Roughly 7 million children in the U.S. receive special education services under a decades-old federal law — or did, until the pandemic began. Many of those services slowed or stopped when schools physically shut down in spring 2020. Modified instruction, behavioral counseling, and speech and physical therapy disappeared or were feebly reproduced online, for three, six, nine months. In some places, they have yet to fully resume. For many children with disabilities, families say this disruption wasn't just difficult. It was devastating.
Kate Maglothin in Waterford, Mich., says for her and her 7-year-old son, Finn, learning from home without extra support was "mentally and physically and emotionally draining."
"I just watched my child not learning and going backwards," remembers Rachael Berg, a mother in Anne Arundel County, Md., whose 6-year-old daughter, Maddie, has an intellectual disability and attention deficit disorder. "I'm just sad for her."
"I feel like they probably despise me by now," says Timothy Largo of his grandson's school in Crownpoint, N.M. Largo filed a special education complaint to compel the school to make up for services the sixth-grader did not receive during the pandemic.
"It's not fair," says Chrystal Bell, a mother in New York City whose son, Caleb, is deaf, blind and nonverbal. "He requires a lot extra just to achieve a little bit of the same."
Without the usual access to educators, therapists and in-person aides, these families, and many like them, say they watched their children slide backward, losing academic, social and physical skills. And now they're demanding help, arguing to judges, state departments of education and even to the U.S. Department of Education that schools are legally required to do better by their students with disabilities. In complaints filed across the country, families say schools need to act now to make up for the vital services kids missed.
Parents "try to have grace"
The federal Individuals with Disabilities Education Act entitles children with disabilities to a public education that is two things: free and "appropriate." That means, if a child needs a speech therapist or special curriculum modifications to learn, schools must provide it.
According to IDEA, children with unique needs are to be assessed by school staff, in collaboration with the child's family, and given an individualized education program. Each IEP is a legal document, a kind of road map of required services and goals for every child.
But schools' shift to remote learning made it difficult for many districts to follow students' IEPs. Special educators and therapists weren't allowed to work in person, and many services couldn't be done well, if at all, remotely.
In October 2020, RAND researchers asked a sample of K-12 principals to estimate how their students with disabilities would perform in fall 2020 compared with in fall 2019. A little more than two-thirds of those principals said their students with disabilities would perform somewhat or much lower than they had before the pandemic.
Families told NPR that, initially, they approached these failures with patience and understanding.
"The teachers don't know how to use the computers ... Everybody else is having technical issues. You know, none of that is anybody's fault. You try to have grace about all that," says Carolyn Shofner, of Nashville, Tenn. Her high-school-age daughter, Rachel, has severe autism and struggled to learn remotely without the paraprofessional who sits by her side in school.
For Shofner and some families, those early failures of spring 2020 continued into the fall and winter. In January, her patience ran out.
"[Rachel] had made no progress ... and, in fact, had regressed on several things," Shofner remembers, including basic skills like counting money and expressing emotion.
She hired an attorney and filed a due process complaint against the city of Nashville and its schools, for violating IDEA and failing to provide her daughter an appropriate education.
The city quickly settled with Shofner, agreeing to follow Rachel's IEP and to provide an in-person paraprofessional or tutor in the case of another school closure.
In a written response to NPR, a Metro Nashville Public Schools spokesperson says, "During an extraordinary year, our teachers and staff went to great lengths to educate all of our students. We don't agree with this parent's version of events, but cannot comment further because of student privacy concerns. There are a number of reasons to enter into a settlement and the agreement denies any fault on behalf of MNPS."
To be clear, Shofner and most of the families NPR spoke with do not blame teachers or school-based special education staff for these pandemic failures.
"They're kind of in the same position I am," Rachael Berg says. Instead, Berg argues district and state leaders are to blame for failing to quickly plan for and provide these extra services to help kids like Maddie, Berg's daughter, make up some of the ground they lost.
"I've called countless IEP meetings. I've gone to so many webinars. I've joined every Facebook group you could ever possibly join. And I've never felt so unheard," Berg says.
