Vanessa Ince's daughter, Alexis, has a rare chromosomal abnormality and autism. Alexis has thrived at her public school in Wailuku, Hawaii, and loves spending time with her classmates.
Ince says when the COVID-19 pandemic closed her school in Wailuku, the effect on her daughter's well-being was "devastating."
"Alexis regressed so severely. She was previously, I would say, 95% potty trained and she started wetting herself." She also regressed in other areas, her mother says: She went back to crawling and stopped trying to use her communication device.
Ince says her daughter, who is 10, especially seemed to miss being around other children, as well as her regular routines, structure and stimulation. She went from a "happy, bubbly, loving-life child," to wandering the house aimlessly. "She just looked flat and empty and not really there."
Ince and her husband have filed a lawsuit seeking to get Hawaii's Department of Education to pay for the services Alexis needs in a facility where she can see other children.
They are part of a growing number of parents around the country who are suing schools and state education departments over this issue. The Ince's attorney, Keith Peck, has also filed a suit seeking class action status for all families in the state who argue their students' Individualized Education Plans have been breached during the pandemic. (Hawaii's Department of Education did not respond to NPR's requests for comment.)
There is also a suit seeking national class action status, filed in New York City, that claims would-be plaintiffs in 20 states and growing.
Peck says that because Hawaii is a single, statewide school district, it makes it easier to try to join students' complaints together into one claim. "We want a systemic approach to address people's need for compensation," Peck says.
But advocates and experts say the very nature of special education means it's hard to come up with a single solution that works for everyone — or a remedy under existing rules and laws to even start to address the problem.
Advocates and attorneys who specialize in special education tell NPR that across the country, remote learning did not work very well for many students with disabilities.
First of all, students who are from low-income families are overrepresented in special education, and may not have had devices or Internet access. That can add up to "automatic denial of their free, appropriate public education," says Bill Koski. He directs Stanford Law School's Youth and Education Law Project, which represents low-income students with disabilities in legal cases.
Secondly, students with attention deficit or communication difficulties may not be able to focus on computer screens for significant amounts of time.
And then, occupational, physical and speech therapists, for example, often touch students to guide them, and there aren't good substitutes for that over video chat.
A touchier question is whether districts have been trying hard enough to meet special education students' needs and fulfill their obligations under federal law during the pandemic.
U.S. Education Secretary Betsy DeVos issued guidance in March urging flexibility under the law during school shutdowns. She announced that special education law shouldn't stand in the way of the shift to online learning, and that students who missed out on therapies, for example, should be re-evaluated in the fall and receive "compensatory services," if necessary.
Koski, the advocate at Stanford, says there is a widespread understanding of the difficulty districts have been in. "There was almost a grace period during the shutdowns in the spring. Everybody was like, OK, this is uncharted territory." But now, he says, complaints, as well as simple requests for reevaluations, are likely to mount, which leads to its own problem: a backlog of paperwork that can lead to delays in resolving each case.
Alexander Campbell is a 14-year-old with autism who advocates for his fellow special education students in the state of Virginia with the Alliance Against Seclusion and Restraint. He said the pandemic has made existing inequalities worse.
"Students aren't receiving equitable services during regular normal schooling," he says. "And now that it's in the pandemic, it's been even worse, to the point where the school systems are trying to convince students and parents not even to receive services at all."
When Campbell's high school closed down, they sent his parents a letter dated April 16th asking to amend his Individualized Education Plan to suspend certain services. Campbell's family refused to sign. (His school did not respond to NPR's request for comment.)
Like Koski, Campbell says that, "we should be reasonable with schools saying, you know, that they can't provide every accommodation." For example, usually Campbell is allowed to chew gum in order to help him focus in class, and, "I don't expect them to get in the car and bring me a pack of gum to my house." But for fellow students whose families may be poor or may not speak English well, he's concerned about schools trying to push them to give up services they're entitled to.
Campbell's concern is echoed by Wanda Blanchett, the dean of the education school at Rutgers University in New Jersey. She says that special education has historically been a "struggle" with its roots in the civil rights movement. To this day, Black and brown students tend to be overrepresented in certain kinds of special education, meaning this struggle intersects with issues of race, class and English-speaking status.
"Even though we have the legal protections, we know there are, every day, children that are guaranteed these services and they're not provided services when there is no pandemic," Blanchett says. "So it is certainly conceivable and real that these services have been disrupted [during the pandemic]."
But Julie Mead, who researches legal issues related to special education at the University of Wisconsin-Madison, says there's a potential problem with these lawsuits.
"Students with disabilities require programming that is special. That's the whole point — 'special' education," she says. In other words, for the very reason that each of these students is different, and needs different services, it may be harder to get courts to recognize them as a class, Mead says. She notes that, ever since a 2011 Supreme Court decision, Wal-Mart Stores, Inc. v. Dukes, certifying a class for a class action suit has gotten more complicated.
"What often becomes difficult is that judges look at this and say, 'Wait a minute. Kids with disabilities are so different, I'm reluctant to certify this as a class action because I'm not confident that we could come up with a remedy that satisfies everybody's needs.' "
And yet, Blanchett says, "what we did last March as a stopgap measure is not sufficient for this fall." All these suits and complaints express a very real feeling among many families that they need schools to step up and do a better job taking care of students with disabilities.