It’s morning and Sarah Jones is hungry. “Yogurt,” she tells her mother.
That’s not good.
Back in March, the 4-year-old’s language skills were coming along relatively well. When she was hungry, she could turn to Anne Marie Jones and say, “Mommy, I want yogurt for breakfast.”
Back in March, Sarah was learning and receiving therapy in a classroom setting.
Sarah has autism, and like other children with special needs, the lack of in-person schooling due to campus closures caused by the COVID-19 pandemic is erasing the skills that have taken her so long to learn. Though the absence of classroom learning has affected children at all levels, parents and advocates say those with disabilities are more at risk and more acutely feeling the effects, with remote learning impeding the quality of their federally guaranteed education.
“I think for a lot of families, remote learning has been difficult. I think that a lot of parents feel as though they’ve become both the teacher and the related service provider,” said Darlene Hemerka, a staff attorney focused on special education at the Public Interest Law Center. “So, if the student gets occupational therapy or physical therapy or anything like that – they feel as if they’re also doing that and obviously trying to be a parent. If they’re working from home, trying to do that, as well.”
Despite being a former special ed teacher herself, Jones has certainly felt the new stresses of remote learning. At times, it looks as if she might cry as she recounts the last few months.
Before March, Sarah was going to school three days a week. She was receiving speech, occupational and behavioral therapy, at times in her own home. It wasn’t always, “the best,” when she was at school, her mother conceded, but she was coming back home and could string some words together into full sentences. She talked about having fun with her friends.
But everything changed when the pandemic hit the United States.
When Sarah’s school first went virtual, it was hard to keep her focused. Sarah would run around the house. She’d fight with her 7-year-old sister. She couldn’t focus on virtual classes, some of which were an hour long. In the end, the family had to opt her out of the virtual classroom.
For the fall, the family planned to enroll Sarah in a private school which allowed in-person classes. But the school requires masks, which Sarah can’t tolerate due to her autism, and now they’re back to online learning.
“Right now, we’re seeing so much regression because we haven’t had anything. Every milestone that we made has basically stopped,” Jones said.
It’s not easy taking on the role of mother, caretaker and therapist. It’s not easy seeing Sarah go from being able to fully recite all 26 letters of the alphabet to maybe getting half.
For Jones, the answer is clear: parents should have the option of sending their kids to the classroom.
For children with disabilities enrolled in public schools, a quality education is federally guaranteed – and mandated. Each year, those students receive an Individual Education Program, or IEP, which generally sets out the educational and developmental goals for the child for that particular school year.
To ensure that students are making progress, they’re supposed to get quarterly progress monitoring, which may be done by observation and by trials, such as having a student perform an activity multiple times and see how he or she does, Hemerka said.
But the pandemic abruptly upended those plans as school districts were forced to scramble and close while also trying to figure out how to get students online. In the middle of that chaos, students with disabilities were often the ones who suffered most.
“A lot of the progress monitoring didn’t happen and that’s concerning because then, without that data, it’s hard to tell how much a student really either lost or gained during this remote learning period,” Hemerka said.
That’s critical information to know because it can take much longer for students with disabilities to regain the skills they’ve lost. In the School District of Philadelphia, Superintendent William Hite said the district is updating all the IEPs for students and exploring whether some children can get in-person support at certain locations, including possibly at schools.
But that’s still a work in progress, meaning special needs kids have to continue waiting.
“There’s a real risk that these students that are already typically behind their general ed peers in a lot of ways just fall further behind," Hermerka said.
She and the Public Interest Law Center favor in-person classes for at least some students with disabilities. But that solution isn’t so simple, and it’s fraught with its own challenges, including the risk of infection.
The Centers for Disease Control and Prevention says children infected with COVID-19 may have less severe symptoms than adults, but while deaths are rarer among children, they’re not unheard of.
In Miami, an 11-year-old boy died from the virus at the end of June. That boy, Daequan Wimberly, also had special needs.
“We do know that individuals with intellectual disabilities and developmental disabilities have a variety of comorbidities that are associated with their diagnoses,” said Shane Janick, executive director of the Arc of Philadelphia, which advocates for people with disabilities.
