Loss of Funeral Subsidy Sparks Donations for Ajax Boy's Casket

When Donna Smith bought a fancier casket for her son's funeral, she lost burial subsidy

Sep 03, 2010 - 01:54 PM
Louise Brown

AJAX -- No one wants to buy a coffin for their child.

But when Donna Smith spotted the white and gold casket patterned with doves, she knew it was what she wanted for her son. The popular Grade 9 student with Down's syndrome died abruptly in July, mere hours after learning his summer flu was actually leukemia.

Yet the moment his grief-stricken single mother chose something more than a standard chipboard casket, she was told she lost all government help with funeral bills. No upgrades allowed, even if a friend paid the tab. Her struggle to bury her son Michael Knott with the dignity she felt he deserved has launched a nation-wide outpouring of donations and sparked a call for better funeral subsidies for the disabled and the poor.

"I just wanted a nice funeral for my son," said Ms. Smith, who moved to Ajax from troubled Malvern to give her sons a better future. "The plain box with grey cloth top turned me off. I wanted people to remember Michael in a beautiful way."

Ontario municipalities offer people on social assistance a funeral subsidy, 80 per cent of it paid for by Queen's Park, but most claw that back if the family spends more than the local limit, especially on a casket, the prime profit source for funeral homes.

It's a practice that disability activists and the Ontario Funeral Service Association want changed.

"With these economic times there are more 'social service funerals,' so letting families upgrade without penalty just makes sense," said past-president Brian Parent. "We're pushing municipalities to be more forward-thinking and allow families to add some services without losing the subsidy."

Because 15-year-old Michael received a monthly disability cheque from Queen's Park, his mother qualified for up to $3,587 towards his funeral from Durham Social Services. But once her friend paid $1,300 for a nicer casket, Ms. Smith was told she would forfeit the subsidy, leaving her with a total bill of nearly $10,500, including the $3,500 cemetery plot and $5,600 funeral costs. Far beyond the means of someone who works in customer service for a courier firm.

"We were appalled and outraged at the clawback of a subsidy for this delightful family," said Keith Powell, executive director of Community Living Ontario.

Peter Dill of Durham Association for Family Respite Services called it "unfair. Don't the working poor and disabled have the same right to a dignified funeral as anyone else?"

Ms. Smith's plight touched the hearts and bank books of many in the disabled community, people "who know the pain of having doors slammed in their face," said Mr. Powell. Well-wishers scrambled to cover the first $8,000 as a temporary loan so the funeral could proceed. Some had seen Michael, a rising poster-boy for community living who was nicknamed "Boochie", and his mother in a documentary called The R Word ("retarded") about Canadians with intellectual disabilities.

Others had watched Michael dance the night away at the 50th anniversary celebration last year in Ottawa of the Canadian Association for Community Living.

A Ryerson University class in disability studies collected $325 after watching The R Word and learning of Michael's death.

Tom Scanlan, a Toronto printer who does work for community living groups, handed over his credit card for the $3,500 cemetery bill, even though he does not know Ms. Smith.

"I felt so sad that the government would only give money with strings attached," fumed Mr. Scanlan. "The only way to bury someone for that amount is to put them in a box and dump them in the ground - it's like something out of Dickens."

In the end, more than 400 people attended Michael's funeral, made possible by the kindness of strangers.

The R Word producer Doris Rajan is planning a fundraising screening of the film in September to help pay donors back. "I can't imagine having to bury your child and not be able to afford to do it in the way you want," she said. "We all felt we had to do something for Donna."

Ironically, Ms. Smith should not have been denied the subsidy. In May, Durham Social Services became what is believed to be the first municipality in Ontario to allow families to upgrade a casket for a social services funeral if a third party foots the bill without automatically losing the subsidy, said Paul Cloutier, director of income and employment support.

"We came to the conclusion if someone outside the immediate family wants to contribute money for an upgrade, that shouldn't be a deal-breaker (for the subsidy)," said Mr. Cloutier, who investigated the case after being contacted by a reporter.

"But given the timing of Michael's death so soon after the change in our policy, it may have been an unfortunate accident of timing. Awareness of the new policy may not have had time to work through the system."

Durham Social Services is currently reviewing Ms. Smith's case.


Louise Brown is a reporter with the Toronto Star

Reproduced from http://newsdurhamregion.com/news/article/161174

More all disability articles.