"School systems are bureaucracies," says attorney Leslie Seid Margolis, who represents Berg's daughter. "They are not set up to be flexible ... What we heard over and over again is that ... the people who are actually working with students may believe those students need particular things, but they feel very powerless and the decisions get made at a higher level."
Margolis, who is also a managing attorney with Disability Rights Maryland, says the problem with extending districts more patience is that time is of the essence. Some students with disabilities have lost so much ground, it could take years to reverse the backslide.
Also, in Maryland, the clock is ticking. Margolis and her colleagues have filed a class administrative complaint on behalf of Berg and other families against the state department of education because state regulations require that special education complaints be filed within one year. Already, schools' early failures in March, April and May of 2020 fall outside that window.
The Maryland State Department of Education did not immediately respond to a request for comment.
"It was an act of God"
There's a name for what many of these families now want from schools: compensatory services.
The term isn't featured in IDEA but comes from past case law, as courts have sought a way of forcing schools to make up for failing to provide necessary special education services. Families now argue schools are legally required to do whatever it takes to get their special education students to where they would have been had there been no pandemic at all.
To school districts, though, the words "compensatory services" strike a nerve, because they often involve attorneys and costly remedies and because, districts say, they imply wrongdoing.
"A compensatory education service is to be provided when a school failed the student, and here during the pandemic, it's hard to say that was the fault of the school or anyone, really. It was an act of God," says Andrew Manna, an Indiana-based attorney who advises school districts.
"We have to look at the pandemic as the culprit here," says Phyllis Wolfram, executive director for the Council of Administrators of Special Education and a retired public school educator. "So there is no umbrella or realm by which we should be looking at compensating for something that we didn't have control over."
Advocates and disability rights attorneys say that regardless of fault, schools must step up.
"Students are entitled to a [free and appropriate public education] regardless of the circumstances," says Blaire Malkin, an attorney with Mountain State Justice in West Virginia. "It does not mean that [schools] are at fault for not providing those services in a global pandemic. What it does mean is that they have a duty... to provide that child compensatory education and to put that child back in the place they would have been if school had been open."
Central to this dispute is guidance the U.S. Department of Education issued at the beginning of the pandemic, in March 2020. It warned districts that "if a child does not receive services after an extended period of time, a school must make an individualized determination whether and to what extent compensatory services may be needed, consistent with applicable requirements, including to make up for any skills that may have been lost."
Many families tell NPR their districts have delayed assessments and, even now, remain more focused on cheaper, schoolwide "recovery services."
"Trust me, I ask, and I say, 'What are we doing for compensatory services?' " says Berg, adding that the members of Maddie's IEP team "just don't have the answers."
A spokesperson for the school district Maddie attends, Anne Arundel County Schools, said in a written statement that all children with disabilities will be considered for recovery or compensatory services, but "the eligibility process is a lengthy one and will continue into and through the next school year."
This slow, disjointed approach to compensatory services isn't specific to Maddie's school or to Maryland. A class action complaint filed in late 2020 against the New York City and State Departments of Education said much the same:
"Defendants have already publicly acknowledged that compensatory services should be available for those students with disabilities who were denied their instruction and services during remote learning. Nonetheless, eight months into the pandemic, Defendants have offered no hint of a plan for processing and delivering upon claims for compensatory services owed to tens of thousands of New York City students, whose losses continue to accrue."
In response to a request for comment, a New York City Department of Education spokesperson said the department began to offer in-person services as soon as the governor allowed. They said the department also closely monitored students' progress, prioritized device distribution for children with disabilities and worked with families to identify when students would need additional support.
A spokesperson for the New York State Department of Education said they do not comment on pending litigation.
The language in that New York complaint is exactly the kind of thing that worries Wolfram, at the Council of Administrators of Special Education, because she believes the U.S. Education Department erred in using "compensatory services" at all in its 2020 guidance.
"How could you compensate for all that time when we were thinking first and foremost about the health and the safety of all of our students and our staff and our families?" Wolfram asks.
When asked by NPR to clarify its position on compensatory services, an Education Department spokesperson said that the department stands behind its March 2020 guidance and that it would be releasing additional guidance in the near future.
