Five years ago, Ken Duff’s wife, Sandra, fell out of her customized stair lift. Paramedics brought her to the hospital and urged the Duffs to consider moving out of their three-storey home. Sandra suffers from multiple sclerosis and her health would keep deteriorating.
Soon after the accident, the couple found a bungalow just outside Vankleek Hill. Within a year of the move, Sandra got a toe infection and was again brought to the hospital. To combat the infection, the Duffs drove to the Glengarry Memorial Hospital every eight hours for intravenous antibiotics. During their third visit, one of the nurses asked, “Why don’t you have home care?” Ken says at that point he didn’t realize it was an option. By the time they got home from that appointment, he says someone from the local Community Care Access Centre (CCAC) had left a message saying they wanted to come do an assessment.
From then on, the family has been receiving home care.
Earlier this year, Sandra was assessed as palliative and was assigned an extra 20 hours of care on top of the 60 hours they were already receiving every month. Unfortunately, Duff says those care hours are consistently not being met—most months only about half of them are filled, leaving Duff to fill in the gaps.
“We’ve been married for 40 years. I care, but I’m not trained,” says Duff. He acknowledges the quality of care he can offer doesn’t quite cover his wife’s needs.
Earlier this year, the Local Health Integrated Networks (LHIN), operated by the province, absorbed the CCACs and are now in charge of administering home care. Duff says when he’s contacted the Champlain LHIN about the care hours not being met, he’s given the same answer: it’s working hard to rectify the situation, but there’s no immediate solution available.
That message was echoed to The Review when it asked the LHIN what responsibility it has to ensure care hours are being met.
“The LHIN recognizes the impact this may have on patients and caregivers, and remains committed to work continuously with our contracted health providers to find solutions that support patient safety and well-being,” it wrote in a statement.
Care hours are contracted out to local service providers, such as ParaMed, Bayshore and Saint Elizabeth Health Care, and paid for by the LHIN.
Families can also hire service providers directly, something Duff has done before for weekend coverage, but $24 an hour quickly burns a hole in one’s pocket.
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Bayshore is responsible for the care hours for Sandra Duff. Ken says he’s contacted Bayshore before if there’s a “technical problem” with some of the personal support workers giving care, but the organization of the care hours is all up to the LHIN.
“It’s not up to me to deal with Bayshore if something is wrong,” says Duff, “It’s up to me to tell (the LHIN) so (it) can deal with the subcontractor.”
Bayshore did not respond to numerous interview requests from The Review.
Hedwig is facing a similar situation to the Duffs. Her mother had a stroke seven years ago, and has since needed care around the clock. The family has hired a private caretaker to cover most of Edith’s needs, but still need PSWs to cover the caretaker’s time off, or other support tasks like bathing.
The family was assigned 90 care hours every month after the stroke. Initially, there were no problems, but between 2014 and 2016, Hedwig (who chooses only to be referred to by her first name) says the hours were rarely entirely fulfilled.
ParaMed was the sole service provider until the CCAC at the time decided, in January 2016, to bring on Bayshore and split the hours between both companies. After that, Hedwig says the care hours were practically always covered.
But, much like the Duffs, that’s changed since the spring. Hedwig started noticing more and more gaps in coverage. In June, about 20 hours went unfulfilled—often without warning—and left the family scrambling to make up the difference.
“You’re at the mercy of what they give you,” says Hedwig.
Emma Tibbo is the regional director for ParaMed and offered a statement written in conjunction with the Champlain LHIN.
The statement said ParaMed can track staff through a handheld device during work hours to “ensure that scheduled visits are completed.” And added, “We have full responsibility to ensure that the care hours ordered by the LHIN are being completed, it is a responsibility we take seriously, and we report regularly to the LHIN.”
When asked why in some cases care hours aren’t being met, the statement mentioned that the “majority of our clients would like or require services at the same time during the day,” which can “impact staff availability.” It added that not meeting care hours is “usually when there are extenuating circumstances.” In that case, clients are put through triage and then contacted.
In a follow-up phone call, Hedwig said the PSW supervisor for ParaMed showed up to her mother’s house unannounced. Following the visit, Hedwig received a call from the LHIN to check in and send someone to look over her mother’s equipment.
“Looks like she’s moved things,” says Hedwig.
During the visit. Hedwig says she spoke with supervisor who told her she’s trying to fix problems reported by ParaMed PSWs, but that her priority is to go to new clients to “get them in the system.”
Ken Duff, Hedwig and ParaMed all raised the issue of proper staffing. ParaMed’s statement said, “systemwide, there is a lack of available PSWs.” Courses are suffering from declining enrolment and, specifically for home care, travel is often a deterrent.
Particular to this area, the expansion of the Hawkesbury General Hospital is also luring PSWs away from home care. With less travel and higher wages—often between five and eight dollars more an hour—hospitals can make for a more attractive work environment.
“We’ve known for years this expansion is coming,” says Duff. “The LHIN should’ve seen this coming and known that the agencies it’s dealing with will have trouble.” He adds that service providers need try and “build the pool” of available workers.
Tibbo, ParaMed’s regional director, says the company is currently running a recruitment strategy to do exactly that. Part of the plan is to work with various schools “in an effort to attract people to the program and attract them to our organization.”
Lack of staff—and therefore care hours not being fulfilled—has also been on the provincial government’s radar.
Last year, Ontario poured $100 million into home health care, $80 million of which was to add 350,000 nursing care hours and 1.3 million personal support care hours.
Though, the number of care hours may not currently be the problem, rather it’s filling those already allotted.
Why stay home at all?
“The easy way to deal with this is getting Sandra into a residence,” says Duff, “ but that’s not really the way we want to live.”
During one of the Duffs early meetings with the CCAC at the time, Sandra was asked if she wanted to be put in a facility with full-time care.
Ken says her response was very specific, “She said, ‘I have this beautiful home, this beautiful property, I want to get the chance to live in it’.”
“We’ve never raised the question again,” says Duff.
For Hedwig and her mother, it was a similar situation. The stroke turned the family’s world upside down, but her parents maintained they wanted to stay in their home.
Hedwig’s father has since passed away, but “I promised him that I would take care of my mom, that she wouldn’t have to go in a home because that’s not what they wanted,” she says.
Apart from a few minor issues, both Duff and Hedwig say they’re thankful for the quality care they have received; neither fault the workers who go to the homes.
Nonetheless, Hedwig says the provincial government needs to increase support for families who are taking care of their loved ones at home.
“As far as I know, the government of Ontario wants people to stay home,” she says. “But it’s not making it very easy for people to stay home.”
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