THE VALUE OF CAREGIVER TIME: COSTS OF SUPPORT AND CARE FOR INDIVIDUALS LIVING WITH AUTISM SPECTRUM DISORDER

Carolyn Dudley and J.C. Herbert Emery†

SUMMARY

When a child is diagnosed with autism spectrum disorder, the significant impact that diagnosis can have on his or her family's life is incalculable, except in one respect: cost. If the child is severely impacted and requires constant, lifelong supports, then the caregiver time needed to support that individual is approximately $5.5 million more than for someone without autism. Diagnosing a high-needs child at age two translates to telling the family that they need to make an immediate lump-sum investment on that day of $1.6 million, invested at a five-percent return, to cover the lifetime costs of care and support their loved one will require. This figure does not even include additional professional services, such as those provided by speech therapists, psychologists, and occupational therapists, or out-of-pocket expenses for 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 largely to families. For 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 due to the extra care their loved one requires. Only a few families can afford to pay for total care. Hence, in most cases, the care responsibility falls largely, if not entirely, on the family, or in a worst-case scenario, the autistic individual may be left with inadequate care.

Autism is an expensive condition, and governments may underestimate the full cost of community-based supports needed for the diverse needs of those living with autism. A scan of provincial programs reveals a patchwork of unequal and incomplete supports for individuals with autism spectrum disorders. Gaps are notably evident once individuals exit the public school system, which at least provides some form of day support. Adult day supports, evening and night supports, quality group homes, availability of properly trained caregivers, respite services, recreational activities, post-secondary opportunities, and employment supports all suffer from varying degrees 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 sustainable. Canadian policymakers will need to consider the costs of a growing and aging population of those living with autism who require a range of supports so that they enjoy an adequate quality of care and a decent quality of life, like many who remain some of this country's most vulnerable citizens.

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