S1E14: Disability Shouldn’t Be A Liability / Maggie Hassan & Rebecca Cokley

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“Resources that we’ve been using as reasonable accommodations are now being taken up by the rest of society due to shelter in place policies, and obviously this is something that’s really important to do.” -Rebecca Cokley

In today’s episode, co-hosts Ron Klain and Dr. Celine Gounder speak with Senator Maggie Hassan of New Hampshire. Senator Hassan discusses her work in the Senate as the senior Democrat on the Senate Subcommittee on Oversight and Emergency Management of the Homeland Security Committee. Senator Hassan also discusses the impact the pandemic has had on her personally, as she tries to keep her family, including her son who has severe cerebral palsy, healthy and safe. This episode also features an interview with Rebecca Cokley, a disability rights activist and Director of the Disability Justice Initiative at the Center for American Progress. Rebecca discusses the challenges this pandemic has presented to persons with disabilities.

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Celine Gounder: I’m Dr Celine Gounder

Ron Klain: And I’m Ron Klain

Celine Gounder: And this is “Epidemic.”

Today is Friday, April 24th.

Ron Klain: As America approaches its 50,000th death due to COVID, we’re going to talk about one group that’s been particularly hard hit by the coronavirus, people living with disabilities. Many services that they rely on, home health workers, pharmacies, even things like grocery delivery have been stretched to the breaking point by COVID-19.

Today, we’re going to hear about how Americans with disabilities are finding creative solutions to this problem and how they are fighting for their rights, during this pandemic.

Celine Gounder: We’re going to speak with us. Senator Maggie Hassan from New Hampshire. Senator Hassan has direct experience caring for a loved one with a disability.

We’ll hear how that perspective shapes the policies she’s fighting for in the Senate through legislation like the CARES Act.

Ron Klain: We’re also going to hear from Rebecca Cokley. She’s a disability rights activist with the Center for American Progress. She’s going to give us her take on how the coronavirus and the government’s response to this are impacting the disability community.

Okay. Let’s start with our interview with Senator Maggie Hassan.

Celine Gounder: So today we’re pleased to welcome to the podcast Senator Maggie Hassan from New Hampshire. After serving as governor of New Hampshire for four years, Senator Hassan was elected to the US Senate in 2016. Senator Hassan is married and has two adult children. Senator Hassan, would you mind just sharing a little bit about your son Ben.

Senator Maggie Hassan: Well. Sure. Thanks for having me on. One of the reasons I am in public service to begin with is because of the experience of raising our son Ben.

Ben is now a 31-year-old young man who is very funny and very smart, but happens to have very severe cerebral palsy. So, Ben doesn’t walk and, uh, he can’t speak or use his fingers to operate a keyboard. He has a lot of complex medical needs that come with the level of cerebral palsy he has. And so, uh, he is, um, the center of our household and he is a very funny and high energy young man. But, uh, right now in particular, we are being extra, extra careful in our household to try to make sure that all of us who interact with Ben are just being as careful as possible.

Celine Gounder:  Why were you especially concerned that you may have been exposed yourself?

Senator Maggie Hassan: Well, so I was on the Hill, but you know, through January, February, and a lot of March, and it became very clear, uh, both from the rate of cases that were being diagnosed and detected in DC. And also the fact that at least one of my colleagues in the Senate tested positive, that I was likely exposed to the virus. And since this virus can be contagious, even when the carrier of it doesn’t have symptoms, the only way we could really try to assure that I wouldn’t bring the virus unknowingly into our household was for me to spend 14 days, uh, monitoring my temperature and the like, uh, so that I would be clear of any infection, uh, that might be asymptomatic, uh, before I came home.

Ron Klain: Well, Senator, thanks for sharing that. It’s really important for our listeners to understand that even a US Senator has to face this and its impact on her family.  But I do also because we have, you want to talk about some of the public policy issues that you’ve been working on and that we face here and let’s start first with the economic side of it. For our listeners, on the podcast, let’s start with one thing, they’re all asking us, which is, when do you think they’re going to start to see those recovery checks, those stimulus checks? What are people really going to see him show up to help them pay the bills?

