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Anthony Barrett, centre, who has autism, is 27 and expected to need full-time care once his parents Deborah Barrett and David Jardine are no longer able to provide it for him.Amber Bracken

Retirement planning is challenging for many Canadians, but it's much more complicated for couples like David Jardine and Deborah Barrett, who have a child with a developmental disability.

Their son Anthony, 27, has autism and can't live alone. That means Mr. Jardine, 60, and Ms. Barrett, 63, need to set aside money for their own retirement, but also enough for Anthony to live comfortably for decades after they're gone.

"It's an entirely different kind of retirement planning," says Mr. Jardine, who met Ms. Barrett when Anthony was 9. "You have both your own retirement to plan for and a whole lifetime for a young man."

There are government programs to help, such as the registered disability savings plan (RDSP) and provincial support that varies across the country. While these programs are beneficial, parents say they're not enough to cover long-term costs such as housing and care.

"It's that part that keeps families up at night," says Mr. Jardine.

A University of Calgary report released last year shows the cost of support for people living with autism can be as much as $158,350 a year if they require 24-hour care, or about $30,700 for someone who has higher levels of function and needs fewer services. While the study is specific to autism, it's considered applicable to families with children that have varying types of long-term disabilities. The authors say the costs are underestimated by society and government, and called on policy makers to provide more support.

Even though he earns a good living as a partner in the Edmonton-based law firm Shores Jardine, Mr. Jardine says the costs for Anthony's long-term care will likely mean he'll work longer than many of his peers. Ms. Barrett works full-time, unpaid, running a delivery service that hires people with intellectual disabilities called Anthony At Your Service, named after their son.

"Freedom 55, or 65 maybe in our case, doesn't work the same way when you have that kind of responsibility," Mr. Jardine says.

Parents who have children with disabilities often depend on siblings or other family members to look after their child after they die. They also need to factor other children without disabilities into their estate planning.

For Mr. Jardine and Ms. Barrett, that includes their 33-year-old daughter Jessica Barrett.

"A significant concern in our estate planning was how to provide for Anthony's long-term future while also being fair to Jessica," says Mr. Jardine.

The couple is also looking at using a professional trustee and some legal assistance for Jessica, who will be involved in administering their estates and the funds left in trust for Anthony.

Trusts are a good option as part of the estate-planning process and can be set up in different ways to minimize taxes for the child beneficiary, says Phil Renaud, a partner at Edmonton-based Duncan Craig LLP and leader of its estate-planning group.

"One of the keys is that the disabled child has to be financially dependent," Mr. Renaud says, recommending parents keep good records that can be referred to as needed.

RDSPs are the "single best tool" for clients who have children with disabilities, Mr. Renaud says. Contributions can be up to a lifetime limit of $200,000 a beneficiary, and anyone can add money to the plan. The contributions aren't eligible for a tax deduction, but the investment isn't taxed until the funds are withdrawn. An RDSP is also eligible for the Canada Disability Savings Grant (CDSG), which includes up to $3,500 in matching grants in one year, and up to $70,000 over the beneficiary's lifetime. There is also eligibility for a Canada Disability Savings Bond (CDSB) that pays up to $1,000 a year.

For estate planning, Mr. Renaud also urges parents to make it clear who will make decisions for their disabled child when they pass away. In most cases it will be the capable children, or close relatives, but Mr. Renaud says it needs to be made clear in the estate plan.

"It's also important to have those discussions ahead of time," he says.

It's a conversation that has been taking place for years among members of the McKee family in Yellowknife. Denise McKee, 53, and her husband Neil, 50, have four kids – two sets of teenaged twins, one of whom, 17-year-old Conlan, has autism and can't live independently.

Ms. McKee says the three other children, ages 17 and 18, have already started talking about how they will care for their brother when he's older and their parents aren't around.

"It's not just the parents it affects, it's the siblings as well," says Ms. McKee. "As a parent you don't want them to carry that burden, but they can't help but be impacted."

In her job as executive director for disabilities in the NWT Disabilities Council, Ms. McKee comes across many families who struggle with estate-planning considerations for themselves and their disabled kids.

"It's very stressful," Ms. McKee says. "There is that never-ending fear, from the time that you get the diagnosis, of: What if something happens to me? It then becomes like a freight train as you start to get older and think more about what will happen after you're gone and who will care for your child."

For Ms. McKee and her husband, it means a different type of retirement dream than many of their friends, focused largely on the long-term well-being of their son.

"It's not a gloom and doom setting," says Ms. McKee. "However, it's something you think about a lot sooner than other parents and is a significant factor in every decision and every purchase that you make."

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