Many children with medical complexities are at higher risk for severe illness from COVID-19 than other children, according to the Centers for Disease Control (CDC). These children also stand to lose the most by being out of the classroom, due to the loss of in-person therapy services and unavoidable changes to special education plans.
“It can be very stressful, and I can understand that it’s tough to decide whether you should send your child back to school or keep them in a virtual learning environment,” said Dr. Anup Patel, the section chief of neurology at Nationwide Children’s Hospital and president-elect of the Child Neurology Foundation. “I can’t really tell you the right answer — there is no right answer for all children. That is a very unique decision that has to be made amongst the family.”
Shifting scales
While information is changing daily, and schools across different districts and states are following different protocols, many of the underlying considerations for families remain constant.
“My daughter with Dravet Syndrome is in 5th Grade,” said Heather Johnson, who also has three other older children. “If I decide I want to keep her home to protect her and I send my other kids back, am I exposing her the same anyways?”
The answer, according to child neurologist Dr. Marissa DiGiovine, is, “It depends.” And that’s exactly why each family’s decision-making process can be so complex.
“The reason for keeping the child home is going to factor significantly into this,” Dr. DiGiovine said. “If a child is staying home because of an immunocompromised status, for example, I do think it would be important for the child to isolate as much as possible from others who have had broader contact beyond the immediate family.”
The legal side
As parents choose a learning environment, they also need to understand their legal rights. Federal disability law allows for flexibility in determining how to meet the individual needs of students with disabilities, so parents and caregivers must be prepared to be persistent through the IEP process to get services for their children to receive a free appropriate public education.
And then there are the struggles of actually trying to keep up with classwork from home. Lisa Wilson has been working closely alongside her teenage daughter, who has a number of health conditions and is working her way through her middle school curriculum.
“I’ve been with her, right by her side. If I had to work full time, I wouldn’t be able to do that,” Wilson said. “It’s chaos, so it’s hard for me to say what things will really look like, even in a month. I’m just taking a roll-with-it approach.”
At the end of the day, all families can really do is take it day by day and evaluation decisions as more information becomes available.
“For family members: Search your heart, search your gut, and talk to your school about what accommodations they are making,” advised Dr. Patel.
For more information, please visit the Child Neurology Foundation website.