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Why One Group Eligible For Vaccination Is Struggling For Access

A person in blue-gloved hands holds a vial of vaccine.
A pharmacist from UCI Health holds a dose of the Pfizer BioNTech COVID-19 Vaccine.
(Chava Sanchez
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Parents and family caregivers of people with disabilities are eligible to get COVID-19 vaccines now — but some are being turned away from immunization sites because of confusion caused by piecemeal communication from health departments.

‘We’re Not Castaways’ — Caregivers Of People With Disabilities Struggle To Get Vaccinated

Oscar Madrigal is one of those family caregivers. As the vaccination effort began, he hoped he'd be prioritized. Two of his children are on the Autism spectrum and his younger son requires almost constant care.

Madrigal didn't have long to wait. Last month, the California Department of Developmental Services issued a letter stating that parents like him are considered health workers and immediately qualify for the vaccine.

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Through Facebook groups, parents of kids with disabilities excitedly shared the news.

Madrigal was relieved. As his son's primary caregiver, he didn't know how his family would cope if he came down with the coronavirus.

Oscar Madrigal and his two sons, who have both been diagnosed with autism. (Courtesy of Oscar Madrigal)

But he soon noticed the tone of the messages on social media changed. At the vaccine sites, parents reported being turned away and not everyone seemed to qualify. For one thing, it turns out that the only families who are eligible are those who receive services from a state-supported regional center, nonprofits that help people with disabilities.

To get vaccinated, caregivers need to show a personalized letter from a regional center. But some were mistakenly presenting the January form letter as proof of their eligibility.

'They Didn't Even Look At My Documentation'

"Lots of people were xeroxing it, frankly lots of people were using it inappropriately to claim that they were in fact the health caretakers of their children," said Barbara Ferrer, director of the L.A. County Public Health Department.

Madrigal dutifully got the required paperwork and brought it to an L.A. County vaccination site. He was turned away.

"They didn't even look at my documentation," he said.

As Madrigal found, the new rules haven't trickled down to staff at every one of the county's hundreds of vaccine sites.

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"I think to give families some kind of expectation, and then have that expectation taken away becomes really, really draining on us," he said.

Vaccine Deployment Is 'the Wild West'

"The culture of the vaccine deployment world right now is the Wild West," said Andy Imparato, executive director of Disability Rights California. He's heard stories like Madrigal's from around the state.

"Lots of things are happening on the ground in different ways, depending on who is screening people for the vaccine, and how much training they're giving the people that are doing the screening. It's not consistent," he said.

That's because there are dozens of city and county public health departments around the state, each with its own approach to the vaccination process.

After weeks of confusion, the California Department of Public Health made it clear on its website that parents and caregivers of people with disabilities should be getting the vaccine now.

That was a good step, said Imparato, but he's afraid the damage has already been done -- especially with non-English speaking caregivers who've already been turned away from a vaccination site.

"The authority figure has told them that they're not eligible, and they're going to go home and wait until they are eligible. And that makes me very sad, because that's not accurate," Imparato said.

But parents with means and the knowledge to navigate the system -- people like Oscar Madrigal -- push back. After writing to his elected officials about the mixup with his vaccination, Madrigal got another appointment.

'Our Lives Matter. We're Not Castaways'

Cindy Liu and her husband wanted to get the vaccine to help protect their daughter, who has Down Syndrome. It's on the list of conditions the Centers for Disease Control and Prevention has linked to serious illness from COVID-19.

Cindy Liu and her daughter Sammy at the beach. Cindy is Sammy's in-home health provider. (Courtesy of Cindy Liu)

Her daughter's condition is so severe that Liu is paid by the state to care for her.

Liu brought her paperwork to her vaccination appointment in Ventura County, the same place her husband had gotten the shot just days before with the same documents.

"They barely even looked at my paperwork," she said. "They saw the letterhead and said, 'That doesn't qualify you.'"

Liu said staff questioned her repeatedly and implied her documentation could have been faked, leaving her frustrated and demoralized.

"Just give us the benefit of the doubt," she said. "Our lives matter. We're not castaways."

Liu eventually got the first vaccination after staff accepted a state-issued pay stub as proof. But she wonders if she'll have to go through it all again in a few weeks when she returns for her second shot.

What questions do you have about the pandemic and health care?
Jackie Fortiér helps Southern Californians understand the pandemic by identifying what's working and what's not in our health response.

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