeable absence is any sort of acknowledgment of the disabled community.
Around 1 in 4 Americans have a disability, according to the Centers for Disease Control and Prevention. They are a diverse group of people with diverse needs. Not all are at greater risk of contracting COVID-19, but specific conditions may leave many of them more vulnerable. In addition, among those who have a greater need for assistance in their everyday lives, social distancing and self-isolation is even harder, maybe impossible.
There has been a lack of information about what people with disabilities and those who care for them should be doing, compounded by a failure to communicate important public health messages in an accessible way.
“People with disabilities need equal access to critical COVID-19 updates and official communications, which means sign language interpreters, captioning, and plain language,” Neil Romano, chairman of the National Council on Disability, told Yahoo. “And federal law requires it.”
June Isaacson Kailes, associate director at the Harris Family Center for Disability and Health Policy at Western University of Health Sciences, wants to make sure the government doesn’t forget the everyday needs of disabled individuals like her and Honick.
These needs, she said, range from specialized aid such as in-home nurses and caretakers who may help individuals bathe, prepare food or complete other personal care tasks, to widely used consumer services such as grocery and meal delivery and transport apps such as Uber and Lyft.
“During these uncharted times, these are the kinds of services that one counts on — on a daily basis — that kind of do get forgotten,” said Kailes. Legislators need to realize the importance of these services to people with disabilities, she said, “so the right kinds of policies are put in place so people can continue to get what they need to — like everyone else.”
“We just heard over the weekend, for example, that a dozen people in New York are stuck in the hospital even after they have been deemed ready to go home because they lack either the support needed to transition back home or they have nowhere to self-quarantine,” said Shannon McCracken, vice president for government relations at ANCOR, a national nonprofit that represents community providers of services to people with disabilities.
The 12 individuals, all of whom have developmental disabilities and live in a residential home, were hospitalized for suspected COVID-19 (nine have tested positive). They are now stabilized and ready to return home, but they are still considered contagious and the staff at their home do not have the necessary protective equipment to safely bring them back.
That people with disabilities are unable to access what they need during this crisis reveals a “systemic failure,” said Andrew Meyers, project director of the Research and Training Center on Disability in Rural Communities at the University of Montana.
Many in the disability community have been deeply disappointed with the government response. “ANCOR is working to lobby hard for additional resources, supplies and flexibility from government at both the state and federal levels,” McCracken said.
Many states issuing stay-home or shelter-in-place orders aren’t including direct support professionals as “essential workers,” despite how essential they truly are. Shannon McCracken, vice president for government relations at ANCOR
One of ANCOR’s goals is to ensure that in states that have shut down large swaths of the workforce, all of those who work with disabled clients are still able to do their jobs.
“Many states issuing stay-home or shelter-in-place orders aren’t including direct support professionals as ‘essential workers,’ despite how essential they truly are,” McCracken said.
While some health aides and personal care attendants are typically considered essential, direct support professionals — those who work with people with intellectual and developmental disabilities to help them stay as independent as possible by, for example, helping them to eat, dress and wash themselves — are not.
ANCOR has written a letter to the National Governors Association urging its members to include direct support professionals as “essential health care service workers” in the orders they’re issuing to curb the spread of the coronavirus.
The organization is also requesting that the U.S. Department of Labor include disability service providers’ staff and direct support professionals in its definition of essential health care service workers.
This workforce “was in crisis long before COVID-19,” McCracken said. There was already a lot of turnover and absenteeism among direct support professionals so “many providers simply don’t have the backbench needed” when school closures are keeping some workers off the job and the virus is claiming others.
If their paid caregivers are sick or otherwise can’t come in, people with disabilities are left with few options. The Families First Coronavirus Response Act, signed into law last week, doesn’t allow people to use sick days to care for family members with disabilities who need help now.
Marcie Roth, executive director of the World Institute on Disability, has a straightforward solution to this: Give people with disabilities money to pay whomever they choose to provide them with care.
