Striving for Health Equity for Children with Complex Needs: Balancing the scales

Description: Children with complex healthcare needs require access and responsiveness from multiple pediatric services spanning tertiary level care, education, in-home, and community-based services. The lack of continuity and communication across services and sectors takes a psychological toll on caregivers and contributes to persistent health and social inequities. Children with complex needs and their families experience higher rates of mental health issues, financial challenges and poverty, social isolation, and poor health outcomes. Within services, these disparities can be difficult to recognize and can impede a family’s ability to follow through on recommendations and access needed supports.
In this session we will discuss how collaboration requires us to acknowledge that disparities exist. We will hear from families about their experiences and learn strategies being implemented to advance equity through research, novel system-level initiatives community-based programming and family supports.

Speakers:
Nadine Gall, Manager - PCM, Pediatric Complex Care Program, Clinical Genetics, Neurology, Child Development, and Patient and Family Centered Care Alberta Children’s Hospital
Nadine has worked in Pediatric Complex Care for many years - recently focusing on innovative models of care for children and families with complex care needs. This includes leading a pediatric complex care program at the Alberta Children’s Hospital aimed at improving service delivery and care coordination across the continuum of pediatric services. Nadine trained in epidemiology at the Department of Community Health Sciences, Cumming School of Medicine. She has worked in areas of addiction and mental health, and has a long-standing interest in clinical ethics, trauma-informed care, and health system innovation.

Karen Taylor, Program Facilitator, Neurodevelopmental Disorders Care Coordinator, Child Development Center, Alberta Children's Hospital
Karen works as a care coordinator with the Neurodevelopmental Disorder (NDD) Care Coordination project at Alberta Children's Hospital. Karen has over 20 years of nursing experience providing family-centered care to children with complex needs. She has been part of creating positive change through AHS Improvement Way (AIW) projects to approach and solve problems, implement improvements, and sustain change. She has been recognized as a Family Centered Care Champion. Recently, Karen presented her work within complex care at the annual Children’s Healthcare Canada conference. Karen contributes to research projects focused on identifying barriers and bridging the gaps for families with unique healthcare needs.

Karen believes in listening to each family, understanding their unique journey, and meeting them where they are at. She is passionate about partnering with families and service providers to navigate health, education, and social services. These partnerships provide opportunities to coach parents on how to have their voices heard while balancing relationships and advocacy.
Karen’s greatest learning has come from raising her own three children, two of whom are neurodiverse. This lived experience has taught Karen that she was not meant to do this alone. She has discovered that every provider plays an important role in “the team” and shaping the design is up to her.

Francine Bourget, Family Partner
Francine Bourget is a devoted mom of three amazing boys. Her journey as a parent took an unexpected turn when her twins were diagnosed with Glucose Transporter Deficiency Syndrome. In response, their family embraced a medical ketogenic diet, fostering a low-carb lifestyle to support their health needs. Alongside being a dedicated caregiver, Francine finds joy in homeschooling her children, cherishing the opportunity to nurture their curiosity and growth. Her family's passion for the outdoors shines through as they embark on a quest to spend 1000 hours outside this year, creating cherished memories amidst nature's embrace.

Marisa Cowie, Family Partner
Marisa Cowie is a mom of two young boys living in Airdrie, Alberta. Her journey into medical complexity began when her youngest son was born at just 25 weeks gestation. Their family has spent the past few years searching for an overarching genetic diagnosis to explain his evolving picture. Marisa’s boys enjoy playing Lego, going on family adventures, and creating imaginary games together. They are very excited for their upcoming trip to Disneyland this summer!