People with disabilities aren’t prioritized for COVID vaccines. California activists are trying to change that

Written by Amy Ta, produced by Bennett Purser

Governor Gavin Newsom decided last month to prioritize age in the state’s coronavirus vaccination plan. People over 65 can get the vaccine now. After all, they’re more likely to die of COVID-19 than any other group. 

But people with serious disabilities — who are younger than 65 — have the same risk too. They’re no longer prioritized. Earlier this week, a state vaccine advisory panel rejected a push from disability rights advocates to let them join people 65 and older in the vaccination line now. One meeting this afternoon could change that, however. 

KCRW spoke this morning with Andy Imparato, Executive Director of Disability Rights California, and Hector Ramirez, an LA-based activist who is hard-of-hearing and on the autism spectrum. 

KCRW: Andy, explain your conversations with state officials about trying to get people with disabilities prioritized. 

Andy Imparato: “The state of California is working hard to try to figure out a way to get vaccines to as many people as possible, as quickly as possible. And they're prioritizing people who are most at risk of dying from COVID if they don't get a vaccine. So we've been advocating for weeks with the state — that there are high-risk people with disabilities and serious health conditions who are under 65 years old, who should have access to the vaccine at the same time as people over 65. Because they have a similar level of increased risk of dying from COVID. 

And this week, the state said that we understand that there's a population that is high risk, and we're going to work with the disability community to identify those people and get them the vaccine as quickly as possible. And they've created a new working group to figure that out. And that group is having its first meeting this afternoon at 4:00 p.m. 

So our hope is that after this first meeting, we can start working in earnest to get the vaccines to people who get services from regional centers, that’s folks with intellectual and developmental disabilities, folks who get in-home supportive services, and really anybody who's at high risk of dying from COVID.”

How many people do you estimate would be included?

Andy Imparato: “It's probably between 750,000 and 1 million. I mean, the number would depend on how high risk gets defined. But certainly it's not anywhere near as large as the number of people over 65, or the number of essential workers who are also at a priority category.”

Hector, would you be one of those people?

Hector Ramirez: “I would be one of those people. My family would be one of those people. My community are those people. High risk Californians include not just people who have disabilities and are at high risk, but also those people who are in our front lines, are essential workers, in the Latino community, our Black community, in our native community. Those are groups of people that have been working nonstop since this pandemic. 

… We have also seen … disparities for the disability community from the beginning, not being able to go get food … when we had the shutdowns, running out of paper or essential food. Our community has, in many cases, had to rely on eating cat food. … We have been left behind, not intentionally by our state, but by the way our system has kind of failed to recognize our existence as Californians.” 

KCRW: You’ve had a very personal connection to this. You've had family members who've died of COVID.

Hector Ramirez: “I did. From the beginning, I lost my maternal aunt. She was the oldest matriarch in our family. She had a disability, and she probably contracted going back and forth to the hospital. … She was the second Native American woman in the state of California to die from this. 

It [was] followed later on by some of my other family members. Similarly, my uncle and my other uncle and my brother who died a little bit over three weeks ago. 

… I'm sitting next to the bed where I took care of my brother [during] his final days because he couldn't go to the hospital. He was a person thriving and recovering [from] living with AIDS. And [when] this epidemic came in, he was scheduled to get teeth implanted so he could eat because he was wasting away. That got canceled. 

… He was so afraid of going to the hospital and staying there and dying alone, like my aunt, like my uncles. 

Sometimes he would get too much for me to do. I'm not a doctor. I have autism. I have a psychiatric disability. I'm hard of hearing. And I had to learn to give him IVs. I had to learn to do CPR on him a couple of times. 

And when he finally went to the hospital, it was to die. He ran out of time, like many other folks. 

… I have not seen peace. I have not seen rest. And neither has my family. But we lean on our traditions as Native American people. 

This is not the first pandemic, this is one of many. ... We are overlooking the invisibility of the disability community and the impact that this has had, and is having, on all of us.”

Are you disappointed that the governor changed the eligibility criteria?

Hector Ramirez: “I'm so heartbroken. Because this governor, he's part of the disability community. He's always talking about his disability. We even have a wonderful new president who talks about his disability. And it just makes me wonder how this went so awry. And perhaps it's an issue of privilege to recognize that as a white disabled person, how the decisions that he has made and that the state has made, how they have impacted our community. 

So we speak up not because we're attacking him or recalling him, but because this is accountability. This is a reminder of who the people of California are, and about our values.”

What are the state's plans to perhaps bring vaccines to people who can’t travel to vaccination sites? 

Andy Imparato: “That's an example of why Secretary [Mark] Ghaly and Secretary [Yolanda] Richardson have convened this working group that's meeting for the first time today, to figure out how to get the vaccine to high-risk people with disabilities, recognizing that having everybody come to Dodger Stadium in the Los Angeles area is not going to work for lots of folks with disabilities. 

… Fresno delivered vaccines to people with intellectual and developmental disabilities at a Safeway [supermarket]. Same thing happened in Sacramento just yesterday. 

So it's really a question of what's the easiest way to get the vaccine to the biggest population of high-risk people with disabilities. And if we tap into the service providers that serve people with disabilities and we work collectively, I know that we can solve that. 

It'll also be a lot easier when we have the Johnson & Johnson vaccine where you don't need the deep refrigeration, because then they can take it mobile. And … just one shot versus two shots will also make that easier.”

Johnson & Johnson applied for emergency use authorization this week. That might be coming online soon. So you're saying let's vaccinate these 752,000 to 1 million people with disabilities alongside people who are 65 years and older, right?

Andy Imparato: “Yes. … The over 65 group is important and there are a lot of disabled people in that group. But we're saying that we shouldn't have to wait until May or June until they've done that whole group before they get to people under 65 who are at high risk of dying from COVID.”

Do they seem open to that argument?

Andy Imparato: “They do. It's hard to know where they're going to land. But they've moved a lot in our direction since they announced their age protocols. … I'm cautiously optimistic that we're going to have some good news at this meeting at 4:00 p.m. today.” 

Hector Ramirez: “There's something missing here. How many committees will it take before disabled people will be recognized? I think this is an important time for the disability [community] and for the community that have already gotten the vaccine to work as hard as we can to make sure that as many people as possible, especially California's current high risks, are able to get this vaccine. 

I'm optimistic about this committee. But at the same time, I have been so disappointed this past couple of days that I just don't know what to expect.”

Andy Imparato: “I agree with what Hector said. I think we have a reason to be skeptical. And we can't stop pushing hard on Governor Newsom to prioritize this population. Ultimately, this is the governor's decision. And we've had lots of process and lots of committees, but we haven't had a definitive decision from the governor yet. And that's what we need.”