Lifelong care-giving costs for an autistic child can reach nearly $160,000 per year, and gaps in the public health system mean parents are largely left to foot the bill, a new report has found.
Authored by the University of Calgary’s School of Public Policy, the report says that with few Canadians able to afford the high costs, and autism on the rise, the government must do more to help families.
“A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders,” reads the report, which was released at a press conference in Calgary on Wednesday.
“As autism becomes increasingly prevalent, continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach.”
The report’s authors, professor Herb Emery and research associate Carolyn Dudley, charted lifetime support-care needs and costs for three hypothetical individuals living with varying degrees of autism spectrum disorder (ASD).
They estimated the annual value of caregiver time for a “high-needs” case is $158,359 per year, for a moderate-needs case, $82,769 per year, and for a lower-needs case, $30,711 per year.
Approximately 200,000 Canadians have Autism Spectrum Disorders (ASD)—a brain disorder that causes developmental disabilities and is characterized by difficulties with communication and social interaction, as well as unusual patterns of behaviour, activities, and interests.
ASD is now the most common neurological disorder found in children, and those with severe forms of it require 24-hour care throughout their lives.
The government has many “gaps” to address when it comes to providing support services, especially for adolescents who have left the school system, notes the report.
“Fragmented policy delivery, lack of lifespan programming, disorganized services, IQ-eligibility issues, challenges finding staff, lack of respite options, and quality housing shortages are problems that add to the burden on families and individuals who need support,” it states.
The study estimates the value of caregiver time for an autistic child could cost a family $5.5 million more than a neurotypical individual—and that doesn’t include the cost of therapists, psychologists, and special equipment or diet.
These figures are significantly higher than previous studies that estimated lifetime autism costs range from $1.2 million to $4.7 million. Emery and Dudley argue that such costs are often underestimated by government and society.
The authors also make several recommendations to relieve pressure on families, including increasing the current annual caregiver tax credit of $300; providing more government funding to help boost the supply of caregivers and care centres; and introducing autonomy insurance, which has already been proposed in Quebec.
Removing the IQ screen for eligibility of services at age 18, which exists in some provinces, is another measure endorsed by the authors, who say this would help individuals living with ASD who have higher IQ but lack the functional skills needed for independence. Offering these individuals support could assist them in gaining employment, which would reduce the overall costs associated with their disorder.
Dramatic increases in autism diagnoses have been reported in several Canadian provinces in recent years including Prince Edward Island, Newfoundland and Labrador, and southeastern Ontario—ranging from 39 to 204 percent, according to a report from the National Epidemiologic Database for the Study of Autism.
In the U.S., the disorder is estimated to affect 1 in every 88 children, according to the Centers for Disease Control and Prevention.
Last year, the heartbreaking struggle of parenting an autistic child was highlighted when Amanda Telford, the Ontario mother of a severely autistic boy, turned her son over to the provincial government, saying caring for him without sufficient support had become unmanageable.