Families of special education students feeling particular pain of distance learning in pandemic

Rebekah Rocha is at her Windsor home doing two — or three — things at once. She’s on the phone and answering the door, all while talking to her daughter, Gigi, who is in the bathroom.

Gigi is nearly 12, the middle of Rocha and her husband Jose’s three children. Gigi was born with 5p- Syndrome, a rare genetic disorder that causes delays in cognition and gross and fine motor skills, as well as in speech and language.

She had been learning to use the toilet but regressed since the coronavirus pandemic shuttered schools in March. Gigi is nonverbal and Rocha describes her as “severely handicapped,” and yet she thrived in her fifth grade class at Brooks Elementary School last year. There, she received special education support but was also integrated into a general education classroom.

Without school — without the routine, regular therapy sessions and daily socialization with peers — Gigi has struggled. And that has meant Rocha has struggled, too. A painstakingly crafted schedule for two working parents with three kids — one with special needs — started to show cracks early in the shelter in place last spring when all three kids could no longer attend school and Rocha was forced to work from home.

On this day, Rocha, principal at Cesar Chavez Language Academy in Santa Rosa, pulls the phone away from her face to give the just-arrived babysitter an update on Gigi’s progress in potty training. Rocha tells the sitter that she has been rewarding her daughter’s success on that front with small bathtub toys. She returns to the phone.

“Honestly, I am like ’How am I going to have a job and deal with her?’ ” she said last week. “I have to talk myself off my ledge and say, ’OK, problem solve.’ I have to go back to work August 1.”

’How am I going to survive this?’

Nearly 13% of Sonoma County’s 70,000 transitional kindergarten- through-high school students receive some level of special education services. Some services are in-depth for medically fragile or nonambulatory students who receive lessons in textures, colors and smells. Other services include an individualized education plan that can outline needs such as extra time for test taking or the use of a nontraditional chair.

When the coronavirus pandemic shut every school in the county last March, parents were suddenly faced with balancing either working from home and delivering lessons to their kids, or going to work and hoping their kids manage online learning on their own. Parents of students with special education needs were even more at sea.

The same big, general education class that Gigi thrived in during the school year was meaningless for her once her 30 classmates morphed into 30 tiny faces on a computer screen, her mom said.

And her individualized therapies that came within the school day? Those fell to family.

And as the pandemic rages on, Rocha feels overwhelmed by the prospect of another school year playing out like the final months of spring.

“They are not going to get anything, kids like my daughter,” Rocha said. “They are just not getting any services and we are expected to be their everything. Her behavioral therapy was online ... and it was telling me what I needed to do.”

As an educator herself, Rocha does not want to complain. She knows full well the bind that districts throughout California and the rest of the nation are in with dilemma of whether or not to open schools in a pandemic. She knows, too, that federally mandated special education services have not been fully funded by the federal government for years.

Families from Hawaii to New York have sued their school districts, demanding the return of services and arguing that distance learning as delivered to the general education population is not feasible — or equal under the law — for most special education students.

A slew of physical and occupational therapies involve touch, something new health and safety protocols do not allow. Students with attention deficit issues often struggle with Zoom-formatted classes. Masks and facial coverings can make crucial communication between adults and children nearly impossible.

In the spring, U.S. Education Secretary Betsy DeVos urged flexibility during school closures and said that students who did not have access to called-for therapies should be reevaluated in the fall and could receive compensatory services.

But with 9,000 students in the county potentially lining up to have their individualized education plans updated in the fall, the wait could be painfully long. And parents like Rocha say they know what the evaluations will find: Likely a dramatic regression in academic, behavioral and physical benchmarks.

And Rocha can’t wait. School for her three kids does not start until Aug. 17, but she planned to report back to work Monday.

“That is where I am at: ’How am I going to survive this?’ ” she said. “I will, but am I going to have to take a leave of absence? This is not realistic. I just have to keep on going and run this marathon.”

She paused.

“I don’t know,” she said. “It’s overwhelming.”

’I worry about the families’

Acknowledging the shortcomings of distance learning programs throughout California last spring, the Legislature included requirements in the passage of the state budget. Legislators conditioned state funding on compliance with, among others, live interaction with teachers; how schools will address the needs of special education, English learner and foster youth; and districts must show how they will measure their effectiveness.

The days of not holding staff and students accountable for lack of participation or results are over, according to the bill’s language.

“I think the state has been fairly directive that we need to keep those students at the forefront,” said Mandy Corbin, assistant superintendent of special education for the Sonoma County Office of Education. “My view on that is that I do not believe that those students have been forgotten at all. For us in the world of special education, we are concerned every day for our students and we want them back in person as soon as we can.”

Gov. Gavin Newsom’s directive that no schools within any county on the state’s COVID-19 watchlist can open for in-person instruction included an option for districts to seek waivers. As many as 15 districts have sought some form of exemption to the prohibition, according to SCOE Superintendent Steve Herrington.

With a waiver in hand, a school district could potentially open a campus to serve high needs students in small group settings: special education, English learners and others. Waivers must be approved by the county’s public health office, as well as the state Department of Public Health, Herrington said.

No waivers have yet been issued.

Until in-person services are offered again, Corbin said families are clearly feeling the pressure of providing specialized instruction and care at home.

“For our families, it’s the stamina of keeping up with that every day over the duration of this,” Corbin said. “I worry about the families.“

’We can’t go on like this’

Language in the state budget bills requires districts provide “live daily interaction,” take attendance and offer a minimum amount of daily instruction, which can be met through a combination of live instruction and a time value given to work assigned. Schools must also provide “accommodations necessary” to serve students with special needs.

But what is realistic or feasible during a pandemic is unclear, said Lisa Lightner, a special education advocate based in Philadelphia.

“You can ask for anything. You can ask for what your child needs, but nobody has said they have to provide anything,” Lightner said.

Lightner, who hosts a blog and a podcast on special education issues, said in the early days of the pandemic she advised families to stay the course and give districts and school officials the benefit of the doubt.

“It was ’Oh, my God, it’s a pandemic, let’s just get by. Let’s survive,’” she said.

Now that many schools across the country will be closed for the forseeable future, Lightner expects services — in whatever form they may take — to resume to the extent possible. She said parents have to act as their own advocate.

“It’s going to be better because it’s going to have to be better,” she said.

But even the potential return of in-person instruction comes with its own set of problems for some vulnerable students.

Some special education students’ experiences will be complicated if, like Lightner’s son, they are medically fragile. Parents who long to see their children get back to critical routines and intervention programs must balance that with other health and safety considerations if their child is at greater risk related to COVID-19, Lightner said.

“It’s not an easy decision,“ she said. ”I hate watching him regress ... but I just feel like social skills and activities of daily living, we can remediate that, but I can’t risk his physical health because COVID would be deadly for him,“ she said.

Rocha shares many parents’ return to school fears — both for her daughter and the teachers and staff who care for her. Gigi might struggle to keep a mask on. And maintaining 6 feet of separation? That is not likely to work either, she said.

“She definitely doesn’t understand social distancing — she would run up to people and hug them,” Rocha said.

Rocha has spent months investigating options that will work for Gigi and work for her family. Keen to social cues and following the lead of peers, Rocha said that Gigi has always done better when integrated with general education classes.

But the pandemic will likely prohibit that for the time-being. So Rocha is seeking ways to secure both therapy sessions for her daughter, but also a modicum of free time among kids her own age.

So far, she hasn’t found a solution and knows she must. She returns to work Monday.

“We can’t go on like this,” she said.

You can reach Staff Writer Kerry Benefield at 707-526-8671 or kerry.benefield@pressdemocrat.com. On Twitter @benefield.