Since health insurance plans won’t cover payments to anyone who isn’t an accredited in-home service provider, Roth wants the federal government to offer funding to pay non-accredited individuals, such as friends or family members, for home care services.
“Give individuals the flexibility to hire people and pay them to do the things that they need to get done in order to maintain their health,” she said.
Even school closures present greater challenges to the health and well-being of the disabled community. Shutting down schools is an inconvenience for everyone, but for many of those with disabilities, it’s the disappearance of a lifeline.
Jason Wentworth, of Westport, Massachusetts, fears that his 4-year-old son, who has autism spectrum disorder, will backslide without the hands-on speech and occupational therapy he receives at his twice-weekly pre-kindergarten class.
“He’s already behind on developmental milestones,” Wentworth said. With the state’s schools shut, he worries his child will lose some of the progress he’s made.
“I totally understand the primacy of public health and keeping with the CDC social distancing guidelines,” said Wentworth. “We’re absolutely supportive. It doesn’t make the situation suck any less.”
People with disabilities being treated as secondary to the rest of the population is something that Felicia Nurmsen, managing director of employer services at the National Organization on Disability, was rallying against long before the COVID-19 pandemic. But the crisis has amplified this problem, with many individuals downplaying the virus as only a risk for certain vulnerable populations.
“The national narrative around ‘only’ — ‘it’s only affecting these populations,’” Nurmsen said with disdain, is dangerous because it paints the already neglected disabled community as disposable. “We need to discontinue that national narrative because our lives matter. And people with disabilities need to be involved in all aspects of this [conversation].”
Ruthie-Marie Beckwith, executive director of TASH: Disability Advocacy Organization, fears that overlooking the disability community will lead to dire situations.
We’re very worried that people with disabilities are going to be excluded from treatment. Ruthie-Marie Beckwith, executive director of TASH: Disability Advocacy Organization
“We’re concerned about the protocols that hospitals have as it relates to triage — who gets treatment and doesn’t get treatment,” Beckwith explained. “We’re very worried that people with disabilities are going to be excluded from treatment.”
Hospitals in some of the hardest-hit states, including Washington and New York, are already assessing how they will decide which patients will receive treatment in the likely event of a ventilator shortage.
Bioethicist Charles Camosy recently wrote in the New York Post that the “hard truth” is that when there are limited resources, they need to go to those most likely to benefit from them, based on what is known about this particular disease and who is more or less likely to survive.
But, he argued, “it should not be up to physicians to decide whose subjective quality of life deserves to be prolonged,” warning of the inherent biases that arise when others judge the quality of a disabled person’s life. “Wisely, our state [New York] insists that … disabilities unrelated to what is causing the epidemic shouldn’t serve as the basis for rationing.”
Making these decisions based on disabilities would violate federal law, disability rights experts point out. But just because decisions shouldn’t be made that way doesn’t mean they won’t be. Experts say “there is no general and universal agreement on how patients and injured people should be triaged.” That leaves room for “the pestilence of ableism and ageism” to come into play, wrote Rabbi Elliot Kukla in an op-ed for The New York Times.
“In Italy, they’re already deciding not to save the lives of chronically ill and disabled people, or elders with COVID-19,” wrote Kukla, who has a chronic illness. “The rationale is twofold: We are less likely to survive, and caring for us may take more resources. This is not an unusual triage decision to make in wartime or pandemics; our lives are considered, quite literally, more disposable.”
Advocates also worry that people with disabilities will have a harder time coming back from the financial ramifications of the economic slowdown that the pandemic has wrought.
Because the cost of living is higher for those with disabilities who need direct support professionals, while that same population is largely under or unemployed, those living with disabilities often struggle to provide for themselves financially (let alone have the extra time to advocate for better policy and legislation). In the four years following the 2008 financial crisis, a University of Montana study found that employment for people without disabilities rose 1.7% while employment for people with disabilities went up only 0.8%.
“People with disabilities are often the first to feel impacts from giant shocks like this,” Meyers said of the coronavirus pandemic. “They’re often the first to feel it but also the last to recover.”
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