Contributing to Meaningful Change: Insights from CCKO Family Advisors Sophia Lawson and Shannon Reaume

Since its inception in 2015, the Complex Care for Kids Ontario (CCKO) program has relied on the knowledge and expertise of the family advisors serving on its Leadership Table and other key working groups. Family advisors bring invaluable lived-experience perspectives to the CCKO program, playing a key role in shaping its direction and ensuring that initiatives and resources are truly family-centred. They come from diverse backgrounds but share a common purpose: to create a more efficient, responsive and equitable care system for children with complex medical needs and their families.

CCKO is a provincial program led by the Provincial Council for Maternal and Child Health (PCMCH), which aims to advance integrated and coordinated care for children and youth with complex medical needs. The CCKO Leadership Table supports PCMCH in facilitating the effective operation of CCKO.

For family advisors such as Sophia Lawson and Shannon Reaume, complex care is a deeply personal matter. Both are mothers of children with complex medical needs and have firsthand experience navigating Ontario’s care system, understanding the stress this can place on families like theirs. Recently, PCMCH asked Sophia and Shannon about their experiences with the CCKO program. Their insights are shared below.

Q: Why did you get involved with CCKO

Sophia: I am a mother of four children, with my youngest facing various medical complexities. My involvement with CCKO stems directly from the invaluable support we have received from our complex care team throughout this challenging journey. Their guidance has significantly eased the process of navigating what can often be a complicated medical system.

I believe it is incredibly important that the voices of parents like me are present at the table, to share lived experiences and represent the many families who are also navigating this system. By participating in CCKO, I hope to contribute to meaningful change, ensuring that the perspectives of families are considered in shaping better care and support systems.

Shannon: We faced a lot of serious challenges with home care nursing after we were discharged from the NICU with my son Lucas. So I started sharing my experiences with medical professionals, and participated in surveys and focus groups focused on improving rural nursing. This experience, combined with my academic background in public health, led to my involvement with CCKO, further fueling my commitment to help families going through medical journeys with their child.

Q: What do you enjoy most about contributing to CCKO?

Sophia: What I enjoy most about contributing to CCKO is the intentional partnership between families and healthcare providers. It’s incredibly meaningful to be part of a space where the voices of parents of medically complex children are not only heard but truly valued. I’m proud to see that their lived experiences are taken into account in shaping care and improving transitions. Knowing that our input helps influence better outcomes for medically complex children and supports a more compassionate, family-centred approach to care is both fulfilling and motivating.

Shannon: I enjoy contributing to CCKO because it allows me to engage in forward-thinking and strategic planning that supports children with complex medical needs and their families. I value the opportunity to help shape programs that consider the family system, recognizing that chronic illness impacts parents and siblings, not just the child. I am particularly passionate about improving care transitions from paediatric to adult services and ensuring supports are in place for independent living.

I enjoy collaborating with medical professionals to advocate for practical needs that might be overlooked. One accomplishment I am especially proud of is helping to restore funding for nurses in daycare settings for medically complex children, ensuring continued access to early learning environments and community inclusion while enabling parents to work.

PCMCH is grateful for the family advisors serving on the CCKO Leadership Table. Thank you for your tireless work and dedication in advancing the CCKO program.

For more information about Complex Care for Kids Ontario, please check out our website.