Families say increased autism funding isn’t enough

The provincial government is upping funding for some families dealing with an autism diagnosis, while others feel left out in the cold.

In this spring’s budget, the province increased the individualized funding for children diagnosed as being on the autism spectrum from $4,000 a year to $6,000. The province estimates about 700 children will be eligible for the funding.

However, families are saying there’s not much help in Saskatchewan for the rest of those kids’ lives.

“It’s wonderful that they give the funding for the kids, especially under six, but for the kids that are over six it’s not fantastic, we could really use some funding as well,” said Erin Nystrom.

Nystrom’s two children are both on the autism spectrum, but both are too old to benefit from the increased funding. Nystrom said she doesn’t know anyone with children young enough to qualify for the funding.

She explained she doesn’t qualify for the disability funding the province provides, and there isn’t much else for her to access when it comes to help with bills.

The occupational therapy that is best for her kids costs $1,000 a month. Nystrom said they would actually benefit from going every week, but she can’t afford that. And now she has had to cut back on her hours at work because one of her children won’t go to school.

“So it’s tough, if you have to be available more at home and you can’t work as much to bring in the income to afford the therapy,” Nystrom said.

On budget day, when asked why the funding stops at age six, government representatives said after six the school system can take over supports.

Nystrom strongly disagrees.

“Not at all, that is an absolute myth. I can’t believe they’re still perpetuating that. That is not true,” said Nystrom.

She said she has been told by an occupational therapist that the school system in Saskatoon her children attend doesn’t have the resources to give her kids what they need.

Private help

The help in Saskatchewan for these families is getting fewer and farther between all the time.

At the end of April, the Casey Foundation will be dissolved. It’s a foundation that fundraises and then distributes the money to families with children who have autism to help defray the costs of things like therapy, equipment and programming

The foundation says in 15 years of operation, it distributed about $950,000.

Nystrom’s family is one of those which has received help from the foundation in the past. The foundation’s founder declined an interview request, but its website says the demand for its services is so high it can’t keep up, so the foundation is being shut down.

Numbers from 2015 reported by the Government of Canada show that one in 66 children between five and 17 have an autism diagnosis.

This will be the second autism resource in Saskatchewan to shut down in about six months. Saskatchewan Families for Effective Autism Treatment (SaskFEAT) closed its doors in October.

Arden Fiala was the last president of SaskFEAT. She said it shut down because the group couldn’t find people willing to serve on its board.

Fiala said parents with children on the spectrum are tired – they’re trying to help their children and keep their family units together, so many weren’t willing or able to give the time to volunteer.

Fiala said, in a way, the two private groups allowed the province to not help these families.

“The government has asked charities like the Casey Foundation or SaskFEAT to be the ones parents go to for funding, instead of doing their due diligence.”

The loss of the two groups is going to leave a big gap, one Fiala feels the province should fill. She said there aren’t any other groups doing the work the Casey Foundation did when it comes to funding, and SaskFEAT did in terms of advocacy.

Fiala has kept the SaskFEAT email active, trying to help those parents who reach out.

“So, if a parent could connect with SaskFEAT, even if it was minimal resources or I might not be able to find the resources, I could connect them to another person in the province or another parent or someone so they would not be so alone,” Fiala said.

Fiala has been pushing for equal access to good, evidence-based programming for years, which means access even in rural areas. She said in some parts of the province there are almost no programs.

“When a parent connects with me, (saying), ‘My child was just diagnosed, now what do I do?’ It’s heart-wrenching to say, ‘There’s nothing for your child,’ ” Fiala said.

She also thinks the province needs to expand its funding, providing supports for a person’s lifespan. Fiala said a diagnosis doesn’t go away just because someone turns seven or 18.

“The bottom line is they will always be on the autism spectrum,” she said.