Iolani Van Brusselen’s right hand is becoming so stiff she can hardly use it. The 11-year-old has cerebral palsy, among other conditions, and her mother JoAnna Van Brusselen is watching the change with constant concern.
“It’s just turned into a claw again,” she said. “We had done so much therapy that it had loosened up and she started using it, and now it just looks terrible.”
Before the COVID-19 pandemic, Iolani was attending Leonard Flynn Elementary School in San Francisco. She was receiving occupational therapy and had a team of people to remind her to use the hand, her mother said.
Now Iolani is starting 6th grade remotely, and Van Brusselen is the one to help her daughter with homework, set up her adaptive computer for Zoom classes and quell her frequent tantrums.
“None of the therapies are something that she can do on her own,” said Van Brusselen, who is also a bilingual education coordinator for a nonprofit called Support for Families of Children With Disabilities.
“It took 100 percent of my participation for her to do it, and sometimes 110 because she was melting down,” she said, adding that she’s taken on the responsibilities of her daughter’s teacher, physical therapist and speech therapist. “I kind of stepped into a role that like 15 other people do.”
For months, families of California children with disabilities have struggled to keep students on track academically and socially. Though districts are making efforts to virtually connect families with therapists and aides, parents say following a curriculum — on top of meeting a child’s basic needs—is a serious challenge.
Relief could be on the way. At a press conference Friday, Gov. Gavin Newsom hinted at allowing schools to invite children with disabilities back to the classroom in small groups.The state is expected to release detailed guidelines this week.
The governor’s plan could be an option even for counties that are on the state’s COVID-19 watchlist and are prohibited from fully opening schools.
“There are simply kids that will never, ever have that quality of learning that we all desire to advance online, no matter what kind of support we provide, even if we individualize it,” he said.
If and when the special needs plan gets the green light, educators and parents will need to be flexible with students who choose to come back, said Aubyn Stahmer, a researcher and psychologist at the UC Davis MIND Institute.
“It may mean a great deal of backtracking to where kids were in March,” she said.
Stahmer works primarily with children with Autism Spectrum Disorder, who often struggle with focus, social interaction and information processing. Autistic students may have trouble learning via Zoom, especially if their parents are busy working or caring for other children, she said.
And if they return to in-person schooling this year, they’ll have to adjust to yet another change in routine.
“There may be kids who haven't had social interaction for six months,” Stahmer said. “And if you have autism and that’s already somewhat challenging ... it might cause more anxiety. So that catch-up might take a little longer.”
Decisions to invite any students back into classrooms would have to be made in consultation with county health departments and in accordance with state guidelines.
Dave Gordon, Superintendent of the Sacramento County Office of Education, said the decision to bring special needs children back to school also involves discussions with employee unions, to make sure staff feel safe interacting with students. He says school districts have worked hard to ensure children with disabilities get the attention they need.
“It’s a really difficult burden on the kids and on the families, and frankly on our staff because they’re used to providing the services hands-on,” he said. “None of it is easy, and none of it is satisfying to families or to the kids who benefit so much from the in-person contact.”
Advocates for children with disabilities have been vocal about the lack of tailored services from school districts. In April, several groups sent a letter to Gov. Newsom and other elected officials calling for revamped education plans for each student, adaptive learning technology, private tutoring and other accommodations.
As part of the state budget process this spring, California passed a law requiring districts to make emergency distance learning plans for all special education students, to be used in situations where school is closed for more than 10 days.
Several California schools are looking at ways to get students with disabilities in-person help. In Marin County, a handful of special needs students were able to attend a special summer school program overseen by the Marin County Office of Education and the local health department.
Earlier this month, the Woodland Joint Unified School District board discussed applying for a special state waiver to allow special education students to return for small-group learning. They decided not to apply, but a board member says they’ll likely revisit the issue following the governor’s announcement.
Parents with the Palo Alto Unified School District are pleading with administrators to create in-person options for children with disabilities. But representatives from the teachers’ union told the Palo Alto Weekly that the health risk to employees is too high, especially in cases where students need help eating or going to the bathroom.
Some safety practices, such as wearing a mask, might be especially hard to enforce for children whose diagnoses make them sensitive to touch, smell and other sensory factors, psychologist Aubyn Stahmer said. The MIND Institute has created “social stories” for children with autism that aim to teach mask-wearing in friendly, understandable terms.
“And for some kids that works really well, they like to pretend they’re a superhero wearing the mask,” she said. “And then for other kids it’s really challenging, they either don’t understand why they need to wear it, or it’s very uncomfortable and disturbing to them, both to be wearing it and to have everyone else wearing it.”
In San Joaquin County, administrators are discussing safety protocols such as protective gear and regular sanitization for both employees and students. They’re looking at having students with disabilities rotate into classrooms on some days and participate virtually on other days.
For now, San Joaquin County officials are trying to make distance learning as easy as possible for families.
For some students that’s meant sending home tools such as building blocks, special silverware and adaptive computers. There have also been one-on-one in-person meetings to look at where students are making or losing progress.
“Anytime there’s a transition with a student in special education, we expect there to be some regression,” said Monica Filoso, division director for special education for San Joaquin County.
“Before we really dive into the next level of instruction, we’d start with assessment to determine that.”
In the Bay area, JoAnna Van Brusselen is worried that Iolani is falling behind on skills she worked hard to develop. Without the routine of the school day and friends and teachers to interact with, she’s reverted to some negative behaviors, such as biting herself and punching things when she’s frustrated.
School districts offering small, in-person classes for special needs students is an important acknowledgment of families’ struggles, she said. But even if Iolani is invited back, Van Brusselen plans to keep her home due to her compromised immune system.
“She could easily, you know, die from getting something as severe as coronavirus,” she said. “I feel this duality that's tearing me in two different directions. I know she's regressing and I know she needs support from professionals … but I just can’t risk her health.”
She said having a vetted professional come to her home to help with some of Iolani’s behavioral issues would be a major service the school could provide.
Nearly 800,000 California students, or 12.5% of the state’s students, are enrolled in special education.
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