Tuesday 28 November 2023

The CCCE Summit Day 2 - Visit or Revisit the Highlights!

November 7th was Day 2 of the Canadian Caregiving Summit and it was just as exciting as Day 1! 

The theme of Day 2 was "Defining the need for a national caregiving strategy." The Canadian Centre for Caregiving Excellence told us that Canada (like many other countries) has reached a tipping point: many caregivers feel like they cannot go on, care providers are leaving the sector and people accessing care are struggling. The second day of the Summit focused on defining the need for a national caregiving strategy and its potential to transform the care economy for a brighter future of care. 

We kicked off the morning plenary with a panel of Indigenous caregivers and experts discussing "Caregiving in Indigenous Communities and Decolonizing Care." Via video recording, we learned about the challenges and successes in supporting caregivers across 25 very remote communities in Nunavut. With 84% of the population identifying as Indigenous, any help for families must be culturally sensitive and accessible, even if the vast majority of communities are fly-in only. Panel moderator Angela Bradley from Community Living Toronto introduced fellow panelists Amber Ward (a second-year medical student at UBC), Holly Prince (researcher in the field of indigenous palliative care at Lakehead U) and Grant Bruno (Cree PhD candidate at the U of Alberta). Hearing all the different perspectives on care and family in Indigenous communities reminded me that the relationship-based communities of our First Nations have much to teach us about interdependence. Grant Bruno introduced a concept that we all talked about throughout the conference: care gifting. He said, "gifting care allows us to survive. Care as a transaction is not healthy. We shouldn't expect something back when we give care. In my community, we understand that ceremony is necessary and with it comes suffering, but also love, like when you dance in the hot sun for hours. I give care all the time every day to my family and to my friends. But my cup is overflowing because of ceremony, relationships and strength-based stories." 

I had the pleasure of moderating the next panel, a subject very close to my heart: The Nexus Between Caregiving and Care Providing. Paul Knoll is a 51-year-old Ottawa-based artist with Down Syndrome. Paul lives with his sister, Helen Ries (co-founder of Siblings Canada) and Helen's husband Steffen. Paul described how his support workers honour privacy in the Knoll/Ries household and how family performs certain care acts that paid staff cannot. Why? Because Helen and Steffen know and love Paul best. 

Next, we heard from Ann-Marie Binetti, a manager at Community Living Toronto who also cares for her parents at home. Ann-Marie didn't downplay the challenges of managing so many paid and unpaid care responsibilities in her life, but she also observed that, "I'm a better manager at home and more compassionate at work because of my role with my parents." 

Then Dr. Afolasade Fakolade spoke about her research in the area of caregiver wellbeing at Queen's University. "Caregiving is not a pathology", she said, "we need to protect caregivers and care providers simultaneously. Both need training in the core competencies of their roles. Just asking, "How are you doing?" is not good enough!" Finally, Dr. Heather Aldersey also from Queen's University spoke about a study she is currently undertaking called "Beyond Services." That study seeks to investigate ways and means of enabling and supporting natural care - the unpaid support in families that is so often unrecognized and undervalued. Both paid and unpaid support are necessary but balancing those out is tricky and families want choice in that balance. 

The next panel "Care Provider Workforce: Meeting the Needs," moderated by Johnna Lowther from Caregivers Alberta first introduced Dr. Ito Peng, a care economy researcher from the University of Toronto who presented the "5 Rs of care work: Recognize, Reduce, Redistribute, Represent and Reward”. Dr. Barathi Sethi championed the idea of a caregiver-friendly workplace policy and emphasized how this would benefit the wellbeing of all, but especially racialized women working in the front lines of health care. Jhoey Dulaca of the Migrant Workers Alliance for Change talked about the need to create pathways to Canadian citizenship for immigrants working in health care. John Yip, CEO of SE Health, surveyed all the home care staff at his company and found that their wellbeing was suffering because they feel so under-appreciated and undervalued. He is taking innovative steps to address this malaise in his workforce. Union representative Tyler Downey tackled the issue of racism and systemic oppression in health care systems. He challenged health care leaders to stop depending on barriers to the career growth of foreign-trained workers because they constitute cheap, skilled labour on the front lines. 

The morning plenary sessions ended with a bang! In the panel, "How to Build a Federal Benefit from the Ground Up", we learned the story of two federal benefits that helped to lift Canadian caregivers and their families out of poverty. Al Etmanski shared his ten-year history developing the Registered Disability Savings Plan, using a relationship-based approach to crafting solutions even when government bureaucrats say it cannot be done. The story of unlikely champions in government working together with broad public support was inspiring for us all. Tyler Meredith told the story of creating the Canada Caregiver Credit from within the highest level of government where that idea originated. Finding the perfect partners at the perfect moment was a message I took away and, that change can happen with patience and perseverance! 

Breakout sessions in the afternoon were wide and varied. I couldn't attend all the sessions because many were concurrent, but I can say a bit about two. I moderated a session titled "Round the Clock: The Complexities of Complex Care." The mother of a medically complex young man, Marcy White, identified two of her greatest challenges: the lack of proper training in home care nurses and the disorganized and dangerous transition of youth from pediatric to adult health care systems. Susan Bisaillon, CEO of Safehaven (a respite and residential facility for complex care children and adults) spoke about the need to "act now and apologize later" to meet extraordinary needs of her clients. Researcher Lin Li told us about the evidence that validates the testimonies of other panelists and added that family priorities also include how to construct a meaningful life for complex youth after school ends and how to enhance autonomy and independence when disabilities make that a huge challenge. Alex Munter, CEO of the Children's Hospital of Eastern Ontario offered the vexing perspective of how the billing systems of provincial health care makes delivering complex care...complex. "To innovate, we come up against remarkable regulation. It's hard to serve complex patients when we have 80 accountability agreements with Ontario and each agreement relates to a different body part." Dr. Nathan Stall then introduced a perspective on complex care seniors. Together, we wondered whether the big tent approach of the CCCE movement could provide a template for innovation in getting better services for the miniscule percentage of the patient population and their families with the very highest needs. 

As the mother of a complex son, I was delighted to attend another panel on complex care titled "Missing from the Data: Working Parents Caring for Medically Complex Children." I identified with the dilemma expressed in that panel - that a lifetime of caring for a technologically dependent child meant loss of salary, pension and social opportunities. This lived experience is not documented in the literature. But it needs to be! 

My next blog post will provide a round-up of the last day of the CCCE Conference. I hope by reading these panel descriptions, you will be inspired to click this link to join the movement for caregiver change in Canada!

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