Canadian patients search for dignity, freedom in self-directed care
Published Tuesday, September 4, 2018 10:00PM EDT
When 26-year-old Zachary Priest was receiving home care through government-funded agencies in Mississauga, Ont., he never knew what type of care he was going to get on any given day.
Priest is disabled and needs assistance with many tasks, from washing dishes to getting dressed. But there were some days when he would go without a proper shower or without a shave because a worker either refused or simply did a poor job.
“There was no respect. I was very much like a number and a commodity,” he told CTV News. “When that person who is supposed to be there to help you become more independent and help you reclaim your life, is making that difficult and being the sole barrier in your way, it’s very defeating.”
But now Priest is in the final process of receiving Direct Funding, a government-funded program available in five provinces in which money for care goes right to the person in need so they can hire their own support. Otherwise known as “self-directed care,” the service is not managed by professionals and agencies on behalf of a client – instead, the client runs their own kind of “business.”
“You’re essentially becoming the agency and the sole client is yourself,” said Priest, who is currently readying his own “roster” of self-selected support workers. He has three people in mind for the job already and hopes to have up to eight people on his payroll.
Demand for the program is strong and many people have been waiting for years to receive the funding, including Roger Foley, a chronically ill man who filed a lawsuit earlier this year claiming that a government-selected home care provider has left him with injuries and food poisoning. None of the claims in his lawsuit have been tested in court. Foley has been waiting for Direct Funding for two years and has been in hospital for nearly 950 days.
“With the remaining time I have left, I want to live with dignity and live as independently as possible,” he said in a statement to CTV News last month.
For 60-year-old Jacques LeBlanc, who has a disability called Kugelberg Welander spinal muscular atrophy, self-directed care allowed him live his life with dignity and greater independence
“It gave me freedom and made me feel complete as a human being,” he said. “I was able to set my own schedule -- when I wanted to go to bed, when I wanted to get up in the morning.”
He now has support workers who he hand-selected and put on a three-month probationary periods to ensure compatibility. He can set his own schedule and change it as needed.
Many who aren’t able to self-select their care are at the mercy of the agency’s schedule. As a teenager, Priest preferred to receive his bedtime care around 11:00 p.m. at night, but was told the latest the agency could offer was 9:00 p.m., a time which was often pushed earlier depending on the personal support worker. Now as he prepares to receive Direct Funding, Priest looks forward to possibly planning vacations, something he wouldn’t have thought possible before. With Direct Funding, the horizons have opened up for others like him, he said.
“I really hope that people with disabilities can think a little bit more about what’s possible with their lives,” he said. “Maybe I could travel, maybe I could live in a regular old apartment on my own or have a job even. With (programs like Direct Funding) those possibilities are there.”
Though it’s a relatively new program in Canada -- and one that varies across the country -- implementation of self-directed care is old news in other parts of the world. It has been in place in the U.K. for more than 20 years and Australia recently launched a national system through which more than 400,000 people are expected to receive funding.
“It’s really become the norm of service (overseas), whereas here it still seems to be an exception,” said Tim Stainton, a social work professor at the University of British Columbia.
Studies have shown that programs like Direct Funding are cheaper, of high quality and provide greater patient satisfaction.
“It allows people to live the life they want to live the way they want to live it, where they want to live it, and who they want to live it with, which is something most of us take for granted,” said Stainton. “If you require support to do that, those choices tend to be very circumscribed by the systems we have in place.”
With a report from CTV’s medical affairs specialist Avis Favaro and producer Elizabeth St. Philip