11/06/2012 11:35 EST | Updated 01/06/2013 05:12 EST

Home care rules must change, says father of disabled child

A little girl at the centre of a controversy over home care is at the Janeway Children's hospital today after a long and difficult drive across the island on Monday.

Her father, John Rogers, drove Kallei, 2, to the Janeway from Stephenville Monday as a protest. He says government needs to make rule changes so his daughter can live at home.

"Sometimes policies were made and things change. This policy needs to change," said Rogers. "To be forced into poverty just to exist is wrong."

CBC first brought you the Rogers family's story last Friday.

Kallei uses a ventilator to breathe, she is tube-fed, and she needs intense 24-hour care.

The Rogers family used to pay $400 a month for their share of the cost of round-the-clock home care workers. Since Kallei's mother found a full-time job, Rogers said the family must pay $2,100.

"We're not trying to say we're not trying to pay anything. We're not trying to say we're not willing to pay more than we did before," said Rogers. "But $2,100 in my household is a lot of money. "

Options bleak

Rogers said his family could not afford to pay that monthly bill, so he was forced to bring his daughter to the Janeway where he estimates Kallei's care will cost $1,500 a day.

Rogers said the other option would be for his wife to quit her job. That would lower their home care bill, but the family would have to survive on his modest salary.

"To raise a handicapped child, there's a little bit more to it than just sitting in the corner and watching the tv all day," said Rogers. "That's disgusting, and she needs more than that."

"We need another house. We need a house that's suitable for a wheelchair and for her. We can't do it on my income. We need two salaries."

Officials sympathetic, but rules are rules

Rogers said that while government officials have been sympathetic, they have told him since his family has two incomes, rules are rules.

Rogers said he plans to stay at the Ronald McDonald House to be near his daughter for the short term, and to wait and see whether government will have a change of heart in his family's situation.