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Alice Wong, Sami Leskin and Jeiri Flores
Courtesy of Alice Wong, Photograph by Eddie Hernandez Photography; Courtesy of Lori Leskin; Courtesy of Jeiri Flores;
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By Abigail Abrams
Jeiri Flores is normally a busy, upbeat 29-year-old. But amid the
COVID-19 pandemic, her go-to thought has been dark. “If I get this,” she
thinks, “I’m gonna die.”
This is not an unfounded fear. Flores has cerebral
palsy, uses a wheelchair and needs assistance with everyday tasks,
including making food and getting dressed. Her disability means it’s
tougher for her immune system to kick illnesses; she’s still recovering
from a bout of pneumonia she had in January. So beating COVID-19 could
easily mean a protracted battle and months in a hospital—a prospect that
comes with a cascading series of challenges unique to people with
disabilities. At a time when all Americans are facing unforeseen
obstacles and concerned about their futures, Flores and more than 60
million Americans with disabilities like her are facing perhaps the
toughest road of all.
With hospitals restricting visitors amid the
pandemic, Flores and others who rely on family and aides for assistance
and advocacy would no longer be guaranteed that resource. If access to
life-saving care became limited, Flores would be up against potentially
discriminatory state health plans to
ration care.
And if she made it out of the hospital, Flores’s fight would rage on:
she’d need to ensure she could continue getting support in her home
without exposing the health aides she needs to the virus.
All of this is why Flores’ top goal right now is to avoid getting
COVID-19 in the first place, which means staying at her home in
Rochester, New York. But even following stay-at-home orders is
complicated for people with disabilities. Medicaid allows Flores to hire
a home health aide to help with daily tasks and a “respite worker” to
take her grocery shopping or see her friends. But in recent weeks, an
effort to avoid infection has curtailed the outings with her respite
worker, especially since the worker’s partner still works at Target and
could expose them all. Shortages of personal protective equipment
combined with existing workforce issues and uncertainty over future
Medicaid funding are making it increasingly difficult for Flores and
those like her to stay at home.
“This has completely changed my access to the community,” Flores says.
Roughly one in four adults in the U.S. has a disability, and an
estimated 60% of Americans have at least one chronic health condition
that could make the symptoms of COVID-19 more severe or deadly. Even in
normal times, people with disabilities and chronic illnesses confront
biases in medical care, face waiting lists to get support in their own
homes instead of at nursing homes, and struggle to access government
benefits. But amid a global pandemic, those challenges are
heightened—and so far, lawmakers have mostly ignored their calls for
help.
“You’re really increasing the risks to disabled people’s health when
they don’t have access to these basic services,” says Rebecca Cokley,
who leads the Disability Justice Initiative at the Center for American
Progress. “This is really life or death for our community.”
The Dangers of Nursing Homes
Congress passed another $484 billion relief bill on
April 23 that focused mostly on funding for small businesses, hospitals
and coronavirus testing. As the next relief package begins to take shape
in Washington, advocates for disabled people are pushing lawmakers to,
among other things, increase Medicaid funding for at-home care—a crucial
mechanism to help people with disabilities avoid
nursing homes or other
group settings that have been breeding grounds for COVID-19.
“What the pandemic is putting a very fine point on
right now is the fact that nursing homes and other congregate settings
can be a public health hazard to people with disabilities,” says Nicole
Jorwic, senior director of public policy at The Arc, an organization
that supports people with intellectual and developmental disabilities.
“What we need to do is provide more access to home and community-based
services, so that they are not only integrated in their homes and
communities as they should be, but also so that they are safe.”
Julia Ramos has seen the consequences of the virus devastating the
Long Island nursing home where her grandmother lives with dementia. On
March 25, when New York state began requiring nursing homes to accept
patients discharged from hospitals, even if they had tested positive for
COVID-19, Ramos was aghast
. “It’s horrible,” Ramos says. “That’s just creating an explosion.”
By April 22, the 460-bed nursing home had seen 23
patients die from COVID-19 and 54 more had tested positive, including 17
people who came from local hospitals already infected. Stuart Almer,
the president and CEO of Gurwin, was critical of the state’s policy
requiring his facility to accept patients who had tested positive for
the virus. “A different plan could have been developed to safeguard
people who are positive and not introduce them where people are sick,”
he says.
