This is the first article in a regular series, When Ends Don't Meet, highlighting issues of social equity during a far-reaching affordability crisis by sharing the stories of Newmarket community members left struggling to make ends meet.
Andrea and Claudio Nanu-Garofalo are at their wits' end trying to get government support for their twin six-year-old children, Mia and Sebastian, who are on the autism spectrum.
The parents say they have fought to get stable funding for the past three years but have been unable to get into the province’s new Ontario Autism Program. After burning through their savings and downsizing to a different home to help fund their children’s expensive therapies, the two now rely on the food bank and other supports to get by and keep some of the therapy going.
“The biggest feeling right now is frustration,” Andrea Nanu-Garofalo said. “I’ve had a couple of phone calls where I hang up, and I just burst into crying. I’m so frustrated. It just seems like you’re smashing your head against the wall, and you’re not getting anywhere.”
The provincial government has faced controversy in recent years in failing to support parents of children with autism. The provincial government reportedly missed its internal targets for enrolling children in autism therapies this fall, although it pushed back and said it has met its targets.
The family has three children, with twins Mia and Sebastian diagnosed with autism in September 2019, which is when they applied for government support. They have been on the waitlist but have yet to get into the program and have fought to get a better idea of when they might be able to get more government help.
While waiting, the parents acted to support their children. They sought to get them into recommended speech therapy programs. The cost for these is approximately $24,000 per year, they said, but they could see it making a difference in their children’s development and behaviour. They added that total medical expenses for the two, including physical and occupational, got up to approximately $70,000 in a year.
“We expected that our expenses were going to ramp up,” Andrea said.” People ask me all the time, ‘Why would you put them in therapy if you didn’t have any funding yet?' …. The reason why we did it was because the one thing that everybody seems to highlight and agree on is how important early intervention is.”
But their savings have dried up, they said. As such, they have had to cut back on how much therapy time their children get, and rely on support from friends, family and the food bank to manage it all.
Claudio said he has a well-paying job, but the expenses are well past what they can bring in.
“Right now, every night I go to bed, and it’s a constant,” he said. “Your mind starts thinking, 'The kids need two grand in expenses this month. But then I got the mortgage. I got taxes.'
“You start to lie to yourself to believe in something that’s not there. ‘It’s gonna get better.’ I’ve heard that lie so many times. I don’t want to hear it anymore.”
The pair have hounded the province to get funding through the Ontario Autism Program over the years but say they have been stonewalled. Andrea said interim, one-time funding from the government in 2022 helped, but did not last long enough.
“All that’s happening, it seems like we’re moving to a new queue,” she said, adding more regular interim funding could go a long way. “I just want to get something. I want to have some sort of stability.”
According to the province's financial accountability office, 2019-2020 financial year numbers reveal about 50,000 kids were on the waitlist for autism services then.
The Canadian Press reported this week that some frustrated families are leaving to access support for their autistic children in other provinces rather than wait years in Ontario.
Ministry of Children, Community and Social Services spokesperson Kristen Tedesco said the province has doubled annual funding from $300 million to $600 million for the Ontario Autism Program and adopted recommendations from an advisory panel to improve the system.
“The OAP has multiple pathways to services and interventions, including core clinical services, urgent response services, caregiver-mediated early years programs, and foundational family services, to support the individual needs of children and youth on the autism spectrum and their families,” Tedesco said. “We are continuing to deliver a program that will see more children and youth receiving needs-based support than ever before in Ontario.”
For the Nanu-Garofolos, that support is not coming soon enough.
Claudio questioned the government’s comments about providing health care without credit cards when he said his family is paying for needed therapies out of their own pocket.
“Step up, grab the bull by the horns. Take care of your people,” he said of what the government should do. “Invest in the future.”
“I feel bad even thinking about it, but it’s hard to see them spend money on so many other programs,” Amber said, adding that getting therapy early can make a big difference in terms of children not relying as much on government assistance in the future.
“If Mia and Sebastian don’t get the therapy they need right now, their chances to actually be independent are significantly reduced.”
Managing the family budget has only got more difficult as food prices and other living expenses increase, they said.
“The price of food has been hitting us hard,” she said, adding that Mia and Sebastian have some food aversions “There’s five of us and with the kids, our food expenses are really high.”
With regular appointments with doctors, including Mia at SickKids Hospital, fuel prices are also an issue.
“We end up spending a lot of gas,” she said.
Still, the two said they are thankful that they get support from smaller players, like family, friends and the children's schools.
“It’s heartwarming to see that people are willing to help and neighbours helping us,” she said. “They’ve been amazing.”
The pair hope they may soon get an answer on when they and others on the waiting list can expect the government to enrol them in the Ontario Autism Program.
But for now, the two said they will be struggling to get by.
“It’s almost like every time you’re in the water, and you’re trying to swim. Every time you get to the surface and you pop your head out," she said. "There’s another wave that crashes over on you. That’s how it feels.”
You can support the family on GoFundMe at gofund.me/71a76a7d.
-With files from The Canadian Press
