With no reprieve whatsoever, Filipa Fereira is providing 24-hour around-the-clock care to her 16-year-old daughter Ana during the COVID crisis.
The eastern Ontario mom has had to cancel the four different PSWs who normally come in weekly to help with her daughter’s complex needs.
Ana is non-verbal, in a wheelchair and has a feeding tube. She needs medication three or four times a day and help with her school work.
“It’s really hard to do,” Filipa, a part-time early childhood educator, said last week.
There’s the additional anxiety of hoping Ana doesn’t get sick because catching the virus is “almost a death sentence,” she says.
It’s bad enough that PSWs are going from home-to-home to make up full-time hours. She said that despite many pleas, her Local Health Integration Network (LHIN) case workers have said if the PSWs have no symptoms of COVID, there is no need for protection — gloves or masks — with highly vulnerable special-needs kids.
Linda Till, a long-time advocate for people with disabilities, said the system has a “pervasive belief” that these children’s lives are not “quality lives” and it’s “not the worst thing in the world if they do pass away.”
She should know the system. She lost her beloved daughter Becky two years ago at the age of 40 after adopting her 30 years ago from an institution where care for her complex needs had been so “abusive” that she weighed less than 20 pounds.
Till said the families of children with disabilities have had to be proactive about protecting their kids at risk because they’ve had no guidance from the LHINs, the Premier, minister of health or the ministry of children, community and social services.
“Families are now becoming overwhelmed,” she said. “They’re becoming increasingly despondent and devastated because they don’t see an end in sight.”
Etobicoke mom Linda Canning is pretty much in the same boat as Ferreira with her 16-year-old son Thomas, who has a dual diagnosis of cerebral palsy and autism.
She has relied on six hours a day of support for her son — from people with higher skill sets who can deal with the behaviours that result from his autism.
Canning said that when the workers could no longer come, she tried to “do it alone” for three days and realized she just couldn’t.
Because she had to look for a “very specific type of worker” to deal with his complex needs, she reached out to health minister Christine Elliott, Premier Doug Ford and her MPP to allow her to hire a family member to help under her “self-directed funding arrangement.”
She thought she had a “perfect solution” but her LHIN flatly refused to give her permission to do so, even though their own policy states it is permitted under circumstances such as those presented by the COVID crisis.
“I was really dumbfounded and frustrated,” she said. “They’re (the LHINs) very rigid and inflexible.”
Canning said after appealing the decision and getting nowhere, she eventually hired two people out of “desperation.”
“It’s certainly not ideal but the care (for Thomas) is so complex,” she said.
Still, she felt a need to speak because many families are in the same boat — and are forced to hunker down and do it themselves.
In an April 17 open letter to Ford, Elliott and Smith titled Family Alliance Ontario referred to the province’s “non-response” to mitigate the impact of COVID-19 on special needs families — citing the lack of PPE, the inflexibility around using ministry funding to hire extended family members and concerns as to whether a family member can accompany their special needs children/adults to hospital to advocate for them.
Asked about the difficulties last week, children, community and social services minister Todd Smith said he recognizes that a lot of families are in crisis and said his ministry has topped up funding for a variety of items — including purchasing PPE if they can be found.