Senator Maggie Hassan: Well, look, we know that. The measures that we are taking, the staying at home, the social distancing, the closing of businesses are critically important. They’re public health measures that will save lives, and as we’re beginning to see from reports around the country, they’re beginning to flatten that curve. But those measures come with real economic costs for people.

Celine Gounder: Well, right? How are you supposed to pay your rent? Buy food? When you’re not able to work? And not getting a paycheck?

Senator Maggie Hassan: It’s critical that individuals and families get direct cash assistance to help them afford things like rent and food and those cash payments that can be made by direct deposit into people’s bank accounts started to arrive as we’re taping this podcast on April 15th.

Celine Gounder: What about people who don’t file tax returns?

Senator Maggie Hassan:  As we were thinking through the rollout here, I was concerned about people who don’t file tax returns because they get social security, retirement benefits, or disability benefits.

And so what we made sure to do in the cares act was be specific that people with social security, retirement, and disability could get their payments directly. And then there was some ambiguity about people like veterans who are getting veterans benefits or supplemental security income recipients. And we have a bipartisan push going right now to make it possible for those people to get direct payments without having to file anything either.

Ron Klain: Senator, can we talk about that for a second? Because I think there are millions of Americans who are disabled, who are veterans, who are on this group, you just talked about, who can’t get these benefits that they deserve. Talk a little more what you’re doing to try to change that and what it’s going to take to change that.

Senator Maggie Hassan:  So one of the things that my colleagues who had been legislating back during the Great Recession on the stimulus plan, people may remember that, one of the things we discovered was people on social security, uh, were the least likely to get the payments that they were promised because they hadn’t filed tax returns, they don’t have to file tax returns.

And so, um, we wanted to make sure this time around that Treasury didn’t use a mechanism, um, that depended on people having filed tax returns. So we specifically put into the law a requirement that social security retirees and people getting social security disability would get the payments directly just as tax filers who have direct deposit information, get them directly under the law too.  We continue to push for veterans and, um, supplemental security income recipients, because they are essentially in the same boat.

Celine Gounder: Is this a form of special treatment? For people on social security? people on disability? and veterans?

Senator Maggie Hassan:  Um, people need to understand that they are also often live in right on the margins financially. When you add the pressures of the pandemic on people’s finances of the limitations it puts on people, who have a disabilities, for whom it may be even harder now to get help with things like computer access or advice about how to file a tax return.

We are continuing to push Treasury to get these payments directly to people who shouldn’t have to go through extra hoops and challenges to get money that they are owed when the government already has all the information it needs to get them their payment.

Ron Klain: Again, thank you, Senator for your leadership on that. There are just so many families who are grateful that you’re fighting this fight. Well, I want to flip over now and then ask you one question about the, uh, public health and emergency management aspect of the response, to date. You are the senior democrat in the Senate serving on the Subcommittee on Oversight and Emergency Management of the Homeland Security Committee in the Senate. What’s your overall assessment of how the response to the pandemic has gone? What needs to be done better?

Senator Maggie Hassan:  My overall response is that we lost valuable time as this pandemic first began to appear in the United States. We are pushing the administration, to fully exercise something called the Defense Production Act, that gives the president of the United States the power to say because of a national emergency, uh, he is going to direct various sectors of our economy. In this case, let’s say manufacturers. To turn all of their efforts to the production of personal protective equipment, ventilators, and other necessary medical equipment that are people at the front lines need.

But I am concerned that without fully exercising the Defense Production Act and forcing more production of critical personal protective equipment, we will continue to have shortages. The states and localities are competing against each other, that drives the prices up and that can’t be  in, isn’t the best way for us to get lifesaving equipment to the front lines.

Celine Gounder: What about diagnostic testing? We keep hearing that we don’t have enough tests. Could the Defense Production Act help with that, too?

Senator Maggie Hassan:  The second piece of this, the Defense Production Act, is use that same power to push the production of diagnostic testing. The key to opening back up our economy will be: one, the flattening of the curve so that we can know that our healthcare system won’t be completely overrun by people with the illness, but two is to have the diagnostic testing and the personal protective gear on hand, so that as we reopen things, if we see a resurgence of the virus in a particular spot, we can diagnose people, find out who has it, and then have the kind of public health infrastructure we need to do what’s called contact tracing so they can go back and find everybody who’s interacting with somebody who is COVID positive and get them to self- isolate.

