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

Abstract

When a child is diagnosed with autism spectrum disorder, the significance of the impact that diagnosis can have on his or her family’s life is incalculable, except in one respect: cost. If that child is severely impacted and requires constant and lifelong supports, then the value of caregiver time required to support that individual is approximately $5.5 million higher than that for someone without autism. An autism diagnosis of a high-needs child at age two represents the equivalent of telling the family that they must make an immediate lump-sum investment on that day of $1.6 million, invested at a five-per-cent return, to pay for the lifetime costs of care and support their loved one will require. And that amount does not even account for added professional services, such as speech therapists, psychologists, and occupational therapists, or additional out-of-pocket expenses that may be required, such as special equipment or diets. Autism is the most common neurological condition diagnosed in children and it is now estimated that one in 88 children will be diagnosed with autism spectrum disorders. Yet, across Canada, there are significant gaps in the publicly provided support system, leaving the cost burden to be picked up by families. In the case of those individuals requiring constant support, 24 hours a day, every day, the cost of hiring caregivers alone would require an annual income of $200,000 — before a family even begins to pay for shelter, clothing, groceries and other basic necessities. Already families with severe high-needs children are more likely to experience lower income than they might otherwise, due to the extra care commitment their loved one requires. Only a very few families will have the means to afford to pay for total care. So, in most cases, the responsibility for care falls largely, if not entirely, on the family, or in a worst-case scenario, the autistic individual is left with inadequate care. Autism is an expensive condition and governments may underestimate the full cost of community-based supports needed for the vast range of unique needs of those living with autism. A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country. As autism becomes increasingly prevalent, continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach. Canadian policy-makers will need to consider the costs of a growing and aging population of individuals living with autism who need a range of supports so that adequate quality of care and a decent quality of life are enjoyed by many who remain some of this country’s most vulnerable citizens.