Wolfram and attorneys who advise school leaders argue this talk of compensatory services is unnecessary. After all, some children may not have regressed at all. And, they say, schools can and will help without being forced to. First, though, students need to be assessed, to see precisely what kind of services they may need, and that will take time. So will managing how to provide all this extra support to students in a timely way, often without being able to add staff. For example, having to provide dozens of additional hours of speech therapy, in an area with only one school-based therapist, could require schools to contract with private providers.
"All of my clients... are scrambling to find additional personnel to work during the summertime — to provide a lot of these services that have been missed up to this point," says Jim Keith, chair of the Council of School Attorneys for the National School Board Association. "That's more difficult than it might seem, because I can tell you, it's been a hard year for everybody... We have educators who are basically worn out. And so we're trying to find people to provide these extra services."
Keith and Wolfram say families should trust that schools are doing their best.
Manna adds, families must remember that the pandemic put unprecedented strain on schools. What's important, he believes, is that districts acted — and continue to act — in "good faith" to provide what services they can. And he encourages families seeking extra help for their kids to work with school leaders — not against them by rushing to file potentially costly complaints.
"Is there something where we say, 'Look, this wasn't the school's fault, this wasn't the family's fault, this wasn't the teacher's fault, it's nobody's fault. But certainly we acknowledge that the student had some instructional time lost. And how do we bridge that?' " asks Manna. "Is there a way to have a provision where families and schools come together on collaborating to get that recovery instructional time without lawsuits?"
The problem with all of this, parents and advocates say, is that they don't always trust districts to prioritize their students with disabilities and to provide them the services they need.
"There is a process already," says Janeen Steel, a prominent disability rights attorney at Vanaman German in Sherman Oaks, Calif. "We have it in the law. It's called an IEP." Schools simply need to follow the law, she says. Steel has also seen districts offer families a modicum of help, but only in return for waiving their rights to any other pandemic-related services.
Therese Yanan heads the Native American Disability Law Center in Farmington, N.M. She remembers being on the phone once with a school attorney, long before the pandemic, fighting over whether a district should have to pay for her client's special education services.
"I said to him, 'What are we really fighting about here? You know this student needs these services.' And he said to me, 'Therese, if the school provides this student with these services, the football team won't get new uniforms this year.' And I responded, saying, 'Do you know how much I don't care about the football uniforms?' "
What families can do
Rancher Timothy Largo lives with his wife and grandchildren in Crownpoint, N.M. His grandson, Domeniqu, attends a tribally controlled Navajo grant school and receives special education services, including for attention deficit hyperactivity disorder.
After his school shut down and the services Domeniqu relies on stopped, Largo sought the help of the Native American Disability Law Center and filed a special education complaint with the relevant education agency — in his case, the Bureau of Indian Education. Largo accused Domeniqu's school of failing to provide special education services during the pandemic. His ask: compensatory services.
"I told the [special education] team that I feel like he's been left behind," says Largo. In February, the BIE ruled in his favor, saying "the school failed to provide services consistent with the IEP or undertake an individualized determination of how services would be provided during the pandemic and amend the IEP accordingly."
The BIE ordered the school to give Domeniqu a comprehensive evaluation, to provide 45 hours of compensatory services and to quickly submit a plan for providing those services. Neither the BIE nor the school Domeniqu attends responded to a request for comment.
Families in Largo's position can also file a complaint with the U.S. Department of Education's Office for Civil Rights. Another, more costly and cumbersome option is filing what's known as a due process complaint, as Carolyn Shofner did in Nashville. This allows families and schools to make their case before an administrative judge, in a trial-like setting. Though, in Shofner's case, the city settled before it came to that.
In the settlement, the city denied any wrongdoing but agreed to pay Shofner's $8,000 in legal fees and another $5,750 toward expenses she incurred hiring a private tutor for her daughter during the shutdown. Shofner says, "I did it to make sure that any other parent who ever faced something like this again would not be afraid."
What Largo's and Shofner's paths have in common is that they require families to advocate aggressively — or pay someone else to do it. The results are deeply inequitable, with income, language and knowledge barriers preventing many families from fighting for their child's rights.
