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Question: Five years ago, at the relatively young age of 60, my husband suffered a stroke that left him profoundly disabled. After two years in a continuing-care hospital, he was deemed medically stable enough to return home with two hours of home care a day. This was authorized at the time by our local Ontario Community Care Access Centre (CCAC), which distributes provincial government funds to our neighbourhood care agency. Now, his new care coordinator has told us that the CCAC wants to cut us back to one hour a day – even though his physical condition hasn’t improved. He can’t roll over in bed, sit up by himself, use the bathroom, shower or transfer to his wheelchair without help. The care coordinator said the CCAC has not received any more funding from the government and has to find efficiencies. There is no way we can manage with just one hour a day. What are our options?
Answer: If it’s any consolation, you’re not the only one who has a problem with the CCACs and their handling of home care.
In September, Ontario’s Auditor General Bonnie Lysyk released a report that was highly critical of the province’s home care system, noting that as little as 62 cents of every dollar spent goes to face-to-face client services. (By contrast, the average salary of a CCAC CEO was $250,000 in 2013, up 27% from 2009.)
Then in December, Ontario’s Health Minister Dr. Eric Hoskins followed up with a plan to scrap the province’s 14 CCACs and have their responsibilities taken over by expanded regional health networks.
However, it will take a while to carry out these changes. That means, in the meantime, you will be expected to go through the CCAC’s complaints process – which, unfortunately, can be long and protracted, involving many separate steps.
That process is laid out in detail on the website of the Toronto Central CCAC – and it starts with the front-line staff.
“If you are unhappy with whatever is happening, you raise it with your care coordinator,” explains Julia Oosterman, a spokesperson for the Toronto Central CCAC.
If you can’t agree on home care support, then the next step is to call the Client Service Centre and ask to speak with your coordinator’s manager. “One thing [clients] can do is ask for another care coordinator to come in to do another assessment,” she suggests.
If you’re still not satisfied with that outcome, then you go up the ladder in the organization’s hierarchy and ask to speak to the manager’s director.
Oosterman says most complaints are settled before they reach this stage. “We are very good creative problem solvers,” she says.
But if there is still an issue at that point, you can raise your concerns with three other bodies:
- The Client Experience Office: The staff of this office functions like a CCAC “internal ombudsman” says Oosterman. The office “looks at things from an impartial view,” she adds.
- Long-Term Care Action Line (1-866-434-0144): This service is provided by the Ministry of Health and Long-Term Care. It takes calls from people who have complaints about home and community care services. An Independent Complaint Facilitator (ICF) would be assigned to look into your concern, although the CCAC is still responsible for working with you to resolve the issue.
- The Health Services Appeal and Review Board (HSARB): This is an independent tribunal set up by the Ministry of Health to address complaints about the health care system, including such matters as your husband’s eligibility for services and the types or amount of service he receives. “It’s like a court, basically,” she says, “both side present their cases.”
Oosterman says people can choose any of these three options right from the start – and bypass the caseworker, manager and director. But going up the chain of command “is the preferred route,” she says. “It actually behooves someone who has a concern to follow the process, so it shows… both parties have tried in good faith to resolve the issue. ”
Oosterman noted that the Toronto Central CCAC has faced a 73% increase in the number of medically-complex clients who are receiving some form of home care during the past five years. These individuals would have been traditionally cared for in long-term care facilities.
She says the needs of clients are re-assessed on a fairly regular basis. Care coordinators work with clients to draw up a care plan, says Oosterman. Not all of that care will come from the CCAC alone. Instead, a CCAC may point to other forms of support in the community. “We need to continue to provide care to all the people who need us within the funding we have,” says Oosterman.
It’s certainly true that Ontario’s health care system is going through profound changes as the population ages and more patients are cared for at home.
But the CCAC’s complaints process does seem overly cumbersome from the patients’ perspective. It would be nice to have one centralized office that deals with all complaints, so people don’t have to keep repeating themselves as they take their concerns from one official to the next.
Hopefully, that might happen with the reforms now underway, says Dr. Joshua Tepper, CEO of Health Quality Ontario, a provincial agency with a mandate to improve the health care system.
“It is really important that all parts of the health-care system have good patient-relations processes,” says Dr. Tepper. “And a way of making it more responsive to the needs of patients is to involve them in the design of those processes.”
I can imagine that you already have enough to do just looking after the day-to-day needs of your disabled husband. But if you have any extra energy, it would be worthwhile for you – and others who have been through the system – to speak up about your experiences as home care is revamped in Ontario.
The Health Minister has said consultations will take place over the next few months before changes are implemented.
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.