In my twenty five years in the home care system, beginning as a home support worker, I’ve seen home care move steadily up the policy agenda, and onto the radar of our citizens. Still, in Ontario, home and community care represents only about 4 per cent of Ontario’s total healthcare spending, even with several years of consistent investment from the provincial government.

Unlike Medicare, which forms part of our identity as Canadians, home care never had its Tommy Douglas moment. Since publicly funded healthcare was launched in the 1950s, hospitals and physicians have been the focus of health system planning and funding. Home care has just always been with us – people cared for family at home, and when society urbanized and people didn’t have family around, community agencies and charities sprung up to help. Over the years, home care’s scope grew as people decided they would prefer to recuperate, age and die at home and governments saw it as a cheaper way to provide healthcare.  

Today, Toronto Central CCAC cares for complex patients in the home and community who, only five years ago, would have lived out their lives in an institution. Ontario is an acknowledged world leader in this area. Experts come from around the world to see how we do this.

The problem is that home care has now become an essential pillar of delivering healthcare across Canada without ever being properly defined by Canadians. That’s a problem, because many Ontarians I talk to, and other Canadians, are finding that the home care system they encounter is different from the home care they’d expected.

Governments across Canada are grappling with the future of home care and the media is adept at seeking out its failures. In fall 2014, the Ontario Minister of Health and Long-Term Care, Dr. Eric Hoskins, declared ‘modernizing home and community care’ to be his top priority for Ontario’s health system strategy and asked six experts to lead a review of the home and community care sector. Ontario has taken an important step in elevating the conversation with the release of Patients First: A Roadmap to Strengthen Home and Community Care. In particular, the government will develop a statement of shared home and community care values. Given home care’s importance to the sustainability of universal care, with provinces facing similar challenges in delivering it, and with most Canadians expecting to receive it at some point in their lives of their families, the country could benefit from a broader national conversation on our goals and expectations for home care.

Home care will impact nearly all of our lives at some point. We need a broader conversation on its future. Based on our experience talking to clients, my colleague Anne Wojtak and I recently identified some of the reasons for the disconnect between expectations and current reality.

It’s not always clear what publicly funded home care is. What people are entitled to and what people can expect from their home care program is not always obvious. People want to know how to plan for their care needs. Families want to know what’s available to support their loved ones. There are places in the world that explain this more clearly, which makes it easier for people and families to plan for illness or aging in their communities. 

There are a lot of people involved in home care. Numerous providers deliver an array of services. Mostly, they work as an effective team, but some roles overlap. Many patients and caregivers are overwhelmed by the number of people and organizations coming into their homes and lives. There are public and private providers. There is often no “one number to call” for clients and families. Patients needing complex care, living and aging in our communities, need a broad circle of support.

Home care is too disconnected from other parts of healthcare.  Home care has developed as an independent service separate from primary care doctors and hospitals. When home care support needs were less complex, this was not a big problem. Given the complexity of home care and the fact that our clients need services from many parts of the system, services need to be seamless.

Home care relies heavily on free labour. One reason it costs less to care for a patient at home, rather than the hospital, is because informal caregivers, friends and family, do a lot of the work. They form an important, though often unrecognized, pillar of the home care system. Respite care, tax-breaks, advanced care planning — and including caregivers as part of the care plan — need to be part of our home care conversation.

Few people are prepared for the responsibility of caring for a loved who is becoming increasingly frail and dying. Yet, it’s one of the most important jobs any of us ever do. I often meet caregivers who just want to do the right thing, but they need more support. It’s time for Canadians to talk with us about what we all want from home care and I am delighted that Ontario is leading the way. The path forward will not be easy, the choices we make now will affect the lives of people and their families for years to come. But it is the right time for home care to take its place in the hearts and minds of Canadians.

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