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A mother and her son communicate using a PECS binder about what is happening next in their day.

Kristy Wolfe/The Canadian Press

Victoria O’Connor says she’s reached a breaking point while constantly managing and advocating for the supports she needs for her twin sons, who are non-verbal and have been diagnosed with autism.

“We are very much a family in crisis,” the North Vancouver, B.C., mother said in an interview.

One of her eight-year-old sons has been experiencing pain that doctors have yet to diagnose, which can cause him to cry and scream for hours at a time, frightening his brother, she said.

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“I just sort of feel like it doesn’t matter how bad your situation is. You’re still going to have to jump through a million hoops,” she said of navigating B.C.’s support program for children with special needs.

O’Connor’s is among 545 other families who lent their voices to a survey and report out Thursday from British Columbia’s representative for children and youth, which shows the COVID-19 pandemic has exacerbated long-standing problems with the province’s system, leaving families feeling abandoned.

Jennifer Charlesworth said it was impossible to examine the impacts of the pandemic outside the context of what she called an outdated and inequitable system for children and youth who have disabilities, chronic health issues or neurological conditions.

“For far too many of the tens of thousands of B.C. families of children and youth with special needs, there is no down time,” the representative said during a news conference.

“The common dreams of any of us – a good education, bright future for our children, a safe and comfortable home for everyone in the family, even a rare night off – can be tragically elusive.”

The long wait times for diagnoses mean kids in B.C. may pass through their early years without access to supports unless their families can pay for private services, said Charlesworth, and the funding caps for purchases of key pieces of equipment that help keep children comfortable haven’t changed in 30 years.

For families who are receiving funding after a diagnosis, the pandemic brought a sudden end to vital therapies and support services at home, in the community and at school, she said.

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“We all need a break from our hectic lives sometimes, but respite for families of children and youth with special needs vanished overnight at the start of the pandemic and for many families remains that way.”

The report calls for immediate action in eight areas, including the creation of a family-engaged communication strategy in the Ministry of Children and Family Development and the extension of all pandemic-related benefits until next fall for families of children with special needs.

Asked “What do you need right now during the pandemic?” 60 per cent of survey respondents said they needed to know whether their family was eligible for any pandemic-related supports in the absence of clear communication and regular contact with social workers.

The province offered families a monthly emergency benefit of $225, though just 28 per cent of families surveyed reported receiving it and Charlesworth noted it expired at the end of September.

The first round of emergency funding reached more than 1,300 families between April and June, the children’s ministry confirmed in an e-mail, and another 3,000 families received the money between July and September.

Children diagnosed with autism under the age of six may receive up to $22,000 each year and youth aged six to 18 are eligible for $6,000.

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B.C. offered their families an extra three months to use unspent money if the timing of their birthdays meant they were set to transition from one level of funding to another during the pandemic, as well as some flexibility in how the funds could be used.

But O’Connor said accessing the funds that cover certain therapies, equipment and respite care is often too complicated and frustrating, and she knows families who weren’t using all their money as a result – even before the pandemic disrupted access to support services.

“I’m the kind of person, like, I’m going to get that funding used for my kids if it kills me,” she said. “Generally it does burn me right up.”

Mitzi Dean, the minister of children and family development, responded to the report, saying she knows families are struggling and has asked staff to expedite a new provincial framework for supporting children and youth with special needs that was in progress before the pandemic.

“I want to hear directly from those who are affected,” Dean said in a statement. “That’s why I have asked ministry staff to set up an advisory council to help ensure those voices are heard.”

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