Independent Living For Disabled Young Adults - Sometimes the most exciting place Victoria Levack can go is her bedroom. The decorations testify to the interests and aspirations of the 30-year-old man. A constellation of photos of her with celebrities at Hal-Con, Halifax's annual comic convention, fills one section. Figurines of Disney superheroes and princesses surround the room. beautiful oh
And Wonder Woman are her favorites: strong, intelligent women who are willing to protect others. Both also reflect parts of Levack's personality. She spends much of her time advocating that adults with disabilities, like herself, have equal access to opportunities, whether it's sex education or, most importantly, housing.
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For the past decade, Levack has lived, reluctantly, at the Arborstone Better Care facility in Halifax. I don't dream of living in a castle; she wants a bachelorette apartment where she can cook her own meals and choose leisure activities beyond bingo games with senior citizens.
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Spending her 20s in a long-term care facility was never Levack's plan. She first moved to Halifax for university, seeking social and professional opportunities that were not available to her in her small town of Berwick, N.S. But she fell ill after failing to receive proper care while living in university accommodation. Levack has spastic quadriplegic cerebral palsy. Needs help with dressing and personal hygiene. He drives his electric wheelchair with his right index finger and uses his left hand for everything else.
Levack returned to his parents' home in Berwick, but he didn't find adequate care there either. As an adult, he was unable to access the support he received during primary and secondary education. I had some home care, but the workers didn't always come when scheduled. Caregiving duties fell to her stepmother, who Levack says was often afraid to leave the house for fear her daughter would be unsupported. "The uncertainty of not knowing if I was going to get help that day was terrifying," Levack recalls.
One option he looked at was a provincial housing program for adults with disabilities. Three or four people share the house and support staff also come in shifts or live in the building as well. Levack says she was told she didn't qualify because her needs were too high. Instead, he moved to Arborstone. "I wasn't allowed to choose," he said.
It's isolating. Before the pandemic, Levack limited her time at the facility to meal times and bedtime, spending her days meeting with friends, volunteering with organizations for people with disabled, people-watching in cafes or going to the cinema. The only leisure activities at the residence that she really enjoyed were the monthly dances. However, even in those, she would not invite friends who live elsewhere. "I'm ashamed of where I live", he admits.
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COVID-19 put an end to social events and confined her to her own apartment. "We were the last group to get our freedom," he said in early July, a day after spending time with his parents at the water's edge, his first outing since the restrictions
The pandemic has had a significant impact on Canada's long-term care facilities. Between March 1, 2020 and February 15, 2021, more than 14,000 residents of long-term care facilities or retirement homes died from the outbreak, accounting for more than two-thirds of all deaths from COVID-19 in Canada, according to the Canadian. Health Information Institute.
The crisis has prompted a series of reports detailing long-standing deficiencies in staffing, staff training and physical infrastructure, including adequate ventilation. But there is less discussion about the effects on people with disabilities living in these facilities. "Whenever we talk about long-term care, we talk about our seniors and seniors because that's the standard population," Levack said. "They forget that we young adults exist in this system too."
Levack is one of 87 Nova Scotians between the ages of 30 and 49 living in long-term care facilities. Another 21 are under 30, according to May 2021 data from the province's health and welfare department. Across the country, thousands of people well below old age are housed in institutions such as nursing homes. In Ontario, for example, more than 4,700 long-term care residents, or 12%, were under the age of 65 in April 2021.
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Like Levack, not everyone wants to be there. Some hope the clamor for long-term care facilities will increase enthusiasm for government funding programs that make living at home a viable option. With direct individual funding, people with disabilities receive money to hire, train and schedule care staff, such as nurses or personal support workers. This money is separate from provincial or territorial disability support that is intended to pay for room and board expenses, such as food. But while advocates say personal finance can improve people's lives, and in some cases even save them, it's not without complications. Programs can be difficult to access, and funding is often uncertain. And money is only part of the answer. The most effective programs also incorporate support systems to help people manage their care and connect with their community.
Throughout the pandemic, Levack has been exploring how she can move out of her residence and get the support she needs to live independently. COVID-19 has tested their resolve. "I have a lot more anger now," he said. "I have much less faith in people. If there's one thing this pandemic has taught me, it's that people don't see people with disabilities as full citizens."
“If I told you: 'You are 25 years old; we're going to send you to a nursing home to live,' you would have been outraged," said Tim Stainton, co-director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia. "Why should it mark what difference does the fact that the 25-year-old man has a disability make? Why shouldn't we be upset about that?"
Claire McNeil, a lawyer at the Dalhousie Legal Aid Service in Halifax, says living in long-term care hinders young adults' ability to participate meaningfully in their communities. In his view, it's a "classic" example of systemic discrimination, and a landmark new ruling from Nova Scotia's top court supports that argument.
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In October, the Nova Scotia Court of Appeal found that systemic discrimination had occurred in a case involving three disabled people who were housed in a psychiatric hospital for years instead of being supported by live in the community. "There is sufficient evidence ... to support a finding that the way the province provides social assistance to people with disabilities ... creates a disadvantage that is unique to them," the ruling said. The decision reverses a 2019 decision by the Nova Scotia Human Rights Commission, which had rejected the broader claim of systemic discrimination despite finding that the government had harmed the three people by institutionalizing them.
“If I told you: 'You are 25 years old; we're going to send you to a nursing home to live,' he would be outraged.” Tim Stainton, co-director of the Canadian Institute for Inclusion and Citizenship
McNeil successfully represented the Disability Rights Coalition of Nova Scotia in the original case and on appeal. He claims that the October ruling is a "significant development" in the fight for equality. "This decision is the first of its kind in Canada to find that a large group of people with disabilities have been systematically discriminated against by their government for decades," he said. "It will affect hundreds of people who live in institutions or are relegated to waiting lists or are denied meaningful access to the basic social supports they need to live in the community."
Canada has ratified the United Nations Convention on the Rights of Persons with Disabilities, which states that people with disabilities have the right to "live in the community with options equal to others." This includes having access to a range of residential and community support and being able to choose where and with whom you live.
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The convention provides a useful framework for discussing human rights, McNeil said. But there is no Canadian statute that directly enforces it in the country, leaving compliance to a patchwork of different laws and courts. She hopes the new ruling will set an important example in Nova Scotia and beyond.
Individual finance is not a new idea: it arose out of a move away from institutions in the second half of the 20th century. However, unlike traditional models of home care, where government funding flows to agencies that then deliver services to clients, individual funding gives money directly to people to buy the support they want and need. Today, all 10 states offer some form of direct funding, but the programs are often limited and serve only a small percentage of home care clients. Advocates would like much wider adoption, arguing that anyone with a disability should have the option of direct funding.
For programs to be successful, individual needs must determine funding; It's not enough to give the same amount to everyone with a disability, explained Tim Stainton, an advocate for inclusion. Recipients also need training on the logistics of managing payroll and schedules, and money to cover administrative costs, he said. Funding recipients sometimes pay an agency to handle all the administrative tasks.
Stainton says that providing individual funding costs governments about the same, or less, than institutional care. "It's relatively cost neutral," he said. "But in terms of benefits, it's much better." Systematic review him
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