As restrictions ease, parents of special needs children ask: What about us? | #specialneeds | #kids


11-year-old Addison Carroll attends Founders Memorial School in Essex remotely thanks to the “Addibot.” Courtesy photo

In the very early days of the pandemic last spring, Tammy Carroll, a mother of three in Essex, echoed so many parents of special needs children when she called her situation “impossible.”

Addison, her then-9-year-old daughter, relied on a panoply of intensive services from school, and it felt unthinkable that these might be successfully replicated in a newly all-virtual world, she told VTDigger. 

But more than a year later, Carroll could not feel more differently. 

A state Medicaid waiver allowed her family to receive enough cash assistance as Addison’s caregivers for her husband to quit his job and take care of her full-time. School officials at Founders Memorial School built an entire virtual academy in-house for families who wanted to learn remotely.

And a remote-controlled child-sized robot with a mounted iPad — affectionately nicknamed the “Addibot” — lets Addison roam around the halls of her school safely from home.

The ‘Addibot” allows 11-year-old Addison Carroll to roam the halls remotely at Founders Memorial School in Essex. Courtesy photo

“Honestly, for our family, this pandemic has literally been a gift. It has provided Addison with the education that she deserved — always,” Carroll said.

Addison’s experience is not universal. For countless families, managing the needs of medically complex children while juggling work and school has been more difficult, not less. Nevertheless, the pandemic created — and made ubiquitous — once unimaginable accommodations, mostly because virtually everybody needed them.

But now, as vaccination rates steadily climb and the rest of Vermonters rejoice in their new-found freedom, many families with young, high-risk children are feeling left behind. And they’re wondering what will happen to the flexibility, support and remote-access options that workplaces and schools readily provided at the height of the pandemic.

“We’re kind of sitting here saying no, like, we have a young child who’s high-risk and who is not vaccinated yet. Nothing’s changing for our family,” said Annie Hoen, an associate professor of epidemiology at Dartmouth College whose 5-year-old son has been hospitalized multiple times for simple cold viruses.

Gov. Phil Scott has announced that the state will ease most restrictions when 80% of eligible Vermonters receive at least one dose of the Covid-19 vaccine. That’s likely just days away. On Friday, Education Secretary Dan French confirmed that schools could nevertheless finish out the last remaining weeks of the school year with their schedules as-is, and would not be expected to open for full-time, in-person instruction if they were not already doing so, even once the 80% threshold is met. That leaves remote schooling options in place — for now.

The fall will be different, French said, and the expectation will be a full return to in-person learning, five days a week. Families who want remote accommodations will have to make their case based on disability protections that existed pre-pandemic.

“I think the big open question is how do we serve those families,” said Jeanné Collins, a past president of the Vermont Superintendents Association, speaking on behalf of the group.

The Agency of Education’s latest guidance still leaves unclear exactly how much flexibility, legally, schools will have to accommodate families who want to stay remote. But Collins, the superintendent in the Rutland Northeast Supervisory Union, adds there’s also the larger question of logistics.

It was hard enough to build a remote learning system when a critical mass of people needed it. What happens when it’s only a handful of students per district?

“We just have no idea of the numbers, whether or not we can even build a system,” she said.

And that, in a sense, is exactly what people in the disability community fear. 

“Covid kind of forced all of these accommodations in our society to be implemented because they were needed by everybody,” said Hoen, of Dartmouth. “What people are saying is — and what I’m feeling, to some extent — is that’s all going to go away now.” 

11-year-old Addison Carroll attends Founders Memorial School in Essex remotely. Courtesy photo

Kele Bourdeau, whose 12-year-old son is autistic, said this year of remote learning redefined what inclusion meant to her. Pre-Covid, her son was included in general education classrooms, but the experience of being in class was often overwhelming and traumatizing, despite his teachers’ best efforts. Bourdeau recalled one time her son bolted from school and climbed so high up a tree that the fire department was called.

But with remote learning, he has thrived. Bourdeau’s son joined chess and sci-fi clubs, and even took a seat on the superintendent’s student advisory committee. He became engaged, started finishing work, and now talks excitedly at the dinner table about what he had learned that day.

For Bourdeau, inclusion once meant proximity, or “being in the room.” Now she thinks it’s participation — whatever form that may take.

“We had to make his world smaller so that he could actually reach out and take up space within it,” she said.

If he’s forced physically back into the classroom, Bourdeau thinks she’ll have no choice but to homeschool. School officials in Burlington have told Bourdeau they’re evaluating the state’s latest guidance to see what they can do next year. 

“I’m cautiously optimistic,” she said.

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