British Columbia

B.C. mothers of children with autism plead for more government help during COVID-19 pandemic

With support workers unable to visit clients and schools closed, parents and advocates are calling on the Ministry of Children and Family Development to relax funding rules to better accomodate complex care needs.

'Our kids are just falling through the cracks one more time'

Baker Strutt, 6, and his brother, Zack, 8, have both been diagnosed with autism spectrum disorder but are unable to have the learning and care support they would normally receive at school. (Dena Ashbaugh)

Dena Ashbaugh's eight-year-old son, Zack, had one goal in Grade 3.

Zack Strutt, who is dyslexic and on the autism spectrum, wanted to learn how to read one page of a book by himself. But with schools shut due to COVID-19, Ashbaugh doesn't think it will happen for him this year.

"As a mom, it is heartbreaking," she said. 

The North Vancouver resident has two children on the autism spectrum. Her youngest, Baker Strutt, 6, has also been diagnosed with pathological demand avoidance, which makes him prone to violent outbursts when asked to do routine tasks.

The family is one of many in British Columbia who are struggling to meet the complex care and educational needs of children with autism in the midst of a pandemic. 

With support workers unable to visit clients and schools closed, parents and advocates are calling on the Ministry of Children and Family Development to relax funding rules so more can be done to provide for special needs children and their families.

Recommendations to province

Deborah Pugh, executive director of Autism Community Training (ACT), said the organization has been pushing the ministry for weeks to provide guidance to families and made recommendations in mid-March about how they could help.

Children over age six in B.C. are allotted $6,000 annually for supports like speech therapy, respite workers and behavioural interventionists. Families must spend the money within a year by the child's birthday or it is lost.

ACT wants the ministry to let the money roll over into the next year, because so many services are unavailable right now.

Deborah Pugh, executive director of Autism Community Training, said the organization has heard nothing since making recommendations in mid-March to the Ministry of Children and Family Development about how to help families cope with complex care needs during the COVID-19 outbreak. (CBC News)

Campbell River resident Justine Taylor has a son, Emery, 12, and a daughter, Hadley 8, who are both on the autism spectrum and have birthdays in May. Taylor said she is set to lose $1,500 per child in needed money next month.

She said the ministry told her to look for online solutions to help her kids, which she said is not a solution for some children on the spectrum, such as her son, who has issues with social and emotional regulation.

"It feels like our kids are just falling through the cracks one more time," said Taylor.

Emery Taylor, age 12, with his service dog Louie. Emery Taylor's mother, Justine, says it is very challenging for her son, who is on the autism spectrum, to work online. (Justine Taylor)

Another recommendation made by ACT and echoed by Taylor and Ashbaugh is for MCFD to remove restrictions on money that can be spent on equipment recommended by support workers.

Twenty per cent of the funding families receive is meant for equipment support workers think can benefit the children. ACT would like that cap lifted so families can do more now.

Taylor said the ministry recommends families look for online learning and support resources and this money could help families buy iPads so their children can connect to support workers and online educational tools.

Missing school supports

The Taylor children are educated at home, but the Strutt boys usually attend school. Their mother is also hoping the Ministry of Education will find ways to help special needs students.

Ashbaugh, who was diagnosed with autism herself last summer, says she is struggling to provide 24/7 care for her children who are used to a team of support workers at school.

"I am the person, out of a whole web of support, I am the last thread holding all of that weight," she said, her voice breaking with emotion. 

Emery Taylor, 12, stands behind his younger sister Hadley, 8, and Rory, 4. The two elder Taylor children have both been diagnosed with autism. Justine says if the province relaxes funding rules for children with autism she would like to buy weighted blankets to help her children regulate anxiety. (Justine Taylor)

Karla Verschoor, executive director of Inclusion B.C., says the Ministry of Education should step up to help. It has said schools will stay open with limited staff to support children whose parents are essential front-line workers

Verschoor suggests they also prioritize one-on-one support for students with special needs when safe to do so.

In a statement, the Ministry of Education said it is working with MCFD to support families with children who have autism, including continued service and support to families from a range of programs.

It said school districts have been asked to ensure they have access to continued learning at home and to consider alternate delivery models for specialized supports.

CBC reached out to the Ministry of Children and Families April 1 and has yet to receive a direct response.

With files from The Early Edition and Belle Puri

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