A lack of vaccinated home care workers causes some parents of children with conditions like cerebral palsy or severe epilepsy to give up sleep and their own mental health to make sure their children breathe at night.
The National Association for Home Care and Hospice estimates a vaccination rate of only 40% among the industry’s 2 million nurses who work in a wide variety of specialties. Only a handful of states require that home nurses be vaccinated against COVID-19, and the Biden government has not created a federal mandate. Now, many parents must weigh the chance of bringing the virus into their homes or taking care of their children on their own.
The risk is not theoretical. At the start of the pandemic, 83% of children admitted to pediatric intensive care units with COVID-19 had pre-existing medical conditions, most of which needed technological support to survive even before contracting the virus. According to the Children’s Hospitals Association, around 3 million children across the country have complex medical needs.
“Either someone forgot this whole group of people or they thought, ‘You know what, they don’t matter,'” said Mary Rubenstein from Chicago. Her four-year-old daughter Evelyn suffered a serious brain injury from a previous adoptive parent.
Since vaccines became widely available earlier this year, the US has wrestled over whether to get people to take them. With a significant proportion of the population disbelieving scientists and opposed to public health action, governments have been cautious about setting blanket rules, resulting in a patchwork protection system.
The Biden government last month required nursing home workers to get vaccinated, but has yet to extend this to those who provide home care despite requests from advocates. According to the National Academy for State Health Policy, 22 states require COVID-19 vaccination for health care workers. Only Maine and Massachusetts extend this requirement specifically to the home health workforce. The mandates of some other states may be broad enough to include home care, but the requirements are new and the implementation fluid.
Rubenstein helps direct a letter campaign begging Illinois government officials to expand the mandate for health workers to include home care.
Susan Agrawal, founder of an advocacy group representing 1,500 “medically fragile and technology dependent” children and young adults in Illinois, is also part of the campaign. In her letter to Governor JB Pritzker, she admits that these children’s homes are technically not health facilities, but said: “Many look very much like an intensive care unit, with hospital beds, ventilators, pulse oximeters, feeding pumps and many others.” medical equipment.”
Jordan Abudayyeh, press spokesman for Pritzker, did not respond to a request for comment on the extension of the mandate.
Accurate estimates of children in home care are difficult to come by. According to the U.S. Centers for Disease Control and Prevention, 4.5 million people of all ages were cared for at home in 2015.
The pandemic was especially harsh for these families in 2021 as they had to choose whether to trust their nurses or go alone. They have recently endured overcrowded children’s hospitals from rising COVID-19 cases. In the past month alone, Evelyn has been to a children’s hospital in Chicago three times with life-threatening seizures and drug reactions.
It was difficult to find help. Ev, as Rubenstein calls her, likes to be held constantly. For months, Rupenstein and her wife, who worked outside the home, had no nurses and had to structure their day tightly: Rubenstein fitted sleep, showering and housework like a dog walk into a seven-hour window that ended at 2 a.m.
In the past few weeks, they found a home care company that provided a vaccinated nurse, but were shocked that the state’s vaccine mandate didn’t extend to the high-revenue jobs. Now they live in fear that their nurse will quit and they will have to find someone else who has been vaccinated.
The National Association for Home Care and Hospice has not endorsed vaccination regulations but does support incentives and education that would increase rates for everyone, said Tom Threlkeld, a spokesman.
“We have to be honest and acknowledge our lack of vaccinations as an industry,” said Bill Dombi, the association’s chairman, in a statement on Aug. 23. “This is even more urgent because the Delta variant is fast.” Spread among the unvaccinated, coupled with the colder winter months. “
Elena Hung, executive director of Little Lobbyists, a national advocacy group for children with complex medical needs, said she spoke with the Biden government about introducing mandatory vaccination for home health workers. Much of the money for this care comes from Medicaid, the joint federal-state program.
“Home care is often left out of the conversation,” she said. “They are usually the weakest among us.”
Kevin Munoz, a White House spokesman, declined to answer questions about the extension of the mandate.
In the meantime, unvaccinated nurses may gravitate towards home nursing jobs. Hung said a North Carolina family reported seeing “coded” Facebook job advertisements from health companies aimed at nurses trying to bypass mandates established by hospital systems. One on July 22, the same day the North Carolina Healthcare Association announced that multiple hospital systems would require vaccinations, attracts nurses “looking for new opportunities.”
Home nursing has long had problems finding and retaining workers as many hospital or nursing home nurses can earn more, said Nicole Jorwic, senior executive officer of state advocacy at Arc, an advocacy group for people with intellectual and developmental disabilities. She said there shouldn’t be different standards of care, be it in a hospital room or a bedroom.
“We’re talking about justice here,” said Jorwic.
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