This article was published on Berkeleyside by Ally Markovich on December 11, 2020.

Since schools shut their doors in March, Dalilah’s* son has been struggling. When classes moved online, Adam* began to despise school. First, he refused to open his computer. Then came the meltdowns.

Adam has a language disability that makes it difficult for him to communicate through speech and writing, and he receives mental-health support. The disability makes it hard for him to keep up with the material and understand what’s going in class. As distance learning wears on, Adam is falling further behind.

“I’m worried about long-term effects of distance learning on my child,” Dalilah said.

But instead of providing Adam with more support, Dalilah said Berkeley Unified School District has cut his special education services. Adam used to get five hours a week of support in reading, math, and executive functioning skills; this year, that’s been reduced by a third. And what Adam does get from the school is not enough.

Adam’s story is not unique. It’s the case for students with disabilities throughout the Bay Area.

“My special education parents were just told unilaterally that services would be reduced,” said Shari Washburn, who works as an advocate for families of students with disabilities in the Bay Area. Across the country, parents of students with disabilities are filing lawsuits against their public school districts in an effort to receive the support their children need.

There are other concerns, too. Delays in assessing students with disabilities at Berkeley Unified have meant that students are waiting months to be eligible for services at all. The result is a group of students neglected by the school and unable to access their education. Some parents and advocates say these reductions violate federal laws put in place to protect students with disabilities.

What happens when special education services get cut?

Students with disabilities have long been on the margins of this country’s education system, less likely to graduate from high school than their peers in general education. Protections for students were hard-won: in 1975, the Individuals with Disabilities Act (IDEA) ensured students with disabilities would receive a free and appropriate public education in the least restrictive environment possible. Now, the pandemic threatens those protections.

“I keep hearing people say, ‘everyone’s in the same boat.’ But it’s not true. Some students are worse off than others,” said Dalilah.

While many parents at Berkeley Unified say distance learning is going relatively well, 40% who have a student with a disability say that Zoom classes are not working, according to an October survey conducted by the school district.

Cheryl Theis, an advocate at Disability Rights Education and Defense Fund, who has had countless conversations with families about their children’s education, put it this way: “The school bus for distance learning came. But it didn’t have a ramp.”

“There’s a small subset who are still waiting at the bus stop,” said Theis, who has a ninth grade son with ADHD and anxiety at Berkeley High School. “They really haven’t gotten to get an education since March.”

Still, there are success stories. Vicki Davis’s seventh-grade daughter has been thriving since school moved online. Her daughter has Fragile X syndrome, which causes social anxiety and attention issues. Working from the comfort of the living room, her daughter is happy to speak up in class, enjoys fewer distractions, and attends a weekly girls’ group with other teenagers.

“She’s a very outgoing person, but when she was in in-person school, the social anxiety made it difficult for her to contribute,” Davis said. “We just had parent-teacher conferences. All her teachers said she’s engaged, she participates.”

For the students who are struggling, parents and advocates say Berkeley Unified is not doing enough to ensure students can access their education.

In June, Senate Bill 98 required schools to create Distance Learning Emergency Plans (DLEP) for all students with disabilities to specify how each child’s needs would be met in emergency circumstances. Berkeley Unified wrote emergency plans, but parents like Dalilah worry that they are functioning as an excuse to provide fewer special education services.

“There’s no requirement that services be reduced with the legislation. Yet the district has for whatever reason chosen to interpret [Senate Bill 98] as reduced services,” Dalilah said.

Trish McDermott, Berkeley Unified School District’s information officer, acknowledged that a challenge for the district to deliver all the special education services through a virtual platform, citing concerns about excessive screen time, student absences, and issues with students connecting to Wi-Fi. But, she said in an email, “It does not change the District’s offer of a free appropriate public education (FAPE) for each student.”

Washburn finds the district’s response infuriating. It’s a challenge to meet students’ needs in a virtual setting, but that doesn’t excuse the district from its responsibility to provide an appropriate education.

Even the services that BUSD is providing are not cutting it. Adam gets support in a small-group setting, but the children have a variety of needs, making it difficult to tailor the support directly to his disability, Dalilah said. “Besides the total services being reduced by a third, he’s supposed to be receiving specialized instruction, but the quality is not meeting his needs,” Dalilah said.

The burden has fallen on Dalilah to fill in what her son has been missing at school. “I am neither a teacher nor a mental health provider,” Dalilah said, and it’s exhausting for Dalilah and confusing for Adam.

