'The Supports Exist - Why Can't We Access Them?' : Unveiling the Barriers in Accessing Home Care Services for the Unpaid Caregivers of Children With Medically Complex Needs In Ontario

Existing research, and my personal experiences and observations indicate that caring for a child with medically complex needs without formal support causes caregiver burnout. An additional layer of complexity relates to the duality of being both parent and caregiver, and societies’ failure to understand how these intersect to cause undue burden on parents. The primary aim of the Major Research Paper is to examine why and how caregivers are facing these barriers in accessing home care supports in Ontario, along with the related health implications for children for their unpaid caregivers. This research is informed by the principles of critical social theory and emancipatory approaches along with human rights and intersectionality lenses. My comprehensive review of human rights frameworks demonstrated that rights to access home care supports are unequivocally established in international, national and provincial laws and conventions. In contrast, the qualitative interviews with ten caregivers of children with medically complex needs demonstrated several rights violations when accessing home care supports. The key findings include: negative impacts to caregivers’ health due to difficulty accessing home care supports; withholding information resulted in unpaid caregivers being unable to trust CCAC staff; and the financial impacts of not having access to home care. Based on participant interviews, changes to the home care system need to include a proactive not reactive approach, and an emphasis on creating partnerships with unpaid caregivers in policy creation.