Parents facing roadblocks in accessing child care for children with disabilities: Winnipeg daycare

Finding child care has been a major source of stress for Destiny Munoz and her family.

Her two children, Matteo, 5, and Ava, 2, have been on daycare wait-lists for five years, or for the entirety of their young lives.

“It’s incredibly stressful to try to figure out what we’re going to do for childcare,” Munoz told Global News.

It’s been particularly challenging for her daughter, Ava, who will be three years old in November. Ava has a genetic condition called Prader-Willi syndrome. One of the features of the syndrome is a constant sense of hunger. Munoz says her daughter needs additional support, particularly around meal times.

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Munoz says Ava was initially accepted into an inclusion spot at Seven Oaks Child Daycare Centre. But two weeks before Ava was supposed to start, they found out a provincial program would not be giving them funding for her specialized care, and were instead only funding two hours of specialized care.

“Seven Oaks Day Care didn’t think that was adequate funding to support her, and I agree, I think she needs full-time funding to make sure that she’s safe and getting all the support that she deserves and needs at daycare,” Munoz said.

“The condition she has, she needs support around food, so she was provided funding only to be supported around meal time, so for three meal times a day she’s supported with a one-on-one staff. But that’s broken up throughout the day — you can’t hire somebody to do that.”

That means it’s back to playing a waiting game for Munoz and her family. Both Munoz and her husband have cut back to working part-time and have had to rely on family for additional support.

“It’s been a battle to get more hours for her so she can get full-time funding so I know that she’s safe and then we can put her in a good centre,” Munoz said. “And then hopefully, eventually, my husband and I can go back to work full-time.”

Mikala Sasley’s two-year-old son Liam has been in an inclusion spot at Seven Oaks for almost a year now, but he was initially also denied full-time funding.

“(The daycare) applied for one-on-one care because he is G-tube (gastrostomy tube) fed; he is dependent on his G-tube feeding (and) he has developmental delays so he requires a lot of care and attention (and) that one-on-one supervision. So initially, they declined the funding for that one-on-one care, even though they had the space at Seven Oaks,” Sasley said, adding that after a month of the daycare’s executive director advocating for them, they were able to receive the funding.

“At first it was quite devastating to get that answer of ‘no we won’t be able to attend daycare,’ and then once she called me back to say we got it, we were extremely excited to be able to come here and I would be able to return to work.”

She says she has seen major improvements in Liam’s development since he started attending the program.

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“He’s able to be around children his age, as well as older. And he doesn’t eat much orally, but even just being around them at lunchtime, he eats more than he will at home for us,” Sasley said.

“His development, his motor skills have really excelled since being around here. Same with his being able to sit up independently, he’s getting very close to that.”

The roadblocks with receiving funding for inclusion spots are also a frustration for Susana Lam, the executive director of Seven Oaks. She says the daycare used to receive enough funding to support about 10 inclusion spots; now they can only accommodate about half of that.

“The frustrating part now is that I’ve had to tell families who have been approved for funding … (that they) don’t get enough adequate hours to support their child,” Lam said.

“And these are children who sometimes come with high medical needs (and) need somebody with them all the time, and now I’ve got to tell families they don’t have the spot anymore because it’s not fair that we’re not going to be meeting that child’s needs.”

The province says funding for the Inclusion Support program is at $21.6 million for 2023-24, compared to $18.3 million in 2018-2019, but wouldn’t tell Global News why full funding wasn’t given in these instances.

Lam says there are too many hurdles blocking families from receiving the care they need.

“When we’re enrolling children with support (needs), now they have to have a certain diagnosis. They don’t just enrol based on (their) therapists saying they need support and they get in.”

Lam says she currently has about 10 families waiting to get into an inclusion spot.

“I find it quite frustrating that we feel like we have to prove that what we’re saying in these reports is accurate — that these children have these needs, they need support,” she added. “And they’re wanting more, and you’re constantly resubmitting all these forms, you have therapists, you have doctors’ notes — it’s not enough.”

“How much more can I prove to you that this child needs support?”

Lam says she often needs children to be approved for full-time support, otherwise it becomes a liability issue. She wants to see the province take action and put more funds into the program.

“They have to understand the importance of early learning (for) not only for a typical child but one that needs additional support as well.”

That’s something Munoz agrees with.

“Parents shouldn’t be fighting for this. We shouldn’t be fighting to explain how bad our children’s disability is or how it impacts them or how it impacts the family, it should just be they have a disability,” she said.

“It just shouldn’t be so hard.”