Hey there, time traveller! This article was published 23/3/2017 (1444 days ago), so information in it may no longer be current.
Young Manitobans with physical disabilities are finding strength in numbers as they unite to fight for services and programs taken away from them when they hit adulthood.
"We are all united," said Tyson Sylvester, 21, who spoke up at a meeting this week in Winnipeg with 60 other "gappers" as they refer to themselves. Tuesday's meeting was organized by the the Cerebral Palsy Association of Manitoba and was the first time they gathered to talk about their common gaps in service and what action to take.
"It was an electric feeling — a symbol of hope," said Sylvester, who filed a Manitoba Human Rights Commission complaint this winter with fellow gapper, Amy Hampton, 24. He has cerebral palsy and is visually impaired. She is dealing with cerebral palsy, spastic quadriplegia, and scoliosis. They both say they’re being discriminated against on the basis of disability and age.
Those under 18 with lifelong physical disabilities qualify for comprehensive assistance. Hampton, for instance, received one-on-one support, occupational therapy, physiotherapy, speech therapy, orthotics, care at a spasticity clinic, medical supplies and equipment. That ended when she turned 18. When Hampton and Sylvester reached adulthood, they became ineligible for services and programs that helped them learn, thrive and gain some independence.
The tech-savvy Sylvester dreams of studying computer science and developing software for the visually impaired but is trapped collecting welfare and sitting in front of his computer at an assisted living facility. He’s eligible for just 50 hours a week of home care, but that is barely enough help for him getting dressed, going to bed, eating and going to the bathroom. There is no support for him to continue his education or have any kind of social life.
"A lot of people have the same problems," said his mother, Claresa Sylvester, who attended this week's meeting. Until now, though, they haven't connected with one another, said David Kron, executive director of the Cerebral Palsy Association that organized the meeting. They're just starting to find out how many young adults there are like Sylvester and Hampton in the Winnipeg area, said and Kron. "There are no stats so we don't know how many people this affects."
The human rights complaint process doesn't move quickly, said Tyson's mom, Claresa. "It's going to take another 10 months to even look at it," she said. The Manitoba Human Rights Commission says it's dealing with a larger than average volume of complaints right now and doing the best it can with the resources it has. Acting executive director and counsel Isha Khan said she can't discuss specific cases but, generally speaking, it takes 10 months for an investigator to contact witnesses and arrange interviews after they've reviewed documents and conducted legal research.
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The situation for many young adults is urgent and they can't wait 10 months, said Joëlle Pastora Sala the Public Interest Law Centre lawyer representing Sylvester and Hampton. She said they're considering a day of action, a letter to Premier Brian Pallister and urging gappers, their families and supporters to write to their MLAs.
The longer it takes for the young adults to access services, the worse things get for them, said Tyson's mom Claresa Sylvester.
"Every time I see him, he's a little more hunched over," she said. Depression and a lack of physiotherapy are taking a toll on her son when he could be thriving if given the chance and support, she said.
Seeing other young adults and their families rally together this week is empowering, Tyson said.
"When you're in a fight like ours, sometimes you feel hopeless. A vision like that gives you hope and the will to fight."
Carol Sanders Legislature reporter
After 20 years of reporting on the growing diversity of people calling Manitoba home, Carol moved to the legislature bureau in early 2020.
It says Manitoba Health, Seniors and Active Living, Manitoba Families and the Winnipeg Regional Health Authority have failed to provide adequate services for Tyson Sylvester and Amy Hampton as well as other adults with significant physical disabilities, contrary to the Manitoba Human Rights Code. The complaint says it’s discrimination based on age because those with lifelong physical disabilities under age 18 qualify for comprehensive assistance, while adults with the same disability don’t.
The WRHA has dismissed it as "frivolous or vexatious."