Her oldest daughter, Iolani Azul, 11, was sitting at the kitchen table in their house in San Francisco, her right hand curled up against her stomach. It reminded Van Brusselen of how her daughter had carried herself when she was an infant, before years of schooling, occupational therapy and guidance from teachers helped her overcome some physical and cognitive challenges resulting from a stroke in utero.
But inside she was reeling.
Over the course of a typical school week, the fifth grader works with two teachers, three instructional aides and seven therapists. Not only does she need more specialized support than many students, but her vision challenges and other impairments can make online learning difficult.
Advocates, educators and parents say that kids with disabilities are particularly vulnerable as schools shut down to slow the spread of the coronavirus and turn to remote learning. In fact, when school districts first closed, some opted not to provide distance learning to any students, in part out of concerns that they wouldn’t be able to effectively serve kids in special education and would face lawsuits as a result.
Guidance from the Department of Education prompted some school districts to reverse that decision, and many have ramped up efforts to offer online learning. But civil rights advocates remain concerned that a provision in the coronavirus package passed by Congress last week will let some districts off the hook for not serving kids with disabilities.
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Van Brusselen learned just a month before her due date that her baby had hydrocephalus, or an accumulation of fluid in the brain. Her doctors told her there was an 80 percent chance her daughter wouldn’t survive after birth and encouraged her to terminate the pregnancy.
She learned to walk and talk, and after spending preschool with kids with severe disabilities, she entered general education classes in elementary school and flourished. This fall, she’ll head to middle school.
The goal is that by mid-April, teachers will offer virtual lessons and make alternatives available for kids who don’t have computers and Wi-Fi. The district says that special education teachers are helping to figure out what learning will look like for kids with disabilities.
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That first week at home, she received a downloadable packet of activities from Iolani’s school, which she tried to work through, although she says they weren’t modified to take into account her daughter’s disabilities.
Iolani ne constant guidance and supervision, and from 7 a.m.
to 9 p.m.
each day, Van Brusselen scrambled to keep her daughter occupied. They bounced on a trampoline, listened to music and worked on lessons Van Brusselen downloaded from a website for kids with disabilities.
She tried with modest success to teach Iolani the card game UNO.
With the health system overwhelmed, Van Brusselen worries about what might happen if the shunt in Iolani’s brain that manages her hydrocephalus were to stop working and she had to be rushed to the hospital. “Please don’t let this be the moment that something happens to her shunt,” Van Brusselen said.
By Friday, March 20, after enduring a series of Iolani’s tantrums, Van Brusselen posted on a Facebook group for mothers of children with disabilities asking for help. Another mom suggested putting Post-it notes on a wall with different activities that Iolani could choose from.
For a few days, that helped. But by the next Monday, day 10, Iolani had lost interest in the Post-its.
On day 11, March 24, Van Brusselen received a stream of emails from Iolani’s teachers and therapists. They were checking in, not offering services, but it was still nice to hear from them, Van Brusselen said.
Iolani thought so, too. She got on the phone to say hello to one of her teachers.
“I miss it. I miss my teachers, my friends,” she said in an interview later that day.
Here’s why they’re not.
Kimber Rice, a mother of two who works as a family engagement specialist with the San Juan Unified School District in Sacramento County, California, is among them. Although her district plans to roll out distance learning in April, some of the supplemental materials initially provided by teachers weren’t accessible to her seventh grader, who has intellectual disabilities.
But at the end of last week, she learned that the school would distribute Chromebooks and laptops, and that the one assigned to her daughter had accessible software that could adjust the size of font and read aloud.
Still, she wondered how her daughter would be able to keep up with lessons, especially if she couldn’t sit by her all the time. She also worried about what sort of services the seventh grader would receive for her speech and vision impairments.
“I’m stressed about how much of anything will be possible,” Rice said.
Tom Carter, in New York City, said a teacher from his son’s specialized public school for children with disabilities has been in touch daily. But it’s been tough for Keenie, 17, who is severely autistic, to get any learning done.
Carter had to call his son’s doctor for a prescription of Xanax, which helps to calm his son in emergencies. “He’s pretty energy sensitive, so I don’t know if he was picking up on the general vibes of the planet or of his siblings,” Carter said.
Carter and his wife, Alex, spent the first week helping their six other kids get set up with online learning. This week they plan to focus on Keenie and trying to get him on a schedule of three structured hours of learning per day.
“The minute anyone stops putting what I would call constant work into him, he regresses,” Carter said.
The March 21 guidance from the Department of Education, prompted by some districts’ decisions to not offer any distance learning at all out of concern over potential lawsuits from families with children who have disabilities, asserted that the act should not stand in the way of schools providing online education.
“We remind schools 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 agency said.
Still, some districts remain concerned about liability, said John Eisenberg, executive director of the National Association of State Directors of Special Education. There will likely be a patchwork of approaches across the country, he said.
Meanwhile, disability-rights and education advocates remain worried that the rights of students with disabilities will be undermined by the recent federal coronavirus aid legislation. Initially, the relief package included language that would have waived requirements that school districts provide a free and appropriate education to children with disabilities.
Miriam Rollin, director of the Education Civil Rights Alliance at the National Center for Youth Law, said she worries that DeVos — who in her 2017 confirmation hearing seemed to suggest that states could opt out of complying with the federal special education law — will not ensure that kids get the services to which they’re entitled.
But Rollin said that in districts that are committed to these students, this could be a time for innovation.
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Some districts are holding virtual meetings with parents about their children’s individualized education plans, said Denise Marshall, executive director of the Council of Parent Attorneys and Advocates, a nonprofit that advocates for children with disabilities.
“We realize we’re facing unprecedented challenges,” Marshall said.
But she worried she might have to take a leave of absence from her job to fill the place of Iolani’s instructional aides, who sit beside her in class and tailor her general education assignments to her ne.
On day 12 of the quarantine, Iolani fell apart.
After the tantrums and tears subsided, Van Brusselen felt a sense of unease. It reminded her of how she felt after Iolani was born, when the girl’s health was so precarious that she spent every day wondering if her daughter would make it to the next.
“I’m not a therapist; I’m not a nurse,” she said. “I’m just a mom.