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Family faces long waits to get help for son with autism

Anna Tobias waited six months for her son, George, to be diagnosed with autism spectrum disorder and then another year for him to be assigned a support worker while he’s in daycare.
Anna Tobias and her husband, George Pine, are struggling to find one-to-one care for their 41Ú2-year-old son, George , who has autism spectrum disorder.

Anna Tobias waited six months for her son, George, to be diagnosed with autism spectrum disorder and then another year for him to be assigned a support worker while he’s in daycare.

George, now 4 1/2, theoretically has 24 hours a week of one-to-one support, but a lack of child-care staff and rules on when he can access that support means that he is sometimes left struggling.

The provincial and federal governments recently announced major investments in child care in B.C., including money to improve programs for children with special needs. Tobias is sharing her story to shed light on some of the shortcomings of the current system.

George was almost three when his parents, concerned about his speech delay, took him to see a pediatrician. He was referred to the Queen Alexandra Centre for Children’s Health; six months later, he was diagnosed with mild to moderate autism.

The B.C. government gives families of children under six up to $22,000 a year to pay for autism-related therapies, including a one-to-one support worker while the child is at daycare.

“The problem is the wait-list is over a year,” Tobias said.

Support workers, also known as behaviour interventionists, work with the child and can carry out exercises to address communication skills or behavioural issues, for example.

Whether George gets one-on-one support depends on whether his daycare, Victoria’s Cridge Centre for the Family, can find staff.

“He gets one-on-one support as often as we can find the extra bodies,” said Joanne Specht, a spokeswoman for the centre.

“But there are occasions when he doesn’t get the support because there’s no one to fill the position.”

Low wages of between $15 and $17 an hour are a major barrier to finding qualified staff in the field, Specht said.

There are other barriers.

To be eligible for the funding, Island Health requires parents to be at work or in school during the hours when the child is in daycare.

Specht said those rules “are great for the person who works nine to five, but what about shift work, what about weekends?”

Tobias, a social worker, and her husband, George Pine, a housing support worker, have some evening shifts, which means there are two days a week when their son can’t access support.

“The system is incredibly inflexible,” Tobias said.

In a statement, Island Health said its practice is to “collaborate with families around the work and/or school schedules of the child’s primary caregivers. Where possible, authorization and specific hours are set to support the child and the family unit.”

The federal government is giving B.C. $153 million over three years to help reduce child-care fees for parents, create 1,370 new infant and toddler spaces, and provide bursaries and grants to recruit new early childhood educators.

Katrine Conroy, B.C.’s minister of children and family development, has said that some of those funds will be used to enhance programs for children with special needs.

The province has earmarked $1 billion over three years to lower fees, provide child-care subsidies for low- and middle-income families and create 22,000 child-care spaces.

Tobias said she’s happy to hear that there will be more money to help families of children with special needs, but said there needs to be a structural overhaul that allows the system to be more parent- and client-focused.

“We are the experts in our children,” Tobias said.

She hopes that child-care providers will be given funding to increase wages for early childhood educators and behaviour interventionists.

Without that, Tobias fears “the Cridge and wonderful organizations like that won’t be able to sustain children with disabilities because they won’t have the structural support they need.”

Andrew Pinfold, Autism B.C.’s director of operations, said waiting six months to a year to get help for their children, especially in the crucial formative years, is difficult for parents.

Many parents who believe their child is on the autism spectrum pay up to $3,000 for a private diagnosis instead of waiting, Pinfold said. But for parents with lower incomes, this is not an option.

As for the wait for support workers, Pinfold said it’s often a case of “the squeaky wheel gets the oil” and that children with more acute behavioural issues will get support much quicker than children with moderate challenges.

Pinfold has two children who are on the autism spectrum, and said both have received support that has allowed them to thrive.

But he also hears from parents with stories similar to that of Tobias.

Pinfold met with Conroy last week and asked her to increase funding for parents of children with autism. The $22,000 a year hasn’t changed since 2010, he said.

In a statement, the ministry said: “Our government recognizes the need for more supported child development. That’s why we are investing $30 million over the next three years through our [early-learning and child-care] agreement with the federal government to cut wait-lists and help families whose children have special needs to find the specialized child care they need.”

Island Health receives about $4 million a year for supported child development programs from the ministry.

It’s receiving an additional $304,389 for the program this year and expects an annual increase of $141,024 beginning Oct. 1, said Island Health spokeswoman Meribeth Burton.

Pinfold called it good news.

“The supported child development program is never perfect for anyone, there’s always going to be shortcomings,” he said.

“An enhancement of this program will be fantastic. And I think for some families it will be a real game-changer.”

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