JUDY WOODRUFF: For more than 60 million Americans with disabilities, the rapid spread of COVID-19
is particularly dangerous.
Many live in long-term care facilities, which are at greater risk for coronavirus deaths.
These Americans also are two times as likely to live in poverty as someone without a disability.
But, so far, legislation has fallen short for helping them.
Stephanie Sy has a closer look at all of this.
And we begin by hearing some voices of those affected by this.
SHARADA VEERUBHOTLA, Teacher, Lavelle School for the Blind: I myself have a visual impairment.
DAVID FRIEDMAN, Special Education Teacher: I'm a wheelchair user.
MARTHA HAYTHORN, Disability Rights Advocate: I am also an advocate with down syndrome.
EMILY LADAU, Writer and Disability Rights Advocate: I have a genetic physical disability
called Larsen syndrome.
NOEL LOZADA, Direct Support Professional: I work in a day program. I'm the lead in the
classroom.
SIEW WONG, Father: We have been staying home for the past two weeks due to the COVID-19
shutdown.
ASHLEY FRANCIS, Center for Independence of the Disabled New York: I have one neurological
disorder. And it confines me to a wheelchair. So, over time, I get a little bit weaker.
LISA PUGH, Mother and Disability Rights Advocate: I have a 20-year-old daughter with intellectual
and developmental disabilities, and this has been really hard on her and on all of us,
as her routine has just been flipped upside-down.
NICOLE JORWIC, Senior Director of Public Policy, The Arc: I have a brother with autism. As
a family member, my brother going into the hospital right now is our greatest fear.
That is because we don't know the access that he would have to the services. We don't know
how he would be communicated with or how he would be understood.
MARTHA HAYTHORN: My biggest concern or fear during this is health care, big time, and
medical rationing, because, believe it or not, many people with disabilities are not
getting services right now.
DAVID FRIEDMAN: My husband is my primary caregiver. If he were to get sick or called back to work
before I have to go back to work, the insurance will not allow me to get a home health aide
that they will cover, because of the fact I work full-time.
SIEW WONG: Soon-Wai loves to be able to go to work and get a paycheck, right?
SOON-WAI WONG, Minnesota: Yes.
SIEW WONG: It is also a place where he can develop his artistic talents. It also gives
him structure, so that he does not have to spend the whole day staying at home. That
is also very important for me, as that would give me a break from having to keep him busy
the whole day.
SHARADA VEERUBHOTLA: As a blind person, when you step out, it's inevitable that you need
assistance.
We have the social distancing. We are talking about not touching each other, which is understandable.
And, on the other hand you need help. You need somebody sometimes to hold your hand.
LISA PUGH: We're starting to see some challenging types of behaviors. We have a few new holes
in our walls. And she sometimes just has uncontrollable sobbing during the day, which is heartbreaking
for a parent.
ASHLEY FRANCIS: My aides are not coming on a regular basis, as they would before, because
they are either scared of getting me sick or scared of getting their family sick.
I feel like I have taken a while to build my independence. I feel like I'm kind of going
backwards.
NOEL LOZADA: There is a spectrum with essential workers. And the spectrum is, we are at the
bottom of the barrel. Like, the doctors and the nurses and the fire department and the
police department are so high up.
And, yes, they put their lives at risk, but so do we. We have people who make $12 an hour.
And we don't have the proper PPE. People will stop you in the street, and they will say,
God bless you. You have a place in heaven.
What about my place here?
EMILY LADAU: This is not a pandemic-only problem. This is a systemic problem that occurs constantly.
And we need to find a way to overcome these inequities in order to move forward and ensure
that it's a more accessible world for everyone.
STEPHANIE SY: As you just heard, there are a cascade of challenges facing people with
disabilities in this pandemic and facing the people that care for them.
Joining me now for a broader discussion on all these issues is Rebecca Cokley. She is
the director of the Disability Justice Initiative at the Center for American Progress.
Rebecca, thank you so much for your time.
REBECCA COKLEY, Disability Justice Initiative Director, Center for American Progress: Thank
you so much for having me.
STEPHANIE SY: We just heard a number of people talk about their loss of services. Can you
talk specifically about what services have gone away and how critical they are for people
with disabilities?
REBECCA COKLEY: We're hearing stories from all over the country of people who've lost
access to home and community-based services, to the people that come into their homes on
a daily basis, help them bathe, help them eat, help them learn, help them actively engage
in society.
And because of the pandemic, whether it be their caregivers actually contracting the
illness or working for organizations that are closing right now due to the illness,
we're hearing stories from people who just can't engage in society anymore.
They are worried about the loss of services actually forcing them to be institutionalized
or put in a nursing home against their will. And nobody wants to be in a nursing home right
now.
STEPHANIE SY: And so, even as people lose those at home services, they get thrust into
a situation that could be more dangerous?
REBECCA COKLEY: Definitely.
Having the inability to prepare food for yourself, having the inability to roll yourself over
at night in bed to prevent bedsores, which is one of the most critical issues facing
a lot of people with disabilities in this country.
Being unable to roll over in bed might be an inconvenience for a non-disabled person,
but it's not going to kill you. For our folks, that sort of lack of access to services does
mean serious injury and potentially death.
STEPHANIE SY: What happens when a person with a disability actually becomes sick with COVID-19?
The Center for Public Integrity recently released a report that said at least 25 states have
enacted policies that could mean that people with disabilities could fall to the back of
the line if there is an overwhelming need, for example, for ventilators or other health
care supports.
REBECCA COKLEY: This is not something new for us.
Any time there's any sort of health care rationing, it's the sad truth of history that we know
that typically we're put to the end of the line. People do not value our lives. People
don't look at disabled men and women and people as anything beyond sometimes being needy.
STEPHANIE SY: For people that don't know, Rebecca, what is health care rationing? And
what does that say to somebody with a disability?
REBECCA COKLEY: When it comes to who gets priority of care, the hospital can actually,
in some cases have language that -- that lowers the priority for people with preexisting conditions
or other types of disabilities, and so can decide that the 24-year-old with Down syndrome's
is life is worth a lower level of quality of care, a lower access to care than, you
know, a 72-year-old or a 54-year-old.
STEPHANIE SY: That's got to be pretty painful for a person with a disability to have to
confront.
REBECCA COKLEY: Definitely.
And that level of medicalized ableism is something that people with disabilities encounter on
a daily basis anyways. That's the reality we live with as disabled people in this society.
But that doesn't mean it's OK, and we shouldn't be OK with it.
STEPHANIE SY: Rebecca Cokley with the Center for American Progress.
Thank you so much for your insights, Rebecca.
REBECCA COKLEY: Thank you.