More parents of disabled adults speak out about Victoria charity at centre of investigations

Cyndie Bourke was at work in Victoria one night in early 2018 when she received a text message from her daughter, Taryn: "I signed the papers."

Taryn is 32 but has multiple complex conditions and is intellectually disabled, with an estimated IQ of 40, according to a doctor's assessment. The paper she was referring to was a consent form for residential care at a home operated by the Garth Homer Society (GHS), which would allow it to act as her representative in some medical situations.

As Taryn's legal representative, Bourke had revoked her consent not long before receiving that text message, concerned she was being kept in the dark about her daughter's health.

Victoria Weber, senior manager for health services and education at GHS, circumvented her authority to get the approval, according to the College of Nurses and Midwives of B.C.

"To have this done behind my back was just appalling," Bourke, a registered nurse, told CBC News. 

Weber's actions that day are included in a long list of reasons the college has suspended her nursing licence for more than three years in total, according to a public notice. The nursing licence of GHS's executive director for service operations, Euphemia (Phemie) Guttin, was suspended at the same time.

Bourke is one of three parents and one former GHS employee who complained about the two nurses, leading to a three-year investigation that uncovered what the college described as unprofessional conduct of a "serious nature."

CBC News has now spoken to all three of those parents and heard the stories behind their complaints, including the death of 21-year-old Katrina Lavery from a bowel obstruction that her mother, Margaret Lavery, alleges went untreated for months in GHS's care.

All three parents expressed concerns about the hundreds of developmentally disabled adults who still attend GHS's day programs, as well as those who live in its remaining group home or could one day live in a proposed housing development.

They all said they were alarmed to learn that Weber and Guttin have kept their jobs in high-level positions at GHS, where the leadership describes them as "integral members" of the team.

"I just think that's a joke," Bourke said.

Guttin and Weber have said they do not agree with all the college's findings, according to the public notices, but they've consented to discipline, including requirements for remedial education and supervision if they return to nursing.

Parents labelled as 'difficult'

In a May 27 disposition letter to Bourke, the college's professional conduct review consultant Tansey Ramanzin lays out her findings about Weber and Guttin.

That includes Weber delaying orders for Taryn's medication and oxygen supplies, which she requires because of occasional hypoxia. Weber also failed to make sure that staff who were caring for Taryn had appropriate skills and training when it came to things like dealing with her catheter, tracheostomy and ventilator, according to the letter.

A common thread in the disposition letters to all three parents is what the college describes as "combative communication" by Guttin and Weber, who "effectively obstructed" parents from seeing their children and advocating on their behalf.

In Bourke's case, she says that meant she was only allowed to have supervised visits with Taryn.

"I had been caring for her, advocating for her for all these years. And then to have that taken away from me when I knew that Taryn needed to have someone speak for her. …  it just made it unsafe for her," she said.

In each case, the college found that Guttin and Weber labelled the parents as "difficult."

For Edith Artner, those characterizations were laid out in a March 14, 2018 letter from GHS CEO Mitchell Temkin, in which he warned her against "aggression, threats and/or violence towards our staff."

Artner says those allegations were false and insulting. The college's disposition letter confirms that Guttin and Weber "negatively characterized and labelled you as difficult and/or threatening when you attempted to advocate for [your son's] best interests."

"It was an effective attempt to silence me as my son's voice," Artner said. 

Her now-24-year-old son is blind and non-verbal, and has complex medical needs. The college found that he suffered scarring to his corneas while he was in Guttin and Weber's care — damage that  Artner says is permanent — and developed behavioural problems.

Artner said he was given food he was allergic to, despite medical reports outlining his needs. The disposition letter says Weber downplayed Artner's concerns about her son's diet and didn't connect him with a dietitian when one was needed.

Her son's 300 days in Garth Homer's care have had a lasting impact on him, she added.

"My son developed ongoing and concerning symptoms and injuries, and his mental health went downhill to the point that he tried to jump out of a moving car," Artner said.

Society's board has 'grave concerns'

In a letter sent to families and caregivers earlier this month, GHS board chair Chris Lovelace acknowledged that the college's public notices "raised issues that may worry you," but said the board has "grave concerns" about the college's investigation and findings.

"We are taking legal advice on the situation and urge you not to rush to judgment based on what might appear in the media or what you might hear in the community," Lovelace wrote.

Community Living B.C., the Crown agency that provides support for adults with developmental disabilities, also investigated in the wake of Katrina Lavery's death and cancelled its residential contract with GHS in May 2018, facilitating an emergency overnight takeover of five homes by a new non-profit provider.

GHS has filed a lawsuit over that decision, alleging the contract was wrongfully terminated.

In a June 8 statement to CBC News, CEO Temkin described GHS's programs as "world-leading supports of the highest quality" and said the society recently completed an accreditation survey with the Commission on Accreditation of Rehabilitation Facilities (CARF).

"There were no recommendations for improvement in our residential services for the second consecutive time," Temkin wrote.

A statement from CARF Canada clarifies that it has not yet made a decision on accreditation of GHS's day programs following the most recent survey in April, and CARF has not accredited GHS's residential program since June 2018, when the contract with Community Living B.C. was terminated.

When asked about this discrepancy, Temkin said GHS asked CARF to review its remaining, unaccredited group home during the survey of the day programs, and the surveyors had no recommendations. A CARF representative said they couldn't comment on that statement.

Meanwhile, the Garth Homer Society remains a partner in BC Housing's ambitious Nigel Valley development plan, which includes housing provided by a group of non-profits.

In a statement last week, BC Housing said it will be consulting with Community Living B.C. and Island Health as the project moves forward.

"We … will rely upon their guidance before making any further decisions regarding Garth Homer Society's role with this development," the statement said.

For the parents who filed complaints, there's still a lack of closure to their experiences with GHS.

Artner wishes Weber and Guttin had been prevented from working with vulnerable people like her son. "There was no apology to those who were hurt by either Ms. Weber or Ms. Guttin," she said.

Both she and Bourke say they are grateful their children are safe, unlike Katrina Lavery.

"I'm just so grateful that Taryn's alive and nothing happened to her, like the other mother," said Bourke. "My heart breaks for her."