"Nobody drops your kid off at school to think, 'you've got to hire a lawyer,' " Janeen Steel says. "You trust that [school staff] are the experts."
Kate Maglothin in Waterford, Mich., says she felt like she had been given the "brushoff" when her school district denied makeup services to her 7-year-old son, Finn, who has a severe speech and developmental delay. Then her sister-in-law, who happens to be a special education teacher, recommended that Maglothin retain a well-known advocate in the region — to help make her case to the district.
"The minute that I did hire an advocate," Maglothin remembers, "everybody [in the district] paid attention."
"The pandemic just exposed every problem"
Steel says the problem — that many districts have failed to provide special education services and are now failing to communicate with parents about remedies — is an old one.
"I didn't do this for 20 years because things were working before the pandemic, right? The pandemic just exposed every problem."
Largo, who spent much of the past year staying home to help his grandson with remote learning, wonders, "How many students are out there, not getting the same services they're entitled to? A lot of these parents or guardians, they're not literate and, you know, the students are falling through the cracks."
Largo says making sure his grandson Domeniqu gets the compensatory services the boy entitled to is his way of keeping a promise to his own son, Domeniqu's father. As Largo's son was dying, Largo says he gave his word that he and his wife would take good care of their grandchildren.
"That's basically what I'm doing is trying to advocate for my kids."
The system that Congress designed to educate children with disabilities on an equitable, individual basis has always been fragile, but, in many places, it has buckled under the weight of the pandemic, forcing many parents and caregivers to seek remedy however they can.
"I just want our kids to be valued as much as others," says Chrystal Bell. She's part of that class action complaint against the New York City Department of Education.
"They have potential, too."
LEILA FADEL, HOST:
More than 7 million school children receive special education services nationwide - at least they did before the pandemic. The services covered things like speech, occupational and physical therapy and behavioral counseling. But when schools closed in the spring of 2020, many of these vital services stopped. And more than a year later, in some places, they still haven't fully restarted. Now many parents, caregivers and attorneys are starting to ask schools, what are you going to do to make up for all that these children have lost? NPR's Cory Turner and freelance reporter Rebecca Klein have that story.
REBECCA KLEIN, BYLINE: We spoke with parents and caregivers all over the country, from a mother who works nights as a jail nurse on Rikers Island to a Navajo rancher raising his grandson in New Mexico.
CORY TURNER, BYLINE: And they all told similar stories about caring for children who went months - and in some cases, more than a year - without the special education services they need to learn.
KLEIN: As a result, doing school remotely wasn't just hard, they say. It was impossible
RACHAEL BERG: In general, it was probably a three-minute attention span.
MAYRA IRIZARRY: I got to be constantly on him. Raynardo, please, listen to the teacher. Raynardo.
UNIDENTIFIED PERSON #1: He actually would start hiding under tables and get physically aggressive at times.
UNIDENTIFIED PERSON #2: He would put me in, like, a headlock and grab me by my hair.
CAROLYN SHOFNER: We would maybe make it through the first two classes. And then the meltdowns would start.
BERG: One time, she broke the computer.
IRIZARRY: You know, this is, like, every day.
SHOFNER: And I couldn't get the teachers to focus on her. It was all very...
TIMOTHY LARGO: And I told them, too, that I feel like he's being left behind.
IRIZARRY: It's just not in him to be on the computer.
SHOFNER: It was just infuriating.
BERG: So frustrated.
CHRYSTAL BELL: It takes him so much more work to make every little accomplishment.
UNIDENTIFIED PERSON #2: That was the last time that I tried to force him to do school.
BELL: I'm sorry. I just want our kids to be valued as much as others. They have potential, too.
TURNER: That was Chrystal Bell and Mayra Irizarry in New York, Kate Maglothin in Michigan, Carolyn Shofner in Tennessee...
KLEIN: Timothy Largo in New Mexico - and in Maryland, Rachael Berg and Kimberly (ph), a mom who asked that we only use her first name to protect her son's privacy. These families say without the usual access to special educators, counselors, therapists and aides, their children lost academic, social and even physical skills.
