Now a new study in the journal JAMA Pediatrics puts the cost of that treatment delay at an additional $267,000 per child over a life time.
That’s because later therapy is less effective, resulting in less independence in adults and the need for more lifelong support, says lead investigator Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview.
Using 2012 Ontario data, the researchers did a cost-effectiveness analysis—the first of its kind looking at autism and wait times in Canada. “We built a mathematical model to look at the probability that kids had of receiving intervention at different ages and paired that with outcomes data from the Ontario program,” says Dr. Penner. “We then linked expected gains in early intensive intervention with projections for future independence, which meant you could live independently and work in paid employment.”
Eliminating the Ontario wait, so that the average child with severe autism got therapy at 2.7 years instead of at 5.24 years, would save the government almost $53,000 a child over a lifetime, the study shows. It would save society $267,000—with family caregiver time for adult children being the biggest cost. “That gap shows the additional burden families take on when we don’t have timely access to programs,” Dr. Penner says.
The study used findings from a 2011 Ontario outcome study that showed that children who received therapy before age four gained an average of 20 IQ points compared to those who received it after. “We don’t expect programs to work for everyone, and IQ is not a perfect predictor of independence, but it is one predictor in studies looking at adult outcomes,” Dr. Penner says. She said future research needs to identify other variables.
Dr. Penner, who has a Masters in Health Services Research, says her clinical work prompted the study. “I was seeing families in my clinic six months after the diagnosis and the main issue that kept coming up was wait times, wait times, wait times. I wanted to get an idea of the impact of those wait times on the investment [taxpayers] are making. The main findings show that investing in earlier access to intervention is a good investment for governments and society: when people with autism do better and families do better, we all do better.”