Darren Guy is fed up and leaving British Columbia.
When he goes, the 51-year-old man with a disability who Guy has been looking after in his Coquitlam home for six years through a provincial government program will also need a new place to live.
“It’s come time now where I’m just liquidating everything and I’m moving to New Brunswick,” said Guy, 53, who was born and raised in B.C. “It’s going to be a difficult transition, because he’s of course attached to me.”
Part of Guy’s move is based on being able to sell his property in super expensive B.C. and buy a house in a beautiful part of the Maritimes on two-thirds of a hectare for $500,000.
But it’s also the result of increasing frustration with how the home-sharing program run by Crown corporation Community Living BC treats providers like him.
“The major factor is the pay,” Guy said. “It’s just not a sustainable profession as far as I can gather with what’s affecting me right now…. With fuel, natural gas, rent, interest rates, everything going up, we don’t get a raise and we’ve been told we’re not getting a raise this year as well.”
Under the program — funded by the provincial government through CLBC and delivered through local agencies — providers like Guy share their homes with adults with disabilities. There are about 4,000 such providers looking after 4,200 people.
A related CLBC program provides funding for disabled adults to receive live-in support in their own homes.
CLBC presents shared living as having many benefits that can enhance the quality of life for a person with a disability, including stable relationships with providers that can last many years and offering a balance between connection and independence.
But according to Guy, while few are in a position to say it publicly, there is widespread and growing discontent among providers who find they are doing a stressful job for a diminishing return.
“The pay is basically $3 an hour, for full-time 24-7 work,” said Guy.
‘A myriad of medical conditions’
Home-share providers are paid according to how much care the client is assessed as needing, with payment amounts from CLBC ranging from $1,000 to $4,925 a month. The “total compensation” also includes $716 a month that comes from disability assistance payments to clients.
For privacy reasons Guy didn't share the client's name or personal details. Guy had worked one-on-one with the man previously and made the invitation for him to move in when the basement suite in his home became available. Despite Guy's frustrations with the system, it's clear there's an intimacy that's built through the years they've lived together. He refers to the man as "my guy" and says nobody knows the man's needs, or how to make sure they're met, like he does.
The man Guy looks after is blind, has Type 1 diabetes and another illness that affects every organ in his body. “He’s got a myriad of medical conditions” and a significant intellectual disability, Guy said.
That places the client in the fourth of the five levels CLBC sets out, so Guy gets $4,000 a month to provide care for him.
The $716 from the client, which Guy believes should be intended to cover his rent and food, has been frozen for several years. That means increasing pressure to dip into CLBC portion of the wage to provide things the client needs, said Guy, who has worked one-on-one with people with disabilities since 1999 and been a home-share provider since 2008.
The pressure on that money is significant. Inflation averaged 2.8 per cent in B.C. last year and in March prices were six per cent higher than a year ago. Canada saw prices rise faster than they have at any point in the last three decades.
And yet the provincial government opted to freeze income assistance and disability rates in its February budget, a decision Finance Minister Selina Robinson justified by saying there had been a large increase last year.
The decision meant no increase for people with disabilities living in home-share situations either.
Tightening budgets ultimately end up affecting the people receiving the care, Guy said, noting his client’s diabetes means he needs a specialized diet. “The client’s going to start to be going without certain medical needs, food.” Eventually, the financial realities will mean that for the client “shelter won’t be possible,” Guy said.
Room and board rates long frozen: home-share president
The president of the BC Home Share Caregivers Association, Selena Martin, said the $716 for room and board has in fact been frozen since 2006.
“We’re just asking that we be compensated fairly for their cost of living and it’s up to them [CLBC and the government] to figure out how to make that happen,” Martin said.
By her calculation, the rates that were last updated in 2020 are lower than they were in 1997.
When disability income assistance rates go up, as they did in recent years, CLBC should review how much it provides for room and board, she said. The goal should be to keep up with the rising cost of living and the expenses providers are expected to cover. “It’s not about us trying to take money away from them.”
Many providers drive clients to appointments, do large amounts of laundry and clean for them, said Martin, who has been a home-share provider for 14 years. “It’s like hotel service.”
If properly funded, it’s a wonderful program, she said. When funded inadequately, however, it feels like charity and many providers would be better off working a minimum wage job with fewer responsibilities.
At worst, compared to group homes or other options, home sharing becomes seen as a cheap way to look after people with disabilities, with savings largely dependent on the lack of unionization in the sector and a contract model that skirts labour laws that would apply in other settings.
As the minister of social development and poverty reduction, Nicholas Simons is responsible for CLBC. He was unavailable for an interview.
A spokesperson for CLBC, Randy Schmidt, responded to questions on behalf of both the Crown corporation and the minister.
“CLBC greatly values home-sharing providers,” Schmidt said. “They provide an important service to support people to have a home and participate in the community.”
The funding for home-sharing providers comes from both the CLBC rates and the people living in the home share, he said. “This total amount is meant to cover shelter and support costs and is therefore, in most cases, not subject to income tax.”
