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Parents of Disabled Face Onerous Burden Report Shows Mothers More Affected; Families Point to Decay of Services

Editor's Note: Editor's Note: The following article is reprinted from the Toronto Star, July 30, 2003, courtesy of Torstar Syndication Services.

A Toronto woman with a master's degree had to walk away from her $50,000 a year job to care for her disabled child.

The end of Janis Jaffe-White's career is typical of the sacrifice that working mothers with disabled children make everyday, says a federal report released yesterday.

The study looked at the lives of 155,000 children between the ages of 5 to 14 who have activity limitations. Seventy percent of the mothers surveyed in the Statistics Canada study said that their jobs had been negatively affected and their paycheques slashed because of a child's disability.

Jaffe-white says that in 1994 she had no choice but to quit her career in market research to look after her son Zachary, who had been diagnosed with autism.

She has never gone back to work.

"Looking after him is a full-time job," Jaffe-White said yesterday, adding that she spends countless hours every week on the phone trying to arrange services and funding for Zachary who is now 11.

"The biggest problem is the barriers that society throws up to keep disabled people out of the loop," she said.

"You can be on a waiting list for funding or services for years."

The study also found that in 14 percent of cases, both mother and father said their jobs were affected.

In 11 percent of cases, fathers alone felt an impact on their jobs.

"Not surprisingly, the more severe the child's disability the greater the impact on the family's situation," the study said.

Among children with severe and very severe disabilities, this proportion almost doubled to 73 percent.

And things are getting worse, said Pedro Barata, Ontario coordinator of Campaign 2000, a coalition of social organizations that was established to end child poverty by the year 2000.

"The sad reality is that the number of children living in poverty has increased and there are more disabled children today, and they are competing for less funding and fewer services," said Barata.

"Of the 155,000 children with disabilities, about 94,000 or roughly six out of every 10 requires some form of specialized aids, according to their parents,"

the agency reported.

"Of the 94,000 children requiring specialized aids, about 37 percent had some aids. But parents reported that their children needed more. Nearly 15 percent did not have any specialized aids, but needed some."

In total, about one-half of those children with disabilities requiring specialized aids did not have all the aids they needed.

"Of the 155,000 children with disabilities, about 52,000 had parents who said that they needed help with housework, family responsibilities, and time off for personal activities because of their child's condition."

Cost was a predominant reason why parents did not receive all the help they needed with housework, family responsibility and personal time off.