Stuck in bed 23 hours a day: What's wrong with home care in Canada and how another country changed course

Seven days a week, Margot Algie can't get out of bed before noon. Not from choice. She has amyotrophic lateral sclerosis (ALS), a debilitating neurodegenerative disease, and needs a home care worker to help start her day. 

But once someone arrives to shift her into a wheelchair, dress her and help with toileting, Algie often only has one hour — sometimes two — before another home care worker arrives to put her back to bed at 4 p.m.

"Being stuck in bed … isn't great for my body, my skin or my psyche," said the Toronto woman, who is gradually losing the ability to do all basic living activities. 

But the home care company says "that's all that's available," she said.

At least once a week, she gets a call to say no home care worker is available at all. 

"I'm terrified when they say I can't have help," said Algie, 63, who says she's fully dependent on the care she receives. 

Algie is not alone when it comes to complaints about substandard home care. A recent CBC Marketplace investigation sparked hundreds of stories from home care clients and their families across the country, complaining of missed visits, shortened visits and the inability to get visits at all.

Compounding problems, the number of people who rely on home care is expected to increase by more than 50 per cent in less than a decade, according to the Canadian Medical Association (CMA).

It estimated in a recent report that more than 1.1 million Canadians receive home care and that by 2031, that number will likely increase to 1.7 million. On top of that, the report estimates the annual cost for long-term care and home care in Canada will almost double during that period, from $29.7 billion to $58.5 billion.

"This problem is getting worse," said CMA president Katharine Smart. "There is a real risk we will see our systems start collapsing over the next months and years." 

It's a grim prediction that doesn't have to materialize, said Dr. Samir Sinha, director of health policy research for the National Institute on Ageing and director of geriatrics at Sinai Health and the University Health Network in Toronto.

"The problem that we've had in Canada is this notion that if you can't care for someone at home, they need to go live somewhere else," said Sinha. "And so we have this real culture of institutionalizing people."

Sinha said what's needed isn't rocket science. Provinces need to invest more in home care to help people age in place.

"Right now there are about 200,000 Canadians living in long-term care homes," he said. "About a third of them — 60,000 or 70,000 people — could've actually stayed in their own homes, with proper home care support."