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McGill's Antonia Maioni
McGill's Antonia Maioni

Antonia Maioni

Raising a disabled child takes a village (and an RDSP) Add to ...

The adage about a village raising a child couldn’t be more apt for our family. Our urban neighbours are constantly on the lookout for our autistic and non-verbal 13-year-old son. The bagel shop knows him by name and he’s a familiar face at local parks, restaurants and sports venues.

Because of his access to Quebec’s universal child care, our son’s developmental delays were noted long before they might otherwise have been. The public primary school across the street spent years integrating him into regular classes, even though it didn’t have to, and the province helps through support to the special-needs school he now attends full-time.

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But, at the end of the day, it’s the parents of disabled children who are faced with the relentless burden of responsibility and the spectre of a never-empty nest. We have locks on all our doors and windows, but there’s no wall high enough that can protect such children from an uncertain future.

And while most people are worrying whether they can maintain their lifestyle in retirement, parents of the disabled are more apt to wonder whether we’ll have the strength or the means to care for our adult dependents – not to mention what happens when we’re no longer around.

That’s why the federal government’s Registered Disability Savings Plan introduced by Finance Minister Jim Flaherty has the potential to change so many lives, both practically and symbolically. In practical terms, the RDSP allows parents of special needs children to save for that day when they’ll no longer be able to care for their disabled offspring. We felt foolish setting up a Registered Education Savings Plan for our son while knowing he would never go to college; transforming it into a disability savings plan brought back some hope that we could put that money to good use for his future.

Symbolically, the RDSP is equally important. For the first time, the federal government has recognized the burden of disability on parents and families, and is providing a direct contribution to help assuage some of their concerns.

But, obviously, there’s much to be done. Canada, which touts itself as one of the best places to live on Earth, has a less than stellar performance when it comes to providing for children in need, be they disabled, poor or otherwise disadvantaged. The Conference Board of Canada has pointed out that Canada may do well in the employment integration of the disabled, but for children such as ours, who are likely to never live an autonomous life, let alone work, disability-related public spending measures are dismal. The OECD places Canada in the same subgroup as the United States in terms of its overall disability policy model, way below its European peers.

It doesn’t have to be this way, economic crisis or not. If the federal government wanted to flex its muscle in helping innovate in strategies to provide a better future for disabled children and their families, and enabling provinces to do better in this regard, it could provide a beacon for change, and shed some sorely needed attention on the plight of all Canadian children in need.

In the 21st century, the village needed to raise a child has to include the combined efforts of its inhabitants and, just as important, the leadership of public authorities to act in the best interests of the community. Instead of worrying about the gender of the royal offspring of Kate and Wills, Prime Minister Stephen Harper could take a cue from his Finance Minister and become the defender of the most vulnerable constituents he serves.

Antonia Maioni is a professor of political science at McGill University.

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