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Lena I. Jackson
Lena I. Jackson
For more than 60 million Americans with disabilities, the rapid spread of COVID-19 is especially dangerous. Many live in long-term care facilities, and they are twice as likely to experience poverty as those without disability. But so far, legislation has fallen short on help. We hear some of their stories, and Stephanie Sy talks to Rebecca Cokley of the Center for American Progress.
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.
I myself have a visual impairment.
I'm a wheelchair user.
I am also an advocate with Down Syndrome.
I have a genetic physical disability called Larsen syndrome.
I work in a day program. I'm the lead in the classroom.
We have been staying home for the past two weeks due to the COVID-19 shutdown.
I have one neurological disorder. And it confines me to a wheelchair. So, over time, I get a little bit weaker.
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.
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.
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.
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.
Soon-Wai loves to be able to go to work and get a paycheck, right?
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.
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.
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.
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.
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?
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.
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.
Thank you so much for having me.
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?
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.
And so, even as people lose those at home services, they get thrust into a situation that could be more dangerous?
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.
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.
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.
For people that don't know, Rebecca, what is health care rationing? And what does that say to somebody with a disability?
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.
That's got to be pretty painful for a person with a disability to have to confront.
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.
Rebecca Cokley with the Center for American Progress.
Thank you so much for your insights, Rebecca.
Watch the Full Episode
Stephanie Sy is a PBS NewsHour correspondent and serves as anchor of PBS NewsHour West. Throughout her career, she served in anchor and correspondent capacities for ABC News, Al Jazeera America, CBSN, CNN International, and PBS NewsHour Weekend. Prior to joining NewsHour, she was with Yahoo News where she anchored coverage of the 2018 Midterm Elections and reported from Donald Trump’s victory party on Election Day 2016.
Casey is a producer for NewsHour's digital video team.
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