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Sharon Ruth and daughter Colleen pose for a portrait at their home in Oxford Station, Ontario, April 25, 2012. (Dave Chan/Dave Chan/For The Globe and Mail)
Sharon Ruth and daughter Colleen pose for a portrait at their home in Oxford Station, Ontario, April 25, 2012. (Dave Chan/Dave Chan/For The Globe and Mail)

Parents of gravely ill children feel betrayed by Harper budget Add to ...

Families of children who are gravely ill have been left out of a plan that addresses Prime Minister Stephen Harper’s election promise to help parents whose children are in dire circumstances.

Earlier this month, Mr. Harper announced that the government will pay families of murdered or missing children $350 a week for up to 35 weeks as they cope with the death or disappearance. The campaign pledge had included parents who cannot work because they must be at the bedside of a gravely ill child.

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Sharon Ruth, who had to take unpaid leave from work when her daughter Colleen was in cancer treatment, wants Mr. Harper to explain why people in her circumstances were left out.

“They probably will say it’s the money,” Ms. Ruth said.

The government is going through a period of austerity and, while few children under the age of 18 are murdered or kidnapped by strangers, a significant number fall gravely ill. About 1,500 are diagnosed with cancer alone each year.

Ms. Ruth said people who cannot work because they are ill can obtain EI sickness benefits, she said, and should be able to get benefits when they are forced to stay home for an extended time with a very sick child.

It is a battle that Ms. Ruth has been fighting for the past nine years since Colleen, then 6, was diagnosed with leukemia.

Colleen was in and out of hospital for more than a year and could not go to school because of a weakened immune system. Ms. Ruth and her husband took alternating unpaid leaves from work to care for her. Under emotional stress and living on half their normal income, they had to refinance their house.

“Childhood cancer rates are on the rise but the key is, so are the survival rates, so we have all of these fundraisers to raise money for cancer research,” said Ms. Ruth, a bank manager who lives with her family in Oxford Station, south of Ottawa. But “we just leave the parents, either the single parents or the two-income families – and it’s a middle-class issue here – we leave them in the lurch.”

Last fall, Ms. Ruth, 15-year-old Colleen, and Edwina Eddy, an 80-year-old Ottawa woman who lost her own son to cancer, paid a visit to the offices of federal Human Resources Minister Diane Finley.

Several top staff members sat down with the trio and pointed to a passage in the Conservative election platform of a year ago in which Mr. Harper promised to “provide enhanced EI [employment insurance]benefits to parents of murdered or missing children, and parents of gravely ill children.”

Ms. Ruth said she walked away from the meeting thinking the government was prepared to act. “I believed it was coming in the [March]budget,” she said.

But it wasn’t in the budget.

A spokeswoman for Ms. Finley said in an e-mail even though the two groups of parents were included in the same sentence of the election platform, they are “separate policy initiatives.”

Ms. Ruth said she feels betrayed. “I want Mr. Harper to tell Colleen and me to our faces why he dismisses the fact that children are surviving cancer, ignores that cancer research works, and why he insists on letting parents suffer severe financial blows at a time their child is fighting for their life.”

A federal compassionate-care benefit provides up to six weeks of payments to parents who sign a form saying their child is likely to die within the next 26 weeks. Most parents hold on to the hope that their child will survive.

As Colleen did survive: Today she is a healthy teenager with marks above 90 per cent who wants to be a doctor. But she said she feels let down by the government.

“A lot of my success as a cancer survivor is the result of the fact that my mom and dad were beside me through everything,” she said. “Isn’t watching your child have to fight for their life hard enough? Parents shouldn’t have to lose their jobs on top of that stress.”

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