Tanzina Vega: You're listening to The Takeaway. I'm Tanzina Vega. As states continue expanding their vaccine priority groups to people in specific age groups and professions, some people with disabilities are finding themselves excluded. In November, research published by the nonprofit group FAIR Health, indicated that people with intellectual and developmental disabilities were two to three times more likely to die after contracting COVID-19 than those without those disabilities.

While states including New York and Ohio have placed people with disabilities in their very top priority groups, others like California are lagging behind. California's current vaccination plan prioritizes residents based on age but not by disability or underlying medical conditions. Dr. Kara Ayers is an assistant professor at the University of Cincinnati and the director of the Center for Dignity in Healthcare for People with Disabilities. Kara, thanks for joining me.

Dr. Kara Ayers: Thank you for having me.

Tanzina: Also, with us as Andy Imparato, executive director of Disability Rights California. Andy, thank you for joining us.

Andy Imparato: Great to be here.

Tanzina Vega: Kara, what's the definition of disability? Who are we talking about?

Kara: Well, that has clearly been a hard question for the states to answer as well. I, as a researcher and also a proud disabled person myself, think of it very broadly, recognizing that impact. Disability includes people with chronic conditions, whether they're acquired or, like myself, born with the disability. The definition is quite broad, but states have approached it differently.

Our collaboration with the Center for Dignity and John Hopkins Disability Health Research Center, we tracked all 50 states to see how each state defined disability, and there are really no two states that are alike and that has caused some of the confusion, because even people with disabilities themselves have a hard time knowing how their state classifies or defines disability.

Tanzina: Andy, what are some of the most significant risks that people with disabilities are facing during the COVID pandemic?

Andy: One of the challenges that a lot of folks in California have had is they get services in their home from workers who are coming in, and sometimes the workers get exposed to COVID and bring the COVID with them into the home. It's not just, do you have an underlying health condition that might make you more likely to die from COVID, but do you have the nature of the services that you get as a person with a disability, does that make you at greater risk of getting COVID?

Both of those issues are playing out in California right now, which is why we're trying to get our governor to prioritize people who are high risk, who are under 65 and have disabilities.

Tanzina: What are some of the factors, Andy, as we mentioned at the top, that people with disabilities, intellectual and developmental disabilities, might even have higher death rates from COVID-19? How does that factor into the broader conversation?

Andy: A lot of folks with intellectual and developmental disabilities have other comorbidities besides their primary disability. They may be a higher weight. They may have diabetes. They may have pulmonary issues. It's not just the primary diagnosis, but it's looking at the person's whole situation. There are literally hundreds of thousands of people in California who've been afraid to go out of their homes or their apartments since March of last year because they're afraid they're going die if they get COVID. We're saying to the state, "Let's prioritize them for vaccine so that they can get their lives back, and so they don't have to live in fear of dying from COVID."

Tanzina: Kara, we are hearing different things, as you said, even states individually have different ways of categorizing disabilities and who was eligible for the vaccine as a result. Are there any states, Kara, that have done a better job than others at prioritizing people with disabilities in their vaccination plans?

Kara: There have been some states that stand out in both their classification of disability, broadly, and recognizing, as Andy mentioned, that there are so many different conditions that can intersect and we really have to consider the whole person. I find that to be more equitable than this list of diagnoses, because you're always going to leave someone off that list, and especially people with rare conditions who, those conditions don't have the numbers to necessarily stack up the research, but that doesn't mean that their risks of death are any less than the groups that have.

You definitely see bias creep in. A recent study also showed the high risk of people with schizophrenia, and we know this stigma faced by individuals with schizophrenia, and we don't see them listed in any plans. I am impressed by plans that also recognize the barriers to accessing the vaccine themselves. Plans like Oregon's, directly identify approaches like drive-up vaccine centers, which addresses the transportation barriers that many people with disabilities face.

The number one thing that stands out to me in the plans that I think are doing a good job, is that you can see that the disability community was a part of the decision making process. In the states that to our community, have obvious errors and huge omissions, I think there was less involvement of people with disabilities and their family, and that's clear.

Tanzina: Andy, we talked a little bit about the higher death rates, but what about poverty? What about low-income people with disabilities? In California, in particular, are they more at risk for not being vaccinated or having access to the vaccine?

Andy: No question. We talked about social determinants of health. If you have a disability, you're more likely to live in poverty, and if you live in poverty, you're more likely to have a disability, in part because you don't have great access to health care or nutrition. So yes, no question that when we talk about the high-risk people in California, we're talking about disproportionately low-income people and people of color who also have disabilities.

Tanzina: Kara, to that point, the disability rights community is asking for more research on how COVID-19 is affecting people with disabilities. What kind of data are you looking for? Is it race? Is it socioeconomics? What is it?

Kara: We're looking for all of those variables because it really is important to consider the whole person. COVID-19 has really magnified problems that we already knew existed, including in the data that we collect. Even collecting disability status is something that isn't happening at a healthcare level in many cases. We aren't able to answer the simple questions of how many people with this condition die with COVID. Then we're asked to answer that question in advocacy circles, where we're asking for that prioritization, because we're seeing it in our communities, and we need the data to back it up.

