Health-care resourcing is failing Canada’s most vulnerable children

For the 850,000 Canadian families struggling to ensure the best possible outcomes for their children living with neurodevelopmental disabilities (NDDs), the recent crisis in children’s hospitals across the country came as no surprise. Children with NDDs are deeply and disproportionately affected by the deep cracks that the pandemic exposed—and widened—in the public services designed to serve them. At Kids Brain Health Network (KBHN), we continue witnessing the devastating impact the health-care resourcing crisis has on Canada’s most vulnerable children. The pandemic exposed the fragility of Canada’s health-care system and removed access to necessary supports for thousands of Canadian families. Nicola Lewis is the chief executive officer of Kids Brain Health Network. Photograph courtesy of Kids Brain Health Network Prior to 2020, families were already struggling to access timely interventions and supports for their children living with NDDs. For these children—who experience a higher risk of mental health disorders, sleep issues, and other health problems—ongoing supports and interventions are critical to healthy development and overall well-being. When the pandemic hit, virtually all existing supports evaporated and many families continue to carry the burden without any help. The results are catastrophic. In the absence of vital health-care supports and programming, children are regressing from the developmental progress that in some cases had taken years to achieve. When dealing with extremely challenging behaviours, some families have no option but to turn to the child welfare system. We need to do better as a society to support vulnerable children and their families. Funding, collaboration, and equitable access to the necessary services is how we will get there. Parents and caregivers are taking on the role of service provider to support their children, leading to burnout and a sharp increase in mental health issues. One mother contacted her support worker more than 200 times in six months to help manage her son’s escalating behaviour and mental health challenges. She said her family would have fallen apart if it weren’t for the availability of a support program funded by KBHN. This needs to change. Not addressing the needs of children with NDDs and their families in Canada’s health-care plan will only cause additional strain throughout the health-care system, including pediatric and mental health services. According to the Calgary Fetal Alcohol Network, it is estimated that fetal alcohol spectrum disorder alone costs the Canadian economy $9.7-billion each year. Canada has an opportunity to leverage our expertise and lead the charge in establishing disability-inclusive systems that can withstand any future crises while allowing children with NDDs to realize their full potential. Governments must recognize the unique needs of children with NDDs and commit to developing responsive policies and programs. We’re off to a positive start with the implementation of the Accessible Canada Act, a commitment to realizing a barrier-free Canada by 2040, and the Federal Framework on Autism Spectrum Disorder Act, but we can’t afford to lose momentum. Employment, Workforce Development, and Disability Inclusion Minister Carla Qualtrough makes an announcement in Ottawa on Nov. 17, 2022. The implementation of the Accessible Canada Act and the Federal Framework on Autism Spectrum Disorder Act is a positive start, but we can’t afford to lose momentum, writes Nicola Lewis. The Hill Times photograph by Andrew Meade We now have the opportunity to put systems in place that will allow for a more thoughtful approach to future crises. With the pandemic showing gaps in our health-care system, an expert advisory group is needed to consult around the needs of children with NDDs in any emergency situation. When developing a national child health strategy, the federal government must consider the unique needs of children living with NDDs and ensure that the plan is inclusive of all children in Canada. Canada must also prioritize expansion of the Connecting Families Program, designed to bring high-speed internet to families in need, including those with children who have NDDs. This is especially critical now that many services and supports have expanded to virtual models and parents can take advantage of online services. The pandemic shined a light on what families living with NDDs have always known: having systems of support in place is non-negotiable. However unwanted, the COVID-19 pandemic is unlikely to be our last global health emergency that negatively impacts Canada’s health-care resources. Now is the time to work towards a future where services and supports for children with NDDs are essential. Support for these groups is imperative, we must do everything for the most vulnerable amongst us. KBHN and other not-for-profits have the expertise to help, and we are ready to work with the government and other key stakeholders to ensure all kids in Canada with NDDs are supported in future health-care planning and resource allocation. The livelihood and wellbeing of countless families depends on it. Nicola Lewis is the chief executive officer of Kids Brain Health Network, a Canada-wide network that develops and harnesses scientific advances in technologies, interventions and supports with the goal of helping children with neurodevelopmental disabilities and their families live the best lives. The Hill Times