Toronto mother calls for reversal of Bill 60 after nurses caring for her child move to private clinic

A Toronto mother says she is in a desperate situation as she loses publicly-funded nurses for her complex special needs child to the private sector.

Nicole Payette-Kyryluk is urging the Ford government to reverse funding cuts and legislation that she says is privatizing the healthcare system.

Her 12-year-old daughter, Alexa, was born with a rare neurodegenerative disorder. She is non-verbal and palliative and wasn’t supposed to survive past the age of two.

Payette-Kyryluk describes her life as every parent’s worst nightmare because in recent months, access to care has become unimaginably difficult.

“She has a lot of different things, health wise. And she requires a lot of suctioning,” said Payette-Kyryluk. Alexa’s condition has worsened. She now requires a ventilator and round-the-clock care.

“She’s also tube-fed so we have a feeding pump there. We have to nebulize her so we have equipment here to clear her airway,” explained Payette-Kyryluk.

Not only are Alexa’s needs so complex that some nurses have rejected working with her altogether, but the nurses who did spend years with her have been lured away from homecare to private clinics.

“A lot of them have moved on to public clinics, or taken on jobs at hospitals so they’re not available to work with Alexa as much so it’s been devastating,” said Payette-Kyryluk.

“We have a lot of different medical emergencies that happen here in the home so when I don’t have a nurse, I am the nurse. I have no medical background.”

Payette-Kyryluk has been forced to resuscitate Alexa by herself countless times. “You’re asking parents of medically fragile children to resuscitate their own children without a nurse present. It’s not right,” she shared. “It’s scary, I’m on leave right now from work, I have PTSD, anxiety, depression.”

This has forced the family to rely on private nurses rather than publicly-funded ones and Payette-Kyryluk has racked up a $3,000 bill that she can’t pay.

It comes after Alexa’s complex special needs funding from the government was cut by almost $100,000 without any notice or transition plan.

“So now we’re like what do we do, do we cut our nursing to the point that it’s a skeleton crew? Because we can’t pay for the nurses?” asked Payette-Kyryluk.

For months, healthcare advocates and unions have been warning the ford government’s Bill 60 that allows OHIP-covered procedures to take place at private clinics will siphon health care workers away from the public system and into the private one.

Health Minister Sylvia Jones said they’ve stabilized wages so nurses in home and community care are getting the same pay as those in hospitals or long term care.

“We have stabilized through wage enhancements to make sure we don’t have this constant back and forth of you’re getting higher compensation when you are in hospital long term care as compared to home and community care,” said Jones. “So we’ve done that stabilization piece, and now we’re working very much with the sector on making sure there’s a consistent approach in what you can expect when you have home and community care.

Jones wouldn’t address the appeal of working in private clinics.

“I want to see a home and community care sector that has as much provincial support to ensure that when individuals want to and have the ability to rehabilitate to be at home in their communities. We’re there for them.”

“I don’t understand why they’ve created all these barriers for us when we don’t know how much time we have left with her. And that’s what’s devastating,” said Payette-Kyryluk.