Kaye Banez was on maternity leave with her second child when her firstborn was diagnosed with autism. A month later, the university department where she worked was shut down, leaving her unemployed.
Exhausted, with a newborn in tow, she spent the following months driving her son Lazarus, then two years old, to appointments to ensure he received behavioural intervention therapy for his food avoidance and speech issues. Her husband, a ramp agent at Vancouver’s airport, took night shifts to be able to help out during the day.
“I couldn’t get back to full-time work again,” says Ms. Banez, 40, who lives in Richmond, B.C. “We had to go with what the therapists’ schedules were because they’re hard to get.”
Fast forward five years and the Banez family now spends upward of $6,000 a year out of pocket on a variety of therapies, as well as specialized swimming and music lessons. Although Lazarus communicates more effectively, eats a variety of foods and plays piano, Ms. Banez has had to juggle multiple part-time jobs to pay for his therapy – jobs that give her flexibility to handle his appointments.
When Lazarus turned 6 in 2018, the $22,000 a year he was receiving from the B.C. government was cut off. In British Columbia, autism funding drops to $6,000 a year after a child’s sixth birthday, with $16,000 redirected to the school the child is attending.
“This leaves us parents having to either cut the therapy hours dramatically or we pay out of pocket,” Ms. Banez says. “We are constantly stressed out and frustrated that we cannot provide our son more access to therapy, and activities that would help him learn and grow and catch up with his peers.”
“It’s hard not to be emotional.”
Stories such as Ms. Banez’s are playing out across Canada as families of autistic children grapple with a patchwork of provincial and federal funding that varies widely from province to province. Ontario’s system is currently under a controversial review. What is the norm is that many kids are on multiyear wait lists for provincial funding, which means desperate parents must pay for interventions privately.
And the costs of paying for autism-related services are steep.
Annual support costs can vary from about $26,000 to $130,000 a person, according to the Ontario Association for Behaviour Analysis. Many families cut back on the therapies their children need – even though research shows that Applied Behaviour Analysis, the gold standard of autism therapy, and the more clinical Intensive Behavioural Intervention are most effective before the age of 5.
Others make huge financial sacrifices, such as quitting their jobs, cashing in investments or selling their homes.
Ron Malis, a Toronto-based financial adviser who has multiple clients with autistic children, says many families struggle with the costs of funding treatment. Some quit their jobs or stop contributing to registered retirement savings plans. “I have families selling their homes and moving into rentals,” he says.
Ms. Banez and her husband own a townhome, having sold two condos they had bought as investment properties. She works part-time now and the family is attempting to rebuild its savings. “We have significant debt,” she says. “It weighs on us.”
The cost of Lazarus’s care is high. The Banez family pays $300 a month for three hours a week of behavioural intervention sessions. A behavioural consultant charges the family $120 a month for food-avoidance therapy. Then there are therapy team meetings and school meetings that total $2,000 a year, as well as private school tuition. Swimming lessons with Canucks Autism Network cost $40, which pays for eight weekly sessions, and piano lessons costs $110 a month.
“We used to live very comfortably, going on vacations,” she says. “I used to have a significant amount [in] RRSPs."
The psychological toll is enormous. “On a good night, I usually sleep three to four hours,” she says.
Janet McLaughlin, an associate professor in health studies at Wilfrid Laurier University, polled 654 Ontario families in 2018 about the financial impact a diagnosis of autism can have. She found that 45 per cent of mothers surveyed worked less than desired, downgrading their careers, while 21 per cent of fathers reported the same.
“Parents go to extreme measures to support their children while on wait lists,” she says. “They don’t want to deny their children early-intervention therapy.”
Amanda Mooyer is struggling with this very issue. Her older son, Izak, now 4, was diagnosed with level 2 autism, which requires intensive support, on his third birthday. In late April of this year, her younger son, Finn, 2, was also diagnosed. Izak has been waiting to receive funding under Ontario’s Autism Program, meaning that the Mooyer family has had to pay for the majority of his therapy out of pocket to the tune of $10,000 a year. Finn is now on an 18-month-plus waiting list for funding.
Under the current program, once the boys are approved, they will receive $20,000 until they turn 6. There are no retroactive payments for previous out-of-pocket costs.
The family decided to rent in Keswick, Ont., two years ago, so that Ms. Mooyer’s mother could help with Izak’s care. But her mother became ill and died. The family enrolled Izak in ABA therapy for 3.5 hours a week at $45 an hour, which they pay for privately. Some speech therapy for Izak was covered under early intervention services, a provincial program.
Experts recommend 25 hours a week of this type of therapy for maximum benefit, but Ms. Mooyer cannot afford more therapy. While a family member paid for the first couple of months of therapy, she has now placed him in a daycare for two days a week at $160 a month. She also has to pay for his sensory aids, such as weighted blankets, a sensory swing and chew toys for teeth grinding. Ms. Mooyer is also considering a summer speech-therapy camp for Izak.
Although her husband has a salary of more than $100,000, Ms. Mooyer, 30, took a part-time job at Wendy’s to help make ends meet, which eventually she had to quit. Before having her children, she worked full-time at the U.S. Consulate in Toronto. She is currently attempting to complete college courses to requalify as an American Sign Language instructor. “[My husband] gets paid well but we are still struggling,” she says. The family has cashed in their RRSPs to pay for Izak’s therapy.
They worry what they will do when Izak turns 6 and his funding drops to $5,000 a year. Finn, too, will require intensive therapy – and Ms. Mooyer knows that the earlier he gets it, the better. “We are living day by day,” Ms. Mooyer says. “My husband is my rock – we hold each other up.”
Unfortunately, for most families with moderately to severely autistic kids, the financial burden does not abate, Ms. McLaughlin says. A recent study by Autism Canada found that 60 per cent of medical costs associated with autism are accrued after age 21.
“This never goes away,” she says.