Barbara rayment finds it challenging to budget for all the usual stuff a six-year-old needs, including the clothes and shoes her bright, chatty son Zachary outgrows nearly as fast as she can replace them. But along with all of these ordinary, expected costs, the Rayment family has some extraordinary expenses, because Zachary has cerebral palsy quadriplegia, a neurological disorder that leaves him unable to get around without a walker.
Canadians are justifiably proud of the fact that our publicly funded healthcare system protects most parents from being bankrupted by medical bills—when a baby is born prematurely and spends a month in the neonatal intensive care unit, for instance. But kids with conditions such as cerebral palsy and Down syndrome, and more “invisible” challenges like ADHD and autism spectrum disorder (ASD), need equipment, services and care that may not be covered by provincial health plans, other government programs or private extended health insurance. Plus, coverage varies, not only from one province to another but also depending on the diagnosis. Many families go without or wait for years to get services that would have been beneficial if used earlier. For the parents of kids with special needs, the gap is wide: So many are forced to cobble together a plan to help their children, often at great financial and personal expense.
So what does it cost to raise a child with special needs in Canada? “We don’t have enough high-quality data and evidence documenting the actual cost of raising a child with a disability,” says Stelios Georgiades, an assistant professor of psychiatry and behavioural neurosciences at McMaster University in Hamilton, Ont., and co-director of its Autism Research Team. Georgiades is currently involved in a long-term study, funded primarily by the Canadian Institutes of Health Research, of children with ASD across five provinces.
The most recent attempt to answer this question came in 2009, when two economists from Dalhousie University in Halifax authored a paper using data from the 2001 Statistics Canada Participation and Activity Limitation Survey. They found that 62 percent of parents of kids with a disability reported having out-of-pocket expenditures related to the child’s condition, and five percent of families requiring services such as physiotherapy and speech therapy not covered by a provincial health plan spent more than $5,000 per year on those expenses alone. As these figures are based on information collected a decade and a half ago, they are arguably long out of date, but they’re the best numbers we have. Here’s a sampling—albeit a humbly small one—of some of the costs associated with raising kids with extra needs.
Equipment & services
Rayment’s son requires quite a bit of special equipment that his siblings don’t, including a wheelchair, a walker, and ankle and foot orthotics (also called AFOs—boot-like gadgets that keep his feet positioned properly). Since Zachary’s muscles don’t co-operate and he needs help with many everyday tasks, like eating, he can’t attend just any summer program or ride the bike that’s on sale at Canadian Tire. It’s also impossible for Rayment to merely call the 13-year-old down the street to look after Zachary if she’d like to go out for the evening. “If your child attends camp or simply needs a babysitter, you pay more for those services than you would for a ‘typical’ kid, because your child needs a different level of care and support,” she explains. The tab for six weeks of summer camp, which runs every day from 9 a.m. to noon, totals $2,400. Half-jokingly, she adds, “I hope our other kids aren’t interested in going to camp.”
Because Rayment lives in Toronto, she can take advantage of some of Ontario’s programs to help offset Zachary’s expenses—for instance, the province’s Assistive Devices Program covers 75 percent of the cost of his wheelchair and AFOs—but she still ends up paying for many things herself. The AFOs, which he outgrows about every five months, are a staggering $4,000 a pair, she says. Then there’s all the gear that isn’t funded at all, such as a special car seat, bath seat and footwear. “All of this equipment is unique to children with special needs and is extremely expensive,” Rayment says. And keep in mind, this is only a partial list. Over the past four years, she estimates having spent between $10,000 and $20,000 every year on her son’s care.
ASD can also saddle families with substantial expenses—and it happens to be an excellent case study in how a family’s postal code can influence those costs. “Autism is exceptionally well-funded in BC,” says Linda Tobias, a mom in New Westminster, BC. Each child gets up to $22,000 per year up to six years old and up to $6,000 a year after age six (until age 18) to spend on approved therapies, programs, equipment, tools and parent training. What’s more, parents get to decide how to spend the money. “Because of the parent-controlled funding, there is a huge industry of autism-focused services, with providers competing for our business,” Tobias says. Consequently, she says, her son was in therapy about a month after his diagnosis. Though the rules for delivery are different, funding ceilings are even higher in Alberta and Newfoundland; Yukon offers full coverage up to 19 years of age. Some provinces, like Manitoba and New Brunswick, offer a set number of hours of intervention each week until a particular age, while other jurisdictions, like Nunavut, have no formal program in place.
Compare that to the situation in Ontario, where only one type of treatment—called Early Intensive Behavioural Intervention—is funded (typically 20 to 25 hours per week) and its waiting lists for funded treatment can stretch for two to four years, depending on the region. Since the earlier treatment starts, the more likely it is to be successful, some families will start something privately if they can, says Natalie Elms, a behaviour therapist and director of community relations at Morneau Shepell’s Children’s Support Solutions in Toronto. She adds that the estimated $60,000 a year price tag for a private program puts that option out of reach for most. Funding doesn’t typically cover everything, though—Elms says families with coverage still typically pay an average of $100 per week out of pocket with her agency. While funding makes therapy significantly cheaper, it’s still not accessible to all families, she says. Quebec offers publicly funded therapy delivered through health and social service centres, but again, waiting lists stretch one to two years long. And after a child turns five years of age, his case is no longer considered urgent, so you’re dropped off the list and have to go the private route, explains Marilyne Lemay, operations manager of Parcours d’enfant (Children’s Support Solutions) in Quebec City.
