A family that was forced to separate because of their daughter’s health problems and associated home-care bill is heading home together.
John Rogers recently drove his two-year-old daughter from their home in Stephenville to the Janeway hospital in St. John's because the family can't afford round-the-clock home care for her.
That left Kallei’s mother Katrina home in Stephenville to work, while the little girl and her father stayed in St. John’s.
But ever since CBC News first broadcast the Rogers' heartbreaking story last week, sympathy and donations have been pouring in.
Thanks to the generosity of donors across the province, the family has enough money to return home together, at least for the short term.
But the president of the Newfoundland and Labrador Coalition of Persons with Disabilities, Michelle Murdoch, says the situation points to a much bigger problem.
"By telling you (that) you have to pay a huge amount of money or she has to go into an institution, is that really a choice?" asked Murdoch. "From my perspective, that's not a choice."
The province requires people to pay a percentage of home care based on their income, but the Rogers say they can't afford their bill, which would equal 30 per cent of their income.
"If we asked people with children to give 30 per cent of their salary for daycare, there would likely be a big public outcry," Murdoch said.
"These parents don't have options like daycare and things like that. That's what makes it not equal."
She says much of the problem goes back to when institutions such as Exxon House, which used to care for people with disabilities, were closed.
"The premise was people are better served in their communities," said Murdoch.
"We were told that community supports would be put in place that would help people cope with these different types of needs. That hasn't happened, or it hasn't happened to the extent that we need."
She says an ideal solution still hasn’t been suggested.
"We want everything," said Murdoch. "We don't want institutions, because it's not a place where you can grow and have a good life, but then we're asking for home care."
"We need to, as a society, have a discussion about what we can pay for and what we can't pay for. Extenuating circumstances exist that need to be considered."
Balance costs and empathy
Another woman who fights for people with disabilities says there's no easy answer for the Rogers.
Marie Ryan says their story is not uncommon.
Formerly Marie White, Ryan used to chair the human rights organization Council of Canadians with Disabilities, and is a former deputy mayor of St. John's.
"This is a question which begs for a solution but there isn't one," lamented Ryan.
"This is an issue that people with disabilities and families who have children with disabilities often face, right across this country."
As a solution, Ryan suggests the Rogers could argue theirs is a special case, since Kallei has a rare medical condition.
That way, the government wouldn't set a precedent by covering more of their home-care costs, says Ryan.
Either way, she believes governments must strike a balance between costs and empathy for families.
"If I'm the Rogers, I'm struggling with the issues I face with trying to keep my child at home."
"If I'm government, I'm struggling with burgeoning costs. But somewhere in the middle there has to be a sustainable, significant solution."