For Julie from Westchester County, N.Y., getting Covid would mean her mother would be stuck at home alone for two weeks. No doctor’s appointments, no visitors and very limited groceries.
That’s because Julie, 50, is the primary caregiver for her mother, 76. She’s hoping that New York State will allow her to get the Covid vaccine so she can continue to keep her mother afloat.
“I would say being a caretaker for another person is high risk,” Julie said in a phone interview, speaking on condition that she be identified only by her first name. “I am the one out and about going to stores picking up food and going to the pharmacy.”
Around 50 million Americans take care of sick or disabled family members who are at high risk of complications from Covid. Most are unpaid and don’t know when their turn to get vaccinated will come.
Advocates say leaving these workers out of the early rollout is unfair and could have serious repercussions for the people they care for, as well as for the states they live in and for the country as a whole.
Caregivers as the state’s safety net
“Family caregivers are the state’s long-term care insurance policy,” said Magdalena Ornstein-Sloan, an expert on family caregiving who teaches public health at Sarah Lawrence College. She is also the primary caregiver for her mother, who suffered a brain aneurysm.
Ornstein-Sloan said state and federal policies are needed to guarantee family caregivers priority access to vaccines as frontline workers not only for humanitarian reasons but also to keep the country afloat during the Covid crisis. She said every time a caregiver falls ill, that increases the burden on the already strained healthcare system, a point she explained in a recent Op-Ed.
Ornstein-Sloan and her mother live in Queens. Her home state of New York has 2.5 million caregivers.
“Look at the numbers. If my mom were in an institution, that would cost New York State close to $200,000 a year,” Ornstein-Sloan said. “If 100 caregivers had to stop providing care because we got sick or died because of Covid, that’s $20 million that the state would have to come up with.”
Nursing home residents account for over over a third of Covid deaths nationwide. These homes are already pushed to the brink of disaster by the pandemic, and an influx of patients who were formerly cared for at home could only make matters worse.
While professional health care workers were among the first groups to become eligible for vaccination when the Moderna and Pfizer shots were approved in late December, family caregivers of sick relatives were generally not included. Since then, ClearHealthCosts found that only 13 states currently mention caregivers at all in their vaccine distribution plans. In the remaining states, family caregivers have to wait until they are eligible based on their age, profession or their own medical status.
Ornstein-Sloan said that’s not good enough.
“It’s high time that we are not living in terror every day over what happens to our loved ones if something happens to us,” she said. “It’s just a dreadful thing to think about.”
Loopholes and confusion over state policy
Linda Barrios is a part-time caregiver for her nephew, Ben, who has Down syndrome in Pittsburgh, Pa. She spends around 20 hours a week caring for him when he is not in school, driving him to and from home and helping him with life skills like money management and cooking.
Pennsylvania is not one of the states offering the shot to caregivers, but Barrios qualified a vaccine because she is employed by a third-party agency to take care of Ben, making her technically a frontline worker. Because of his condition, Ben is entitled to government-funded services, and Barrios, a former social worker, works as his community habilitation aid.
“Everybody at my organization was offered a vaccine,” Barrios said, noting that not all of her colleagues take care of a relative. “That doesn’t mean you necessarily take it, but I’m one of the ones who wanted it. So as soon as I could get it, I signed up.”
Barrios got her first dose Jan. 13 and is scheduled to have her second dose later this month. With vaccine supply still low in Pennsylvania, Barrios said she is frequently asked how she was able to get an appointment.
“People have asked me, ‘how did you get it?’ Because they can’t get it. They’re calling all the doctors and whatnot,” she said.
Even Barrios admits that she was surprised to learn Pennsylvania would allow her access to the vaccine.
“I wasn’t sure if they would consider me [a frontline worker] because I don’t work in a school or hospital,” she said.
Unclear language leads to confusion
Unclear language in state policies has led to confusion as to whether family caregivers — paid or unpaid — count as frontline workers or healthcare workers. In some states, county authorities and other local officials even have some leeway in how they interpret some of these categories, Josh Michaud, researcher and associate director of global health policy at the Kaiser Family Foundation, said in a phone interview.