When a new patient gets infected, they—and their
exposed roommate—may be quarantined in their current room, meaning the
virus is not contained to just one area of the facility, and staff may
need to care for both infected and non-infected patients. Ramos says her
family feels helpless and her grandfather has been crying because he
doesn’t know when he’ll see his wife again. “He is so worried that she
is going to forget him and forget who he is,” Ramos says.
Julia Ramos' grandmother, Angelica Mendez, with her husband Pedro Mendez, on their 64th wedding anniversary. Courtesy of Julia Ramos
Staying Safe, and Isolated, at Home
For people with disabilities, “stay at home” orders only work if they can access the support they need at home.
Michele Kaplan, 44, who has brain cysts and spine issues that often
prevent her from moving her limbs, usually gets assistance through a
Medicaid program that pays for home care workers. But these workers
don’t get paid sick leave, health insurance or any PPE, and so her usual
personal care aides, concerned for their own health, had to stop coming
once the pandemic hit Manhattan. Kaplan wanted to hire new aides,
especially since so many people are out of work, but her program
requires health assessments and vaccinations that would be nearly
impossible to get with non-essential health care shut down due to
COVID-19, she says.
Bryan O’Malley, executive director of the Community
Directed Personal Assistance Association, says he supports the
requirements under normal circumstances, but is lobbying state officials
to temporarily loosen these regulations during the pandemic. “The
policies are actually serving to take away the community resources that
exist at the exact time we need them most,” O’Malley says. As the
coronavirus leaves more people with potentially lasting health and
economic consequences, he adds, the need for assistance is likely to
rise.
For now, Kaplan has been switched to a traditional
home care model, which means she rotates through a series of temporary
assistants who don’t have experience caring for her. It’s not an ideal
situation, but Kaplan worries that if officials determine the aides
cannot meet her needs, they could recommend she move to a nursing home,
an outcome Kaplan has experienced before and says is “terrifying.”
For people with intellectual and developmental
disabilities, COVID-19 can be disorienting no matter where they are.
Lori Leskin pulled her 24-year-old daughter Sami, who has a seizure
disorder and does not use words to speak, out of her day program in
March as the coronavirus outbreak expanded. Sami is a “very social
being,” Leskin says, so the pandemic has been hard for her without her
usual routine. But Leskin knows this is safer than any group setting
right now and is hoping her daughter’s program will survive the
shutdown. “We spent years building this life,” she says, “and here we
are praying that we could put it back together whenever we get out of
this.”
Kate Haaland has been in her Waterford, Connecticut
home with her son Chris Horwath since March 13, when she also pulled him
out of the day program he usually attends. Chris, 25, is deaf, legally
blind and has significant intellectual and developmental disabilities
that prevent him from understanding something like a global pandemic. To
Chris, Haaland says, the past six weeks have meant no friends from his
program and none of his normal activities like swimming or going to
restaurants in town. “Most days we are in crisis most of the time,” she
says.
While staying home is hard for her son, Haaland says she wants to
avoid going to the hospital at all costs, especially because
Connecticut’s current no-visitors guidance for hospitals does not have
an explicit exception for people with disabilities who live at home.
(Those who live in group homes are allowed to bring a caregiver.) “That
would just be horrific for both of us,” Haaland says. When Chris has
gone to the hospital in the past, Haaland is the one who communicates
with doctors because he cannot speak or follow their instructions. Some
doctors have questioned whether it is worth operating on Chris in the
past, she says, so she has had to advocate for him.
Concern Over Medical Biases
Haaland’s experience with Chris’s doctors is not a
unique one. Most medical schools do not teach future doctors about
disability, says Dr. Lisa Iezzoni, a physician and researcher at Harvard
Medical School. And most clinical trials exclude people with
disabilities, so many doctors only interact with disabled people when
they are already sick and seeking care.
