When Simon’s school in Maryland closed this spring due to the pandemic, his family didn’t know what to expect.
“Like every family who has a kid in school, there was a lot of uncertainty,” Simon’s mom, Laura LeBrun Hatcher, told Vox. “Everybody was in a ‘what’s going to happen’ moment.”
But for Simon, that uncertainty also included what would happen to the one-on-one support that he needs to learn effectively, as well as the occupational and physical therapy he gets at school. Simon, who just turned 14, has complex medical needs and disabilities, including hydrocephalus, epilepsy, and autism. As the director of design and communications for the group Little Lobbyists, which works on behalf of kids with disabilities, Hatcher has been involved in advocacy for a long time. But, she said, “I’m not a trained therapist” — and providing everything at home that Simon used to get at school has been very challenging.
While Simon’s school has “been great in trying to walk us through stuff and do things remotely, the quality of the therapy is just not there,” Hatcher said. And “Simon’s attention just isn’t there for it,” she added. “He’s not in the environment that he is used to, where he has the structure that he’s used to.”
And compared with other kids with disabilities around the country, “Simon was one of the lucky ones,” Hatcher said.
When schools closed their physical buildings due to the pandemic, some made an effort to continue the services and therapies that help students with disabilities access their education — even if those services had to be remote. But other schools did little or nothing to continue such services. In a survey released in May by the organization ParentsTogether, just one in five families of children in special education said they were receiving all the support services their kids were entitled to. Four in 10 said their kids were getting no support at all.
For a lot of families of kids with disabilities, virtual learning this spring “meant nothing,” Maria Hernandez, executive director of the nonprofit VELA, which helps parents in the Austin, Texas, area navigate special education for their kids, told Vox. “It meant one phone call; it meant one packet.”
And now, parents worry about a fall with more of the same uncertainty over whether schools will be able to provide from a distance the resources their kids need. At the same time, some students with disabilities also have underlying conditions and complex medical needs that make the physical reopening of schools a frightening prospect.
“No one has the answer,” Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress and a parent of children with disabilities, told Vox. But one thing many advocates agree on is the need for more funding so that schools have the resources to teach all students during the pandemic and beyond. “We really need to see Congress invest additional funds to help shore up what education looks like for our kids,” Cokley said.
Education is a civil right for all students. But many kids with disabilities weren’t receiving it this spring.
Under the Rehabilitation Act of 1973 as well as the Individuals with Disabilities in Education Act (IDEA), all students are legally entitled to what’s called a free appropriate public education (FAPE for short). For kids with disabilities, that can include services like speech or behavioral therapy, or a one-to-one aide to support them in the classroom.
“Those are not optional things,” Cokley said. “They’re not nice things to do. They’re fundamental civil rights.”
But this year, as schools closed their physical buildings due to the pandemic, they’ve had to figure out what a free appropriate public education looks like in a time of Covid-19, she said.
Their responses have varied widely. For the families VELA serves, the majority of whom are low-income, “the greatest challenge that we saw was therapy services,” Hernandez said.
Many families can’t afford private therapy, and the services their kids get through school are often the only ones they receive. But when schools closed, a lot of those services stopped — some kids who were getting therapy once or twice a week received it just a few times over the entire spring, Hernandez said.
And receiving therapy remotely presented a lot of challenges. In some cases, parents were given a video to watch, instructing them on how to provide therapies themselves — but this required a lot from parents in terms of replicating the instructions on their own. In other cases, students did get some real-time remote therapy, but it required parents to get together a wide array of materials, find a quiet spot in their home, and then guide the child through every step of the therapy. “It was either, ‘Watch this video on your own time,’ which probably didn’t give any benefit to the child, or, ‘You need three hours to get ready for a 30-minute therapy session,’” Hernandez said. “Neither one worked.”
Meanwhile, when it came to academics, the strategies that might have been workable for some students in general education classrooms simply weren’t possible for many families with children in special education. A packet of exercises or a pre-recorded video lesson can be an effective teaching tool “when you’re a student that has the ability to just self-pace and learn on your own,” Hernandez said. “When you’re a student that requires specific accommodations to be successful, and your parents are stressed and moving through life in Covid, the reality of that packet being completed or even looked at is really small.”
And parents of students with disabilities have been asked to take on the roles not just of teachers but of the aides and other support professionals who ordinarily help their children learn — and who, unlike parents, have the training to do so.
