Accessible van could do ‘amazing things’
Sister launches campaign for Port Colborne man living with disability
If Carl Bernard wishes to visit his family in Brantford, he’s looking at a $300 hit to his wallet.
And so the Port Colborne resident, who lives on limited income in an accessible apartment on King Street, doesn’t get to see them much and has missed more than a few special occasions.
Bernard, who is living with Type 2 spinal muscular atrophy, is confined to a motorized wheelchair.
Up until a few years ago, the 31-yearold was living in Brantford, close to his family and doctors who are familiar with his condition, a rare hereditary disease that affects nerve cells that control voluntary muscles.
He was living in a long-term care home for seniors. Working with a social worker, Bernard applied for an accessible independent apartment throughout the Brantford and Hamilton areas, and as far as Kitchener-Waterloo and Niagara.
The Gateway Residential and Community Services building on King Street was the first to come available, and Bernard moved quickly on the opportunity when it came. Through the supports made available to people with disabilities, he is able to live a relatively independent life.
Bernard is registered for the direct funding self-managed attendant care
program through Niagara Centre for Independent Living (NCIL). The provincially funded program sets Bernard up as the employer for his own care staff, allowing him to set the schedule.
And because his first-floor apartment has automated doors, including into his individual unit, Bernard can come and go as he pleases.
He just can’t go very far.
There are accessible buses in town. Port Colborne’s bus routes run by Welland Transit have ramps and low floors but do not have someone on hand to secure his wheelchair, which, though it has locks, has a tendency to slide.
“If I have to use it, I’ll use it,” he said. “But it’s a huge inconvenience.”
But buses in town can’t take him to Brantford — even getting across the region is an ordeal — and besides missing out on family events, Bernard has had to forgo some of his specialist appointments, as a taxi is a $150 trip each way — funds that even when reimbursed represent a weekslong out-of-pocket expense.
“It basically eats my whole budget for the month,” he said.
Bernard’s situation is far from unique. Maureen O’Neill, executive director with NCIL, where Bernard is also a volunteer board member, said people with disabilities, much like those on low income, have to do without things most people take for granted, like getting from point A to B.
“You can’t just pick up and go,” she said. “It’s a major investment.”
In an effort to help, Bernard’s sister, Jacklyn Bergie, has launched a GoFundMe campaign to raise $50,000 for an accessible van. The vehicle, which would be driven by his attendants, would allow him to stay better connected with family, Bergie said.
She said her brother hardly ever asks for help, as he’s proud of his independence.
“He does everything on his own until he hits a wall,” she said, noting she set the campaign up without his knowledge on Nov. 6, and raised about $1,000 within 24 hours.
Bergie lives in Alberta, as do their parents, and she said there’s little she can do from out there.
“It is really hard to get the word out,” she said.
Bernard said he was floored when he found out about the campaign, and will be happy for any support he gets, no matter how long it takes. Such freedom of movement, he said, would make life much easier. It would also allow him to fulfil a dream of taking a road trip to visit his mother.
“I’m going to do some amazing things in my life,” he said.
For information about the campaign, visit https://bit.ly/2RVHZCz.