PORT COQUITLAM (NEWS 1130) – An over-reliance on formal monitoring systems lets individuals, like a woman with Down syndrome who died while under care two years ago, fall through the cracks, according to a disability advocate.
Florence Girard, 54, weighed only 56 pounds when she was found dead in a private home by police in Port Coquitlam on Oct. 13, 2018, say family members.
“I confess that having a daughter who has Down syndrome myself, it hit home maybe a little bit more than for a lot of people,” Al Etmanski, a longtime advocate for those with disabilities, says. “Beyond that, none of us want anybody that we care and love about to die alone in what seems to be such tragic circumstances.”
A 15-month investigation determined Girard “didn’t receive the necessaries of life,” which is defined as anything needed to preserve life, like food, shelter, medical attention, and protection from harm.
She lived with her caretaker, Astrid Charlotte Dahl, who was her single point of contact for help, at the time of her death.
Girard’s situation points to a broader issue, says Etmanski, who is also an author and international consultant on disability support.
“Based on 40 years of my own experience as an advocate and a monitor of programs and services for disabled people, and as a designer of alternatives to the current approach, I would says that one of the biggest handicap people with disabilities experience is that most people think that if they had a program and service, they’d be safe,” he tells NEWS 1130. “And no matter how we design programs and services, they’ll never be safe enough in those environments, and nor would any one of us be safe in those environments.”
Etmanski says in most cases, it’s just assumed formal programs and services are what’s best for people living with a disability.
“When, in fact, disabled people, like all of us, yearn for, crave, thrive, in relationship with family, and friends, and neighbours,” he explains, adding programs are often designed in such a way that actually prevent the people who rely on them from “flourishing in a network of support.”
He says it’s not lost on him that the answer to the problem is complex, but he notes the only way to inspire real change is by making networks of support a “critical component” of service delivery.
“If we’re designing services based on the assumption that all disabled people need is programs and services, then we’ll continue to have these tragedies,” Etmanski admits. “And I’ve spent the last 30 years of my life seeing that come true and seeing the difference it makes in people’s life, and the greater safety and security it provides.”
Dahl and the company that contracted her, Kinsight Community Services, have both been charged in connection with Girard’s death. Etmanski says Kinsight is one of B.C.’s oldest service providers, and is actually working toward building the kinds of networks he’s talking about.
While he knows changes are being made, Etmanski says progress isn’t as quick as he’d like it to be.
He argues formal monitoring isn’t sufficient when it comes to preventing deaths like Girard’s.
“If there’s any good that can come out of a tragedy like this, it would be to sit down and look at how we build a relational model of support for disabled people into the structure of our institutions.”
There are currently thousands of people in B.C. in community living situations.