One beautiful afternoon last summer, 9-year-old Maki climbed onto a trampoline behind his Northern Virginia home and began screaming like he had been shot.
Maki was suffering a breakdown in his ability to perceive reality. More than a dozen doctors and child psychiatrists later told his parents that they believed the months Maki spent learning at home last spring, away from daily school rituals and other children, contributed to his stunning deterioration. They said it was vital that he return to in-person school, full-time if possible.
Maki, whose parents spoke on the condition that his last name not be revealed to protect his privacy, was briefly hospitalized, then finally he went back into a classroom in November for several days a week. But for months, he was alone with a monitor, using an iPad to follow his teacher’s remote instruction. In the spring, more students returned and Maki was with them two days a week. This month, his time with other students increased and the teacher returned.
It’s still nothing like school as he knew it before. And although kids everywhere in America have seen their school days upended by the coronavirus pandemic, the break in routine is especially devastating for students like Maki, who often depend on structures and patterns for a secure sense of self.
More than a year after the pandemic began, officials in school districts across the country concede they failed during the crisis to deliver the quality of education that students with disabilities are legally entitled to receive. The consequences of this failure are likely to linger for years, if not decades, advocates and experts warn.
More than 7 million students are eligible for special educational services under the federal Individuals with Disabilities Education Act (IDEA). These children, each of whom follow an individualized education program that spells out what extra or different services they need at school, account for an estimated 14 percent of all U.S. schoolchildren.
While some thrived while learning from home during the pandemic — including a boy whose wheelchair left him feeling out of place at school but who became indistinguishable from his classmates on Zoom — most did not, and advocates and educators say many have suffered significant developmental setbacks.
The pandemic forced schools and districts to acknowledge ways they have long struggled to meet the needs of their most vulnerable students. It spurred school officials in some places to get creative in reaching students stuck at home, leading to the development of technology, tactics and techniques that will probably outlive the pandemic.
“Nobody’s got it perfect,” said Lauren Katzman, an associate research professor at Arizona State University and executive director of the Urban Special Education Leadership Collaborative, which works with city school districts. “But now there are places that are doing well and places that are set up to do well as it moves forward.”
When schools closed last spring, parents in all kinds of households had to take over the teaching of their children. But the burden fell especially heavy on those whose children have severe disabilities and require a menu of different therapies: speech, vision, physical, occupational.
“Being a parent and a teacher and a therapist and a clinician and a guidance counselor and a freaking cook and a janitorial staff member, it’s just not sustainable,” said Maki’s mother, Lisa, who quit her job as a physical trainer to manage the instruction of Maki and his 9-year-old sister, Bella, who has cerebral palsy. “We’re slowly dying on the inside.”
School officials knew that students with disabilities were struggling the most. So when they started to usher children back into the classroom, they put students with disabilities at the front of the line.
But progress was slow.
Health precautions meant time in-person was limited. Teachers and providers were not always willing to reenter classrooms. Sometimes, special-needs students had trouble wearing masks. In Meriden, Conn., where Education Secretary Miguel Cardona lived and taught elementary school, the school district — against the advice of the state — sent some children home because they couldn’t keep their masks on. The district had to reverse its policy after parents complained.
Frustrated mothers and fathers turned to the courts, filing lawsuits in states including Hawaii, Illinois, Pennsylvania and New York. The central allegation was the same: Children with disabilities are being denied the education they have a right to receive under federal law.
The Education Department began investigating the issue in late 2020 during the Trump administration, targeting large school systems such as the Indiana Department of Education, Seattle Public Schools, the Los Angeles Unified School District and Fairfax County Public Schools in Virginia. The department said Friday it could not comment on open cases.
Problems with special-education programs are nothing new. In 1975, Congress passed IDEA, the main federal law addressing the needs of students with disabilities. It requires school districts to deliver a “free appropriate public education” to all students with disabilities. It also stipulates that education must take place in the least restrictive environment possible, meaning special-needs children have maximal ability to interact with non-special-needs students.
When IDEA passed, the federal government pledged to pay 40 percent of the average cost of education for students with disabilities every year. It has never come close. In fiscal year 2020, it provided just over 13 percent of what was promised, giving states $12.8 billion.
President Biden promised to put the federal government on a years-long path to finally reaching its 40 percent target, and he is proposing in his 2022 budget a $2.6 billion boost in funding for special education over the course of 2021, bringing the federal total to $15.6 billion. In the American Rescue Plan Act passed by Congress in March, Biden sought and won an additional one-time $3 billion boost for IDEA so districts can help special-education students recover from the pandemic.
But the issues go beyond funding; schools almost never have enough special-education teachers. The federal government says the national shortage is at 8 percent, but it’s more acute than that in some states. In Michigan, State Superintendent Michael Rice recently said there is “a critical” shortage of these teachers.
The lack of trained special-education teachers has led many districts to hire people who aren’t credentialed in the field. In California, the Commission on Teacher Credentialing reported that in the 2017-18 school year, only about 38 percent of new special-education teachers were credentialed.
