Respite services for northern Ontarian mom of autistic daughter on hold since 2018

A mother in Capreol, Ont. says she's been on a waitlist for the province's Special Services at Home program since Feb. 2018.

The program is meant to provide funding that supports families with children on the spectrum and other developmental or physical disabilities. The program was frozen until recently, which forced many families onto a waitlist.

Chantal Chartrand said with the added pressures of COVID-19, she's recently become even more desperate for access to respite care, which allows parents and caregivers time to recharge and look after themselves so they're able to better care for their children.

Chartrand said she's unsure of how much longer her family can continue without the support. In June, she said she was forced to leave her job as a personal support worker to care for her four-year-old autistic daughter.

'Because she needs me'

"I love helping people, I love my job, I miss my residents but I'm home taking care of my daughter because she needs me," she said.

As she's been waiting to hear from the province, Chartrand said she received about $1500 for the year, from Sudbury's Children Community Network, to put toward paying for a respite care worker. And while she's grateful she knows the money won't go far.

"Respite care workers, depending on their qualifications, [cost] from $20 to $30 an hour," she said, "Respite care is more for me than for her, which is important because caregivers really need to take care of themselves." 

It's a dire situation for parents especially during a pandemic ... especially if they're single or underemployed.— Sean Staddon, Northern Ontario Autism Alliance

Sean Staddon, who has two children on the autism spectrum and is co-founder of the Northern Ontario Autism Alliance, says respite care is vital to the mental health of caregivers. 

Staddon said he does receive funding from the province's program for respite care for one of his children, which his family applied for in 2017.

The family also applied for the funding for their second child in 2019, but were put back on the waitlist.

The criteria for the funding, he said, has become needs-based, which he feels is problematic. 

"It puts parents in a really, really tight spot. I struggle with it because I don't know who's determining which child has a higher need than someone's else's," he said. 

Province reaching out to newly eligible families

"I think it's a dire situation for parents, especially during a pandemic who really need some help, especially if they're single or underemployed folks," he said. 

CBC News asked to speak with the Minister of Children Community and Social Services for this story, but that request was declined.

In a written statement, a spokesperson with the department said that earlier this year, the government announced an additional investment of $20 million into the Special Services at Home program.

The spokesperson said regional offices have begun to reach out to newly eligible families and the department expects to have this process completed soon.