Crisis engulfing special needs kids
Families unable to access programs, emergency funds during pandemic
An astonishing number of families raising special needs children have been unable to access government respite funding and emergency supports put in place in response to the COVID-19 pandemic, according to a special report by B.C.'s representative for children and youth.
The pandemic has cast a harsh light on a “crisis decades in the making” for families that rely on support for children with lifelong disabilities, neurological conditions and chronic health problems, wrote Dr. Jennifer Charlesworth in “Left Out: Children and youth with special needs in the pandemic.”
The chaos sown by lockdowns, distancing requirements and disruption to schools due to COVID-19 “amplified the inadequacies” of the system.
“At a time when many (children and youth with special needs) families were experiencing less support than ever, thousands of children with special needs missed essential medical appointments and had their therapies, services and routines come to an abrupt end — in some cases, for six months or more,” the report notes.
Cancelled therapy sessions mean kids fall behind or lose skills that develop slowly over time, cancelled surgeries lead to pain and medical complications, and if children can't attend school, their social lives essentially vanish, parents say.
“All the challenges that every one of us faced in those first few months were compounded to these families,” Charlesworth said Thursday.
Last spring, the Ministry of Children and Family Development announced an emergency relief benefit of $225 a month for kids with special needs and their families to pay for assistance with homemaking, meal preparation, and other services meant to provide rest time for primary caregivers.
However, a survey of more than 1,000 eligible families found that nearly 70 per cent weren't able to use that funding as the pandemic took hold.
Not much had changed by November, when a new survey found that 55 per cent of families eligible for respite funding still weren't able to make use of that money.
“The impact of the pandemic disproportionately affected families of special needs children, who are also Indigenous and Black, families of colour, newcomers and refugees, along with low-income and single-parent families,” Charlesworth wrote.
Sunshine Coast mother Danni Leigh du Preez was able to access the emergency benefit for her son Max, who suffered a brain injury soon after arriving in Canada from South Africa.
But instead of using the funds to hire domestic help, she spent the money to take Max to speech therapy in Vancouver every week after the service was discontinued in her community. But rising COVID-19 numbers have cancelled his Vancouver therapy, too.
Adding to her worries, Max hasn't been enrolled in the Medical Services Plan due to passport issues.
“He could have a seizure, he's partially blind, so he could fall at any time and that's a real worry,” she said.
The November survey of 545 families found that 45 per cent had no communication with their case worker during the six months when emergency measures were imposed, and 63 per cent have still had no contact after restrictions were lifted.
“Chronic communication issues with case workers meant that many families weren't able to access emergency services and some weren't even aware that they existed,” the report notes.
More than 22 per cent of families said they still haven't been able to access provincial emergency benefits, the November survey found.
“We weren't told about the increase to the 35 per cent for equipment with autism funds until five days before it ended, which wasn't enough time for us to utilize it,” one family said in the survey.
When the pandemic hit last spring, Variety: The Children's Charity saw applications for grants double, said CEO Cally Wesson.
The charity was so overwhelmed by the demand for help from spe
cial needs children that the group temporarily stopped taking applications for the first time in its history.
“We had 300 kids at that moment, waiting for help,” Wesson said. “But our fundraising is eventbased, so the pandemic cost us about $1 million.”
Variety helps parents buy special equipment, such as orthotic devices, that run into the thousands of dollars every few years.
“If you're a family with typical income, what are you going to do when your child needs a wheelchair that costs more than my car?” she asked.
The government responded to the representative's report with a pledge to overhaul the framework “to support a broad range of families.”
“I want to hear directly from those who are affected,” said Mitzi Dean, the newly appointed minister of children and family development. “That's why I have asked ministry staff to set up an advisory council to help ensure those voices are heard.”
She encouraged families who are struggling to reach out to special needs workers to “explore all options and help connect you with the help you need.”