'We live with a cloud over our heads': Quebecers say home care services fall short

Rosalyn Williams-Ness says life would be very difficult without the home care she gets from her local CLSC.

Depending on the day, Williams-Ness, who uses a wheelchair due to cerebral palsy, may need help getting dressed, preparing meals or keeping her apartment tidy.

But the 52-year-old says it's a constant struggle to get the services she needs.

"I have to try and squeeze in a life, in between a complicated system that isn't very dependable," said Williams-Ness, who lives in Dorval.

While some workers are lovely and do their job well, she says she's often uncertain when workers will show up, how long they'll stay or even whether the tasks she needs completed will be done.

If her home care worker is on a tight schedule, Williams-Ness says she's forced to pick and choose what to prioritize — whether to get bathed or dressed, do the dishes or clean up a food spill from the night before.

So she tries to limit her complaints to the most serious issues.

"We live with a cloud over our heads," said Williams-Ness. "The services don't work the way Mr. Barrette [Quebec's Health Minister] thinks they work."

Investment lagging, critics say

Williams-Ness is one of nearly 343,000 Quebecers currently getting home care services. 

Many more are on the waiting list. Exact figures aren't available, but Annie Carrier, a home-care specialist at the University of Sherbrooke, believes there are tens of thousands of additional people who need it.

Besides more domestic chores and upkeep, home care services can also include medical visits and rehabilitation, such as physiotherapy or occupational therapy. 

According to Quebec's Ministry of Health, the government has invested more than $1 billion a year into home care services since 2014.

That may sound like a lot, but it's not enough, said Carrier.

She said many people aren't getting what they need or are only getting partial services.

Since the Liberals reorganized the health-care system three years ago, Carrier believes decision-making has become too centralized and less flexible — and CLSCs have more difficulty adapting to people's needs.

"The goal of home care is to help keep people healthy so they don't end up in the ER or a long-term care facility," said Carrier.

But that's where she fears more and more people will end up if the proper investment isn't made.

More services contracted out

One of the ways some regional health agencies have tried to save money is by contracting out the work.

Last year, contract workers delivered a little more than a third of home care services in Quebec. That's up from 20 per cent back in 2012, according to the Ministry of Health.

We are the ones getting the service, so it should reflect what we need.- Rosalyn Williams-Ness

Some home care clients say the shift has led to a deterioration in the quality of the services they receive.

Following a stroke in 2002 that left him partially paralyzed and in a wheelchair, Gordon Fletcher says most of his home care was done by CLSC workers at first. 

For the most part, Fletcher describes them as efficient and well-trained.

But increasingly, his home care is being done by contract workers and Fletcher says the difference is shocking.

"The agencies are hiring people with no skill sets," said Fletcher, 65, who lives in Dollard-des-Ormeaux, on the West Island. "We're talking about basic stuff like not washing their hands after emptying my bedside urinal."

Despite repeated complaints to both the CLSC and the private contractor, Fletcher says he's seen little improvement. 

He says the CLSC appears to have little to no oversight when it comes to whether the contract workers are sufficiently trained.

"You are at their mercy," he said. 

Hard to recruit good workers

The Quebec Council for the Protection of Patients says the competency of workers is one of the top complaints it gets about home care.

Paul Brunet, who chairs the council, believes poor pay has made it difficult for private contractors to recruit workers.

"A lot of these people who would need and deserve better training, who would need a better salary, are working for a minimum salary," said Brunet.

"Unfortunately, sometimes you get what you pay for."

Sheri McLeod, who heads up the NDG Senior Citizens' Council, a non-profit that works to improve the lives of low-income people over age 50 in the neighbourhood, says she believes the low pay has led to a high turnover and ultimately, a lack of continuity in services.

In the past, so-called auxiliary workers were an integral part of the health-care team and would pass on information to nurses or social workers about a client's health.

Now, with so many services contracted out, that kind of feedback is often lost, she says.

Quebec election promises

The Parti Québécois has made home care a major part of its election platform.

If elected, it's pledged an additional $1-billion investment in home care over the next four years.

The PQ's health critic, Diane Lamarre, says the money would help pay for more professional staff and a phone system that would automatically check in on elderly or mentally ill clients during heat waves or other disasters.

The extra funds would also help the government expand social housing and buy new technology, such as portable showers and smart watches that can detect high blood pressure, the party says.

The goal is to keep people in their homes as long as possible. "Each time someone stays for a year in a CHSLD, it costs almost $100,000," Lamarre said. 

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The Coalition Avenir Québec has talked about investing more in CLSCs, but so far, the party — which is leading in the polls — hasn't committed to any additional funding for home care.

On Thursday, the Liberals committed $200 million more to home care annually. A spokeswoman for Health Minister Gaétan Barrette said earlier that, since the beginning of the Liberal mandate in 2014, it's invested an additional $850 million in home care services.

According to the Liberals, that's resulted in nearly 1,500 more people working on home care teams, as well as a 37 per cent increase in home care visits and a 31 per cent increase in the number of hours home care workers provide.

Clients want to be consulted

For her part, Williams-Ness said she welcomes change, but before any extra money is invested, she says the government should consult with clients. 

"We are the ones getting the service, so it should reflect what we need, not what is squeezed into a schedule," she said.

Williams-Ness says she's at the point where she may have to get counselling to help manage her anxiety over her home care.

"When everything depends on someone else or some service coming to your rescue, it gets to become too much."