VANCOUVER -- Karen Anderson is tired.
Tired of being cooped up at home.
Frustrated by not being able to visit her mother who lives in a care home.
And exhausted from the non-stop care and love she provides for an adult woman in her 40s who also lives in her Coquitlam home – a woman we’ll call “Marie.”
But when it comes to the latter, Anderson wouldn’t have it any other way.
“It takes a special kind of person to do this,” I remark as we sit several meters apart in her backyard, with a small gas fire burning to take off the chill on this unusually frigid April morning.
“Well, we’re lucky because we’ve got the special person in my home,” Anderson replies.
Marie lives with Down syndrome and early-onset dementia. She’s been in Anderson’s life in some way, shape, or form for more than three decades.
After Anderson’s husband passed away in 2016 – and in this new age of physical distancing – when it comes to care and company, Karen Anderson is Marie’s lifeline and, while the two aren’t biologically linked, her family.
“She calls me mum,” Anderson says. “She’s my daughter, as far as I’m concerned.”
Exciting travels to places like Hawaii and Disneyland have now been replaced with baking and crafting cards.
And Anderson’s dreams have also been subsumed by worries because of the existential threat COVID-19 could present to her or to Marie, and the difficult choice she could be forced to make.
“If I get sick and have to rush to the hospital under these circumstances, who takes care of her?” Anderson asks.
Typically, Anderson says, she might rely on a close friend or her sister, who has her own family.
But in this self-isolation era, with so many unknowns, bringing someone into her home – and potentially transmitting infection either way, or out into the world – is out of the question.
So is being forced to make the choice of who gets care and who doesn’t.
“It’s me and her against the world at this point, really,” she says.
Searching for guarantees in a 'fractured' system
Anderson is one of thousands of what are called home share providers across our province. They care for adults living with developmental disabilities, giving them a safe place to live, along with meals, comfort, care and support.
Many, like Anderson, do it out of love, to give the person they care for a sense of belonging and family.
Providers receive some funding from the provincial government, either directly through Community Living BC (CLBC), the Crown Corporation which oversees these relationships or from non-profit societies that administer their contracts. Anderson’s arrangement is the latter.
It is a system that Anderson calls “fractured” at the best of times. Now, in a crisis like none our province has ever faced, Anderson feels any safety net that may have been there, has fallen.
When I ask her to describe her feelings in one word, she offers this: “Abandoned.”
“It’s, ‘we’ll take care of you – we’ve got a plan in place – we’ll take care of you.’ But we don’t know what that plan is,” Anderson says.
Text messages shared with CTV News that show exchanges between Anderson and her coordinator at the non-profit society that oversees her home share contract also seem to express frustration.
“I think you’re right to ask those questions,” the coordinator wrote. “I think they need to be answered and that a plan does need to be put in place. At this point, we’re trying to figure out what that could look like.”
Anderson tells me she doesn’t want to name the coordinator or society publically because she believes that her first point-of-contact is doing her very best to find a solution.
It’s a call for help that’s been echoed by the BC Home Share Providers Association and Selena Martin, who recorded a YouTube video that appealed directly to Shane Simpson, the Minister for Social Development & Poverty Reduction, who oversees CLBC.
“We need backup plans. We need emergency beds. And we need them now,” Martin said in the video.
But CTV News obtained an email sent to home share providers from a CLBC office in Vernon, dated March 27, that reminded providers to come up with their own backup plan, should they contract COVID-19.
“If not, please solidify one NOW, prior to any such illness,” wrote Rena Ludwig, a local quality service analyst.
While the email wasn’t directed to Anderson, she says it didn’t surprise her.
“It makes me angry,” Anderson says.
The plan for B.C.'s most vulnerable
When I give CLBC’s CEO Ross Chilton the opportunity to respond to Karen Anderson’s plea for help, he empathizes with her:
“We certainly understand that it’s a stressful time and we need to respond on a case by case basis,” Chilton says. “We can’t abandon these people.”
When I ask him for a second time to be as specific as possible about a worst-case plan for the thousands of British Columbians like Anderson and Marie, he says it’s something his teams and the province have been working on.
“What is the plan? What does it look like?” I ask a third time.
“It could be to another home share arrangement if the agency has another provider available,” Chilton says. “It could be to a group home setting. It could be to whatever’s required.”
It’s possible that may one day include a facility with emergency beds, but Chilton points out that it may be difficult and disruptive to move someone out of their own home and into the unknown.
From Chilton, I decide to go one step further to Minister Shane Simpson.
Because Karen Anderson is looking for a promise.
“(Can you) guarantee that no one who needs care will be abandoned or left alone?” I ask Simpson.
“We will do everything possible to make sure that people like Karen and all the people who deliver those important services, receive the supports they need,” Simpson says.
He also thanks Anderson for the care she provides Marie.
And both Simpson and Chilton personally guarantee that no home share provider raising concerns or criticism publically about their agencies or CLBC will face any kind of retaliatory action.
“There is going to be no retribution,” Simpson says. “We’re all in this together. We’re in this to support each other and to support those that are most vulnerable.”
Back in Coquitlam, Karen Anderson and Marie take their Havanese poodle, Scotia, for a walk around the block – one of their attempts to keep a normal routine.
Anderson tells me she’s not feeling “very confident” about those promises.
But just a few hours later, as her story goes to air, she gets a text message from her agency coordinator.
“Plans are being talked about … I will work with you on a plan for you and [Marie],” the message reads, in part.
“Your concerns have been heard.”
