By Chris Doucette, Toronto Sun
First posted: Sunday, August 14, 2011 7:01:10 EDT PM
If my severely disabled uncle was an immigrant, he’d already be sitting in a shiny new wheelchair.
Instead, he sits in limbo — slumped over in obvious discomfort in a rickety old chair on a seat that should have been replaced years ago — wondering how
he’s going to come up with the thousands of dollars he’s expected to pay for a replacement.
All because he’s a senior citizen — and no longer eligible for full funding.
When my 73-year-old uncle, Donald Smith, first shared his story with me, I was shocked.
The thought of our provincial and federal governments abandoning such a vulnerable segment of our society at a time when they are most in need of help is outrageous.
I vowed to expose the absurdity of my uncle’s situation in the hopes of helping him and any others who must be falling through the cracks.
It’s bad enough that a man who can’t walk or talk is expected to beg for help — paying 25% of the cost of a device that allows him some normalcy in his
life, something that was 100% covered prior to his 65th birthday.
Newcomers to the country, however, continue to receive full funding for mobility devices even after they become seniors, receiving better treatment than
“It’s not fair,” Don says, using his Dynavox, a device that speaks for him as he types on a touch-screen.
Born paralyzed from the chest down and with severe cerebral palsy, Don has limited use of one hand while the other must be strapped to his chair so it doesn’t flop around uncontrollably.
Sadly, the paralysis that prevents him from walking doesn’t stop him from feeling widespread pain, which worsens with age as his body becomes more twisted and crippled.
The bit of comfort Don once enjoyed courtesy of the customized seating on his wheelchair disappeared long ago as the padding became compressed beneath his weight from sitting on it for upwards of 15 hours a day.
Yet despite all the challenges he faces, my uncle rarely complains.
However, when I ask about his pain, he bursts into tears.
Having grown up around my uncle, I’m able to understand him even though he can’t talk.
With his one useful hand, gesturing and drawing letters on his lap, Don explained he’s in pain “all the time.”
He grew up in a small town in Prince Edward Island with his mother caring for him until she was about 80. When she died 25 years ago, he moved to Toronto to live with his sister and her husband, my parents.
The big city was scary for him at first, but it opened up a world of possibilities.
Until about eight years ago, he collected a menial income from the Ontario Disability Support Program, enabling him to provide for himself in his small
basement apartment at his sister’s house.
And while on ODSP, Don received full funding for new wheelchairs through the province’s Assistive Devices Program (ADP).
But at 65, he was switched over to Old Age Security — administered by the federal government.
The money was about the same, a little over $1,000 a month. He also now receives a Guaranteed Income Supplement, which amounts to an extra $83 monthly.
But he soon found out vision care and dental work, among other things, were no longer covered.
More importantly, as a senior citizen ADP only pays 75% of the cost of new wheelchairs, something he now desperately needs.
Those in need are entitled to a new wheelchair every five years and new seating every couple of years. Don has had his chair for nearly a decade and the seating hasn’t been replaced for five years.
His brother-in-law says “it’s like driving a car that’s on its last legs and is no longer reliable.
“He’s afraid to leave home by himself in case it breaks down and he gets stuck somewhere,” Gerry Doucette says as Don nods in agreement.
Gerry recalls the provincial government warning Don ahead of his 65th birthday that he would be moved onto the federally-run program. But he says Don was never told his coverage would change.
He only found out when his chair had to be fixed and he was slapped with an $800 bill, which beforehand would have been sent directly to the province.
Don now keeps a credit card on hand to pay for unexpected costs.
“That’s his emergency fund,” says his sister, Bonnie Doucette.
Don recently had to put more than $2,000 on that card for new dentures, she says, adding it’ll take him a couple of years to pay off and will cost him far
more in the end because of interest.
Bonnie says she and her husband do all they can to care for Don, but they are retired and on fixed incomes. There’s only so much they can do.
“If we had the money, we’d pay for a new chair in a heartbeat,” she says.
A source within the mobility devices industry tells me the wheelchair Don requires, which has custom seating and a tilt feature that allows him to lean
back to relieve stress on his body and reduce pressure sores, can cost up to $30,000.
My uncle’s portion would be about $6,000, or nearly half his annual income.
On its web site, ADP suggests people in need turn to charitable organizations for help, which Don is now doing.
But he says it’s a demeaning process that leaves him feeling like “a beggar.”
I’m told it could be a year or longer, if he’s able to get funding, before he’s sitting in a new chair.
Had he moved to Ontario from another country instead of another province, a new chair wouldn’t cost him a dime.
Non-Canadian citizens don’t qualify for OAS, so those who are disabled and on ODSP can remain on that program after 65 and continue to receive 100% funding from ADP for wheelchairs.
Quite unexpectedly, numerous generous Sun readers have expressed interest in helping Don pay for his new wheelchair. His caregivers have now set up a trust fund in his name.
Donations can be made at any Royal Bank, Branch 003, Transit No. 05762, Account No. 5010095, in trust for Donald Smith.