Supporting Canadian families of children with...

Supporting Canadian families of children with disabilities: unmet needs and service gaps

Abstract

Introduction Children who live with disabilities and/or chronic (or complex) medical conditions, and their families, require appropriate supports to thrive and reach their full potential. In Canada, child and family wellbeing has declined over the past years (1,2). Methods This article highlights the second phase of a sequential exploratory research study that identified what supports and services Canadian children living with disabilities/health conditions and their parents/caregivers need and want, now and into the future. This second phase consisted of surveys with 72 parents/caregivers of children and youth with disabilities and/or healthcare needs to learn whether their needs for services and supports in different domains of life - school, community, medical, recreation, family, and financial – were being met. Results Over half of respondents (52.5%) reported at least one unmet need (defined as “need but not receiving” services), and 16% reported between 3 and 5 unmet needs. The greatest gaps were in recreation, financial, and family supports. Individuals who were receiving services and supports were for the most part satisfied with them. However, depending on the type of service, between 6%−42% of individuals indicated that they were dissatisfied with some aspects of service. Discussion Findings from this study highlight the importance of adopting a larger systems approach of support that will coordinate and integrate the activities of sectors such as healthcare, education, and social services across the lifespan.