Funding and services for kids with other invisible challenges, like learning disabilities and ADHD, are similarly all over the map. “With ADHD, the only type of care that’s generally covered by the provinces is seeing a physician to get an assessment, diagnosis and prescription,” notes Heidi Bernhardt, president and executive director for the Centre of ADHD Awareness Canada. Waiting lists for specialists such as developmental paediatricians and psychiatrists can run from six to 12 months or more, she adds. “Any type of therapy beyond medication is out of pocket.” Waiting lists for psycho-educational assessment (which gauges how ADHD and learning disabilities affect the individual child’s learning, and outlines a customized plan for intervention and support with the child’s school) with a school psychologist run anywhere from one to three years, Bernhardt says. Parents who can afford it pay for one privately, she says, at a cost of around $3,000. “We’re still having significant battles with school boards [in many jurisdictions] to recognize these kids as what they deem exceptional students, which would qualify them for educational accommodations,” such as note-taking assistance and extended test times, as well as other modifications, Bernhardt says. It’s very much a two-tiered system: Families that are educated and know how to advocate and seek out resources are the ones that get them.
The cost of the actual services aside, it takes time to find, push for and coordinate them—an investment that exerts its own financial toll. Often, parents must cut back on work or even quit a job to keep up with the extra demands. “Although I did try to go back to work when Zachary was 11 months old, it quickly became apparent that it just wasn’t possible to take him to all of his medical and therapy appointments and hold down a full-time job,” says Rayment.
Ottawa dad Andrew Robinson, whose son has autism and other challenges, tells a similar story. “My wife resigned from a tenure-track professor’s position to become our son’s chief advocate and therapy organizer,” he says. For Sheryl Gray in Delta, BC, whose four-year-old son has Down syndrome, it was the other way around. She says he sometimes missed out on funded services because, as a former contract worker, she simply couldn’t afford to take time off to use them. “It’s very challenging when programs come up that your child might be eligible for, but if you miss work to take advantage of them, you don’t get paid,” she says. “My son is only just getting his first block of speech therapy now, because I’m finally in a position that has flextime.” Gray’s family will also be paying for a private school, partly because funding issues meant her public school couldn’t guarantee the constant one-on-one supervision she says is necessary to keep her son safe, since he’s prone to running. They also chose private school because he’ll get a better learning experience from the individual engagement.
While New Westminster, BC, mom Anne Bélanger says she is grateful that most of her son’s medical and therapy costs are covered, “other things, like saving for my own retirement, have taken a backseat,” she explains. “I think I’ll be working until I’m 80.” Instead, she’s saving for her son’s future (using a registered disability savings plan), because his physical limitations—he suffers from spinal muscular atrophy type 2—make it unlikely that he’ll be able to live independently as an adult. Since BC’s government disability allowance is $950 per month (with only $350 allocated toward rent) and the average cost for a one-bedroom apartment in Vancouver is more than $1,000, “I feel like I should plan for that,” she says.
Sandy Hodgetts, an assistant professor of occupational therapy at the University of Alberta in Edmonton, notes that parents who quit work or move to access services are also giving up important sources of social support, which can, in turn, affect kids. “We know that how well children do is linked to their parents’ well-being and vice versa, and well-being is linked to social support,” she says.
While Robinson’s family actually gained some support when they moved close to his in-laws in Ottawa—because of a lack of educational support and a shortage of trained therapists in Saskatoon—it came at a high cost. He gave up a full-time teaching position at the University of Saskatchewan for temporary, short-term teaching contracts, which meant “a significant drop in income—around 50 percent,” he says, not to mention the sacrifice of job stability and promise of career advancement. After spending time on waiting lists, the Robinson family now gets some financial help for their son’s therapy.
But there are bright spots, however. For starters, researchers are working to get a better handle on the costs involved, which will hopefully give parents and care providers a tool to lobby governments for better funding and more equitable access to services—without good data, it’s tough to convince governments to change, Georgiades says. In the next phase of his ASD study, a health economist will help measure the expenses associated with the condition. “The Public Health Agency of Canada [PHAC] will soon be launching a national ASD surveillance system that will actually not only estimate the prevalence and incidence of ASD in Canada but also document the services received and the associated costs between provinces,” he adds. “PHAC plans to use this model for other childhood disorders in the future.” And in the most recent federal budget, $2 million was set aside for a consistent cross-country strategy for meeting the needs of kids with ASD. “This will help us develop a national program and system for all kids and families dealing with autism, no matter where they live,” Georgiades says. “It’s very encouraging.” It’s also due, in large part, to the efforts of parents themselves, he adds, through advocacy groups like the Canadian Autism Spectrum Disorders Alliance. “We have to give parents a lot of credit—they’ve been amazing in terms of advocating for their children’s rights.”
Among families with kids with disabilities
62% Report out-of-pocket expenditures related to their child’s condition requiring services such as physiotherapy and speech therapy not covered by provincial health plans spent more than $5,000 a year on this expense alone.
5% Requiring services such as physiotherapy and speech therapy not covered by provincial health plans spent more than $5,000 a year on this expense alone.
38.4% of parents started working fewer hours.
$15k Average hit to annual income experienced by parents of kids with disabilities.
46% of parents either turned down a promotion or passed up a job for reasons related to their child’s condition.
* 2006 Statistics Canada Participation Activity Limitation Survey (PALS).
A version of this article appeared in our September 2015 issue with the headline, “Falling through the cracks,” p. 46.