TORONTO — When Jeremy Roberts was protesting the Ontario government's autism program outside the premier's office, he felt like it was futile.
"I remember this sense of hopelessness," he told HuffPost Canada in an interview. "Like nobody was listening, nobody could hear."
Roberts was in high school at the time — it was 10 years ago. The office he was protesting at belonged to then-Liberal premier Dalton McGuinty.
The experience inspired Roberts, whose younger brother Dillon has autism and epilepsy, to get involved in politics. He started volunteering for the Ontario Progressive Conservative party when leader John Tory promised to improve supports for families of people with autism.
Now 27, he's the PC MPP for Ottawa-West-Nepean.
When his own government faced intense protests over its changes to the Ontario Autism Program, Roberts worked behind the scenes for weeks to bring feedback and suggestions to Minister of Community, Children and Social Services Minister Lisa MacLeod and Premier Doug Ford.
Roberts said he met with eight to 12 families every day and passed on their experiences to Ford's office and cabinet ministers. He educated other MPPs about autism when they asked him what to say to their furious constituents. He refused to applaud when other PCs leapt to their feet with standing ovations for MacLeod as she defended the plan in question period.
On March 21, six weeks after the initial announcement, MacLeod said the PC government will tweak their program and consult families over the summer on how to improve it for kids with high needs.
The next evening, Ford went to Ottawa for a spaghetti dinner fundraiser. Roberts brought his brother along so the two could meet.
"The premier said to me afterwards ... that this was so helpful for him because it helped him better understand where I was coming from when I would talk to him about autism," Roberts said. "At least then he had a better picture."
Dillon recently celebrated his 26th birthday at his favourite restaurant, Pizza Hut. He wears sound-blocking headphones and is missing his four front teeth because he had a seizure and fell face-first onto cement, Roberts told HuffPost. He can't speak, has trouble with eye contact, moves his hands a lot and sometimes bites his own arm.
The premier said to me afterwards ... that this was so helpful for him because it helped him better understand where I was coming from when I would talk to him about autism.Jeremy Roberts
"When you see someone like Dillon, it helps you understand a little bit more when I say I've been through these challenges," said his older brother.
For about two years while Roberts was in high school, Dillon either had a seizure or serious behavioural issues daily. To care for Dillon, Roberts was taking months off of school at a time; his mother gave up her job, and his father took a leave from work as well.
"It was a very difficult time on both of them," he said of his parents. "And both of them have struggled ever since."
Doctors told Roberts' parents that Dillon needed 24/7 care in a respite home, which would come at a cost of $85,000 a year.
Under the PCs' original plan, Roberts' parents would have been eligible for only $5,000 a year — or even less depending on their income — towards that cost. The program did not take into account an individual's needs, so the family would have received the same funding as a family whose child has mild autism and is able to speak and attend regular classes.
Roberts' family was lucky. The MPP appealed to a social services board "and for lack of a better word, begged them for money for my brother," he said.
"We were really fortunate that he got provided the funding. He's been doing so much better since he's been there."
Dillon's group home has been able to balance his medications so that he has fewer seizures. He's also become less aggressive.
"They've been able to provide him that routine and structure that we weren't able to because we were spiralling into crisis."
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It's still hard for his family not to see Dillon every day, Roberts said, but they know it's for the best. He said his mother cries every Sunday when they drop Dillon off after taking him out for dinner.
Roberts believes it was families like his that convinced Ford and MacLeod to change their program.
"At the end of the day in politics, I think a human story is worth much more often times than a sheet with facts and figures."
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