Families of neurodiverse kids left scrambling before school starts: advocates

Risk too high due to COVID-19

Kaye Banez cried with relief after learning that her eight-year-old son Lazarus, who is on the autism spectrum, can enrol at his school remotely this fall.

The mother in Richmond, B.C., said school staff told her earlier that Lazarus would need to return to his Grade 6 classes in person by mid-November or face removal from the independent school.

The risk is too high for Lazarus to go back at this point in the COVID-19 pandemic, said Banez, since he relies on touch to sense the world around him and struggles with physical distancing.

“We’re also trying to keep everybody around him safe,” added Banez, noting she has diabetes and her kids’ grandparents on both sides of the family have compromised immune systems.

Banez said it was agonizing as her family worried they would be forced to register Lazarus and his six-year-old sister for home schooling. That would mean Lazarus would lose access to supports, such as speech and occupational therapies, that are paid for through funding that depends on enrolment in school or a distributed learning program — many of which are at capacity, she said.

After meeting with staff from her kids’ school and the Ministry of Education’s inclusive education division on Friday, Banez learned about provincial guidelines that stipulate school districts are required to make so-called “homebound” educational services available to students absent from the classroom because of medical and psychiatric reasons.

The expectation that schools work with families who need access to the homebound program is included in the province’s document guiding the response to the pandemic for students in kindergarten to Grade 12.

However, Banez said she is in touch with another mother on Vancouver Island whose child is on the autism spectrum and who hasn’t yet secured a remote learning option through their school.

“She’s done everything that I’ve done and the answer is still no. So, she’s doing now another step of saying she’s aware of this operational guideline,” said Banez, who serves as the vice president of the board of directors for AutismBC.

“It’s still very inconsistent. Even though the process that parents take to advocate for these accommodations is the same, there’s still children being left behind.”

It shouldn’t be up to parents to explicitly invoke their rights in order to ensure their kids can access the educational instruction and other supports they need, said Banez.

That’s especially true for parents who are newcomers to Canada and may struggle navigating back-to-school resources that are available primarily in English, she added.

“How could they possibly be calling government officials, school boards, principals, media, writing letters, reading operational guidelines (and) documents pages and pages long?” she asked.

The founder and chair of BCEdAccess, a volunteer-run organization that advocates for equitable access to education for complex learners and kids with diverse abilities, echoed Banez.

Tracy Humphreys said she’d like to see schools and districts reaching out to families directly to build educational plans that address their unique needs.

“The public system has had months now to be aware that there’s a pandemic and that September was coming and that they needed a better plan. It does feel like families, like children with disabilities, have been left out of that plan,” said Humphreys.

In an email, Ministry of Education representatives confirmed their expectation that school districts will be flexible and work with families on a case-by-case basis, including helping families of children with disabilities who aren’t comfortable sending their kids back to the classroom this fall.

But with school starting in a matter of days, Humphreys said she’s waiting for flexible options that meet provincial requirements and expectations to be fully implemented across the province.

“We’re seeing, you know, 60 school districts, plus independent schools, who are under the same direction from the Ministry of Education, responding in very different ways,” she said.

As for Lazarus, Banez said he’s excited to start what they call “mommy school” on Sept. 21.

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