THE LIVED EXPERIENCES OF DEVELOPMENTAL DISABILITY CAREGIVERS AND SERVICE PROVIDERS IN ONTARIO

Providing care for children with developmental disabilities (CwDD) is complex and is a life-long journey. Caregivers (CGs) of CwDD experience higher levels of stress, declining mental and physical health, feelings of isolation, diminished financial outcomes, and an overall lower quality of life. Additionally, they often face marginalization and numerous barriers when trying to access funding and supports. This study explored the experiences of CGs of CwDD in the context of Ontario and included the perspectives of CGs and service providers (SPs) to investigate the role the government played in CGs ability to provide adequate care.Twenty participants were recruited through purposeful sampling, word of mouth, and social media posts. The research was guided by interpretive phenomenology and a transformative worldview. Data was collected through background questionnaires, one-on-one semi-structured interviews, field notes, and member checks. Interviews were thematically analyzed and triangulated three ways.Two themes emerged which portrayed participant perspectives of the experience of caring for CwDD and the complexity of navigating how to best advocate for and support their CwDD: “Paradoxical” and “The Voice, The Choice, and The Option is Not There”. The first theme discussed the contradictory nature of caregiving with respect to time, family, and emotions. The second theme elaborated on the hardships CGs face while trying to live lives of best practice when caring for their child(ren).This study contributed to previous research that discussed the barriers that CGs and CwDD face in society as well as when looking for supports. It was evident policymakers and allied professionals were putting up “red tape” when CGs were searching for supports. While CGs have come to the table to advocate and share their needs, their voices are not being heard.