TURNER: To be clear, though, they don't blame teachers. Instead, Shofner, a mother in Nashville and most of the parents we talked to say they blame a larger education bureaucracy.
SHOFNER: There's something about the institution that creates the havoc that makes it unfair.
KLEIN: In legal complaints across the country, families say districts now need to make up for the special education services children missed during the pandemic. Their arguments hinge on a federal law known as IDEA - the Individuals with Disabilities Education Act.
TURNER: It says children with disabilities are legally entitled to a public education that is two things, free and appropriate. Appropriate means if a child needs specific help to learn, then schools have to provide it. Since many districts did not during the pandemic, some families are now arguing...
LESLIE SEID MARGOLIS: You're violating my child's rights.
KLEIN: Leslie Seid Margolis is a managing attorney at Disability Rights Maryland.
MARGOLIS: Do you get to violate them until the parent shows up and says, wait a minute, you can't do this anymore? I mean, that's not the way this is supposed to work.
TURNER: Margolis has filed a complaint in Maryland saying students who did not get an appropriate education during the pandemic are now entitled to something called compensatory services to get them where they should be.
KLEIN: Those two words, compensatory services, don't sit well with attorneys who advise school districts because providing them can be expensive and a logistical challenge. But mostly, they say, because the words suggest that schools did something wrong during the pandemic or worse, that they acted in bad faith.
ANDREW MANNA: It's hard to say that that was the fault of the school or anyone. It was an act of God. It was a pandemic.
TURNER: Attorney Andrew Manna advises districts and says it's important to remember, for months, special educators weren't allowed to work in-person for valid safety concerns. Remote learning was also new. It was an experiment. And many services like physical and occupational therapy just couldn't be done well remotely. And still, lots of schools tried.
KLEIN: So Manna argues they should be held to a more realistic standard. During the shutdown, did they and are they now making a good-faith effort to serve students with disabilities? And it's not just Manna. We also spoke with Jim Keith of the Council of School Attorneys for the National School Board Association. Listen to how many times they both circled back to those three words.
MANNA: If there is a good-faith effort and it was no fault of the school, how do we help those students that did lose the instructional time?
JIM KEITH: It was a good-faith effort to contact those parents.
MANNA: Good faith.
KEITH: Good-faith effort.
MANNA: Good-faith effort.
KEITH: A good-faith effort.
MANNA: A good-faith effort.
KEITH: Good faith.
MANNA: Good faith.
KEITH: Good faith. Good-faith effort.
MANNA: Good-faith effort.
KEITH: Good faith.
MANNA: Good faith.
KEITH: Good faith. Good faith.
MANNA: Good faith.
KEITH: Good faith. Good-faith effort.
TURNER: During an unprecedented disaster, they say, intent matters, not just whether schools provided all special education services. Keith says, even now, there are huge challenges to offering the make-up services that kids need.
KEITH: All of my clients are scrambling to find additional personnel to work during the summertime to provide a lot of these services that have been missed up to this point.
KLEIN: But all this worries disability advocates, who say if schools are judged by intent and not results, lots of students with disabilities will lose. Even before the pandemic, they say, some districts just didn't prioritize special education. Therese Yanan heads the Native American Disability Law Center in New Mexico. She remembers many years ago being on the phone with the school attorney, trying to get the district to pay for a child's special education services.
THERESE YANAN: And I said to him, you know, the student needs these services. And he said to me, Therese, if the school provides this student with these services, the football team won't get new uniforms this year. And I responded saying, do you know how much I don't really care about the football uniforms?
KLEIN: And so this special education fight boils down to trust, with schools insisting they did the best they could under clearly difficult circumstances and pledging to families that they will provide some make-up services in good faith.
TURNER: While advocates push back, saying, it's been 15 months. And many children are still waiting for the help they're legally entitled to. And in the middle are families, frustrated and confused, certain of nothing but that they want the best for their kids.
KLEIN: For NPR News, I'm Rebecca Klein.
TURNER: And I'm Cory Turner.
(SOUNDBITE OF DORENA'S "MY CHILDHOOD FRIEND") Transcript provided by NPR, Copyright NPR.