Samantha Boevers’s 4-year-old son, Porter, has made so much progress since being diagnosed with autism that he was assigned to a general preschool classroom this fall. So when Boevers dropped him off for his first day of school earlier this week, she wanted to feel all the emotions a parent should in that moment: excitement, pride, relief.
“The only thing I felt was heart-rending fear,” said Boevers, an instructional aide with a background in special education. “Because I didn’t know if he’d be safe.”
Porter’s disability puts him at heightened risk of getting sick from COVID-19. Mitigation strategies such as universal masking indoors, Boevers says, are critical to limiting that risk.
Yet Boevers and her family live in South Carolina – one of more than half a dozen states where schools are prohibited from requiring everyone on campus to mask up. Mask-wearing has been the exception rather than the rule in many of South Carolina’s school districts, and evidence suggests the trend has taken a toll. South Carolina has the third-highest rate of pediatric COVID-19 infections in the U.S., according to data collected by the American Academy of Pediatrics, with children accounting for roughly a fifth of the state’s positive cases.
With the help of the American Civil Liberties Union, Boevers and other parents and advocates recently filed suit in federal court challenging South Carolina’s ban on school mask mandates. The lawsuit, which names several state officials and local school boards as defendants, alleges South Carolina’s policy violates federal law by effectively excluding students with disabilities from participation in the public education system.
It’s one of at least seven lawsuits filed in recent weeks in states with similar restrictions – including Arizona, Florida and Texas – many saying the rules violate the rights of students with disabilities. In one of the Florida suits, a circuit court judge has already issued a ruling, concluding the state’s order banning school mask mandates is unlawful and districts have the right to set their own policies.
The litigation comes amid a surge in pediatric COVID-19 cases largely thanks to the delta variant. And while the bans on mask mandates put all students at risk, parents and advocates argue they’re especially harmful to hundreds of thousands of students with disabilities that put them at greater risk of severe COVID-related illness and death.
“Children with disabilities are entitled to learn and interact with all other children, to receive the same education as all other children, and to be returned home as safe and healthy as possible,” the ACLU lawsuit reads, echoing arguments being made by plaintiffs in the other states.
“We are left right now, as parents of a child with a disability, having to make the agonizing decision of choosing between his education … and his health,” Boevers said. “And that’s a decision no parent should ever have to make.”
Which students missed class during COVID? We asked. And schools don’t know.
‘A slap in the face’
Remote learning was tough for all kinds of students last year, but for Porter it wasn’t just challenging – it was “physically painful,” Boevers said. Porter, who struggles with communication, would get so frustrated with virtual speech and occupational therapy sessions that he’d screech and scream, sometimes hitting his parents.
Still, he worked hard and got better at using sentences, to the point that he can now learn alongside his neurotypical peers. He can continue making progress by being in that classroom, Boevers said. If he were to stick with virtual learning, he’d “revert back to a child who doesn’t have a future.”
She and her husband consulted with Porter’s pediatrician when deliberating whether to send him to in-person school this year. In 2019, Porter ended up being hospitalized for the flu because he hadn’t been able to communicate that he was in pain. Confused and scared by what was happening to him, he’d even stopped eating and drinking. Boevers held back tears as she reflected on the experience, on the memory of witnessing three grown men holding Porter down so they could get the IV tube in.
The doctor said the same thing could happen again if Porter were to contract the coronavirus, especially because he also struggles to comply with hygiene practices. Porter should only attend school, the pediatrician concluded, if anyone on campus who can wear a mask does so.
“I’ve seen people say the parents of children under 12 are living a different pandemic than everyone else because these children cannot be vaccinated,” Boevers said. “And I like to say, ‘The parents of special-needs children under 12 are living in hell during this pandemic,’ because every day we worry about the safety of our children when doing the basic things that every child has a right to do.”
South Carolina’s ban comes in the form of a budget provision passed earlier this summer that prohibits districts from using state money to require masks. The plaintiffs – which include parents of children with conditions ranging from asthma to anxiety – allege that provision violates two federal laws: the Americans With Disabilities Act and the Rehabilitation Act.
Those laws prohibit public schools from excluding or segregating students with disabilities. They also require schools to make “reasonable accommodations” so students with disabilities have just as much an opportunity as their peers to get a receive a good education.
South Carolina’s anti-mask law is excluding and segregating them, the plaintiffs allege, by forcing many of them to withdraw from public school. And in prohibiting schools from dictating their own mask rules, the complaint continues, the law also denies those children an equal education.
“It’s really a slap in the face to students with disabilities,” said Susan Mizner, director of the ACLU’s Disability Rights Program. “Because while there is a risk to everyone, … we know that the people who will get severely ill are almost always the students who have these underlying conditions or disabilities.”
Roughly 13% – more than 101,000 – of South Carolina’s public-school students receive special-education services, about 16,000 of whom are identified as “other health impaired.” Another 10,000 or so of the state’s special-ed students have autism, while some 6,000 have an intellectual disability.
Notably, a study of more than 65 million patients across 500 health-care systems found that people with intellectual disabilities are more likely to die from COVID-19 than people with conditions such as congestive heart failure and kidney disease.
