Tyler Barker spends most of his time figuring out the application process for home care.
For weeks, the 37-year-old from Aurora, Ont. has been applying for Family-Managed Home Care. The program, funded by Ontario’s Ministry of Health, allows individuals or their substitute decision makers to hire, train and schedule home-care staff to help them with daily living tasks, like personal hygiene or household chores.
Barker has spastic quadriplegic cerebral palsy and has used home care from an agency since he was 16. The quality of care has declined since his long-time personal support worker recently retired. He wants family-managed home care so he can decide who his workers will be, train them and know when they are coming. He lives with his mother, who can help him when staff aren’t available, but knows he cannot rely on her forever.
Applying is a burdensome, bureaucratic web. He needs to set up a bank account for the funding, find a bookkeeper and ensure workers have the required insurance, among other things. He worries he will not be able to get approval for the care he wants.
“I would like to see much less red tape and I would like to see us be able to hire our own people, because we know our situations best,” he said.
Barker is not the only one who wants home care to be more easily available.
A recent brief by seven disability and seniors’ organizations asks the Ontario government to focus on funding non-profit, community-based programs that allow seniors and people with disabilities to stay in their homes as an alternative to moving into long-term care facilities.
“It is time to redirect a significant portion of funds currently designated for the expansion of long-term care institutions into supporting persons with disabilities — old and young — in their own homes and communities,” the brief says.
Give people options
The brief, which was submitted to the Ontario government last week, outlines several ways to promote alternatives to long-term care.
In addition to making family-managed home care easier to access, it recommends paying family caregivers and expanding the availability of in-home palliative, hospice and hospital care. The brief also says the government should create more Programs for All Inclusive Care of the Elderly locations, where social and health support services are located in buildings where many seniors already live.
The stakes are dire, the brief says.
“What is missing in Ontario’s long-term care system at present is true choice,” it says.
“By building a modern long-term care system that incorporates a range of supported living options, the Ontario Cabinet could create a system that gives people options other than a dysfunctional home care system, an institution, or medically assisted death.”
Canadian Affairs spoke to representatives from four of the organizations who signed the brief. Several mentioned how their members often talk about how applying for medical assistance in dying (MAID) is easier than applying for home care. Others said they know people who have considered or applied for MAID because of a lack of available home-care supports.
Ontario’s Ministry of Health is responsible for home care. It did not respond to requests for comment.
Ontario’s Ministry of Long-Term Care responded to Canadian Affairs in an email, saying, “Long-term care homes in Ontario have the flexibility to implement the model of care that best meets the care needs of their residents.”
“The Ministry of Long-Term Care does not endorse or require any particular model of care,” it said.
The Ministry of Long-Term Care also sent a response to Seniors for Social Action Ontario, the organization that initiated the brief on alternatives to long-term care. Canadian Affairs obtained a copy of the response.
In it, the ministry touts the $4.9 billion the government plans to spend by March 2025, including $1.82 billion this fiscal year. This funding will create more jobs in long-term care.
The funding will also increase the average care a long-term care resident receives from a nurse or personal support worker to four hours a day, up from an average of 3.73 hours in 2018.
‘Problem is retention’
Patricia Spindel, chair of the advocacy group Seniors for Social Action Ontario, says the government’s response misses the mark.
The government “thinks it can build its way out of the long-term care crisis, and it can’t,” said Spindel, who authored the brief.
Seniors for Social Action advocates for an end to large long-term care facilities. But she says having seniors live in smaller homes that have staff to care for them could be helpful.
A recent report from the National Institute on Ageing also recommended that Canada invest in more smaller homes for seniors.
Hiring more staff is not the answer either, Spindel says. “The problem is retention,” she said. The health-care system needs to be a place where people want to work.
Mary Jean Hande, an assistant professor at Trent University who researches home care, says the government needs to facilitate sustainable careers in home care. This means paying workers fairly and giving them the same protections as other health-care workers.
“The workers need to be treated like they’re the pillars of our health-care system that they are,” she said. “Right now, they’re just treated as temp workers.”
Even though surveys consistently show that seniors do not want to move into long-term care facilities, residential care facilities are still “treated as the default,” she said. Creating alternatives to long-term care is a “matter of political will.”
Back in Aurora, Barker knows how disheartening it can be to apply for home care.
Last August, he called Ontario’s telehealth and asked about the application process for MAID. He was feeling depressed, tired and emotionally drained from constantly encountering places that were inaccessible to him.
He never asked for an application, but he learned how applying for MAID is much simpler than applying for home care.
That angers him.
“I don’t want to die if I’m able to live my life with a reasonable amount of independence,” he said.
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