Many of us in the disability community were pleasantly surprised when the Liberal party promised to create a National Disabilities Act that would safeguard disability rights, reduce systemic barriers and establish a foundation of opportunity for those affected by disability. Canada is an outlier among developed nations for not having one -- the U.S. has had theirs for 25 years -- so it could not arrive soon enough.
But the federal Conservative government did make some positive contributions of their own for the disability community during their decade in power -- most notably, the Registered Disability Savings Plan (RDSP).
The RDSP was the brainchild of non-profit organization, PLAN and was championed by the late Finance Minister, Jim Flaherty, who made it a reality in the 2007 budget. Flaherty had first-hand experience with disability; one of his sons contracted encephalitis as an infant with lasting health consequences.
The RDSP is Flaherty's legacy to Canadians with disability and it remains an important and valuable program -- at least in theory.
According to a 2014 study, only about 15 per cent of eligible Canadians take part in the program, meaning almost half a million eligible Canadians are losing out. With a wave of teens with autism reaching adulthood in the coming years, helping families affected by disability help themselves has never been more important.
So what is it and what needs to be done to make it work better for Canadians?
The RDSP is a savings plan that helps parents and caretakers of those with a disability save for their loved one's long-term financial future with some financial contributions coming directly from the government -- free money, in other words.
There are two components to the RDSP in addition to personal contributions: a federal grant and a federal bond. The grant is based on family income and how much a family contributes privately to the RDSP. It can equal as much as $3,500 in contributions from the government each year. The bond is based solely on family income (those making less than $43,953) and can be as much as $1,000 in contributions from the government per year.
Over the lifetime of an RDSP, an individual can receive as much as $70,000 from the federal grant, and if eligible, as much as $20,000 from the federal bond.
So why are so few using the RDSP?
In 2014, a cross-party Senate Committee undertook a study to answer this very question. It's time our new federal government dusted off the report and put some of the recommendations into action.
Here are three quick ways the federal government can improve the RDSP and help families affected by disability now:
1. Establish an RDSP automatically once an individual is eligible for Revenue Canada's Disability Tax Credit.
When I initiated my son's RDSP, I was required to provide his Disability Tax Credit status, a Social Insurance Number, proof of age and residency in Canada. It's a lot of intimidating bureaucratic paperwork that could put off families who may have time, language or educational barriers.
2. In the meantime, raise the awareness and understanding of the RDSP program.
I regularly encounter families in the disability community who have never heard of the RDSP program or don't know how to initiate it. Others have told me they don't have the money to start one -- unaware they'd be eligible for free government bonds just for opening the account without requiring a penny of savings from them.
The Senate report recommends the federal government should partner directly with advocacy groups to help spread the word. This makes good sense since it's often the front-line non-profit groups who are directly engaged with disability families and know best how to reach them and could help them with administrative hurdles.
Another promising model is to have health practitioners work directly with their patients. Recently, a coalition of healthcare providers, researchers and community agencies based in Ontario and Manitoba have created a Get Your Benefits! Toolkit to help healthcare workers improve the wealth -- and thus the health -- of their patients by helping them access income and other supports they may be entitled to.
3. Allow other family members and friends to contribute easily to an existing RDSP
This recommendation isn't in the Senate report, but it's one that comes from my own experience and from others I know in the disability community. If you have a disabled child, 'extra money' is not always easy to tuck away. But birthdays and other special events are an opportunity for loved ones of the child to contribute meaningfully to their future.
Financial institutions should work with the federal government to find an easier way for those who are not plan holders to contribute to an individual RDSP in small or significant amounts (in theory it is permitted now, but in practice, it is almost impossible in some plans). It takes a community to raise a child after all.
The RDSP really is an excellent program and needed as much today as when it was created. The federal government just needs to give it wings to make it fly.
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Say “hi,” introduce yourself, ask questions... just be yourself. And don’t be horrified if your child asks why our child looks different or "talks funny." Instead of shushing them and pulling them away use it as a teachable moment. You can even ask us to help. “You can tell if someone has good intentions,” shares Louise Kinross, the mother of a young adult with a rare genetic condition and creator of the BLOOM blog.
Parents of children with special needs appreciate the help or will tell you if they don’t need it (please don’t automatically step in and start wheeling our kids around, though). And if you’re the friend of someone who has a child with special needs offer a cooked meal, a coffee date or an hour of babysitting. Our stress levels are sky-high and we always appreciate an offer or real, specific help.
Staring is rude, but if you feel compelled to stare at least offer up a smile. But don’t worry if you just happen to be staring in my kid’s direction while in a sleep-deprived, zombie-like state -– we’ve been there and we won’t hold it against you.
“A friendly smile and/or a hello is so much more welcome and goes a long way in breaking the ice,” says Liza Sneyd, mom to two children with cerebral palsy. And teaching your child to smile is a lot easier if you’re flashing us a grin yourself.
Invite us to playdates and to birthday parties. If you’re not sure how to accommodate our child or how they can participate in activates, just ask us. We’re usually experts in modifying or figuring out creative ways for our kids to enjoy the things that other kids like.
“Hold the door for my daughter instead of letting it slam shut on her and her wheelchair,” says Lana Jones, who has a teenage daughter with cerebral palsy. “Don’t step in front of my son’s wheelchair so he can’t see,” shares Barb DeRoo, mom of a son with cerebral palsy and creator of Zach’s List.
Despite the fact that I get asked to write articles like this, I am not a perfect parent. My kid can get on my very. Last. Nerve. She can also warm my heart like no other -– just like any kid. When you say: “I don’t know how you do it,” my answer will always be: “It’s simple. I do it because this is my child and I love her. It is all I know.”
More often than not parents of kids with special needs have a strong belief in the strength and resilience of their kids. Our kids face insurmountable odds, often with a smile on their face and a lot of strength in their hearts. They are super heroes, not victims. And while you’re at it remember that our lives may have some extra challenges, but we still face the same difficulties you do. Treat us like parents -– it is what we have in common.
Don’t use the word retard (replace it with ridiculous instead). Don’t ask: What’s “wrong” with a child? Initiate age-appropriate conversations and don’t automatically use baby talk. Use "people-first" language that puts the person before the disability (e.g a child with autism, not an autistic child). It’s not about being politically correct, it’s about the fact that words matter. After all you are reading this, right?
Kindness isn’t sympathy or pity –- it is being a good person. Teach your children the same. It really is that simple.
Follow Kathleen O’Grady on Twitter: www.twitter.com/kathleenogrady