Funding delays plague families of children with autism and their support workers

Professionals who provide services for children with autism say the approval process for government funding requests has become so slow that some have been forced to cut off some clients, despite their dire needs.

Some parents of children with autism spectrum disorder are urging the province of B.C. to speed up the reimbursement process as they're being left carrying debt, stress and guilt over not paying for speech pathologists or other daily behaviour therapy supports.

However, in an email, the provincial ministry involved said the majority of the files are not delayed, and if they are it's because of "incomplete or inaccurate" forms. 

In B.C., families with kids under the age of six can access up to $22,000 per year to help cover the costs of autism-related services and therapies — to help improve communication, social and academic development — from approved service providers. Children aged six to 18 years old are eligible for $6,000 in support. 

Some parents who use the process say getting approved and then reimbursed for services can take months, but the delays are even worse during the holiday season.

"It's very stressful dealing with the funding. It makes me feel sick sometimes. I wish I didn't have to deal with it," said Ashley Campbell, Vancouver Island mother of Liam, 6, who has autism.

She said for her family, behaviour therapists and speech pathologists are often involved every day, especially as she has three young children. 

"My son is thriving. My family is doing well, but I'm not paying providers," said Campbell, who feels anxious when the support workers she depends on aren't getting paid. 

Campbell said she has waited up to five months for payments from the Autism Funding Branch of the Ministry of Children and Family Development to process. 

As a result, she has ended up paying up to $100 for tools her son needed right away and carrying that debt for months.

Ministry responds

In an email to CBC News, the Autism Funding Branch said processing times have never exceeded the department's standard of completion within 30 business days — and in most cases it's just 15 days.

A ministry spokesperson said funding approval can take longer if forms are "incomplete or inaccurate." 

The ministry also blamed recent delays on a "seasonal fluctuation in the amount of documentation received," but said the files were still processed on time and additional staff have since been scheduled. 

The ministry spokesperson said, "Parents of children with autism deserve to access funding and services in a timely manner, and we're working hard to ensure that happens."

The ministry is urging families with concerns to call the toll free help line at 1-877-777-3530. 

'It's devastating'

Dozens of other parents chimed in after reading a post on social media, telling similar stories.

Jemana Elsharkawi runs Salish Sea Behaviour Consulting and provides parent support for families from Nanaimo to Fort St. John. Elsharkawi said of her 60 clients, half have faced long delays.

She said it is not fair to expect service providers to work for free.

Elsharkawi described submitting funding requests that have not been approved for six weeks or longer. In a few situations, the initial request for coverage dates back to August, she said.

At one point in 2016, it took so long to get paid that she and her husband were owed $20,000. They had to drain their savings and live on credit. 

Elsharkawi's husband works for the federal government, which compounded their problems. The government's Phoenix payroll system has been plagued by problems, leaving many staff unpaid or paid incorrectly during the past year.

Elsharkawi said other service providers have been forced to cut off clients, leaving many in smaller communities with no other option, and a child in need of behavioural therapy and support.

"It's devastating," said Elsharkawi.

"It's ridiculous. There is no reason why this should be happening."