Mother of son with autism decries ongoing lack of services for Quebec kids with disabilities

Sharon McCarry says she opened an education centre for young children on the autism spectrum in response to a shortage of resources for kids like her son.

"We were kicked out of a couple of daycares, a couple of community organizations and just by sheer will, I decided that I would start a preschool," said the Montreal West mother, whose son has autism. 

McCarry founded La Fondation Place Coco, which manages the Little Red Playhouse, an inclusive early education centre for children with autism in its 16th year of operation. 

Still, all these years later, McCarry says not much has changed in terms of getting support for young kids with cognitive disabilities in Quebec. 

A new report from the Observatoire des tout-petits, a Quebec non-profit organization that produces studies on children age five and younger, highlights the difficulty of obtaining those kinds of services. 

The report, called "Young children who need special support: How do we help them reach their full potential?" found kids five and younger with developmental disorders or disabilities are not getting the health and educational services they need quickly enough. 

Some 21 per cent of young children who presented a significant developmental delay between 2020 and 2021 failed to receive services through various specialized programs within a reasonable amount of time prescribed by the Health Ministry. The report's authors noted that the pandemic played a role in slowing down services and the ongoing labour shortage is not helping remedy the situation.

Researchers say the number of children lacking these services is likely far higher, as the report only accounts for children who already have a diagnosis — something that can be difficult to get in the public system, according to McCarry. 

"[If] you have to go privately … the cost of getting a diagnosis is now inflated to around $3,000 to $3,200 dollars," she said. 

"And you can be on a waiting list for well over a year, even in private clinics." 

Early intervention is crucial

Without a diagnosis in Quebec, it's difficult for parents to get services for their child, according to the report. But even with one, parents seeking specialized programs and services for their child encounter a multitude of obstacles, such as excessive delays and difficulty obtaining financial assistance. 

Anne-Marie Cech, the English spokesperson for the report, says children are sometimes forced to wait years to get the support they need, but early intervention is crucial for children's development. 

"If a child receives services at one year old, it's different than if they receive it at three, at five, or at seven, and this is the current reality," she said.

"The bracket of zero to five years old is an essential one and it's one where we can't wait for children to access those services."

Cech says kids will suffer from not having obtained language, motor or cognitive support in a timely manner.

The report is therefore calling for proactive action based first on the needs of children rather than waiting to obtain a diagnosis, which often arrives too late or which may prove imprecise.

"The support they require should be based on their needs, not their diagnosis or disabilities," the report reads. 

The report also recommends improving access to information for parents, reducing the number of steps involved in getting services and improving co-ordination in accessing services in different networks.

Quebec program 'an absolute failure'

Speaking to reporters following the release of the report, Social Services Minister Lionel Carmant, who practised as a pediatric neurologist before entering politics, says the government's Agir tôt program was created in 2019 to detect and treat early developmental delays.

"Before Agir tôt there was just no services for [kids] zero to five. Now you have services with systematic screening at 18 months with vaccination, you have early intervention prior to diagnosis," he said.

Carmant noted children used to be diagnosed and treated after they were already in school.

"It's obviously too late. We need to do this before school entry and Agir tôt is doing this," he said. 

The minister said demand has increased and funding for more services will be added in the government's 2024-25 budget, admitting the program still needs to be improved.

As it stands, McCarry says, the program is centralized and unable to meet the province's demand as it's missing adequate staff. She says it's also mostly beneficial for children with language delays rather than those with autism and other developmental issues.

"It's not working fast enough or well enough," she said. "It's an absolute failure to parents."

McCarry says she'd like to see Quebec get more community organizations involved with the program, saying they have the knowledge to help and can be part of the answer to reduce the concerning delays.