We first took on the issue of Ontario’s privacy and consent rules for caregivers in our 2017 report–Making Privacy and Consent Rules Work For Family Caregivers–after hearing repeatedly that privacy and consent is a barrier faced by many of Ontario’s family caregivers, and is too often used as a crutch for the lack of engagement with family caregivers.
It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects.
One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.
Today – on Family Caregiver Day – Premier Kathleen Wynne announced the Ontario Ministry of Health and Long-Term Care’s intention to provide $6.5 million in funding for the creation of a caregiver organization in our province.
The way to get stronger is to let go of power, according to what Helen Bevan of England’s National Health System told a group of leaders in Ontario health care at The Change Foundation recently. That seemingly paradoxical notion made sense to those of us gathered there once we grasped Bevan’s argument that only by shifting to different kinds of power, finding it in the hands of different people and using it in different ways will health systems be sustainable and provide the care patients deserve.
When I talk about the impacts of being a young carer, my lived experience sheds light on how complex it is.
When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers.
We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.
As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers–which has its own issues and needs related to schooling and age and just being a kid–is forgotten.
It’s a good thing the meeting room at the Change Foundation has big windows, considering the rate at which Geoff Huggins was throwing accepted wisdom out of them during his recent visit. Huggins is director for health and social care integration in Scotland. He described his role as one of strategic and policy responsibility — but added “both of those are really quite outdated concepts.” So that was the first idea of how to bring about change that got tossed.
When The Change Foundation embarked on our engagement with family caregivers and health and community care providers in 2015, our goal was to better understand the caregiver experience — particularly in their interactions with providers.
Back in 2015, when we first waded into the unknown waters of the caregiver experience, we weren’t sure what we were getting into. But what we did know was that The Change Foundation, as an independent and unbiased organization, was uniquely placed to explore this issue with both caregivers themselves and the providers who intersect with them in Ontario’s health and community care system. So, while the path forward wasn’t exactly clear, we were confident it was the right time and opportunity for us to lead this necessary provincial conversation.
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