When a child is diagnosed with autism, families face a lifelong financial load they should not be left to shoulder alone, says a new report from the University of Calgary.
Researchers from the School of Public Policy found the costs of care can be staggering — as much as $159,000 a year for an adult needing 24-hour care.
And while the extra expenses begin in childhood, the gaps in public supports and services are particularly glaring for adolescents who leave the school system — and the care and daily structure that go with it.
“There’s a support cliff that comes at age 18,” report co-author and professor of economics Herb Emery, said in an interview.
The result of the cost burden is “we’ve destroyed families and bankrupted them.”
He said that at a time when prevalence is rising, governments have to start developing policies and budgets that consider the costs of caring for those with autism and other developmental disabilities into adulthood, rather than leaving families floundering without adequate support.
The report comes at a time when Ontario is reviewing the mounting demand for services for those with autism, which currently affects roughly one in 88 children and is the most common neurological disorder diagnosed in children.
Ontario Ombudsman André Marin launched an investigation into the dire lack of services for young adults with autism and other developmental disorders after several families in crisis threatened to abandon their children because they could no longer care for them. Marin has received more than 1,000 complaints from parents who are broke, sick or unable to find programs or group homes to keep their adult children safe.
The Calgary research is the first of its kind to tabulate the caregiver costs by using an actuarial approach that considers replacement costs of care and the risks associated with not providing it.
Emery said the results are conservative and show that society and governments have consistently underestimated the financial burden.
The researchers used three examples across the autism spectrum. They found care for someone considered high-functioning and needing only occasional support would be about $31,000 a year on average, while costs for someone needing 24-hour supervision would be $159,000.
They estimated the lifetime caregiving costs for someone with severe autism needing round-the-clock support could be as much as $5.5 million.
“Only a very few families will have the means to afford to pay for total care,” the report said. “So in most cases, the responsibility for care falls largely, if not entirely, on the family, or in the worst-case scenario, the autistic individual is left with inadequate care.