Caller: I am the mother of a 24-year-old daughter with a pronounced intellectual and developmental disability. We live in LA County, an extremely restricted county due to the rampant spread of COVID-19. I have not been able to get a COVID-19 vaccine for my daughter. We are African Americans. I don't know if she's going to be fortunate enough to get the vaccine in time enough to prevent her from getting infected and having a horrible outcome. Because we're in LA County, and she's not 65, she's been told she can't get it.

Tanzina: Andy, that was a caller from LA County, who really describes the situation exactly. Has a daughter that has a disability, and she cannot get the vaccine. What is happening in California with the vaccine rollout?

Andy: I want to go back to something Dr. Ayers said earlier, which is that when the state works with the disability community, they usually make better decisions. In the context of California, the state is doing that. They have a number of us from the disability community on their Vaccine Advisory Committee. The problem is that they're not listening to us.

We've been telling them for weeks that they need to prioritize high-risk people with disabilities who are under 65 or people who'll unnecessarily die. They're telling us, "Yes, that makes sense, but we want to come up with a great plan for how to reach them, and we got to do the over-65 population first, but you're next," but they won't tell us what next means. We're trying to get them to commit to a timeframe, and so far we've been unsuccessful.

Tanzina: What has Governor Newsom said, Andy, about this issue? What's his response been?

Andy: Governor Newsom was asked specifically about people with intellectual and developmental disabilities, like the family that called in, on Monday when he did a press conference in San Diego at a vaccine site. He said, "I'm very aware of this problem. I'm working on it with my Secretary of Health and Human Services, Dr. Mark Ghaly, and we will make an announcement about this later this week."

Again, we're really hoping that they're not just going to say, "You're next," but they're going to say, "Starting next week, we're going to vaccinate high-risk people under 65, and the folks who get services from our regional centers, which are people with intellectual and developmental disabilities, are going to be one of the groups that we prioritize quickly."

Tanzina: Kara, one of the things that has stood out to me, particularly as here in New York many people scramble to try to find, spending hours, days, weeks looking for vaccine appointments for their elderly friends and families. Some of them said they had to drive at least an hour, if not more, wait on lines for multiple hours. That seems almost impossible if you are someone who doesn't have your own transportation and who cannot stand in a line for multiple hours. What are some of the challenges for the disability community to actually get to vaccine distribution points?

Kara: Yes, you highlighted some of the many challenges and I think the uncertainty that we've heard across states too, about supplies and how much each side is going to get has also amplified this problem. We've heard stories of people who have somehow overcome all the barriers you mentioned in terms of setting up transportation, arranging a support person perhaps to go with them, and then they arrive to the appointment to be told that the supply has run out and it's canceled.

Something like that can make the difference between someone getting a vaccine and not. We really have to think more creatively and recognize barriers like transportation, but also how would someone with a disability schedule this if they weren't able to read on the website. The information is not presented in a very accessible way across many states. How would someone schedule--

Tanzina: Kara, that's for people who know how to use the internet. I was on multiple sites for my parents trying to navigate and I was confused. I can't imagine the additional layers of difficulty if someone does not have ease or ability to access these websites.

Kara: Exactly. Some of them are just blatant violations also of disability rights to access public materials that are necessary for our health. When you think about people who are blind, who access websites with screen readers. Some of these vaccine plans are hidden within the website or they've created highly visual graphics, which may be helpful for some people, but may make it completely inaccessible for other people to find out when they're even eligible for vaccine, much less the tedious process of scheduling that we're all struggling through right now.

Tanzina: Andy, why do you think the disability community has not gotten the appropriate attention that it should during many of these vaccine rollout plans, particularly in California? Why are they now catching up and at least considering, as you mentioned, Gavin Newsom saying he's aware of the issue and expects to make some sort of announcement. Why did it take this much noise for this community to be recognized?

Andy: I think there's two big problems in California and in other states. One is that the public health system, the people that are making a lot of these decisions are physicians, epidemiologists, folks who've been trained in public health, and they do not have deep knowledge of the disability community. They don't know where folks are.

They don't know the underlying conditions that are likely to lead to death from COVID. We've had weak leadership from the CDC on these issues. Part of it is the public health system has failed the disability community in part, because they don't know us as well as they should. The other part is politics. I just don't think we have enough political power to force our governor to prioritize us, so we're making a lot of noise to change that, but it does feel like we're not important enough, politically, to prioritize us to be able to save our lives.

Tanzina: Of course, Andy, there are people who are caregivers for people with disabilities who have been prioritized, but that's still a disconnect.

Andy: One of the challenges, so California is prioritizing caregivers, including family caregivers, which is great, but it doesn't solve the problem because caregivers can refuse the vaccine. Everybody in California who has been offered the vaccine has the opportunity to say no. If a caregiver is saying, no, the person with a disability is still at risk, plus the science is not clear that even if you've had the vaccine, you still might be able to transmit it to the person who you're taking care of. We want them to not just do the caregivers, but also do the folks who are receiving the care at the same time.

Tanzina: Andy Imparato is the executive director of Disability Rights California and Dr. Kara Ayers is the director of the Center for Dignity in Healthcare for People with Disabilities. Thanks so much to you both.

Kara: Thank you.

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