In California, confusion and botched communication has caused some eligible parents and family caregivers of people with disabilities to be turned away at covid vaccination sites.
Oscar Madrigal is one of those caregivers. His two sons are on the autism spectrum and his youngest requires almost constant care.
As the vaccination effort began, Madrigal hoped he and others like him would be prioritized, and he didn鈥檛 have long to wait. In January, the California Department of Developmental Services stating that family members like him 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. As his youngest son鈥檚 primary caregiver, he didn鈥檛 know how his family would cope if he came down with the coronavirus.
But he soon noticed the tone of the messages on social media changed. Parents reported they鈥檇 been turned away at the vaccine sites. Only families who receive services from one of California鈥檚 鈥� nonprofits that help people with disabilities 鈥� are eligible.
To get vaccinated, caregivers need to show a personalized letter 鈥� attesting they are family caregivers of a child with disabilities 鈥� from their regional center. Some were mistakenly presenting the more general form letter issued by the Department of Developmental Services from January as proof of their eligibility.
鈥淟ots 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,鈥� said Barbara Ferrer, director of the L.A. County Public Health Department.
Madrigal, whose children do get services from a regional center, dutifully got the required personalized paperwork and brought it to an L.A. County vaccination site. And, still, he was turned away.
鈥淪he didn鈥檛 even look at my documentation,鈥� he said. 鈥淪he just said, 鈥榃e have no way of verifying this.鈥欌��
The county has hundreds of vaccination sites, and Madrigal found out the new rules haven鈥檛 trickled down to all staff members.
鈥淚 think to give families some kind of expectation and then have that expectation taken away becomes really, really draining on us,鈥� he said.
Vaccine Deployment Is the 鈥榃ild West鈥�
鈥淭he culture of the vaccine deployment world right now is the Wild West,鈥� said Andy Imparato, executive director of and a member of the state鈥檚 vaccine advisory council.
Imparato has heard stories like Madrigal鈥檚 from around the state.
鈥淟ots of things are happening on the ground in different ways, depending on who is screening people for the vaccine, and how much training they鈥檙e giving the people that are doing the screening. It鈥檚 not consistent,鈥� he said.
That鈥檚 because each of dozens of city and county public health departments has its own approach to the vaccination process.
After weeks of confusion, the California Department of Public Health clarified on its website that parents and caregivers of people with disabilities should be getting the vaccine now.
It鈥檚 still a patchwork system. CDPH left the decision of who qualifies as a family caregiver to each regional center. In an emailed statement, CDPH said regional centers can determine who the 鈥渋ndividuals who have specialized health care needs are.鈥� That means some parents of children with autism may receive a letter from their regional center letting them know they qualify for the vaccine, while other parents could be turned away by their regional center.
Imparato said he鈥檚 afraid the early confusion caused damage 鈥� especially with non-English-speaking caregivers who鈥檝e already met frustration at a vaccination site.
鈥淭he authority figure has told them that they鈥檙e not eligible, and they鈥檙e going to go home and wait until they are eligible. And that makes me very sad, because that鈥檚 not accurate,鈥� Imparato said.
But parents with the means and knowledge to navigate the system 鈥� people like Oscar Madrigal 鈥� have pushed back. After writing to his elected officials about the mix-up with his vaccination, Madrigal got another appointment.
鈥極ur Lives Matter. We鈥檙e Not Castaways鈥�
Cindy Liu and her husband wanted to get the vaccine to help protect their daughter, who has Down syndrome. It鈥檚 on the the Centers for Disease Control and Prevention has linked to serious illness from covid-19.
Liu is paid by the state to care for her daughter because the girl鈥檚 condition is severe.
Liu brought her paperwork to her vaccination appointment at the Goebel Adult Community Center in Ventura County, the same place her husband had gotten the shot just days before with the same documents from their regional center.
鈥淭hey barely even looked at my paperwork,鈥� she said. 鈥淭hey saw the letterhead and said, 鈥楾hat doesn鈥檛 qualify you.鈥欌��
Liu said staff questioned her repeatedly and implied her documentation could have been faked, leaving her frustrated and demoralized.
鈥淛ust give us the benefit of the doubt,鈥� she said. 鈥淥ur lives matter. We鈥檙e not castaways.鈥�
Liu eventually got her first vaccination after staff members accepted a state-issued pay stub as proof. But she wonders if she鈥檒l have to go through it all again in a few weeks when she returns for her second shot.
This story is part of a partnership that includes KPCC, and KHN.