Those comorbidities can make them more likely to succumb to COVID-19, should they get infected. That risk, as well as the risk of teachers and administrators getting infected, has prompted most schools in Philadelphia and the surrounding suburbs, including the School District of Philadelphia, to opt for remote learning this fall.
Janick’s group is focused on providing help for families and is not taking sides on the debate about whether or not students should be back in the classroom, but he does warn that parents should be aware of the risk associated with in-person schooling during a pandemic.
It’s at the forefront of Tracy Hearst-Purdy’s mind. Her 9-year-old son, Bryce, has Down syndrome and autism.
Bryce is in an eight-student classroom, so social distancing may not be that difficult to enforce, Hearst-Purdy said. However, mask-wearing could prove more challenging.
Like Sara, the 4-year-old, Bryce has sensory issues that make him uncomfortable when wearing a mask. Bryce won’t even wear hats, nor will he go outside in the rain due to the feeling of the raindrops falling on his skin. Asking him to wear a mask for an entire school day seems impossible.
“The fact that he even wears the mask when we go out is just amazing, but he doesn’t wear it for long, extended periods of time. So wearing it at school all day – he’s not going to, and so that creates a problem,” Hearst-Purdy said.
Then there’s also the fact that Bryce is just a gregarious kid. During a video interview, he holds his mother around the neck and repeatedly kisses her. At school, he’s almost just as friendly.
Back when he was going in person, Bryce used to “make the rounds,” as soon as he walked into school, Hearst-Purdy said. That involved hugging the vice principal, then the secretary, then the gym teacher, followed by the art teacher and on and on until he got to his classroom, where he made sure to also hug his own teacher.
In the classroom, Bryce was surrounded by friends he’s known since kindergarten, and they were all encouraged to engage with each other as they learned lessons like sharing and taking turns. Bryce in particular took pride in picking up and handing out homework folders to and from his friends.
A change to that routine and to his surroundings could be jarring, Hearst-Purdy noted.
“He wants to be engaged, so if you’re telling him, ‘No, Bryce, you have to stay right here in this square, don’t touch this kid, don’t touch this kid,’ they’re not going to be happy campers,” she said.
There are trade-offs to keeping students at home, though.
Hemerka noted the wide array of services provided to children in the classroom. There, students may learn life skills like how to make their bed or fold laundry. Blind students may be taken out of the classroom and onto the streets to learn to navigate the world with their canes. Students with musculoskeletal disabilities may receive physical therapy.
Some parents may be able to try and replicate these things at home, Hemerka said, but they’re ultimately not trained professionals, meaning their children may not be receiving the federally guaranteed quality education that they’re entitled to.
Marrie Pierre is another parent struggling to make sure her child, Mark, doesn’t fall too far behind.
Before the pandemic, the 9-year-old was receiving speech therapy for an impediment that was also affecting his ability to read and write. Though he was in a mainstreamed classroom, he was routinely pulled out to receive the crucial speech therapy.
Now, Pierre has had to try and replicate that at home.
“It’s been a struggle and very challenging because I had to then provide the services for him, but I’m not a speech therapist,” she said.
The online classes weren’t ideal, either. Whereas a short lag in a video call might be a minor inconvenience to a lot of people, internet connectivity issues for Mark could be the difference between him properly learning a word or not.
For Pierre, it’s clear that in-person learning would be best for Mark, especially given that he doesn’t have an underlying condition that could make him more susceptible to COVID-19.
However, she also understands that some teachers might not be comfortable returning to class. She herself recently began teaching in the School District of Philadelphia and has had to weigh the risks, both as a parent and as a teacher.
“As a parent, I don’t want any harm to come to my child, knowing that I sent my child to an environment that, when they come back, they may not come back as a whole … As a teacher, I care for any student that I’m going to be in front of, and would want the best for them just like my own children. I would never want to put them in harm’s way or harm them,” Pierre said.
Similarly, Hearst-Purdy finds herself weighing the risks vs. rewards of in-person schooling, and she still doesn’t know if she’d send Bryce back to the classroom if given the choice, though she seems to prefer to play it safe – at home.
“When you’re looking at a situation that could potentially be life and death, then nothing’s more important than someone’s life, and we can deal with the school stuff, but I can’t deal with knowing that somebody got sick in his classroom or something like that,” she said. “That’s something you don’t come back from.”