COLLINSVILLE — There are few things Lela Post loves more than being pushed on the large, round tree swing in her family’s backyard.
"I believe I can fly!" the 6-year-old screams as her father releases the swing, soaring Lela and her sister Bianca, 4, through the cool air. Their mother watches nearby as a fire crackles in the background. It's blissful here.
But away from their home, Lela’s parents, Jacob Post and Stephanie Biondi, have worked hard to keep her safe since she was diagnosed in early 2021 with leukemia, the most common cancer in children and teens.
"When she first got diagnosed, we had just gotten our vaccines, and so we were kind of preparing for things to get better and, you know, we thought everything's going to be going back towards normal,” Biondi said.
Instead, Lela joined the ranks of almost 2 million other school-age children across the country who have health conditions that weaken their immune system, according to the Centers for Disease Control and Prevention. Immunocompromised people have a higher risk of severe illness or death from COVID-19.
A community divide
Post and Biondi faced difficult choices about how to best keep the coronavirus out of their home. Who would they allow into their family’s bubble? Would Lela attend school in person? What would that look like?
“Every moment we had to think, ‘OK, how do we keep Lela safe?’” Post said.
They decided Lela should stay home from school for the rest of the year. She only began attending kindergarten in-person full time in January.
One of the big ways the family tries to keep Lela safe is to make sure people around her wear masks, even at school. But this has become much more difficult in recent months because of an outspoken group of parents who pushed to end mandatory mask requirements in the Collinsville Community Unit School District.
Biondi, who teaches English at Collinsville High School, pleaded with the school board last month to keep the mask requirements in classrooms. She advocated for the district to at least have classrooms where students could opt in to wearing masks.
“Anything less denies my daughter her right to attend school and to have an education,” Biondi said to the school board during the Feb. 14 meeting. “What's worse is that it communicates that this community is comfortable with the risk of her life when it would be so easy for you to do something so small to protect her.”
The board voted at that meeting to lift the mask requirements, even though at the time the CDC recommended them. School officials cited low case counts and the need to mend a community divided on the matter.
“Unfortunately there is a divide completely throughout our country right now, as well as in our communities, whether masks should be required or [if] they should be recommended,” said Superintendent Mark Skertich after the vote.
Since then, the CDC has relaxed its masking guidance for K-12 schools. The federal agency now only recommends masking in areas with high rates of the virus spreading. It provides an online tool to view local transmission rates.
The conflict over masks in Collinsville schools came to a head while parents from 145 Illinois schools sued Gov. J.B. Pritzker over the state’s masking and quarantine policies. The Illinois Supreme Court declined to hear an appeal by Attorney General Kwame Raoul after a central Illinois judge blocked the governor’s statewide mask mandate.
The state Board of Education and Department of Public Health have said individual school districts can require students and staff to wear masks based on COVID-19 community levels or other factors.
Schools often fail to consider medically vulnerable students when they make coronavirus-related policies, said Cindy Klein-Webb, a pediatric developmental therapist who lives in the Collinsville district and has worked with disabled students for over 30 years.
“There was a lot of talk about students’ rights or parents’ rights, but this whole population of students have just been overlooked,” she said, adding that schools need to “ensure that risk-reduction strategies are included” in policies that cover disabled students.
Protecting students in schools
The U.S. Department of Education published guidance in September warning that some state and local policies may illegally hinder schools from meeting disabled students' needs. Districts that follow those policies instead of federal protections could face enforcement by the U.S. Department of Justice, the memo said.
A series of federal laws protect students with disabilities in schools.
A section in one of them, the Rehabilitation Act of 1973, requires schools to accommodate the disability needs of a student. Those accommodations, laid out in documents called 504 plans, could include requiring students, teachers and staff to wear masks while near an immunocompromised student.
A judge in the U.S. Court of Appeals Eighth Circuit, which includes Missouri, ruled earlier this year that schools can require masks to protect medically vulnerable students even when local or state policies say they’re not necessary. Another federal judge in Virginia reached a similar decision last week.
Federal legislation, including the Americans with Disabilities Act, requires schools to take reasonable measures to protect disabled students, said Thomas Kennedy, a leading civil rights attorney in St. Louis who has represented students with disabilities for nearly a half-century.
“Whether or not there is a mask mandate, even in situations when there's a mandate to not wear a mask, kids who are immunocompromised have a legal right to require mask-wearing for those who are closely associated with him or her.”Civil rights attorney Thomas Kennedy
He said another federal law — the Individuals with Disabilities Education Act — goes further to protect immunocompromised students like Lela by requiring school districts to provide free public education to kids with disabilities who need special help.
“Whether or not there is a mask mandate, even in situations when there's a mandate to not wear a mask, kids who are immunocompromised have a legal right to require mask-wearing for those who are closely associated with him or her,” he said.
Kennedy said he isn’t aware of any lawsuits seeking to force schools to require masking around disabled students in Illinois, where the Post family lives. That could be, in part, because the state was one of the last in the country to relax masking requirements in K-12 schools.
Klein-Webb, the developmental therapist, said parents have reached out to her throughout the pandemic, asking her how they can persuade schools to protect their disabled students.
“The first thing they can do is ask what protections will the school provide for their child?” she said.
Kennedy said that communication with schools is critical: “Once the district has knowledge that the kid is at risk of serious health issues and needs to have others wear masks around that kid, they must respond.”
Other parents respond
After the Collinsville school board voted to ditch mandatory masking, Post said Lela’s principal jumped to action.
“After the meeting adjourned, she immediately came to us and said I’m going to go call all of the parents right now,” he said, recalling the night. “She sprinted out of the auditorium and started calling every single parent.”
All of the parents with children in Lela’s class agreed to have them continue wearing masks in her classroom. Skertich said his district is continuing to take precautions to keep students and staff safe, including keeping rigorous cleaning protocols and strongly encouraging masking.
Biondi says her family is lucky to be part of a largely supportive community. But, she said not all parents of disabled children have that support.
“You know, for a lot of people, I think that they’ve given up and they feel like it’s over. I think as a parent it would be easy to feel that way,” she said. “I would say keep fighting. We got lucky but if things had gone differently, we would be fighting.”
Lela’s parents say they are happy they’ve been able to keep her safe so far. After all, their goal is to give their cheerful 6-year-old who loves to swing the most normal childhood possible.
Sarah Fentem, St. Louis Public Radio's health reporter, contributed to this story.
Brian Munoz is a staff photographer and multimedia reporter for St. Louis Public Radio. You can reach him by email at bmunoz@stlpr.org and follow his work on Instagram and Twitter at @brianmmunoz.
