Hey there, time traveller! This article was published 7/12/2016 (1315 days ago), so information in it may no longer be current.
Reaching adulthood can be an exciting time of independence — unless you have a major physical disability. In that case, it can be a life sentence of isolation and spell the end to your education and personal growth as doors close and services are cut.
Tyson Sylvester and Amy Hampton are trying to change that by filing a complaint with the Manitoba Human Rights Commission. Both in their 20s, they say they’re being discriminated against on the basis of disability and age. Since turning 18, the high school graduates are ineligible for services and programs that helped them learn, thrive and gain some independence in school.
"You feel so isolated and depressed," said Sylvester, 21. He has cerebral palsy, is visually impaired and is collecting welfare instead of pursuing his ambition. "I want to go to Red River College and take computer science so I can develop software for the blind and visually impaired."
The outgoing and tech-savvy Transcona Collegiate graduate wants to network and provide tech support, but for now all he can do is sit in front of the computer in his apartment at an assisted-living facility. Unless his mom takes time off work and drives him, he’s not going anywhere. 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.
"The staff are not allowed to take me out," Sylvester said. "If something happens, the onus is on them."
Right now, his future is bleak.
"Basically, I want to live somewhere where I can get out and do stuff," Sylvester said.
He has to rely on his single-parent mom, a full-time youth-care worker, to take time off work to take him to a doctor’s appointment. University is out of the question.
Tyson’s mom, Claresa Sylvester, said she worries about her son’s future. "I want to make sure he’s taken care of," she said. She said it hurts to see her child unhappy and unable to reach his potential.
"He’s usually so depressed it’s hard to visit with him."
She’s said she’s proud he’s advocating for himself and other "gappers" who are falling through systemic cracks in policy and law.
"I taught him to be who he is and to stand up for himself," she said.
When Amy Hampton was growing up with cerebral palsy, spastic quadriplegia, then scoliosis at age 16, her mom remembers the advice they received about obtaining support services for their daughter.
"Get whatever you can now because there’s nothing when she’s over 18," recalled Charlene Hampton.
Those under 18 with lifelong physical disabilities qualify for comprehensive assistance. Amy received one-on-one support, occupational therapy, physiotherapy, speech therapy, orthotics, care at a spasticity clinic, medical supplies and equipment. The Children’s disAbility Services Program let Amy live as independently as possible. That ended when she turned 18.
"There was supposed to be a transition process that happens," Charlene said. "It wasn’t smooth for us at all. We got a call from a school psychologist when Amy was 15 or 16. He wanted to meet with us to plan for the IQ test," said Charlene.
Under the Vulnerable Persons Living With a Mental Disability Act, someone with a low-enough IQ is eligible for an array of comprehensive services as an adult, such as one-on-one support.
"I’ve heard about kids who felt like they had to fail the test so they’d get more funding," said Charlene.
The psychologist, who’d never met Amy or her family, was unable to say how he’d administer the IQ test for the young woman, who is non-verbal and communicates through facial gestures, signs and sounds. Amy’s IQ wasn’t tested, Charlene said.
"We didn’t want her labelled as something maybe she’s not."
They know the 24-year-old loves abstract art, standup comedy and animals. Picasso, visiting Rumor’s Comedy Club and their cat, Sheba, are among Amy’s favourites. She attended a couple of university classes two years ago with her mom acting as her support.
"I don’t think it was a great experience for Amy, sitting there with her mom," said Charlene. "It’s not the same as if she was there with someone her own age."
Amy lives in West St. Paul with her parents, who are in their 50s.
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"Right now my concern is once my husband and I are no longer here or are too old to care for her, that she has a good place to live," said Charlene. "Right now, the only option would be a personal care home. She’s 24. She shouldn’t be with 80-year-olds all the time."
Parents such as Hampton and Sylvester aren’t alone, said David Kron of the Cerebral Palsy Association of Manitoba.
"The system kicks in when it’s a crisis, not when it’s manageable," said Kron. He knows young adults who are living in care homes with the elderly because it’s the only safe choice available. Parents struggle to get care for their kids and worry about what will happen to them when they’re gone, he said. That’s why their human rights complaint is such a big deal. The way the system is set up, physically disabled children and those with intellectual disabilities are eligible for supports people such as Amy and Tyson can’t get, and it’s holding them back.
"A mind is a terrible thing to waste," said Kron.
"You have people like Tyson and Amy with limitless potential crying out for services and more social inclusion," said their lawyer, Joëlle Pastora Sala with the Public Interest Law Centre. Their complaint is being investigated by the Manitoba Human Rights Commission, she said.
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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.