For Sammy, who goes to school with Simon in Maryland, the shift to remote speech and language therapy, occupational therapy, and counseling was relatively seamless, his mom Daya Chaney Webb told Vox. But managing the academic coursework was a different story. At school, teachers and staff are constantly pivoting to meet the individual needs of students, Webb said. Online, that’s much harder. And Sammy has a one-to-one support professional at school. At home, that’s Webb.
“It’s very much hand over hand,” with Webb helping Sammy do things like open tabs on his laptop browser, she said. “This is me working next to him for every moment of instruction.”
For Sammy, who is going into 11th grade in the fall, the shift online has been a mixed bag. It’s “easier to pay attention from home, so I don’t need so many breaks,” he told Vox. But, he said, he misses seeing his friends in person.
“I hope I can go back to school-school, he said. “I feel like I try harder in school.”
Academics have been a challenge for Simon, too, Hatcher said. Like Sammy, he usually has a one-to-one aide at school, and while he’s been able to connect with her remotely, she’s no longer by his side helping him stay on task. Instead, “we’ll have an online video of a book, and then a Google sheet where it’s reading comprehension questions,” Hatcher said. “That is not the same as being in a classroom with a special education teacher or even a general education teacher who’s able to really make sure that those kids are getting the information they need.”
The result: “For kids like Simon who really do need that level of support, we’re not just worried about him not moving forward, we’re worried about his regression,” Hatcher said.
It’s a common concern among parents of kids with disabilities, who are disproportionately likely to say that their kids’ schooling has stalled during the pandemic. In the ParentsTogether survey, 35 percent of parents of students in special education said their kids were doing little to no remote learning, compared to 17 percent of families with kids in general education classes.
Overall, when it comes to providing the services students with disabilities need to access a fair education, “we’ve really seen it fall flat,” Cokley said. “I have yet to hear any parents with kids with disabilities say, ‘My kid got as close as possible to regular services and support in this time.’”
The Trump administration made the situation worse
Making matters worse were confusing messages from the federal government at the beginning of the pandemic.
On March 12, as schools around the country were considering or announcing closures, the Department of Education under Secretary Betsy DeVos released guidance stating that if a district “closes its schools to slow or stop the spread of COVID-19, and does not provide any educational services to the general student population,” then the district “would not be required to provide services to students with disabilities during that same period of time.”
Some districts responded by doing just that — shutting down education for all students in both general and special education classes, taking the attitude that “if we have to provide services equitably we just won’t provide anything,” Denise Marshall, CEO of the Council of Parent Attorneys and Advocates, a group that advocates for the civil rights of students with disabilities, told Vox. In some cases, districts refused to retrieve equipment students with disabilities needed from school buildings, like an eye-gaze machine some students use for communication, arguing that “we are not providing services to anyone in person, and that constitutes in-person,” Marshall explained.
Advocates were highly concerned, arguing that the pandemic did nothing to release schools from their legal responsibility to educate kids with disabilities. “There’s nothing in the law that provides any kind of waiver for the obligation to provide FAPE in this kind of circumstance, or really in any circumstance,” Marshall said.
On March 21, the Education Department issued a clarification telling districts that “they should not opt to close or decline to provide distance instruction, at the expense of students, to address matters pertaining to services for students with disabilities.” The clarification also stated that “school districts must provide a free and appropriate public education (FAPE) consistent with the need to protect the health and safety of students with disabilities.”
Still, the initial guidance “caused delay, it caused confusion, and it contributed to the inequities, and the wild variations in terms of provision of services,” Marshall said.
Families and advocates are worried about what the fall will bring
Many fear those inequities will only widen this fall, as schools around the country cope with a still-raging — and, in some places, worsening — pandemic.
With little federal leadership on the issue — or on battling the pandemic more generally — state and local officials have largely been left to face the challenges of education during Covid-19 on their own. And, as with general education, schools and districts in high-income areas have often been able to provide better services to students with disabilities than those in lower-income places. For one thing, “schools that are already taxed financially don’t have as high level of technology to be able to give to their students to bring home,” Cokley said. And for schools already struggling to provide therapy and other supports to students remotely, a lack of adequate technology only compounds the problem.
