Navigating a funding labyrinth

Opinion

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This article was published 30/03/2024 (560 days ago), so information in it may no longer be current.

Phil Halprin was a Canada Revenue Agency auditor and, now retired, today remains focused on providing ongoing care for his adult, disabled daughter.

Liz Lepore is a financial advisor with a son, age 12, with a disability.

Besides sharing an obvious commonality, what’s also notably similar is they both found navigating the financial complexities surrounding their children’s disabilities challenging despite their expertise in matters about money.

“There are just so many topics to cover to get up to speed,” says Lepore, vice-president of client experience and practice management at iA Private Wealth in Toronto.

Although a certified financial planner, Lepore found herself unprepared upon her son’s autism diagnosis to find her way through the labyrinth of tax regulations, credit, deductions and government programs designed to help children with disabilities and their caregivers.

Similarly, Halprin found navigating the Canada Tax Act — a tome of regulation he knew well as an auditor — difficult at the best of times.

“There are so many possibilities,” agrees Halprin, now retired, whose daughter, now 31, also has autism and lives at home. “And it’s impossible for people, even like myself, to know all the answers.”

For average parents, who are not financial experts and whose children have a disability, the financial challenges are often all the more insurmountable while the tax system — with its many credits and deductions designed to help — feels impenetrable.

The struggle is indeed real, if somewhat hard to quantify by population.

Good data on the number of children with disabilities in Canada is scant, let alone for Manitoba. Yet according to one Statistics Canada report, there were more than 200,000 children in Canada with disabilities in 2006.

Those figures have probably grown substantially since, says Debra Roach, president of the Family Advocacy Network of Manitoba (FAN).

What can be said with relative certainty about most parents of children with disabilities in Canada — at least at first — is they often feel they’re on their own.

“Many families feel isolated because truly no one understands what we go through except for other families in similar situations,” she says.

That’s where organizations like the network can help parents, connecting them with financial experts with deep knowledge in this area. Even more important, they can link them with other parents who have been there, done that regarding applying for benefits and other programs, she adds.

First and foremost among those tax benefits is the disability tax credit. It is the gateway to other credits, deductions and tax-sheltered programs like the Registered Disability Savings Plan (RDSP), says Halprin, who volunteers with FAN, providing guidance on the tax concerns for families.

“When you slowly figure out that your child has special needs, and one of the first things you have to do is get a diagnosis in order to be able to apply for the credit.”

A physician or other qualified medical expert must fill out a form, deeming a child to meet the criteria for the credit, and the process is not always cut-and-dried as one might assume, he adds.

Complexity, in fact, is the norm as opposed to the exception with many of these programs, he adds.

While, at first glance, federal and provincial governments provide substantial support, many parents are so overwhelmed with the day-to-day concerns, they struggle to fully access all the needed financial benefits and support available.

That said, government is not unaware.

The Manitoba government created Children’s disABILITY Services (CDS) to address them, providing families with case management offering a “flexible individualized approach where the amount of service received depends on family’s eligibility and assessed need as well as the availability of program resources,” according to a statement provided to the Free Press.

Part of CDS’s role is also funding to community-based organizations like FAN and Manitoba Possible, another non-profit that for 50 years has supported Manitobans with disabilities across their lifespan.

Notably for parents, Manitoba Possible also offers a children’s service coordination program, involving case workers who “know the system,” says Lindsey Cooke, chief executive officer of Manitoba Possible.

“It’s a really crucial relationship with families particularly when they’re getting started.”

Case workers help families apply for funding for therapies and equipment required for their children. While case workers are not advisors that help families with detailed financial planning, they do have connections with trusted advisors with experience in this very specific field of personal finance, Cooke says.

Yet it’s a “common experience” that demand for services outstrips what organizations like Manitoba Possible can actually provide, she adds.

The need is great given many families struggle not only with the near-term financial challenges; their long-term financial well-being is also often deeply affected.

One federal government study evaluating the RDSP’s impact from nearly a decade ago found that 30 per cent of families with a child with severe disabilities struggled financially while nearly one-in-10 with a mild disability also face money-related difficulties.

The future can be daunting even for families with plenty of financial knowledge and assets.

“I know my son will be dependent on us forever,” says Lepore, as knowledgeable as any advisor on the subject matter.

“When I see commercials with retirees sailing on boats and travelling, I know that’s not going to be my retirement.”

The trade-off, however, is worth the peace of mind, knowing enough money will be set aside in a special trust and RDSP. Both are tax-sheltered to provide income for their disabled adult son without deeply reducing often already insufficient government monies, she says.

“I just want to maintain the lifestyle he has today for the long-term, and to do that, I am willing to give up stuff for my retirement,” Lepore says.

“I’m OK with that, but parents can really struggle to figure out how to balance these sometimes competing priorities.”

Joel Schlesinger is a Winnipeg-based freelance journalist

joelschles@gmail.com