Minnesota family caregivers turned away for the COVID-19 vaccine despite being eligible

Laura Rede was turned away from a vaccine appointment Thursday because the clinic wouldn't accept the paperwork showing that Rede is a health care worker.

"They asked 'Do you have a badge?' " Rede said. "Well you don't have a badge if you work at home."

Rede is one of thousands of Minnesotans who care for a relative at home, in this case daughter Shanika who has Down syndrome, autism and other conditions that have been shown to make her vulnerable to COVID-19.

Caregivers are eligible to receive the vaccine under state guidelines, but some clinics and local public health agencies aren't aware that they are included in the highest priority group, which includes health care workers and long-term care residents.

Proving that those seeking shots fall under an eligible category could become more common as the vaccine rollout expands to more and more groups starting next month. While health systems know the medical conditions of their patients, a community vaccination site might not.

"At some point we are going to have to trust that people are presenting themselves as truthful," said Sarah Curfman, executive director of the Down Syndrome Association of Minnesota.

Curfman has been providing letters to parents of Down syndrome children that have helped some get vaccinated, and she's also been talking to pharmacies and local public health agencies to make them aware of the policy.

With Curfman's letter in hand, Jenny Menya successfully got a COVID-19 vaccine Wednesday.

"Luckily the clinic I went to was aware of the policy," said Menya, who has a 3-year-old child with Down syndrome.

"I was terrified that something could happen to him," she said. "It makes me feel so much better than I am able to protect him better by having this shot."

Like many others, Menya doesn't get paid for her caregiving duties and is also employed in the private sector.

Unpaid caregivers face barriers to the COVID-19 vaccine because they don't have anything, such as a pay stub or employee badge, to show that they are caring for a vulnerable individual.

Rede brought several documents about the arrangement, but the clinic was not satisfied, saying it needed to see something that showed employment at a hospital or other medical institution.

"I have proof here that I'm actually working 40 hours a week for pay for my daughter," Rede said. "My situation is that I actually do have a pay stub to show, but it wasn't what they wanted."

Rede's wife has been vaccinated as a nursing student who interacts with patients, but the couple and two other children have cut back on activities to protect Shanika.

"Her doctors have been really clear that we should be vaccinated as soon as we can," Rede said.

Curfman said things improved recently after the Minnesota Department of Health added more information to its guidelines that paid and unpaid caregivers do qualify for the shot.

"Also, as health care providers and social services are learning about it, we ask for their cooperation to assist families with complex medical needs navigating vaccination as much as possible," the agency said in a statement.

People can try to get vaccine appointments through the state's vaccine connector website, but the system does not have an option for home caregivers.

Instead, they must indicate that they are a first responder who provides direct patient care as part of the EMS system or as a health care worker. Then, when prompted with "If you are employed, can you work from home?" they should select "No."

Curfman said the system creates confusion because many caregivers don't identify as a first responder.

"It is not something that someone would intuitively say yes to," she said.

Instead, she suggests that parents create their own documentation, such as a medical record with the child's diagnosis or a copy of the school's individualized education program, a document that is needed for special education.

Curfman, who is also a caregiver to her Down syndrome child, got an appointment for the vaccine this weekend.

But she's been reluctant to bring a letter signed by her that would say that she is eligible.

"It has been easy to do letters for others, but who is going to sign mine?"