Moreover, getting adequate services for children with disabilities can require significant parent advocacy — something that’s difficult for low-income working parents even in the best of times, especially if they speak English as a second language. But during the pandemic, with kids at home and school meetings taking place over giant Zoom calls, it’s become even harder, Hernandez said. “We know how intimidating those settings can be, but now we’ll have this other lens of a parent sitting on their phone in the closet.”
As a result, special education services, at least in Austin, tend to vary from school to school, depending on where parents have the time and resources to push for them, Hernandez said. “What tends to happen very often is the advocacy and the resources stay attached to a campus, versus a district-wide initiative.”
And while there’s been a lot of coverage of middle- and upper-class families exploring learning “pods” for the fall — small groups of students that meet in person while schools are closed — many fear that those won’t be accessible to students with disabilities either.
For students who are able to join pods, “they’ll be with other kids, it’s awesome,” Hernandez said. But for kids who aren’t able to be part of a pod — because of their disability status, because they don’t speak English fluently, because their parents can’t afford the cost, or all of the above — “we think of the further isolation that’s going to be happening.”
Making education accessible to students with disabilities will take money — and representation
As with general education, solutions to provide special education during a pandemic are complex, to say the least.
While some pediatricians and other experts have pushed to get kids back in school as soon as possible in order to mitigate the academic and social losses associated with online learning, some students with disabilities have underlying conditions that make going to school during a pandemic especially risky for them. Simon, for example, has neurological issues, asthma, and cerebral palsy, which could potentially put him at higher risk. “We have families who are just very, very afraid of their children becoming sick and dying,” Hatcher said. “I’ll take regression over losing Simon.”
At the same time, some kids have behavioral and other needs that are met much better in the structured environment of school. Being home with swaths of unscheduled time, away from their routines and the supports they are used to, “is incredibly stressful for the children and their parents,” Hatcher said. “I see a lot of parents who are really stuck between that rock and a hard place of wanting to protect their children’s health but also knowing how bad this is and how destructive this is for their children’s emotional health.”
There are no easy answers to any of this, but there are changes that could help. For example, districts could examine whether it’s safe for therapists and one-to-one support professionals to make home visits to students while school buildings are closed. “If we had the resources to make that happen and do that safely, I think a lot of kids would benefit,” Hatcher said. Some areas of the country are also considering allowing students with disabilities to come to school in person even if the school year starts remotely for others. Officials in Washington State, for example, recommended this week that schools in high-risk counties remain closed except for students with disabilities and others with the highest need.
As always, though, resources are key. To ensure equitable education for kids with disabilities during the pandemic and beyond, Congress needs to provide more funding for programs and services under the Individuals with Disabilities Education Act (IDEA), Cokley said. Better funding would help ensure that schools and the families they serve have adequate technology for kids to continue their classes and therapies remotely, as well as training more teachers in special education. Districts also need an adequate staff of therapists and aides to provide services in person if and when it’s possible — and that staff needs access to personal protective equipment and paid family and sick leave, Cokley said.
Additional funding is especially crucial now, as more children will likely need special education services due to the physical and emotional effects of Covid-19, Cokley added. But so far, Congress has included no additional funding for IDEA in its relief packages. “More kids are becoming disabled and no one is providing funding for it,” she said.
Beyond money, schools and districts also need clear leadership from the top, many say. COPAA has asked the Education Department to provide guidance on schools’ responsibilities if their buildings are open but families choose to keep kids with disabilities home out of concern over the virus, Marshall said. The group is very worried that if schools do reopen physically, they may not provide the necessary services to kids who still need to be home. So far, DeVos — who has spent much of the summer pressing schools to reopen even as coronavirus cases rise — has not offered such guidance.
And in all conversations about education during the pandemic, representation for students with disabilities is critical, Hernandez said. The voices of students with disabilities and their families — especially if those families are also low-income, people of color, or speak English as a second language — have often been overlooked in meetings about school plans, especially when those meetings themselves take place remotely. On a local level, “we’re missing somebody that in every single meeting is saying, ‘Right, and what would that look like for special education?’” Hernandez said. “Just that would be incredibly meaningful.”
But so far, “special ed has been kind of a last thought in all this reentry stuff,” Webb said. “It reinforces the way that a lot of families that support disabilities within feel kind of like society’s disposables.”
Instead, “people should be treated equally,” Sammy said, “never judging by the color of their skin or their ability level.”