In response to the lawsuit, Ryan Brown, a spokesperson for South Carolina’s Department of Education, said the state department has reminded school districts of their obligations under federal disability-rights law. Schools should consider mandating masks for some people who are in contact with certain high-risk students, he said, citing guidance from both the Centers for Disease Control and Prevention and the state’s health department.
South Carolina’s schools superintendent, who’s named as a defendant in the suit, “has been clear in her support” of districts’ right to set their own mask rules, Brown said. And, he said, parents have the option of reverting to distance learning if they decide in-person instruction is too risky.
Families have little recourse
In some parts of the country, however, distance learning isn’t an option this school year. In fact, according to an analysis by the Center on Reinventing Public Education, a University of Washington research group, three of the states with restrictions on mask requirements have passed legislation or policies limiting access to virtual schooling.
Those states include Tennessee, whose policy, enacted in April, prohibits districts from offering system-wide remote or hybrid instruction unless there is a declared state of emergency.
Tennessee’s limitation – combined with the state’s executive order requiring schools to allow mask opt-outs – forces parents to choose between jeopardizing their children’s health or withdrawing them from public education altogether, several parents of students with disabilities told USA TODAY.
One of those parents is Suzanne Talleur, whose 16-year-old son, Max, has Down syndrome. Research shows that, compared with the general population, people with the condition are four times more likely to be hospitalized – and 10 times more likely to die – after contracting COVID-19. That’s in part because they tend to have smaller airways and weaker muscle tone than average, which makes them more vulnerable to respiratory complications.
Talleur kept Max, who also has asthma and a heart condition, in remote-only instruction all last school year; he barely left the house. When she was asked in February whether he’d continue with online learning this school year, though, she decided it was time for him to return to the classroom.
“It was terrifying sending him back,” Talleur said, but she was optimistic about the power of COVID-19 vaccines, which her son received as soon as he was eligible. She was confident his school district would do what it could to mitigate the spread of COVID-19 by following CDC guidance.
Of course, Tennessee’s recent executive order prevents the state’s schools from practicing a critical piece of that guidance: universal mask-wearing indoors. And unlike the other states with restrictions on school mask mandates, Tennessee’s policy simply stipulates schools must allow parents to opt-out of any such requirements, which could make it hard to challenge on legal grounds.
“The Governor has said that parents should ultimately be able to decide what’s best for their children,” said Brian Blackney, a spokesperson for Tennessee’s education department.
Talleur now finds herself “in a pretty awful position,” especially because she couldn’t put Max in distance learning anytime soon, even if she wanted to. Like South Carolina, Tennessee has one of the highest rates of pediatric COVID cases in the country.
Earlier this month, shortly after the school year began, a handful of students in Max’s special-needs classroom became infected with COVID-19. According to Talleur, few of the children had been wearing masks. Her son ended up having to stay home for three days. He did little more than a math worksheet and a five-line journal entry.
While he ultimately tested negative for the virus, Talleur says the cluster – which she attributes to lax mask rules – effectively deprived her son of the education he was entitled to receive. If masks had been required of anyone able to wear one, Talleur said, her son wouldn’t have had to go into isolation and miss hours of class time.
“We’re not asking for perfection,” she said. “We’re asking for reasonable accommodations – and (mask requirements) are the definition of ‘reasonable accommodation.’”
Kim Hart, a Nashville-area epidemiologist whose 18-year-son also has Down syndrome, says she’s in an awful position, too. Hart’s son is vaccinated against COVID-19. But his risk of contracting a breakthrough infection is high, Hart says, considering he got chicken pox when he was younger despite having gotten that vaccine.
“He wants to be at school and needs to be at school. He loves his friends – he’s a social 18-year-old,” Hart said. Plus, he’s now enrolled in a vocational-education program that necessitates hands-on learning. “We are taking a risk that he is going to become ill, and the consequences for him could be devastating.”
The need for accommodations
Many students with disabilities simply can’t mask up. They may have a breathing issue or physical abnormality. Perhaps they have a behavioral disorder and get agitated or anxious when wearing a face covering.
For that reason, the U.S. Department of Education issued guidance last September emphasizing schools should exempt such students from any universal mask requirements. Failing to offer such exemptions, the guidance suggested, could amount to discrimination on the basis of disability.
By the same token, schools should be able to require anyone who can wear a mask to do so, said Wendy Tucker, the senior director of policy at the Center for Learner Equity, which advocates for students with disabilities. That would allow those who can’t wear a mask to continue receiving an education, she said.
Legality aside, Tucker says the statewide bans are at the very least “bad policy.” The pandemic is playing out in different ways across the country – even within a given state, COVID-19 transmission and vaccination rates vary depending on the locale. To institute a blanket ban on mask mandates disregards the needs of individual school districts, Tucker said.
Back in South Carolina, Boevers says there’s a 50-50 chance she’ll end up pulling Porter out of in-person learning. And the prospect is tormenting her.
“Right now, his future is wide open – he is the absolute definition, as is every special education child in the state, of different not less,” she said. “When you take that classroom away, … he loses it all, and everything he loses will take him twice as long to gain back as another child.”
Contact Alia Wong at (202) 507-2256 or [email protected]. Follow her on Twitter at @aliaemily.