SAN FRANCISCO, Calif. - People with disabilities in California are not prioritized in the current plan for an equitable vaccine rollout, say experts, advocates, and caretakers. When Governor Gavin Newsom announced a plan last Monday to improve statewide vaccinations, he excluded, in large part, people with disabilities from the framework. Many people with disabilities, especially people who need caretakers to live independently, are at a high risk of dying from COVID.
Now, some Californians with disabilities worried that these exclusionary rules may kill them.
"When we talk about justice and equity, disability is often left out, forgotten, or tacked on at the last minute," said Alice Wong, a San Francisco-based disabled activist, media maker and consultant. "We see this with a vaccine for California, but also across the state because there is no national plan—there is no funding. There clearly is not an infrastructure."
Right now, Newsom’s vaccination plan—"a single statewide standard"—will "continue through 65+, health care workers, and prioritize emergency services, food and agriculture workers, teachers and school staff." After that, the state will transition to "age-based eligibility".
"We don't actually see specifics about people with disabilities until we get to level 1C," said Silvia Yee, a senior staff attorney at Disability Rights Education and Defense Fund (DREDF) in Berkeley. Tier 1A includes frontline health workers and people in congregate living facilities and 1B includes people over 65 and certain essential workers.
Yee said that people in 1C probably won’t be reached until June. Wong, who is slated to be eligible in 1C, said that with age-based eligibility, broad judgements about what constitutes a good quality of life—perhaps a long one—are inherent within the vaccine framework.
"In the eyes of the state, these lives are not valuable," Wong said of high-risk Californians with disabilities. "These lives are disposable." To share stories of high risk folks, including those with disabilities, Wong asked people on social media to tweet using #HighRiskCA.
Certain people with disabilities may not live as long as an able-bodied person. They may need support to live independently. And, they may be at high risk of dying from coronavirus. Their life matters just as much as anyone else’s, Wong says.
"I think a lot about all the disabled, chronically ill, immunocompromised people who are younger than me," Wong, who is 47, said. "People in their 20s—because they do exist, And they are just as high risk as anybody else….Age is not the sole determinant of risk, and by going with this approach, he’s going to cause a lot of harm."
One such person is Syreeta Nolan, an undergraduate UC San Diego student with disabilities. She is stuck in her room, and afraid of doing socially distanced activities, because of the risk: "If I was to get COVID, I'd be at much higher risk of dying."
"Being high risk myself, I just find it terrifying seeing every day that people under 30 are dying from this virus," Nolan said. "And we're not even considered in the current rollout, like, are disabled people disposable?"
Nolan, who is black, said that her fear doesn’t end with getting the virus. Say she went to the hospital for treatment? "I fear for my life as a black person, because there is so much racism. And there's the views of, ‘black people experience pain differently’, when we experience pain the same way!"
"Really, equity is all about addressing disproportional risks and addressing disproportionate impacts," said Sheraden Nicholau, the Bay Area regional manager for the State Council on Developmental Disabilities.
Eileen Crumm, the executive director of Family Resource Navigators, an organization that provides free support, education and advocacy for people with disabilities and their families, said that the vaccine is not robustly available to both registered caretakers and family caretakers. She’s a caregiver herself to her 26 year-old son with cerebral palsy.
This is critical, because people with disabilities have long fought to live independently, and within communities, rather than in group residential facilities. The caretakers provide "the assistance they need to get out of bed, to toilet, to have a meal—to enable people to live their life," Yee said.
Now, some people with disabilities living independently face a cruel irony: people with their same disabilities, who live in group homes, are eligible for the vaccine, but they’re not, because they live independently.
And for those who use personal care assistants, there is also an unavoidable, increased risk for the virus due to the necessary, routine, in-person exposure.
Crumm said that her son is desperately waiting to move into his own place. "The good news is we finally got to the top of the list to be able to get him an apartment," she said. "But the bad news is you can't get staff right now. Because it's not really safe for him." One of his caregivers had to quit, to care for one of her own family members. Now, Crumm and her husband are filling in as her son’s caregivers.
"We are both on family leave for part of our day now every day to be able to provide him care, because we didn't want to bring somebody in who was new," she said. "Because it's too dangerous is the honest answer."
Yee said that personal care assistants are often not paid well. Because of this, to make ends meet, they may have to work multiple jobs, or take positions in multiple homes. Of course, these workers "...can have their own families, children—their spouses can be essential workers. So, all of that comes into the picture when you have a person with a disability who needs personal care assistance."
And family caregivers—sometimes parents, aunts, or uncles—are left without a clear way to get a vaccine, to protect themselves and their family from a deadly virus.
"People who are taking care of their children, who are family caregivers, who are unpaid, they have no portal to sign up on," Crumm said. "They have no way of getting in, they have no clinics to access."
That’s the case for Madeline Van Engel, a mother of two in Oakland, who has a 5-month old daughter with a disability. If her daughter gets coronavirus, she’s at a high risk of dying.
Van Engel and her husband both work full-time and do not have childcare. They are their childrens’ sole caretakers, and, unsuccessfully, have been trying to get the vaccine.
"From my limited experience of five months, of being a parent of someone with a disability, it's like, there's a whole new added layer of complication in your life," Van Engel said. "...it's really tricky not having clear guidance in something that can be life saving."
Caroline Hart is a writer and producer at KTVU. She covers inequality, unemployment and the economy. She can be reached at email@example.com.