Evaluation delays mean months without services

When Erin’s* son was finishing kindergarten, he still couldn’t name all the letters of the alphabet. When she asked the district for help, she was told to wait until third grade for an IEP evaluation. Erin didn’t want him to fall further behind so she kept pushing. Before COVID closed schools, Erin finally signed an agreement with the district to begin evaluating her son for special education eligibility. Then the pandemic hit.

“I’ve been pushing for help for my son for a long time. I’ve been really disappointed by what’s available and distance learning has made it worse,” said Erin, whose son has recently been diagnosed with dyslexia, a reading disability, and dysgraphia, a writing disability.

Typically, when a parent requests that their child be evaluated for special education, the district has 15 days to produce an Assessment Plan. Without that plan, there can be no assessment and thus, no special education services. In March, the 15-day timeline for assessment plans was waived—schools could take as long as they needed to create these plans.

But by the start of the next school year, evaluations for special education should have been moving forward as usual. On July 1, Governor Gavin Newsom passed Senate Bill 820, which reinstated the mandatory 15-day timeline. Erin thought this meant her son would finally get an assessment plan and then get the services he needed. She kept waiting—after all, how long could it take?

Erin would wait until November to finally get the assessment plan. She is one of a number of parents who say the needs of their children were not being identified in the first place, due to delays in the assessment process. Under Child Find law, schools must identify and assess students who may need special education services.

“I know several families who are trying to get their kids evaluated for special ed services. They were told that evaluation timelines are on hold, which they’re not,” Washburn said. “That makes me crazy,” she said, because students are the ones paying the price. That’s not what she sees in other districts: elsewhere in the Bay, she has families that had been evaluated for special education services as early as July, some virtually and some in-person.

In an email obtained by Berkeleyside, Program Manager for Special Education Eileen Jacobs tells a parent asking for an evaluation that special education assessments are on hold. “I understand everyone’s frustration but at this time, we cannot conduct assessments. I will notify the [redacted] once I have received permission to resume testing,” Jacobs wrote in an email on Aug. 21, 2020.

McDermott said assessment delays occurred because, “like most public school districts operating under these emergency conditions,” the district “needed time for the Evaluation Development Team to plan and train our staff in our virtual assessments.”

The pandemic adds another layer to a pre-existing problem. Since 2017, Berkeley Unified has been embroiled in a class-action lawsuit that claims the district “systemically declined to timely identify, evaluate and provide appropriate interventions and accommodations to students with reading disorders.”

At the same time, some students at Berkeley Unified might be too readily identified for special education. Black students make up a disproportionate number of students with IEPs, and some parents say their children are inappropriately identified as having special needs.

Erin thinks the district’s refusal to evaluate her son’s needs in a timely manner is indicative of its broader unwillingness to provide special education services. “Their method is: let them sue. They block and they block and they block until they get lawsuits.”

In 2016-17, the district spent more than $1 million on legal settlements, much of it a result of families “in conflict with the district on meeting their child’s individual needs,” according to a 2017 report by an independent consultant.

Months passed for Erin without word from the district. Tired of watching her son growing dejected, she took matters into her own hands and got an independent evaluation that confirmed her suspicions: her son had dyslexia and dysgraphia. She enrolled him in a special program for students with reading disabilities like his and hired private tutors to help him catch up. Now, he is much closer to reading on grade-level, but it’s been an expensive investment.

“We’re on track to spend tens of thousands in private tutoring. We’ve made a one-on-one school for our child,” Erin said. She admits that she’s “super privileged” to be able to pay for tutoring and cut her hours down to part-time to oversee her son’s education. She worries about families who can’t afford the expenses but are in the same position.

Erin wishes that the district could have provided support, even without an evaluation. “Fine, don’t assess my kid, but don’t make him suffer. Can you provide these supports in some other way even if you don’t have an assessment?” When the support didn’t come, Erin came to the conclusion that Berkeley Unified is “not doing what it can. They say no. That’s not doing what’s right.”

A heavy toll on students with the most severe disabilities

When Alexa’s* daughter was born, she was diagnosed with a rare genetic syndrome that causes Intellectual disability and Autism. Now a seventh-grader at Willard Middle School, Mia loves sports. Last year, she played for the school’s basketball team and competed in the regional Special Olympics in swimming, basketball, and soccer.

Berkeley’s full-inclusion model means that Mia spends her days with general education students. Because of her disability, Mia can’t read or add single-digits, but a one-on-one aide typically walks her through modified lessons and activities.

Full-inclusion is an ambitious model, considered the standard among special education experts, and Berkeley is one of few school districts to actually implement it. But how successful Berkeley Unified is at supporting all its students has been called into question. And this year, distance learning has made full-inclusion all the more difficult.

