Concerns around a policy that resulted in a South Surrey woman dying without a support worker or family member by her side are being heard, and change is imminent, advocates say.
“The government’s on-line, they want this to happen,” Doug Tennant, chief executive officer of UNITI, said Friday (May 8), regarding a push to ensure pandemic-related hospital-visitation policies enable people with disabilities to have the support they need when receiving care.
“From what I hear… there is broad support for this to happen and they’re just trying to work through the details right now.
“When the change is made, I am going to be referring to it as Ariis’ Law, because she’s the one that made this happen, and it will save lives and allow people to have a much better and safer experience in hospital.”
Tennant and others across the Semiahmoo Peninsula and B.C. have been calling for change following the death last month of Ariis Knight.
The 40-year-old – who had been supported by Semiahmoo House Society for the past decade – died at Peace Arch Hospital on April 18, after being admitted three days earlier with non-COVID-19-related breathing difficulties.
Despite Knight being non-verbal, no one who knew and supported her, or understood how she communicated, was allowed to be with her, due to policies around hospital-visitation protocols during the ongoing pandemic.
Knight’s brother David said his sister’s voice “was stripped away from her at that point.”
“She died alone and she didn’t need to,” he told Peace Arch News a week after his sister died.
Fraser Health officials told PAN that “medical staff determined that additional support for communication was not required” for Knight.
Tennant noted at that time that Knight’s story was not unique to Peace Arch Hospital, or even the Lower Mainland.
He reiterated Friday that there are still people in B.C. hospitals without the support they need, but added that a “gradual shift” in that trend has been seen in the weeks since Knight died.
Much of the push for change has come from self advocates, Tennant said, describing their message as “the voice that should be heard.”
He pointed to a May 5 letter sent to provincial health officer Dr. Bonnie Henry, Minister of Health Adrian Dix, Minister of Mental Health and Addictions Judy Darcy and Minister of Social Development and Poverty Reduction Shane Simpson.
Signed by 27 individuals – including several self advocates, family members and Knight’s brother David – as well as 10 organizations, the “plain language” letter asks for a policy “that helps to make sure that patients with disabilities have the support they need when they are getting health care.”
“This will mean people with disabilities get the same quality of health care as other Canadians,” it states.
The letter adds that it is “discrimination” to not allow people with disabilities to have a support person with them when seeking medical help.
“During the COVID-19 pandemic, support person(s) may not be allowed into the health care setting. This is a problem for people with disabilities, as many of us require the help of a support person(s). Support people can help us feel calmer, help us stay safe, and help us communicate our needs, decisions and experiences,” it reads.
Pointing to Knight’s story, the letter notes Henry’s comment regarding the need for hospitals to accommodate people with disabilities.
“But this is not always happening,” it continues.
“We have heard about other people with disabilities who have not been allowed to have support people with them at health care settings, and this is making it hard for us to get the health care we need during a scary and dangerous time.”
Tennant said he is “very optimistic” that clear direction for health authorities will come next week.
“My understanding is that government understands and is working on changing or revising the policy language to include that people who need support in communication and decision-making, that either family members or support staff or home-share providers would be able to go into the hospital to do that,” he said.
He believes it will also open eyes around the fact that those who support people with disabilities in hospital are not “visitors,” but rather, are partners in their care.
Noting Knight’s story “captured the empathy of our country,” Tennant said the policy change will be her legacy.
“Ariis, she’s been the driving force behind this happening. People across British Columbia and Canada have seen that situation and understood that it wasn’t fair to Ariis to have to die alone, and people are acting because of what happened to Ariis – which is a really good thing to come out of a really sad situation.”