The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder

Abstract

WHY IS THIS AN IMPORTANT ISSUE? An estimated 1 in 86 children are diagnosed with Autism Spectrum Disorder (ASD)1 making it the most commonly diagnosed childhood neurological condition in Canada.2 The true costs of lifelong support for people living with ASD3 are often underestimated and fail to acknowledge the value of caregiver time over the lifespan. Significant gaps in publically provided support systems leave the cost burden to be picked up by families. Relying on continued family supports where community services are fragmented or unavailable is not a sustainable approach. WHAT DOES THE RESEARCH TELL US? A continuum of supports are needed Most people living with ASD need supports that range from occasional assistance with higher level tasks, like organizing appointments or banking, to those who need continuous help with daily living.4 Areas where supportive care may be needed can be categorized broadly to include: self care, home living, service co-ordination, personal organization, health and safety management, adult day opportunities/employment, transportation, advocacy and social skills. These supports are most successful when they address the individual’s uniqueness in terms of communication, social, sensory, behavioural needs and physical and/or mental health conditions. Currently there are a lack of available supports, limiting opportunities for socialization, employment and residential living resulting in reduced independence for adults with ASD.