Autism program delay ‘devastating,’ Ottawa parents say
Some Ottawa parents are expressing frustration over the province’s plan to delay implementation of a full needs-based program for their children who are on the autism spectrum.
The Ford government announced Tuesday the program won’t be ready by next April as originally planned, and will instead need to be phased in over two years.
“It’s devastating,” said parent Sophie Barrette. “This is people’s lives.”
Barrette’s two-year-old son, Dax MacDonald, was born with a brain injury and diagnosed with autism at 19 months.
“This [announcement] means another year of delay and of no treatment, no therapy at all for some of these kids who can’t afford to pay out of pocket,” Barrette said.
Paying out of pocket
Barrette said she’s been paying out of pocket for applied behavioural analysis, speech therapy and parent coaching.
She estimates she’s spent nearly $50,000 in the past year, but said her son has made huge strides in that time, going from being unable to speak, regulate his emotions or even play with toys, to doing all three.
“To see the improvement — why can’t every kid have that opportunity?”
Barrette, who’s a nurse, warns failing to invest in children like her son early on will cost the health-care system in the long run.
“It’s terrible what’s happening. These people are going completely untreated, so they don’t improve. They don’t reach their full potential.”
Another parent told CBC they’re worried about how the new program will be implemented, and whether children who have reached certain benchmarks will be denied services simply because they’ve made gains.
It was also announced Tuesday that families will be eligible for interim funding of either $5,000 or $20,000, depending on their child’s age, until the program is fully implemented.
But Suzanne Jacobson, founder and president of Quickstart Early Intervention for Autism, which offers four-month programs to children under two, said parents are confused about what that money covers.
“They’re worried because it’s not very clear what they can spend the funding on. They know there’s not capacity to be able to purchase services here in the Ottawa area,” Jacobson said.
Wait times to access the specialized programs are also a source of stress, she said.
“You’d be very, very worried as a parent as you wait and wait and wait. And even for those who are somehow able to scrape together the funding through remortgaging homes, asking family members to support them, just doing whatever they can, is just a very desperate situation.”