Holding signs and the hands of little ones, dozens of parents march along the sidewalk in front of MPP Andrea Khanjin’s office in Barrie.
It’s been more than a week since the provincial government announced plans to revamp the autism funding program and those protesting on Thursday say they refuse to accept it silently.
“I have hope that the government will do the right thing because we won’t back down until they do,” says Susanne Malins who’s six-year-old son was diagnosed with autism. “The right thing would be to make sure that every kid has access to needs-based therapy. A little bit of money isn’t going to help us.”
Last week Ontario’s minister in charge of the autism program, Lisa MacLeod, announced that children diagnosed with autism under the age of six would receive a maximum of $140,000 for treatment up until the age of 18. Kids older than six will receive up to $55,000. MacLeod says it will ensure that 23,000 children currently on the waitlist will be able to receive treatment.
But parents and advocates say it’s a Band-Aid fix.
“The system that they are proposing, it doesn’t serve anyone. It’s too little for everyone,” says Paul Reimer whose son, Matthew, spent three-and-a-half years on the waitlist and is now getting therapy.
Sydney Graham’s five-year-old daughter Zara is also currently receiving treatment that Graham says has changed, not only their daughter but their family.
“When Zara first started IBI she was mostly non-verbal, made very little eye contact, she didn’t respond when I called her. With IBI we’ve gotten our family back. She still has a long way to go, but she is living the life every five-year-old girl should live.”
Some families, like Elaine Clayton, have taken drastic measures, like taking out a second mortgage on their home, to continue to pay for the intensive behavioural intervention (IBI).
“We are still on the waitlist for funding,” she says. “We would absolutely rather wait to get the funding for the services that we need than to have everybody off that waitlist and nobody getting what they need.”
Clayton says her three-year-old daughter Sydney has gone from being able only to say one word to full sentences and credits the intensive behavioural intervention (IBI) for it.
“We pay presently $5,000 a month for my daughter’s services. It’s working for her. She has progressed incredibly. I never thought I would hear her call me mommy. This works for her. All these kids need and deserve that”
The government says it stands by its decision to clear the backlog and ensure some services for all. But Malins says they still have hopes of changing that plan. She says if she could speak directly to MacLeod she would tell her “you made the wrong choice. You made a really bad choice, and it’s being exposed for what it is. So stop hiding, stop the lies, and fix it. Do what’s right.”
Late this afternoon CTV News learned that some of these parents at today’s rally will have the opportunity to voice their message at Queen’s Park.
Two local MPPs, Andrea Khanjin and Doug Downey, have agreed to host a listening session in the coming weeks to hear parents’ concerns about the proposed autism program changes.