Celine Gounder: Senator Hassan, I just want to bring this back to your family, to your son, Ben. Social distancing really is a big challenge for people who have disabilities. They can’t entirely isolate themselves. They really do depend on personal care, attendance, and home health aides to help them. How are the needs of people with disabilities being met? Who’s taking care of them, and for that matter, how are the needs of these home health aides and personal care attendants being addressed.

Senator Maggie Hassan: Home health care givers are some of the most creative, dedicated people I know. By and large, many of them are also underpaid at a significant level. And so, um, during this time, one of my biggest concerns is that home health aides aren’t necessarily getting the kind of protective gear they need to prevent their passing the virus on to one of the people they’re taking care of. We are trying to make sure that they, and everybody on the frontlines, gets a level of what we’re calling a pandemic pay, a recognition that they’re putting themselves at more risk to make sure that the people they care for are protected. The other thing of that we worked on was making sure that in certain circumstances, direct care professionals who work with somebody with disabilities they can be, reimbursed for being at the bedside of somebody with disabilities when they are in the hospital. Most hospitals are not set up with the kind of nursing ratio that allows them to give somebody with complex disabilities, um, the ongoing 24/7 healthcare that they may need. And so if a direct care professional can be with the person in the hospital, it can make a real difference.

Celine Gounder: And to that point, I think one of the things the pandemic has revealed is who are essential workers, not just healthcare workers, but who are essential to our daily life, to our economy, and they tend to be people who are very underpaid and undervalued currently. Do you see that changing and how?

Senator Maggie Hassan: Well, I certainly think that all Americans are developing a new appreciation for these frontline workers. And I hope that Americans are not only seeing the value of this work for what it is, but are really thinking through how important this work is and what it would mean for these folks to get a decent enough wage so that they weren’t feeling that they were always living on the financial margins. A lot of people in these positions work more than one job, are very stressed because of the nature of their work, but also because, uh, they really aren’t paid, uh, in a way that recognizes the value of that work. And maybe that’s something that we can all dedicate ourselves to as we go through this unprecedented time in our country.

Ron Klain: Well, Senator, I think that’s a very excellent note to end on. Thank you for your leadership. Thank you for joining us. We really appreciate your time today.

Senator Maggie Hassan: Thank you so much for having me on take care everybody, be well.

Ron Klain: Our next guest is Rebecca Cokley. She’s a disability rights activist and she’s the director of the Disability Justice Initiative at the Center for American Progress. Full disclosure here, I serve on the board of directors of an affiliated group with the center called the American Progress Action Fund. So Rebecca, thanks very much for joining us today on “Epidemic.”

Rebecca Cokley:  Thank you so much for having me Ron.

Celine Gounder: Rebecca, welcome. You know, I’m a doctor. I care for vulnerable populations. But even I was really surprised to read that almost one in five people in the US have a disability and one in three US households have someone with a disability.

How is it that so many people with disabilities seem to remain invisible to the rest of us?

Rebecca Cokley: Well, I think it’s important to think about like the statutory definition of disability. When the George H.W. Bush administration crafted the Americans with Disabilities Act, they were really intentional and not including a bulleted list.

They understood having watched their loved ones come back from Vietnam, having watched the rise of the AIDS epidemic. That disability is a fluid thing. It continually evolves. And so most people often just think about sort of the basic disabilities, the physical disabilities, people that use wheelchairs or crutches. And they don’t necessarily think about things like traditional women’s illnesses that you know, historically have been marked up to hysteria, or we were told we’re in our head, things like migraines. And so thinking about disability from the broadest definition, because it really is any physical or mental impairment that impacts activities of daily living.

As a little person. When people see me, they assume that my dwarfism is the disability that impacts me the most, as opposed to the fact that I get ocular migraines at least three or four times a month. My dwarfism doesn’t keep me home from work, but an ocular migraine will keep me locked up in my basement with an ice pack on my head for two or three day sometimes.

Ron Klain: So Rebecca, we’re focused on how people with disabilities are coping with and forced to cope. Additionally, with this coronavirus, what are the things you’re most hearing from the disability rights community about how this coronavirus is affecting members of the community and their concerns.

