A Stephenville man says the cost of home-care workers for his severely disabled two-year-old daughter means he has to tear his family apart and bring his daughter to hospital in St. John's.

John Rogers said his daughter, Kallei, who was born with a rare muscle disease, requires round-the-clock care.

She needs a ventilator to breathe and uses a tube for feeding and to ingest medicine.

Toddler spent first year in hospital

Kallei spent the first year of her life at the Janeway hospital in St. John's, with her mother Katrina at her side. She's been able to live at home with both her parents, on the west coast of Newfoundland, with 24-hour home care. 

Rogers and his wife have insurance, which has covered about $40,000 of Kallei's home-care bills, and the provincial government has covered the rest.

Until recently, Rogers had been paying almost $400 a month to offset the workers' wages.

But since his wife got a full-time job, the family doesn't qualify for as much financial assistance from the province. So their portion of Kallei's home-care bill has gone up significantly, to $2,100 a month, or more than $25,000 a year.

Family can't afford extra cost

Rogers said his family can't afford the extra cost.

"The money leaves us with nothing. Nothing to be able to do anything for her with," said Rogers. "We are left to the options of we live in poverty here at the house, and won't be able to do anything for her. Or we have to bring her back to the hospital."

That's left Rogers with only one difficult option.

"Unfortunately, really, really harsh decisions to make, the Rogers family has to split up. I have to take my child, take her into the hospital."

Rogers said he plans to drive the 760 kilometres from Stephenville to St. John's with his daughter on Monday, and admit her to the Janeway's intensive care unit, where medical staff are waiting to care for her.

Kallei's mother will remain in Stephenville.

"We are a family, we do love each other, all three of us," said Rogers. "To have to leave on Monday, I really don't know, it's gotta be done."

Cost higher to keep child in hospital

Rogers said he's been told that the cost of having his daughter stay in the Janeway is about $1,500 a day, which would amount to $45,000 a month.

Rogers said he's spoken with provincial officials, and written provincial and federal politicians, but he's been told rules are rules.

"People, for the most part I've seen, right off the bat agree with me, they understand what I am going through," said Rogers. "But this is the policy and they have to follow the policy. It's not their decision."

Politicians react

Meanwhile, the province's opposition parties say the Rogers' story illustrates how the rules around home care must change.

"Home care is always related to a health-care issue," said provinical NDP Leader Lorraine Michael. "Therefore it should be part of our health-care system and it should be based on need."

Michael says families dealing with complex health needs already face daunting medical bills.

Liberal MHA Andrew Parsons says forcing the family to pay out 40 per cent of their income makes no sense considering the cost of a hospital stay.

"It's $1,500 a day to have a bed in a hospital — $45,000 dollars a month," said Parsons, doing the math.

"It's about $9,000 a month for home care. So if you want to look at it in terms of dollars and sense, it's cheaper to keep these people at home together to care for their child with full-time home care."

It brings the bill to the health-care system to half a million dollars a year.

Both opposition parties say there has to be a better way.

"Use logic, use common sense and make the right decision," said Parsons. "In this case it's not happening. We need to ensure that we have some flexibility there to apply to certain circumstances."

Michael is also calling for change.

"Everything about it is wrong," said Michael. "I'm going to be calling on the minister to step in on this one and realize just how idiotic it is."

The province, meanwhile, is defending its home-care policy.

Health Minister Susan Sullivan says the province pays for medical equipment and supplies, and also supplements home care, but parents are expected to pick up some of those costs.

"I have three children of my own," said Sullivan. "I understand it's quite costly to raise children. I absolutely understand that and that it's even more costly when you have a child with disabilities."

Sullivan says she doesn't think a hospital is the right setting for a child who can be cared for at home, but she didn't given any indication she's willing to step in and offer extra help to the Rogers.