Back to school: All children deserve to go in person — and stay safe from COVID-19

As the country wrestles with the safest ways for children to be back in school during the COVID-19 pandemic, some key voices need to be heard: children with serious medical conditions and their parents. About 1 in 20 children in the U.S. have some form of disability, which averages out to about one child in every classroom. About 1 in 200 children have some of the most complex health care needs, ranging from daily injected medications to feeding tubes to a ventilator to help them breathe. Sometimes their needs are easily visible and sometimes they are not, but most schools include several of these children and often many more. As a parent of a child with complex needs and a pediatrician for many children with similar needs, we want to ensure that these children’s needs are front and center in the debate about universal masking and other decisions in school policy to limit the spread of COVID-19.

A parent’s perspective: At the age of one, my daughter Madelyn suffered an anoxic brain injury after she aspirated, and her heart stopped for 30 minutes. We were thrust into a world that we never knew existed, the world of medically fragile children. This is a silent and easy to miss population. The very nature of our kids’ needs, equipment and abilities means we live in a constant state of heightened stress. Often, we focus on just making it through the day, rather than celebrating the developmental milestones and achievements of most other school-age children and their families.

We were fortunate to live in a school district that offered school-based services in the form of an integrated school. The program integrated special needs kids in a mainstream school setting. Kids had the opportunity to see the diversity of abilities and all kids received support to achieve their own goals. Not only did she receive physical, occupational and speech therapies during the school day, but this school fed her soul. She thrived when in the company of her friends, and her friends thrived in her company.

However, the school was very much like all others in one big way, the transmission of viruses. Medically fragile children are more easily and dramatically impacted by the communicable diseases in their communities. For a baseline healthy kid, viruses might mean a runny nose or a day or two out of school. For children like Madelyn, it can mean weeks of recovery and hospitalizations.

Even before the pandemic, we had to ask ourselves whether it was safe to attend school where kids share germs liberally, further adding to feelings of isolation. When this happened the developmental gains we strived so hard to achieve slowly began to slip, as the focus returned to ensuring her basic health rather than developing the cognitive and social skills with her classmates that we all knew were so special to the school setting.

With the late summer surge of COVID-19, parents of medically fragile children face a wrenching question: Is my child’s school safe? Do we risk sending our medically fragile children to school, or do we further and more permanently recede from a school environment which our children need in order to thrive?

A pediatrician’s perspective: School closures and virtual schooling during the pandemic have helped re-emphasize how central schools can be to the wellbeing of children and families and especially children with complex needs. Schools are the very fabric that binds children with complex needs to the community, and the services upon which they rely was unwoven. Patients of mine with cerebral palsy went months with little to no physical therapy. Families of children with autism had to muddle through virtual speech and behavioral therapies that help their child learn to interact with others and care for themselves. The return to school offers these families the opportunities to make up for lost time.

Fortunately, we’ve learned a lot over the past year about how to limit the spread of COVID-19 in schools. Everyone wearing a mask in schools is a key piece of that. It’s worth a reminder that the main reason to wear masks in settings like schools is to protect others, especially others like medically fragile children who are at risk for hospitalization and even death from COVID-19. For those too young to be immunized, physical distancing, frequent hand washing and universal masking are crucial to limiting the spread of the virus. None of these are guaranteed on their own, but together they provide layers of protection.

Policies that prohibit or undermine these layers of protection undermine the safety of medically fragile children in schools. Would it make sense to prohibit schools from spacing desks? Do we allow parents to opt their child out of handwashing? Universal masking in schools should be treated no differently.

Keeping all children safe at school: All children deserve the opportunity to attend school in person — and all children have the right to do so safely. The absence of universal masking policies in schools disproportionally disadvantages medically fragile children, threatens their health and impinges on their rights to participate in school safely. It is with this perspective that we implore policymakers at all levels to support universal masking in schools. Without safe schools for all children, we risk losing decades of time and educational investments in our children, our families and our communities.

Amy Wodarek O’Reilly is a health policy advisor specializing in Medicaid and CHIP program issues, a parent representative on the board of directors for A Rosie Place for Children and parent to two children with complex medical needs.

Joseph Zickafoose, MD, MS, is a pediatrician and health policy researcher and advisor. Follow him on Twitter at @joezickafoose