Rebecca Cokley: One of the things that’s really concerning to us is for a long time, things and resources that we’ve been using as reasonable accommodations are now being taken up by the rest of society due to shelter in place, policies, and obviously this is something that’s really important to do, whether it be ordering groceries from home, mail order pharmacies, and those sorts of things, and people are now seeing it being much harder to be able to let’s say like hop on Instacart and order your weekly groceries. We’re also seeing thanks to, in large part to, um, the inaccurate rhetoric coming out of the White House, uh, where the president has been talking  about potential remedies for the coronavirus and throwing up various pharmaceuticals names that people with lupus and rheumatoid arthritis are all of a sudden being told that they can’t get refills on their medications. So we’re seeing it impact almost all facets of the lives of people with disabilities.  You know, I think the other thing that’s a very significant concern for us is watching a number of these state plans around care come out in times of pandemic, and a number of them really laying out policies that are frankly about rationing care.

Thankfully, the Department of Health and Human Services came out with guidance saying that the ADA still applies and that people with disabilities who do contract the coronavirus deserve equal access to care and treatment as people without disabilities. But this obviously is very concerning.

Celine Gounder: To that point, Rebecca, Alabama’s plan, for instance, says that quote, “persons with severe mental retardation, advanced dementia, or severe traumatic brain injury, may be poor candidates for ventilator support,” are these fair criteria on which to be rationing scarce resources like a ventilator?

Rebecca Cokley: These really aren’t fair criteria. The other thing that we’re starting to see real fear about, for example, you, you highlighted the Alabama plan and the New York plan if an individual who uses a ventilator as part of their daily life, and we know many that do in our community brings their ventilator with them to the hospital, um, if they feel like they’ve contracted the coronavirus, their personal property, their personal ventilator, can be confiscated by the hospital and given away to somebody that the hospital perceives as in greater need, who doesn’t have a disability. And so these things are extremely concerning to us. It shows the power of our community that we have seen state protection and advocacy organizations, civil rights attorneys like Sam Bagenstos and Alison Barkoff and others pushing back on a number of these state plans.

Ron Klain: Many disabled people need caretakers. They need help. How are people managing those needs with this stay at home environment that we’re in right now

Rebecca Cokley: One of the things that’s really concerning to us in the conversation, particularly around personal protective equipment, is that home and community based care workers are not included as essential staff in that conversation.

And we’re also seeing a real issue around a number of companies that employ home and community based care givers are closing down, or we also know these folks are more likely to get the coronavirus because of the type of work that they do. One of the big gaps in the third coronavirus package that came out of the Senate was the fact that, um, families who employ a caregiver to care for a loved one over the age of 18, are not eligible for paid family medical leave to be able to now provide care for their loved one. And so that’s actually one of the recommendations that we’re pushing forward. And the fourth coronavirus package, we really feel like package four needs to have a significant emphasis on the health care workforce.

Celine Gounder:  Who are these frontline caregivers?

Rebecca Cokley: They’re predominantly women, predominantly women of color, and predominantly immigrants. One of the statistics that I saw yesterday that blew my mind was the fact that we were seeing these clusters of outbreaks in nursing home facilities, and so we know that these are places that really are truly hot spots.

Uh, if staff don’t have that type of equipment, it also highlights to us, again, from the disability community perspective, how important. It is for people with disabilities and seniors to be able to get the services that they need in their home and in their community versus being in a segregated setting.

Celine Gounder: Yeah, and to that point, I think a lot of people with disabilities fear being forced into a nursing home, especially if there’s a shortage of ready and willing caregivers to assist them in the home. What’s the harm in housing people with disabilities in nursing homes at least until the current crisis is over?

Rebecca Cokley: People with disabilities have the fundamental civil right to live in their community. We know that people actually have better health outcomes, both physical and mental health outcomes when they’re able to live in the communities with their families. We still live in very much a patriarchal country that has a notion that disabled people need to be cared for.

No disabled people need supports and services so that they can care for themselves. And if you went up to the average person on the street and said, Hey, we’re going to put you into a nursing home to keep you safe. I’m sure you would hear calls to the ACLU. I’m sure you would hear people threaten lawsuits and say why don’t I get to live in my home with my people? Anytime we sequester a marginalized community into a facility, historically it doesn’t end well.

