As families across Canada struggle to adjust to school closures that could last indefinitely during the COVID-19 pandemic, families of children with special needs are being especially hard hit.
“It puts a normal, typical family into crisis. It puts our families in a crisis, times two or three,” said Phil Richmond, whose two sons Jake and Harry, ages 20 and 18 respectively, have a rare genetic condition with a variety of complex special needs.
Public and private schools in Ontario have been closed since mid-March. Premier Doug Ford announced Tuesday that they will remain closed at least until May 1 for teachers, and May 4 for students.
The Richmond boys attended specialized schools in Toronto that offer intensive support for students with developmental disabilities. Students are taught by special education teachers and cared for by multiple helpers throughout the school day.
That support network does everything from administering students’ medical needs such as gastronomy tubes for eating or catheters for urination, to providing speech therapy or manage behavioural meltdowns.
Now, Jake and Harry’s care team is just mom and dad.
“To have that pulled out from under your feet … it’s pretty isolating and it’s pretty hard,” said Richmond. “It’s all on our laps.”
Full-time teachers, caregivers while working from home
In addition to being forced into the roles of full-time caregivers and teachers, Richmond and his wife Hayley are also struggling to keep up their paying jobs from home.
Phil is an investment advisor. Hayley is a high school guidance counsellor. They juggle their work days to ensure one adult attends to both boys while the other works.
It’s a complicated feat. Harry is non-verbal, uses a wheelchair, and experiences a muscle disorder known as dystonia. Jake requires a walker to move about.
“If he needs to get up and go to the bathroom, that’s a safety issue. So we need to drop what we’re doing and look after him,” said Phil.
“We’re just trying to get a bit of a rhythm to it, where we’re not abandoning our kids too much and we’re trying to work to keep paycheques coming in.”
Support networks disappear
Not only are schools closed, but so are community centres or after-school services relied upon by many families who have children with special needs.
The disappearance of support networks and opportunities to socialize can add to “the basic anxiety and stress” for parents of special needs children, according to an expert in special education.
“It’s exacerbated by the community shutdowns, which are absolutely necessary. And parents don’t have resources. They don’t have respite care. They don’t have other workers coming in,” said Sheila Bennett, associate dean of education at Brock University.
In the Richmonds’ case, home care aides usually visit after school to help clean and bathe Harry and Jake. But the family made the difficult decision to cancel that extra set of hands during the pandemic, because the caregivers serve multiple families.
“We didn’t think, from a ‘passing COVID’ perspective, that we wanted someone who is seeing so many people coming into the home. So, we’re on our own. I think a lot of other people make those sorts of choices,” said Richmond.
Schools need ‘a closer connection’
When it comes to education, Bennett believes access to the same technologies and resources students get in the classroom will be critical to ensuring special needs children continue to learn at home.
“We can’t assume that all families have the types of things that encourage learning and create opportunities for learning. So we have to bridge the technology gap and we have to bridge the material and resource gap.”
On Tuesday, Ontario Education Minister Stephen Lecce announced a new “teacher-led” program to keep students learning while at home.
The plans will incorporate training for educators to better enable them to teach online, and could see schools distribute laptops or other devices to students who need them, Lecce said.
Bennett recommends schools check-in with families of special needs children, whether online or by phone, and get learning resources to them “in a pandemic-safe way” — everything from online lesson plans to multi-sensory boards for communication.
“With children with special needs, we need to make a closer connection,” said Bennett.
“We need to be … in contact with the parents more, so that we can enrich what’s going on at home and make sure that the parents feel that they have support.”
Phil Richmond says it’s been comforting to hear from his sons’ schools since the closure.
“We’ve had our schools reach out to us and say, ‘How are you doing?’ You know, that means a lot. It’s pretty amazing.”
For parents of kids with special needs who worry the disruption in school routines will cause children to lose skills or learning opportunities, Bennett sounds a reassuring note.
“Remember, we see learning loss during the summer for all kids as well. A learning loss that is exacerbated by the longevity of this pandemic … they [teachers] are going to be prepared for that.”
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