Sian Gray’s daughter is unable to walk or talk, has epileptic seizures and takes all her medication through a gastrostomy tube (G-tube).
“We have a 17-year-old daughter named Cerys,” said the Burlington, Ont., mother of three. “She was born with Angelman’s syndrome. She’s a 24-7 care child.”
That makes the specialized care Cerys has been receiving since the age of four at ErinoakKids Centre for Treatment and Development all the more vital. The Mississauga respite service provides short-term relief for caregivers of children with disabilities.
“It is her weekend away, it is her weekend to do stuff that every other child gets to do,” said Gray. “And for us as a family, it means that we get to spend a little extra time with our two sons, it means that we can get away and not worry about Cerys’s needs.”
But they are now one out of a number of families who now say they’ve been left in the lurch.
“We got a phone call last week,” said Gray.
It was ErinoakKids, calling to notify them that they’re putting a temporary pause on its respite care while it works to expand its services.
For affected families like Cerys’s — whose next respite was scheduled for next week, during which Gray and her husband planned to be away — the short notice has left them scrambling.
“In the summertime, we count on Erinoak to give us a week of respite,” said Gray. “Both my husband and I work full-time. So trying to plan nine to 10 weeks for a 17-year-old daughter where there aren’t camps for her is very very hard.”
In a statement to Global News, the centre explained that because of funding from donors, it would “now be able to offer this critical service on a more continuous basis (up to 44 weeks per year) to about 40% more families than present day,” adding that “this expansion requires a short pause in service so that we can redesign and reschedule the program.”
Disability advocates say it’s not always easy for families to find additional supports — and caregiver burnout is a real problem they often contend with.
“A lot of families can’t just have grandma come over and provide the care,” said Sherry Caldwell, founder of the Ontario Disability Coalition. “You have to have nurses and trained specialists to care for them…. These breaks that these families get are just an essential service that can’t be easily replaced.”
ErinoakKids says the services will be rescheduled when it reopens mid-summer. But for Gray and her family, that’s not acceptable.
“We can’t go into summer not having very concrete plans for where Cerys is going to be every week of the summer,” said Gray. “We start planning that in January. So for someone to say it’s going to be open in the middle of summer doesn’t help us.”
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