Turned down by child-care providers, Ontario mom says 'huge stigma' persists for babies with Down syndrome

Each time Trish Jarvis posted to social media in search of child care for her daughter, she says she grew more frustrated and nervous. And each time, she ended up back where she started — with no one willing to accept Farley into their care.

Farley is a content, sweet and loving 13-month-old baby and "the best thing to ever happen to us," Jarvis told CBC Hamilton.

Farley also has Down syndrome and that makes home-based providers nervous, Jarvis said. Of the 30 or so people that she had been in contact with over nine months, none committed.

"Even hearing there's a syndrome or disability involved, they think it's the big bad wolf of a baby," Jarvis said. "There's this huge stigma like it's one of the worst things in the world."

Jarvis, who goes back to work in February, is speaking out at a time when demand for infant and toddler care has surged and hundreds of families are stuck on waitlists for licensed centre spots in Hamilton and across the province. 

She had put Farley on those waitlists, too. But knowing it could be over a year until she gets in, Jarvis was trying to find a spot with someone operating out of their home, either licensed or unlicensed. 

A week after speaking to CBC Hamilton — nine months after her search began — Jarvis said she finally secured a spot with a licensed home care provider much to her relief.

But her experience demonstrates how challenging it can be to find care for infants and toddlers who have disabilities. 

The Down Syndrome Association of Hamilton has heard from a number of families who find accessing child care "increasingly difficult" across the region, said Heather Gain, the association's chair.

"We do believe this is largely due to lack of [staffing] resources in our community, made worse by the pandemic," Gain said, adding that discrimination is also a factor.

"Unfortunately, discrimination does happen when providers withhold services that are available to others or impose extra burdens that are not imposed on others, without a legitimate reason," she said. 

'She'll thrive in her own way'

Jarvis said during her search, she offered to train child-care providers on how to set up Farley's feeding tube, as well as do a two-month transition period where she could come over to help them at any time. 

In Facebook messages seen by CBC Hamilton, providers expressed concern to Jarvis about handling Farley's feeding tube or that their day cares would be too rowdy for her. 

One provider set up a time for Jarvis and Farley to visit her home, but when they arrived she never answered the door, Jarvis said. Soon after, she saw the provider post on Facebook the spot was still available. 

"I do think she changed her mind," Jarvis said. "I feel like people that haven't been around Down syndrome think it's a complete disability and that it's going to be really difficult. It's so not.

"Farley has a syndrome but she isn't defined by it. She'll thrive in her own way." 

Andrea Brown, who lives in the Haldimand-Norfolk region of southwestern Ontario, said it took her over two years to find child care for her three-year-old son Teddy, who has Down syndrome and is non-verbal. She eventually got him a spot at a centre in September, but it's open only six hours a day hours and is far from her home and work, adding two hours to her commute, she said. 

Still, the hassle is worth it — Teddy's doing "fantastic," said Brown, who works for Down Syndrome Association of Hamilton.

"Something I've seen that's so heartwarming is how welcoming the other kids are," Brown said. "They know he can't speak so they're starting to speak for him, [saying] 'Teddy needs this.' That's at the heart of inclusivity." 

More oversight, support needed

In Ontario, families pay half of what they used to in fees for licensed centres or licensed home providers under the province's recent deal with the federal government.

That cost reduction has made child care more financially accessible and driven up demand.

For example in Haldimand-Norfolk where Brown lives, there's currently 1,933 children on the centralized waitlist with all 2,927 spots full, according to the counties. 

The child care sector is experiencing a staffing shortage and a lack of resource workers to support infants and toddlers with disabilities, said Kathryn Underwood, a professor of early childhood studies at Toronto Metropolitan University. 

While that shouldn't translate to excluding them from early childhood education, the province has done "nothing" to ensure children with disabilities are included or prioritized, said Underwood. 

"I know from talking to families that many are told in a kind of benevolent tone [by child-care providers], 'Oh we don't have the resources to care for your child,'" she said. "So then what happens? We don't really know." 

She said there needs to be a clear process to address discrimination when it occurs and more oversight. 

The Ministry of Education, which oversees child care, declined to comment. Minister Stephen Lecce announced Thursday Ontario would boost early childhood educator minimum wages from $20 to $24 an hour next year to help address the worker shortage.