How to get support for raising a child with disabilities

“Kids with [a disability] often need intensive hands-on support that can only be provided by those with specialized training,” says Karen Dickenson Smith, executive director of the Fraser Valley Child Development Centre, a charity that focuses on support for families with younger children living with disabilities in British Columbia. “Parents end up taking on a lot themselves in terms of childcare.”

The cost is expensive. Nearly 40% of Canadian parents caring for children with disabilities were forced to reduce their working hours, according to Statistics Canada Opens in a new window.. The loss of time is reflected in the average income for a household with a child with a disability. These families earn nearly $10,000 less than the average Canadian family, even though their expenses are far higher.

“It just costs more money to have a child with a disability, when you think about any kind of adaptive equipment, from wheelchairs to tube feeding,” says Lorna Selig, transition coordinator at The Children's Link Society, a non-profit in Calgary that supports special needs families. “The ongoing dollar amount is so significant, far beyond what it would cost to raise a typically developing child.”

But it's about more than just dollars. “All of the typical wellness activities that we need to do as human beings change when we have a child with a disability,” Selig adds, citing isolation and mental-health issues as unspoken challenges for many Canadian parents. Three-quarters of divorced or separated parents in the Statistics Canada survey cited a child's severe disability as a reason for the split.

The federal and provincial governments offer help to cover the high costs of raising a child with a disability in the form of tax breaks, savings initiatives and grants. The funding helps provinces run dedicated programs across the country. Ontario offers financial support in the form of the Special Services at Home initiative, which helps families pay for special services in or outside the family home; Alberta has the Family Support for Children with Disabilities (FSCD) program; and British Columbia has its At Home Program, introduced in 1989, to help with living costs for families.

Programs like these have been especially important for parents caring for children with disabilities during the COVID-19 crisis, explains Selig. “When things first shut down in mid-March, families were in a significant panic,” she recalls. They had to bring in paid support. “To find good skilled staff, parents need to supplement the amount that the FSCD has determined as the benchmark.” To help cover these out-of-pocket expenses, there’s a disability tax credit that reduces what those with a disability or caregivers pay in federal taxes. There’s also a child-disability benefit, which provides regular tax-free payments for families with a child with disabilities.

In 2020, the Canadian government also announced a one-time tax-free payment of up to $600 to those who qualify for the disability tax credit to help cope with the COVID-19 crisis.

While these benefits are helpful, they don't cover all the necessary costs, especially for the many families that will need to care for their children far into adulthood. “I know folks who are well into their 50s and 60s and still contributing financially and caring for financially dependent adults,” Selig says.

Melberg-Schwier will continue caring for Jim, now 46, for the rest of her life. She says one of the biggest financial benefits has been the registered disability savings plan (RDSP).

Similar to a registered retirement savings plan (RRSP), the RDSP is a long-term federal savings program open to those who qualify for the disability tax credit. Payments into the RDSP are eligible for special government grants and bonds from the government. “It's provided us with a lot of reassurance that Jim can amass his own funds,” says Melberg-Schwier. “If something happens to us, Jim's got money to buy services.”

While there are government and financial-aid programs designed to help cover the high cost of raising a child with a disability, “the strongest indicator of safety and security for their [children] is the number of unpaid relationships they have in their lives,” she says.

Beyond immediate friends and family members, parents caring for children with disabilities can turn to a variety of networks for both moral support and logistics help. Support networks like these are crucial for parents with children with disabilities, says Rebecca Pauls, executive director of the Planned Lifetime Advocacy Network, which networks with families with children with disabilities.

Navigating all the challenges to care for Jim is an “all-consuming storm,” says Melberg-Schwier, adding that when she does find the right support, it's invaluable: “You just want to get to a point where you can enjoy your family."