Mia’s intellectual disability makes choosing the right assignment on Google Classroom an obstacle, let alone completing it. Though one-on-one aides accompany Mia to Zoom classes, they do little more than appear on the calls, only occasionally pulling Mia into a break-out room to work on material that she can understand. Alexa has had to step in where the school has fallen short to help Mia navigate online school.

“I think it was her first day of math when I totally had a meltdown. I was crying. They were moving so fast,” said Alexa, who has now pulled Mia from math and science, creating her own material to move at her daughter’s pace. “The reason she’s not going to math and science anymore is that I couldn’t manage doing everything.”

For students with disabilities as severe as Mia’s, distance learning is indeed difficult to pull off. “How do you provide services for a student who doesn’t know how to point to icons on an iPad, can’t log into a computer by themselves, or don’t know how to use a computer?” asked Theis, the advocate at Disability Rights Education and Defense Fund.

Nina*, a mom of two children with disabilities, says the teachers are doing the best they can, calling their efforts “heroic.” But the accommodations just aren’t working. “You can’t have push-in one-on-one help remotely. None of it works for my child.”

The emotional burden that has followed has been intense. Nina’s younger child has emotional regulation issues that cause her to sometimes scream and run away from the computer, or else put her head down and cry during class. The isolation has left an even more severe impact on her older child, who has autism. Nina did not want to describe the impact in detail, but called the changes in her behavior “disturbing and heartbreaking.”

“Her emotional and social behaviors are regressing. Whenever school starts again, I can’t imagine how she’s going to be thrown back into a middle school environment. As her mother, it’s terrifying.”

What’s next for students with disabilities

In early November, before COVID-19 case spiked again in California and across the nation, parents with struggling students were wary but hopeful about a return to in-person learning. Small pilot programs had begun offering in-person learning at several elementary schools. Students with disabilities were included in the initial groups, along with general education students.

The situation has changed considerably since then, and a return to in-person learning has moved farther away. Waiting out distance learning is an increasingly grim option for struggling families.

“I don’t know how much longer my family is going to make it,” said Nina, the mother of two children with disabilities. “It’s hurting my child every single day that she is in this situation,” Nina said about her oldest child.

With some prodding on the part of special education advocates, things are starting to look up for families who are struggling.

Special education is one of the key issues for Ana Vasudeo, a parent of a six-year-old kindergartener with a disability, who was just elected to the school board in November. Distance learning has had its hiccups for her son, but with support from BUSD educators, she’s figured out ways to make it work for him. Vasudeo had to reduce her work hours when schools went remote, devoting the additional hours to helping her children with distance learning. For her son with special education needs, she had to transform his room, pasting a large visual calendar on the wall, picked up sensory tools from the district’s occupational therapist, and started keeping up with his assignments on Seesaw, the classroom app used in Berkeley elementary schools during distance learning. It’s been going reasonably well, given the circumstances.

Vasudeo is pushing for better communication between the district and families who have students with disabilities. Since the first town hall in August, there hasn’t been one dedicated to addressing the specific needs these families face, although one is slated for January of 2021.

“There needs to be that open dialogue specifically for that community. I’m lucky that I have a flexible employer and can spend time supporting my son, but that’s not a reality for many families. We don’t want our most vulnerable students to fall further behind,” she said.

In November, the virtual IEP assessments have slowly picked up, which could mean a host of new services for students who badly need them. Still, BUSD cautions against evaluating too hastily. “Learning loss can occur for all children, and determining if a child has a learning disability versus learning loss is the challenge. These are unprecedented times and BUSD is working hard to meet these challenges under these current circumstances,” wrote McDermott in an email.

At this point, the school district has not provided Berkeleyside with assessment data that would reveal details about learning loss, including for special education students. Districts across the Bay Area are seeing spikes in the number of students with failing grades, a potential indication of the impact on learning.

Meanwhile, advocates like Theis and Washburn will keep informing parents of the services their children are entitled to. “Parents don’t realize they can say, ‘I don’t want there to be a reduction in hours, I actually need more support for my kid’,” said Washburn. “I wish the process was more transparent, and it’s even less transparent during COVID.”

After a recent IEP meeting, the district hired a private aide to meet virtually with Mia an hour each afternoon, providing the one-on-one support she has been sorely missing. They work on literacy skills together and play games that help Mia make progress on her goals. The aide is positive, energetic; Mia likes her. “She lights up to do work that is on her level. I think it is because the stress of trying to access education that is not on her level has been removed. She feels successful and excited.”

Alexa wishes “it hadn’t taken this long to get services like this in place” but she says she is grateful to see Mia happy and learning once again.