Iezzoni, who has multiple sclerosis and uses a
wheelchair, recently conducted a national survey of doctors’ attitudes
toward people with disabilities. “The vast majority of doctors view
quality of life for people with disabilities as less than that for
people without disability,” she says. “That’s an implicit bias, or maybe
it’s an explicit bias, that is inevitably going to affect how they
approach a person with a disability.” Iezzoni’s own research and
other studies
have shown that disabled people face disparities in their rates of
diagnosis, across various health outcomes and in overall access to care.
Dawn Gibson, who has ankylosing spondylitis and
severe food allergies, says she is often dismissed as a black woman with
chronic illness. After launching an online community in 2013 for
disabled and chronically ill people to share their experiences, she
became a patient advocate, speaking at conferences and pushing for more
research into the impact of diseases on African Americans. “There is a
systemic resistance to the pain of black people,” she says.
Even with this background, she is scared of going to a
hospital in Detroit during the COVID-19 pandemic because she expects to
be treated poorly. Several years ago, Gibson had broken out in hives
due to a food allergy, and gone to the emergency room. But the staff,
she says, assumed she had been taking drugs, so she had to fight to get
seen before she passed out. “I don’t trust going in any of these
facilities, but I can’t let that end my life,” she says.
Alice Wong, 46, sees these biases too. She has a progressive
neuromuscular disease that means she uses a ventilator, attached to her
wheelchair, all the time. When hospitals started talking about rationing
ventilators during the COVID-19 crisis for the most “deserving”
patients, Wong was angry but not surprised. At least 25 states have
policies that could mean people with disabilities are less likely to get
critical care if hospitals are overloaded, according to a report from
the
Center for Public Integrity.
Six states’ triage plans allow doctors to take away ventilators from
those, like Wong, who use them in everyday life to help other patients.
Disability rights advocates have filed formal complaints in four states
and Alabama revised its policy after the Department of Health and Human
Services Office for Civil Rights conducted a review.
“Just because I need assistance with my life, that
doesn’t mean that I can’t live successfully,” Wong says. She is the
founder of the
Disability Visibility Project
and edited a book about people’s disability experiences that is coming
out later this year. “There’s this idea that to have a full life, to
have a quality life, it must be without suffering or pain. If you have a
disability, that’s not compatible with ideas of a good life,” she says.
“There’s a real missing experience and expertise in terms of just how
resilient we are and how much we can offer the world.”
Helping Each Other Through the COVID-19 Pandemic
As the COVID-19 pandemic has swept across the
country, disability rights organizations, activists and nonprofits have
used their networks to care for their own communities.
The Disability Justice Culture Club in Oakland,
California has launched a mutual aid network and is hosting workshops on
self-advocacy, while Disabled American Veterans is helping people apply
for benefits online, holding virtual job fairs, and has set up a
disaster relief program to provide disabled veterans with small grants
of about $250 to help cover immediate expenses like rent and groceries.
So far, it has provided $1.3 million and hopes to raise more, says Dan
Clare, DAV’s chief communications and outreach officer.
“The people that actually need the help are the
people that have the hardest time asking for it,” says Jay Salazar, who
is helping organize Disability Justice Culture Club’s mutual aid
network.
People with disabilities organized on social media
long before COVID-19 forced everyone to do so, but the pandemic has
underscored those efforts. Many activists are using hashtags such as
#HighRiskCovid, #WhatWeNeed and #WeAreEssential to highlight the
disability community’s concerns, catching the attention of some
lawmakers. Democratic Senators Bob Casey, Sherrod Brown and Elizabeth
Warren all encouraged Twitter users to share their experiences to help
the lawmakers push for increased funding earlier this month.
But nothing is guaranteed in the next stimulus bill, and in the
meantime, the pandemic is affecting disabled people more and more each
day.
“My fear is what the long term effects will be,” says
Flores, the advocate from Rochester. “If I get corona, I’m gonna die
because I’m disabled and someone along the lines has decided that my
life is of less value. I’m not 30 yet. There’s still so much more that I
have to do.”
Correction, April 27
The original version of this story misstated the
amount of money distributed by Disabled American Veterans during the
coronavirus pandemic. It is $1.3 million, not $13 million.
Full Article & Source:
'This Is Really Life or Death.' For People With Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care
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