By: Margaret Storey, parent advocate for children with medical complexity and disability
Right about now, parents across our country are wrestling with complicated and uncertain plans for kids returning to school during the COVID-19 pandemic. Some may have already sent their children back to face-to-face classrooms; others are choosing between that and remote options; yet more are in districts that are only conducting remote education.
No matter what, many of us are feeling that there are no good choices. But this reality is especially true for families whose children have medical complexity and disability, for whom return to school poses particular challenges and hard decisions.
I know these dilemmas all too well. My daughter, Josie, 17, has Aicardi Syndrome, a complex condition of epilepsy that causes intractable seizures and significant physical and intellectual disabilities. She is non-verbal and non-ambulatory, and requires supports with all activities of daily living.
And she loves school.
My husband and I are lucky that Josie is able to attend an excellent public school for students with disabilities—it provides a rich mix of academic and therapeutic education, delivered by a talented and compassionate faculty and staff.
One of the things that makes her school so exceptional is that she is supported in all the ways she needs—but many of those ways are physical. The intimacy of contact at school (feeding, toileting, medication administration, positioning) create contacts that are higher risk than a typical child experiences at school. And even if Josie isn’t at higher risk for contracting the virus, the consequences of contracting it could be severe—for her, potentially worsening her underlying neurological condition and the consequences of that.
But there’s also the consideration of our family. Her dad and I, both in our fifties, are her primary caregivers, and should one of us become ill (or worse), the challenge of caring for her is daunting. The way we understand “risk” is really not just about the virus itself. But it’s about the ways that the virus could destabilize the structures we’ve put in place to keep Josie living with us at home.
These considerations are ones that we developed in consultation with Josie’s physicians, and with her school team. We asked lots of questions, read whatever we could get our hands on, and talked to other parents. Because we are fortunate to have home-based personal support worker for Josie, and both work from home, we are in a position to choose to keep her home and do remote schooling this fall, an option that our school district has offered.
But this isn’t a decision that can or would work for everyone, and that’s why at Lurie Children's, our parent-physician team has worked to outline medical information, common questions, and useful resources that can help other families make the best determination possible for their kids, given your local and personal circumstances.
No one impresses me like the families of kids like Josie, whose grit, courage, love, and patience are so central to their kids’ health and happiness. This is a really challenging time, and I wish you all the best as you navigate this new, difficult territory!
About the Author:
Margaret Storey is Professor of History and Associate Dean of the College of Liberal Arts and Social Sciences at DePaul University. As a parent advocate for children with medical complexity and disability, she serves on the Board of Directors of the Danny Did Foundation, the Family Advisory Board and Public Advocacy and Community Engagement Committee at Ann and Robert H. Lurie Children’s Hospital of Chicago, and the Pediatric Epilepsy Learning Health Systems Community Core of Weill-Cornell Medicine in New York. She is the author of opinion pieces about medical marijuana, special education, disability rights, and Sudden Unexpected Death in Epilepsy for The Guardian online, the Motherlode Blog at The New York Times, The Chicago Tribune, and CNN Online.