A young Ontario father who suffers from kidney disease and needs a transplant has found out the drug benefits he lost because his wife is collecting employment insurance while on maternity leave will be restored.

Ryan Davis, who lives in Wallaceburg, about 140 km southwest of London, said his family was "blindsided" when they initially discovered he would lose the drug and disability benefits he had been collecting. "If I don’t have those drug benefits, the hospital will not move forward with the transplant."

"I cried all day long the first day we found out we were going to get cut off," said his wife, Rebecca.

An Ontario government regulation requires household income from EI to be deducted — dollar for dollar — from provincial disability coverage. Similar rules apply across Canada, essentially to prevent people from receiving assistance from two levels of government.

Davis said he found out just two days before his $850 monthly benefit was due that he wouldn’t be getting it for October.

No coverage, no transplant

"I don’t feel the government owes me a living," he said. "It’s just that I need disability so that I can get my transplant and get back to school and get working."

His wife had just started collecting maternity benefits, after giving birth to a premature baby girl at the end of August. She normally earns $1,500 per month — and has no drug coverage.

"My husband is not well and might need drugs at any time," she said, adding there is no way they could afford the post-transplant medications, which cost thousands.

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Baby Olive's mother is afraid she will have to leave her and go back to work so her father can get the medical treatment he needs. (CBC)

She has a full-time job as an early childhood educator. Her husband was studying engineering, until last fall, when he became too ill to keep up with his studies. With a baby and two other young children, they are now borrowing from family to buy groceries.

"It was tough when I found out I was pregnant because I knew things were going to be hard, but I didn’t realize they were going to be this hard," said Rebecca, whose pregnancy was unplanned.

"It almost feels like we’re being punished for my husband being ill and for having a new baby, which should be such a joyous time."

Her husband had hoped to have a transplant by the end of the year, because his mother has been approved as a donor. He is currently undergoing dialysis treatment, which takes up to five hours each day.

"My husband, I’m sure, doesn’t like the feeling that his illness is causing so much turmoil," Rebecca said. "We’ve had our feet kicked out from under us."

Her husband adds: "I feel like I should be trying to find a job, but I can’t."

Incentive to work, says government

While Rebecca Davis was working, her husband qualified for half of his maximum benefits. That’s because the province lets families keep employment income, without dollar for dollar deductions, as an incentive to work.

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"It’s an income replacement of last resort," said John Milloy, the Ontario minister responsible for disability benefits. "At the same time, we want to encourage people to work."

"I don’t need incentive to find a job — I already have a job," said Rebecca. "I am legally entitled to take a maternity leave. I’ve paid into my unemployment. I have a job to go back to."

Unless an exception was made, Rebecca said she will have no choice but to stop breastfeeding and go back to work — against her doctor’s advice — so her husband can get his benefits reinstated.

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John Milloy, the Ontario minister responsible for disability benefits, said he will look at the Davis case, but there are no exceptions to existing rules. (CBC)

"I feel devastated that I have to leave my infant when she is so little and my family has to struggle like this."

The full deductions also apply in B.C and other provinces. However, if the Davis family lived in Alberta, they would still be allowed to keep a large portion of Ryan’s benefits. In that province, the first $775 of household income from EI cannot be deducted. 

Advocates for the disabled say there should be more flexibility nationwide, based on circumstances, because many Canadians are hit hard by the rules.

"Yes, they have incentives for work. That’s good. We all agree that’s a good idea. But it seems to me they are incredibly harsh when it comes to other kinds of income," said Robin Loxton of the B.C. Coalition for People with Disabilities.

"When people are getting dinged for what I think are stupid rules, then they should think what are the needs of that family? What is reasonable?"

Overhaul coming

Milloy says Ontario has 800 rules that govern people on assistance and he believes that should change.

"We are right now in the process of a pretty comprehensive review of social assistance," he said.

"That’s a good opportunity for us to look at the system as a whole and make sure that it’s supporting people, and if there are anomalies in the system to take a look at those."

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Robin Loxton, of the B.C. Coalition of Persons with Disabilities, said the dilemma faced by the Davis family is not unusual. (CBC)

He told Go Public he would  look at the Davis case. But he also said current rules don’t allow exceptions.

"I realize how serious this is," said Milloy. "There is no way that we can go in and change the rules for an individual situation. But we can make sure that they are able to access everything that they are eligible for."

After CBC interviewed Milloy, the Davis family found out late last week that their case was being reviewed. They were subsequently told that "transitional" drug benefits had been been restored. However, Davis is still without the disability benefits he lost.

Ryan Davis says he hopes his story will inspire the government to rethink the rules, particularly those for EI claimants, who bank on maternity benefits being there when they need them.

"They are kicking people when they are down and [EI is]

not government money," said Ryan. "You pay into it, so it is your money."

Submit your story ideas to Kathy Tomlinson at Go Public