NOEL KING, HOST:
In California, caregivers for people who have disabilities are supposed to be at the front of the line for the Covid-19 vaccine, but many of them are going to vaccination sites and then running into problems. Here's KPCC reporter Jackie Fortier.
JACKIE FORTIER, BYLINE: COVID-19 vaccines have been difficult to come by, but Oscar Madrigal hoped he'd be prioritized.
OSCAR MADRIGAL: I have two children that are on the spectrum. My younger son has very specific needs requiring round-the-clock care.
FORTIER: In January, the California Department of Developmental Services issued a letter saying that parents like Madrigal are considered health workers and immediately qualify for the vaccine. Through Facebook groups, parents of kids with disabilities excitedly shared the news. Madrigal was relieved.
MADRIGAL: Many kids like mine who have sensory issues, who wearing masks is a big issue, for us, we're really their first line of defense - right? - we are their primary caregivers.
FORTIER: But soon, the tone of the messages on social media changed. At the vaccination sites, parents reported being turned away.
MADRIGAL: They didn't even look at my documentation.
FORTIER: For one thing, only families receiving services from a regional center are eligible. Those are nonprofits that help people with disabilities. LA County Public Health Director Barbara Ferrer says people were mistakenly presenting the January letter as proof.
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BARBARA FERRER: 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.
FORTIER: To get vaccinated, family caregivers need to show a personalized letter from a regional center. But the new rules haven't trickled down to staff at every one of California's vaccine sites.
ANDY IMPARATO: The culture of the vaccine deployment worldwide now is the Wild West.
FORTIER: Andy Imparato is executive director of Disability Rights California.
IMPARATO: Lots of things are happening on the ground in different ways, depending on who is the person screening people for the vaccine and how much training they're giving the people that are doing the screening. And it's not consistent.
FORTIER: 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 issued additional clarification that family caregivers qualify. Imparato says it's a good step, but he's afraid the damage has already been done, especially with caregivers who don't speak English who have already been turned away.
IMPARATO: 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.
CINDY LIU: I am an in-home health care provider for my daughter, who has Down syndrome.
FORTIER: That's Cindy Liu. Her daughter's condition is so severe, Liu is paid by the state to care for her. Liu brought her documentation to her vaccination appointment in Ventura County. Liu's husband had gotten the shot just days before with the same documents.
LIU: They barely even looked at my paperwork. They saw the letterhead and says, you're not - that doesn't qualify you.
FORTIER: She says staff members questioned her repeatedly and implied her documentation could have been faked. Frustrated and demoralized, Liu says she's constantly having to fight for herself and her daughter.
LIU: Just give us the benefit of the doubt. And our lives matter. We're not castaways.
FORTIER: She eventually did get the first vaccination after staff accepted a state-issued paystub as proof. But she wonders if she'll have to go through it all again in a few weeks when she gets the second shot.
For NPR News, I'm Jackie Fortier in Los Angeles.
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KING: That story came from NPR's reporting partnership with KPCC Pasadena and Kaiser Health News.
(SOUNDBITE OF THE ALBUM LEAF'S "BLANK PAGES") Transcript provided by NPR, Copyright NPR.