Individual’s contributions to the shelter and support costs have been frozen at $716 since 2016, Schmidt allowed, but said that was so that they would benefit from increases the government was making to income assistance for people with disabilities.
Some of the money CLBC provides is also intended to cover the clients’ room and board, he said. “The contribution from individuals is not meant to cover all room and board costs, as the other portion of shelter and support costs are covered by CLBC rates.”
Those rates have increased, but not in the last two years.
In 2019 and 2020, there were significant annual increases in recognition of the fact that it had been a decade since the funding had last been adjusted, said Schmidt, resulting in an increase of between 15 and 42 per cent to support individuals depending on the level of care they needed.
He also noted that for five months in 2020 the government provided an extra $500 to $1,500 per month to home-share providers to cover costs related to the pandemic.
Further permanent increases are under consideration, he said. “CLBC is currently working with the ministry to review these contribution levels taking into account income levels, poverty issues, as well as costs to home-sharing providers.”
Home-sharing providers are a vital part of providing supports to people with developmental disabilities, Schmidt said. “It works best when people bring an inherent desire to share their homes and support people with disabilities. At the same time, there is recognition that there needs to be adequate funding to cover costs and attract and keep people in these important roles.”
‘No holidays’: Guy
Guy said the idea that CLBC’s payments are supposed to cover part of the shelter costs is new.
“When I started in 2008, CLBC made it clear more than once that that $716 is completely separate from my wage and that’s how I have taken it all this time,” he said.
He’s fought to keep the two streams of money separate even though CLBC prefers to lump them together to make the total compensation sound better, he said. “I’ve said ‘no way’ to that because that’s not the way it was when I first started and that’s not the way it’s supposed to be.”
Those kinds of disagreements have left Guy feeling he can’t trust CLBC or the agency he works for.
“It’s just an icky way to live your day-to-day life I’ve found, when you’re trying to do your best to help somebody with their life and every corner there’s some deceitful manipulation going on.”
And there are other aspects to the working conditions that can leave providers like Guy feeling exploited.
There’s no extended medical or dental coverage, he said. Nor is there allowance for providers to take holidays. “If I want to go away, I need to pay somebody $180 a 24-hour-period out of my wage,” he said. “I can’t pay my mortgage and pay my bills if I take holidays, so there’s no holidays.”
Meanwhile there are expenses that are unique to the job. The client’s moving expenses, for example, will need to come out of the money Guy is provided for his care.
“It’s all life consuming,” he said. “When he overflows the toilet, damages my house, nobody pays for that but me.”
The responsibility that comes with the job can also feel heavy, Guy said. In his case it includes making sure the client gets his medications, administering insulin and being available if anything goes wrong.
“When he goes into the hospital I’m expected to be at his bedside,” said Guy who has another job during the day working with people with disabilities while the client goes to a day program. “All doctors, dental, any kind of appointments, I’m to take time off my job outside the home to take him to that.”
COVID added pressure
During the pandemic, though both Guy and the client have been healthy, he has worried what would happen if he got COVID-19 and was unable to provide care.
“It just feels like I’m completely alone,” he said. “If I get in a car accident tomorrow, or if I’m unable, my client does pass away and that’s the long and the short of it. It’s a lot of responsibility.”
Last year, when a new blood sugar monitoring device became available, it was up to Guy to do the paperwork to get the ministry to pay for it. “I don’t know if you ever tried getting anything out of the government, but that’s a lot of work.”
Even when the client goes to his mom’s for a few hours, Guy remains on call. The client’s parents are in their 80s and have their own medical challenges. “If something goes awry, she’s calling me. How much of a break is that?”
As Guy sees it, CLBC takes advantage of providers’ good natures and their sense that they are doing something socially positive. “People who are more passive than I am, they really get bullied,” he said. “It’s a bullying kind of work. There’s no thank yous, like I say wage increase, there’s no nothing.”
Schmidt said CLBC recognizes that many home-sharing providers have taken on extra duties during the pandemic.
“We are not seeing widespread departures from the sector, but do recognize the need to work proactively in multiple ways to support this model through our three-year plan, which focuses both on assuring quality and better supporting home-sharing providers,” he said.
Plans include creating a new non-profit “to support awareness and recruitment, training and peer-to-peer networking and support.” Critics question why it’s a priority when there are so many other pressing needs, but Schmidt said it will receive “modest” funding through CLBC’s administration budget and without reducing the amount of money available for services.
“The plan also includes efforts to improve resources, communications, respite services and strengthen standards and monitoring,” he said.
Asked what he would ask Minister Simons if given the chance, Guy said, “What are we as a society going to do when this model has come to an end? Where are these people going to live? Because the model that’s set up now is unliveable.”
“It’s not a viable option anymore. Unless rates are at minimum doubled it’s not going to work. I know many, many people quitting.”
Guy has given his notice for the end of May and will be on his way to New Brunswick shortly after that. A search is underway to find somewhere for the client now living in his home to go.