B.C. kids with autism and their caregivers lack support during pandemic: survey

The fallout from the COVID-19 pandemic has cut off supports for children with autism and their caregivers, leaving them feeling abandoned by the British Columbia government, advocates and researchers say.

The neglect of neurodiverse kids with special needs has been “so overwhelming that something fairly radical has to be done by this new government if families are going to rebuild any trust,” said Deborah Pugh, the executive director of ACT – Autism Community Training.

Pugh said she was “stonewalled” by provincial officials in the New Democrats’ last minority government and she’s calling on Premier John Horgan to help now that he has a newly elected majority.

“It’s not just a matter of throwing money at this,” Pugh said in an interview. “We need a change in the whole attitude towards children with special needs and their families in the province.”

A representative for the Ministry of Children and Family Development said in an email the province is committed to providing people with the services they count on, and to improving access to supports for children and youth with special needs.

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Pugh’s organization partnered with the autism and developmental disorders lab at Simon Fraser University for a survey of 238 caregivers of children with autism in B.C. asking about their experiences from March to June.

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The survey showed the majority of caregivers reported their child’s anxiety, tantrums, routines and sleep quality had worsened, while parents’ own well-being declined and provincial supports in response to COVID-19 were insufficient to meet their needs.

Grace Iarocci, a psychology professor who directs the university’s autism lab, said caregivers were already struggling with lack of supports and higher rates of depression before COVID-19 hit.

The survey also showed 37 per cent of caregivers were concerned their child might physically harm another family member, while nine per cent had considered putting their child into government care.

Giving up your child is a last resort and the results suggest parents are under such pressure they feel they can’t cope, said Iarocci.

“I don’t think governments want to see families giving up the care of their children,” she said, noting that would add financial costs for the province.

The pandemic has meant high-need children and youth who struggle with communication have had “everything in their lives pulled out from underneath them,” said Pugh, from specialized supports at school to respite care to therapists who are no longer visiting families and children at home to provide one-on-one care.

“They can’t understand why they can’t go to their favourite toy store, why they can’t go swimming, why they can’t go to school, why their favourite respite provider _ they can no longer see them,” she said.

Some service providers are working remotely, she said, but that’s not a viable option for many kids who find it difficult to connect online.

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The families of kids diagnosed with autism under the age of six may receive up to $22,000 each year to pay for certain supports and youth aged six to 18 are eligible for up to $6,000.

But Pugh said families won’t see all of that money since many services simply aren’t accessible during the pandemic and it typically doesn’t carry forward into the next year.

The province offered caregivers whose child was turning seven or 19 and transitioning from one level of funding to another in the wake of the pandemic three extra months to use unspent money.

B.C. has also increased the amount of funding that may be used to pay for equipment and family counselling, the Ministry of Children and Family Development said, and many families weren’t using fully utilizing their funding before the pandemic.

One in 66 children has been diagnosed with autism in Canada and 18,000 are receiving funding after being diagnosed in B.C., said Pugh.

She and Iarocci are urging the province to allow for more flexibility in its autism funding program, letting families to use the money over a longer period of time as the pandemic wears on, and to expand the range of support services where the money can be used as caregivers themselves step into therapy roles.

In Langford, B.C., Vanessa Taylor said she’s on leave from her job while caring for her eight-year-old son who has autism, as well as her kindergarten-age daughter who is set to be assessed next year.

Taylor said she struggled to secure specialists to work with her son both at his school and in the community before the pandemic, which has further dried up their options for support services.

“You’re left with families that are dealing with compassion fatigue, they’re dealing with having to juggle everything, like they’re having to be the speech therapist, the occupational therapist, the teacher.”