“As a result, students with disabilities who often have the greatest needs are frequently taught by the least qualified teachers,” concluded a 2020 report by the California-based Learning Policy Institute, a nonprofit think tank.
Schools also frequently are short of speech pathologists who coach special-needs children struggling to talk, and occupational and physical therapists who work with children struggling to walk or move around. The problem worsened during the pandemic, when these workers could not go into students’ homes to do their jobs.
Some districts were able to offer some of these special services online. But many are impossible to replicate in the virtual world.
Moet Archer, who works as a special-education consultant in Atlanta, had gone to work in person with some of the students she serves during the pandemic — but that meant the 42-year-old single mother had to leave her two teenage daughters with disabilities to learn alone at home, unsupervised.
Alaya Manning, 15, is autistic, and her speech and language skills are impaired; Aryanna Manning, 14, has a hearing impairment. For a long time, school meant sitting on sofas in their living room while they stared into school-provided computers perched on TV trays.
The girls felt isolated and scared, and learned little if anything, both said. Aryanna said she stopped speaking in online class because kids laughed at her for asking “easy” questions.
The teenagers returned to school in person part-time this spring, and Archer’s boyfriend is now supervising them on the days they learn virtually, fielding their questions and prodding them to complete assignments.
Yet the girls have regressed, their mom said. At times, Alaya responds to questions by grunting — a habit she had almost kicked pre-pandemic. Aryanna has lost math skills and is forgetting simple things, such as the days of the month, Archer said.
Both girls’ grades have plummeted. They say they hate school now.
“I don’t think I ever had anxiety but now I do,” said Aryanna, who sometimes becomes convinced her body is shaking when it is motionless. “I don’t think they should count grades against us this year.”
While most districts struggled to help students with disabilities, some adapted, including Wisconsin’s Sun Prairie Area School District. The district has 8,400 students — 1,333 of them are diagnosed with disabilities including autism, traumatic brain injuries and vision impairments.
The special-education director, Jennifer Apodaca, said staff members revamped individualized learning plans for every student with disabilities so they could learn effectively in the virtual world. They created how-to videos for parents and caregivers and met regularly with them — online — to offer advice on how to support their child.
“We have learned the importance of technology literacy for every single student, no matter how significant their impairment,” she said, noting that students with all kinds of disabilities have become proficient with online tools.
Special-education and classroom teachers started co-planning lessons, and for the 2020-2021 year, the district created student-support hubs: teams of people at every school site that address children’s academic and personal needs, starting with the most vulnerable kids.
“We have learned to do incredible things within our circumstances,” Apodaca said.
Virtual school benefited some students with disabilities. For those with anxiety or attention-deficit disorders, learning from home removed distractions, enabling unprecedented academic excellence, advocates said.
Online learning allowed others to transform socially.
Ryan Desai in Loudoun County, Va., had always stood out in school. He was born with a rare bone disease that makes his hands stiff and swollen, locks his major joints in a bent position and erodes his bone density over time.
The 9-year-old traveled his school’s hallways in a motorized wheelchair — and encountered uncountable barriers to inclusion. When other children sat on the floor for circle time, he had to remain lofted above them in his wheelchair.
But in virtual school, Ryan became just another face on the screen.
“He feels like he’s part of the class,” said his mother, Bobbi Desai. “It was something I would never have foreseen.”
Last September, Ryan donned a button-down shirt and wheeled himself in front of his family’s fireplace. He faced a camera, took a deep breath and began:
“Hello everyone, it is good to be here. I am Ryan Desai. ... I would like to be your president.”
He was running, he said, because he wanted to help everyone succeed at virtual learning, and to “love everyone more.” He promised to deliver longer breaks and more learning games.
When the votes came in, Ryan was elected class president.
In Arlington, Va., Maki’s parents still worry about his future.
The doctors warned that the longer Maki is stuck with the pandemic’s version of school, the more lasting damage he is likely to suffer.
Maki continues to hallucinate and babble about his favorite football players, or a scene from a Batman movie, said Reed, his father. The chatter is a verbal form of “stimming,” something some children on the autism spectrum do when they feel stressed. It calms Maki down.
He’s in school with other students four days a week now, and the school is trying to reduce his iPad time. At a meeting this month, his teachers told them that he had fallen a year behind in his reading skills during the pandemic.
But what Reed said replays in his mind is a scene the day before Maki’s ninth birthday in November. He had just finished giving his son a bath. Maki stared into the distance, looking at nothing, as his father wrapped him in a towel. He said: “Daddy, can I die for my birthday?”
Not all days are bad. On a recent, better one, Lisa tried to bring her son’s attention back to his schoolwork. Standing in the family’s kitchen, she asked him to mimic her as she extended both arms all the way out and brought them back in, one by one, to touch her nose.
“It’s overwhelming,” Maki told his mother. She nodded. “It’s hard,” he said, and she nodded again.
But he bent over a math worksheet — and got all his subtraction problems right.
Photo editing by Mark Miller. Copy editing by Melissa Ngo. Design by J.C. Reed.