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Five years after a human rights complaint argued Manitoba was discriminating against adults with physical disabilities by cutting off supports after they aged out of youth programs, the province is acknowledging people have been falling through the gaps.
As part of a settlement agreement with the two Manitobans who filed the complaint in 2016, the province is starting a pilot program to offer services to 30 adults with complex disabilities and to study barriers in the system.
Announced this week by the Manitoba Human Rights Commission, the province and Winnipeg Regional Health Authority, the program is to start within six months, with no end timeline set.
Tyson Sylvester and Amelia Hampton, who both use wheelchairs because of cerebral palsy but didn’t qualify for caregiver support after they turned 21, launched the complaint.
The Public Interest Law Centre carried it forward, documenting Manitoba based support coverage on cognitive level, so adults with intellectual disabilities continued to qualify for services that people with complex physical needs didn’t. Sylvester and Hampton will both be part of the steering committee to guide the pilot program.
The project is expected to start by assessing participants’ needs and changing the way existing programs are offered to adults. Apart from Hampton and Sylvester, the participants haven’t yet been selected.
Sylvester, 25, has been living in a personal care home for three years because he can’t get funding for the services he needs to live independently.
"I’m very happy that the government has decided to agree to what we asked for. I’m definitely seeing this as a step forward in human rights," he said.
He is blind and needs a full-time caregiver, but hopes to move out of the care home and study psychology.
"Getting a job, going to school, you know, living a normal life that a regular person would. Things are going to change for the better," he said after the pilot project was announced.
Hampton, 29, is non-verbal and lives with her parents, Charlene and Keith Hampton. They said it’s been at least 10-year fight for the family, and even longer since they first heard their daughter referred to as a "gapper" because officials knew she wouldn’t qualify for disability supports as an adult.
Charlene said she’s "cautiously hopeful" about the settlement. The family was involved in a pilot project years ago and nothing came of it, she said.
They want to see a "one-stop-shop" set up for adults with disabilities, similar to what already exists for children, so individuals and their caregivers don’t have to jump through so many hoops to get approval for provincial coverage of necessary equipment and support programs. She described the long and frustrating process just to get a new seatbelt for Amelia’s custom wheelchair.
The problem is systemic and needs to change for all Manitobans, she said. "We want to change it for everyone, because we know it's a problem for a lot of people."
The government’s announcement is an about-face from its initial position the human rights complaint had no merit and was "frivolous and vexatious," said lawyer Joëlle Pastora Sala, who represented Sylvester and Hampton.
"The recognition of the gap in services by government in itself sends a strong message to the disability community that they are seen, and that their experience has been acknowledged, which for years has been ignored."
The COVID-19 pandemic has brought to light similar gaps for Manitobans with disabilities — as Sylvester can attest, having been isolated in the personal care home and restricted from seeing his family.
Other services and programs have been suspended, and that’s a concern for the Manitoba Human Rights Commission as it carries out this pilot project, said acting executive director Karen Sharma.
"In the case of adults with complex disabilities, that's a particular area of concern. Whether it's folks that may reside in congregate living facilities, folks that rely upon certain kinds of programming for both social and other kinds of support, we've been really concerned that health measures that have been implemented or the suspension of those kinds of services and supports not have a significant negative impact on the equality rights of persons with disabilities," she said.
Katie May is a general-assignment reporter for the Free Press.