“Certain people fall into this gray area: Are they in this group or are they not?” Michaud said. “A person taking care of an elderly family member might be one of those. And I don’t think many states have explicitly accounted for that.”
Being a caregiver on the payroll at an agency meant Barrios was in. She said being vaccinated was like having a weight lifted off her shoulders.
“It’s a relief. It’s a stress reducer, because I don’t want to get Covid and I don’t want to give it to someone else,” she said. “That’s a primary concern right now for me, probably more than anything else. So yeah, for me, it’s big.”
But across the border in New York State, Julie from Westchester County who cares for her mother still lives in fear.
“The minute you get a headache or a sniffle you panic like ‘oh my god, you know, two weeks,’” Julie said. “That’s a long time that I couldn’t buy my mom food or even just visit her because she’s alone.”
And she doesn’t know when her turn for the vaccine, and a return to normalcy will come.
“I’m not even at all eligible,” she said. “And I don’t know when I’ll be eligible.”
Is my state vaccinating caregivers?
A ClearHealthCosts investigation found that 13 states mention caregivers in their official vaccine distribution plans and one state announced it will be adding some types of caregivers to future rollout phases. And in late January, the Department of Veterans Affairs announced that it would begin vaccinating eligible veterans and their caregivers. Check our list to see where your state stands.
California‘s official guidelines state that family caregivers for people with certain conditions are eligible for the vaccine. The caregivers must provide documentation verifying the qualifying condition of their family member and their caregiver status.
In Georgia, adults aged 65 and over and their caregivers are eligible in the current rollout phase, 1a+.
Kansas will vaccinate home caregivers (paid or unpaid) and personal care aides in phase 2 of its rollout.
This week, Massachusetts announced that caregivers who are bringing people over 75 years old to get vaccines can sign up for their own “companion” appointments, even if they don’t qualify under the state’s guidelines, though they must attest that they are a caregiver.
New Hampshire recently announced it would be adding people who are medically vulnerable at significantly higher risk, including family caregivers for those under 16 to phase 1b.
New Jersey includes unpaid workers like health professional students, trainees, volunteers, and essential caregivers under healthcare personnel and is currently vaccinating them as part of phase 1a.
New Mexico counts family home caregivers, child care workers, (paid or unpaid) of persons who care for those with high-risk conditions as frontline essential workers and is vaccinating them in phase 1b.
North Carolina includes home caregivers providing regular medical care to medically fragile children and adults as healthcare workers and is vaccinating them as part of group 1. The state also announced that people who serve as caregivers to older adults would be considered frontline essential workers and included in Group 3 of the vaccine rollout, according to a North Carolina Health News report.
The Washington Post reported that Oregon is prioritizing caregivers of vulnerable children and adults who live at home for the vaccine.
Tennessee will vaccinate household residents and caregivers of medically fragile children in phase 1c.
Virginia is vaccinating primary caregivers for persons with severe chronic medical conditions or with intellectual or developmental disabilities requiring a high level of daily care as well as primary caregivers, who interact with patients at higher risk for infection due to the patients’ individual risk factors but are not known or suspected to be infected with COVID-19 as part of phase 1a.
Washington is vaccinating home health aides, care aides, caregivers and companions in phase 1a.
Wisconsin is vaccinating paid and unpaid caregivers who are enrolled in certain state programs.
Wyoming is vaccinating caregivers of those who are medically vulnerable and unable to be vaccinated in phase 1b.
Virginia Jeffries is a journalist in New York City. Since 2020, she has reported on long Covid, medical billing and the U.S. vaccine rollout for ClearHealthCosts. She earned a master’s in journalism from the City University of New York in 2019 and has previously worked for the Forward and Coconuts Singapore.
Before becoming a reporter, she worked in education.
Find her on Twitter and Instagram @virginiajeffr.