Donna Smith felt defeated and deflated each time she tried to secure accessibility equipment for her quadriplegic sister.
Smith is a Williams Lake home-share provider for her two sisters with Down syndrome. Her sister Diane Craig required greater assistance after losing functions in her four limbs.
“Diane declined so quickly, and all the equipment took so long, some of it was not even usable by the time we got it,” Smith said.
Diane Craig died in September 2024 due to health complications.
Submitted
Smith said she fought for years with Community Living BC (CLBC) to get her sister shower equipment, a wheelchair and a bed that suited Craig’s needs.
“It seems like each piece of equipment needed three meetings and at least 10 people in the meetings,” she said. “Why did I have to fight for things that my sister needed?”
Smith said while they waited for the accessibility equipment, Craig was trapped in her bedroom for five months.
“At one point, CLBC had told me that Diane could take the HandyDART up to the hospital once a week for a shower, and sometimes it gets -40 C here,” Smith said.
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The Crown corporation supports 20,000 people living with developmental disabilities, including 4,300 people living in home-share situations.
Smith is also frustrated by the lack of adequate assistance. She said Craig required help bathing, feeding, dressing, changing, incontinence issues and wound care.
“They sent unqualified people to my house, and then it left me for a month with no healthcare staff at all,” she said.
‘Wildly inappropriate’
While Craig was in the ICU, Smith said two CLBC workers stopped by the hospital for a “meet and greet.” Smith was bewildered as to why they wanted to meet Craig, who was 57 years old and had been under CLBC’s care for years.
“A few hours later, Diane passed away. It was wildly inappropriate. It was an added layer of pain for the family,” Smith said.
Craig died in September 2024 due to health complications.
Smith said she wants to speak out because she believes the status quo at CLBC cannot continue.
“Something has to change,” she said.
“I would never want people to go through what we did and that the individuals are treated like numbers.”
Inquest hears of lack of funding
In January 2025, the BC Coroners Service held an inquest into the death of Florence Girard, a woman with Down syndrome who died of starvation and was under CLBC’s care.
The inquest heard the Crown corporation has a $1.7 billion budget, and that CLBC is aware that caregivers are unhappy with the supports available.
“We have heard pretty consistent feedback from caregivers and agencies that it isn’t sufficient funding for the services that are being provided,” CLBC supervisor Tiffany Wickham testified at the inquest.
‘Things worse today’
Selena Martin with the Home Share & Family Caregivers Alliance of BC said Smith’s story is not uncommon.
“The main issues we hear within our group is the lack of support, lack of funding, and that CLBC is not being held accountable,” Martin said.
Over the last several weeks, there has been a growing chorus of people calling for the province to scrap CLBC and take back the duties of caring for B.C.’s most vulnerable.
Martin did not go as far as calling for CLBC to be dismantled but said it does need major change.
She believes a task force should be formed, made up of people with lived experience and education and who are free of financial conflicts to choose the next board members.
“The reality is, there’s no more trust with Community Living BC. The board has to be disbanded. We need a new board,” she said.
“Things are worse today than they were when Florence passed away.”
Global News has requested an interview with CLBC CEO Ross Chilton.
