Parents of Immunocompromised Students Are Forced to Rely on Others to Keep Their Kids Safe and That's Not Fair

With yet another school year to navigate during the pandemic, many families across the country are feeling the stress of having their kids back in school buildings. But for those with immunocompromised children, the stress is often far greater.

An image of a girl wearing a mask looking out a window.
Photo: Getty Images.

While most parents were more than eager to send their children back into the classrooms after months of virtual learning, my anxiety skyrocketed as the start of the 2021–2022 school year neared. My then 11-year-old wanted nothing more than to meet his teacher in real life and see his friends every day, but instead, he had to stay home on doctor's orders.

My son was hospitalized at the age of 5 with a serious condition that nearly left him without a kidney. He faces severe health complications if he contracts COVID-19. We homeschooled him during the initial phases of the pandemic and decided to continue schooling him virtually until he is fully vaccinated. Luckily, our charter school is accommodating our distance learning request. Not every family that needs it has this option, though.

Research shows at least 2.6 percent of kids in the U.S. have immunosuppressive conditions. Families with immunocompromised children say COVID-19 is one of the hardest things they've ever faced. Especially frustrating, schools varied significantly in their approaches to mandating masks, despite the fact that they have been proven to prevent the spread of disease.

Vaccines are also not being universally mandated for all eligible students, teachers, and staff. The responsibility to keep immunocompromised children safe while in school should not solely fall on parents, yet this is what we see happening across the country. Ultimately, parents find themselves facing impossible circumstances to get their children the equal educational opportunity they are entitled to.

The Decision to Return to School Is High Risk

Kris Colihan, a mom of 15-year-old twins, from Chandler, Arizona, says she was forced to prioritize her son's mental health over his physical health when making the decision to send him back to in-person school this year. Her 15-year-old has gastroparesis, primary immunodeficiency disease, dysautonomia, and adrenal insufficiency, among other challenges. Colihan stresses that a simple cold often sends her son to the hospital, so he is at high risk for a serious infection and long-term effects if he contracts COVID-19.

"It is nerve-wracking [to send him back] for sure," she says. "After a year at home, I saw that he needs to be in school, especially given how much school he missed in the past when he was sick."

Masks are not mandated at her son's school, but Colihan takes comfort in knowing that at 15, he is fully vaccinated and knows how to properly social distance, wear a mask, and take necessary precautions to keep himself safe. Had he been younger when the pandemic took its grasp on the country, her decision for his education would likely have looked very different.

Katelyn Espenshade's daughter, Rory, a social second grader, is back in school, too. Rory has type 1 diabetes, which led her parents to speak to their diabetic medical team to create a strategy to keep her safe in the classroom. As parents, they knew they needed to make the hard decision to send her back to school in person in State College, Pennsylvania after a year of distance learning. "Rory craved a break from the monotony of living inside our bubble," explains Espenshade.

Espenshade says her school district's COVID-19 safety practice enforced small classroom sizes, social distancing of desks, and a mask mandate at the start of the 2021–2022 school year. Rory also has an individualized 504 plan, which is developed to ensure that a child who has a disability identified under the law and is attending school receives the accommodations and support they need. The plan helps the school manage her diabetes and minimize her exposure risk. "With all of this in place, she started second grade in person. She is thrilled, but we are ready to transition back to at-home learning swiftly if needed," says Espenshade.

Relying on Others to Keep Immunocompromised Kids Safe

It's a team effort to keep our children safe, especially those with medical conditions, but everyone has to be willing to play their role. Randi Weingarten, attorney, educator, and president of the American Federation of Teachers, underscores the importance of teachers, parents, and schools working together to make this happen.

"There is no higher priority for teachers than keeping kids and families safe—a responsibility that has taken on new urgency during the worst pandemic in a century," she says. "We know vaccination is the single most effective tool to protect ourselves and others from serious illness and death and that's why we've urged everyone who is eligible to get the shot."

While mask mandates are no longer required in schools, the Centers for Disease Control and Prevention (CDC) continues to recommend universal indoor masking for all teachers, staff, students, and visitors to K–12 schools, regardless of vaccination status.

The White House's Executive Order on reopening schools, which was released in January 2021, reflects these recommendations. The order cites the need for "mitigation measures such as cleaning, masking, proper ventilation, and testing," and the Department of Education's website offers a wide array of resources, statements of guidance, and policy statements regarding the coronavirus. In September 2021, President Biden urged governors to require that teachers be vaccinated, but state and school district responses to CDC directive and presidential statements varied.

For the 2021–2022 school year, few states (including California, Oregon, and New York, along with Washington, D.C. and Puerto Rico) required teacher vaccinations. On the other hand, at least nine states, including Alabama, Arizona, Arkansas, and Indiana, prohibited districts from requiring teacher vaccinations. For most states, districts have autonomy regarding this decision. Still, a survey by the EdWeek Research Center found that 87 percent of teachers were vaccinated before the start of the 2021–2022 school year.

Masking directives have been similarly inconsistent across the country. Nine states banned school districts from setting universal mask mandates, while others required masks. However, school mask mandates have since become optional in most places. This inconsistency reflects how far we have to go in the United States toward policies that fully protect children while at school. For families with immunocompromised children, this irregularity—and the rolling back of mask mandates—can be especially frustrating.

Until school mask mandates are again instituted on the national or state level, Weingarten suggests that parents of immunocompromised children look at their individual school's mitigation strategies and ventilation system when considering whether in-person learning is best for their family. Then they should consider what alternate learning opportunities are available, including a limited remote option, if the school policy and the building itself do not seem safe.

Corinne Johnson, a mother of three in Union County, North Carolina, whose youngest son lives with a rare medical condition and no thyroid, felt forced to look into alternate school options after learning her children's school would not mandate masks. "Every pediatric doctor I've spoken with agrees [that a mask mandate] would be safest, not just for my son, but for everyone," Johnson says. She continues, "My son's health is inherently dependent on the way others manage their health. I don't like asking others to adjust their way of life for us, but without relying on others, we have to choose to take unreasonable risks or hide in a bubble. It's really hard."

Corinne Johnson, a mom of three in North Carolina

I don't like asking others to adjust their way of life for us, but without relying on others, we have to choose to take unreasonable risks or hide in a bubble. It's really hard.

— Corinne Johnson, a mom of three in North Carolina

Johnson turned to virtual counseling to help deal with the stress of making education decisions for her children during the pandemic. She says her sessions have been a lifeline.

Steven C. Kassel, a Newhall, California-based marriage and family therapist, agrees that coping techniques help both parents and children. He also encourages families to find a strong support system, including non-parent adults who care about the child's well-being. "Make sure the adults in their lives are standing up for them and are people they can trust," urges Kassel. This can be done by identifying school staff who are strong advocates for children, connecting with other community members that offer support, or engaging extended family members.

For my family, identifying those adults has been essential. The local charter school my oldest son is attending is letting him Zoom into the classroom until he is vaccinated given his previous health issues and WorldOver International School, a private online virtual school that our youngest son attends, offers a safe, engaging learning experience for him. Leadership and educators at both schools have become allies and welcome additions to our existing support structure, which already included extended family. We know the value of trusted adults outside of the parental unit, and we've seen that these support systems make the struggle and strain of schooling during a pandemic a little bit easier.

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