Families' 'worst fear' realized in investigation into Victoria charity for adults with disabilities

Reading about what was uncovered during an investigation into the care provided to developmentally disabled adults by two nurses at Victoria's Garth Homer Society has been a troubling experience for Jennifer Baumbusch.

Baumbusch is an associate professor of nursing at the University of B.C. whose research focus is long-term residential care, but she's also the mother of an 18-year-old who has complex medical needs and intellectual and developmental disabilities.

"Our worst fear is that our children will be in the care of an organization and that we will be systematically excluded from their care, and then the outcome could potentially be death," she told CBC News.

"It's what keeps us awake at night."

Late last month, the B.C. College of Nurses and Midwives issued a public notice announcing the conclusion of a three-year investigation into nurses Victoria Weber and Euphemie (Phemie) Guttin, both high-level employees of the Garth Homer Society (GHS).

The college says the investigation uncovered "serious concerns," including that Weber and Guttin restricted their clients' access to medication and medical professionals, and "effectively obstructed" parents from interacting with their adult children, labelling family members who advocated for their loved ones as difficult or even dangerous.

One mother who complained to the college, Margaret Lavery, has also filed a lawsuit claiming that Weber, Guttin and GHS "caused or contributed" to her 21-year-old daughter's death, allegedly ignoring symptoms of a bowel obstruction for months.

For Baumbusch and other advocates, these revelations touch on some of their most pressing concerns about how people with developmental disabilities and their families are treated, as well as oversight of the systems that support them and a lack of options for care.

"For families who are working with any agency or organization, the fear and concern that you have is that when you advocate ... that you are labelled and then shut out of that individual's care," she said.

"It's especially frightening when you're not able then to say, 'OK, well, I would like that individual to live with me,' because the system is unwilling and unprepared to give you the resources to do that."

According to the college's public notices, Weber and Guttin do not agree with all of the findings from the investigation, but they have agreed to the suspension of their nurses' licences. GHS has also denied responsibility on behalf of the two nurses in Katrina Lavery's death.

Former employee complained over treatment of families

The college's investigation was prompted by complaints from three parents and a former GHS employee. All three parents Margaret Lavery, Cyndie Bourke and Edith Artner have told CBC they were appalled to learn that Weber and Guttin have kept their jobs as senior managers at GHS.

The society has said Weber and Guttin are "integral members of the Garth Homer team."

The former employee, whom CBC has agreed not to name, said her complaint was prompted by how Weber and Guttin treated certain parents.

A nurse herself, the former employee worked in the home where Bourke's daughter Taryn was living, and said she saw how Bourke was painted as aggressive when she tried to raise concerns about her daughter's care.

That didn't sit right.

"Every parent is controlling when they have a child with a disability because that parent has dealt with that child for many, many years and has always been responsible for their care," she said.

The former employee shared an email that Weber sent her in February 2018, outlining how she was expected to respond if Bourke visited and wanted to see Taryn.

In the email, Weber instructs the former employee to make it clear that Bourke will not be allowed unsupervised visits with her daughterand says that if Bourke refuses to leave the property when asked, the care workers should call 911.

"That was the last straw for me," the former employee said, explaining that she called the college not long after that.

'An ableist approach to our system'

According to Karla Verschoor, the executive director of Inclusion B.C., this kind of situation is not unique to Garth Homer Society.

"Negatively characterizing people and their families as difficult is a strategy used against many marginalized people to maintain control in complex situations," she said.

"I think it's very characteristic of an ableist approach to our system. And then I do think at other times it is consciously being done, and it probably stems from an arrogance that professionals know what's best for the families."

Ableismisdiscrimination against people with disabilities.

Both Verschoor and Baumbusch said what they've learned about the situation at GHS makes them concerned about oversight of facilities for adults with developmental disabilities.

"I think we've seen a failure in our existing safeguards system, and I'd be curious to know how it's going to be addressed by the organizations involved," Baumbusch said.

Community Living B.C. (CLBC), the Crown agency that provides support for adults with developmental disabilities, cancelled its residential contract with GHS in May 2018 following Katrina Lavery's deathand arranged an emergency overnight takeover of five homes by a new non-profit provider.

A CLBC spokesperson said in an email that the agency takes the safety and well-being of its clients "very seriously," and has safeguards including qualification requirements for service providers, standards for health and quality of lifeand regular monitoring.

In a written statement, Nicholas Simons, the minister responsible for CLBC, said he's confident in the services it provides.

As her daughter enters adulthood, Baumbusch said she'd also like to see more funding and a greater variety of options to provide care and housing for adults with developmental disabilities.

"If an individual says, 'I want to stay living here with these people in my family,' or 'I want to go live in an apartment with my friends,' they ought to be able to do that," Baumbusch said.