Ron Klain: So Rebecca, let’s now move from questions about nursing homes to the opposite end of the age spectrum. How are children and young people with disabilities getting the services they need at this time of crisis?

Rebecca Cokley: The Individuals with Disabilities Education Act requires all schools to provide a free and appropriate public education for students with disabilities in the least restrictive environment. One of the things that was really concerning to me was that the Senate asked for a blanket IDEA waiver, so they wanted to waive all responsibility of schools to serve the needs of students with disabilities through this pandemic.

We were glad to see that removed However, we know that secretary DeVos has, I believe it’s 30 days after Senator Alexander requests from her a report laying out what areas of education policy should the Senate request language around waivers on. And we have no doubt that IDEA is going to be included in that. Flexibility is needed, but waivers are not the solution.

Celine Gounder: Well, let me ask you, Rebecca, are there any anecdotes you can share as an advocate? I’m sure you’re hearing about the stories of many others in the community as to, you know how this is playing out for a particular family in the midst of this pandemic.

Rebecca Cokley: It continues to blow my mind how innovative the disability community is because we often have to rely on ourselves. I’ve seen things where people have volunteered to go to the pharmacy for other people. I think that’s one of the things that blows my mind is because Medicaid may not have an order by mail pharmacy in each state, the ability to get prescription drugs by mail is not guaranteed for people with disabilities. So even if you want a shelter in place, you may end up having to go out to go to your pharmacy and stand in line, possibly with people that are sick. I think about friends of mine who like volunteer to even cross state lines to run to the pharmacy for somebody else, which has been a big deal.

I have watched my friends who are deaf, hop on Skype and zoom to talk to deaf kids, raised by hearing parents via ASL in the middle of the day. Um, so that they, so that the kids don’t lose their sign language aptitude. And so I think if there’s anything I can say about my community, it’s a quote by Susan Daniels, who was a longtime advocate in our space, who said, “I will always have hope, but I also have the burden of history.”

I’m very hopeful about the innovation abilities of my people. I’m just really worried about the types of things that non-disabled people might be doing to disabled people right now. Unthinkingly.

Ron Klain: Well Rebecca, thank you again for joining us and sharing these important issues, but most of all, thank you for your advocacy.

Your work on this is so important to making this a more just and humane society. So thank you very much for that.

Rebecca Cokley: Thank you so much, Ron. I really appreciate

Ron Klain: We didn’t have a chance to take listener questions in this episode, but we love doing it whenever possible. If you have a question that you’d like us to answer, please send it to us via a voice memo. Record your voice memo on your phone, keep it under a minute and email it to us.

Hello@justhumanproductions.org. That’s hello@justhumanproductions.org

Celine Gounder: “Epidemic” is brought to you by Just Human Productions. Today’s episode was produced by Zach Dyer and me. Our music is by the Blue Dot Sessions. Our interns are Sonya Bharadwa, Isabel Ricke, Claire Halverson, and Annabel Chen. Annabel is a first-year medical student at Stanford.

If you enjoy the show, please tell a friend about it today, and if you haven’t already done so, leave us a review on Apple podcasts.  It helps more people find out about the show. You can learn more about this podcast, how to engage with us on social media, and how to support the podcast at epidemic.fm. That’s epidemic.fm.  Just Human Productions is a 501(c)(3) nonprofit organization, so your donations to support our podcasts are tax deductible.  Go to epidemic.fm to make a donation. We release epidemic twice a week on Tuesdays and Fridays. But producing a podcast costs money. We’ve got to pay Zach, so please make a donation to help us keep this going.

Check out our sister podcast, American Diagnosis. You can find it wherever you listen to podcasts, or at AmericanDiagnosis.fm.  On American Diagnosis, we cover some of the biggest health challenges affecting the nation today. In season one, we covered youth and mental health and season two, the opioid overdose crisis, and in season three, gun violence in America.

I’m Dr Celine Gounder.

Ron Klain:  And I’m Ron Klain.

Celine Gounder: Thanks for listening to “Epidemic.”

Maggie Hassan Maggie Hassan
Rebecca Cokley Rebecca Cokley
Dr. Celine Gounder Dr. Celine Gounder
Ron Klain Ron Klain