Disabled people and their families are calling on the B.C. government to make changes to visitor restrictions in hospitals after a 40-year-old woman with cerebral palsy died alone last month at Peace Arch Hospital.
Ariis Knight could not speak and depended on caregivers and family members to communicate. But because of visitor restrictions put in place to control the spread of COVID-19, none of Knight’s caregivers or family members were allowed to be with her in the hospital.
Knight died on April 18, a few days after she was transferred to the hospital from the group home in South Surrey where she had lived for a decade. She had been experiencing breathing difficulties, but tested negative for COVID-19, according to her brother, David Knight.
Now, a month later, Paul Gauthier is haunted by the tragedy and is mobilizing people to send a message to the B.C. government.
Gauthier, who has cerebral palsy, is a community advocate and executive director of the Individualized Funding Resource Centre Society. He says the disability community is devastated, and scared.
“People with disabilities are telling me they’re not even thinking of going to a hospital,” Gauthier said. “And that’s because they’re concerned that they’re not going to be able to bring their support person in with them.”
Gauthier has been working with individuals and organizations, helping to grow a grassroots movement to send a clear message to the B.C. government — current policies that deal with visitor restrictions in hospitals and health-care settings shouldn’t apply to support workers and caregivers.
A letter went to a number of senior government officials, including Health Minister Adrian Dix, and Dr. Bonnie Henry on May 5. The letter called for the government to guarantee people with disabilities the right to essential support from caregivers in health-care settings.
“Nurses are amazing. But we need to be realistic about what they can handle while we’re in the hospital,” Gauthier said.
“I have cerebral palsy. For me that means that I can’t go to the washroom by myself. I can’t feed myself. Scratching my head is something I can’t do by myself. A personal support worker is the key to make sure that I continue to live.”
Government says change is coming
Dix responded to the group’s concerns on May 14, noting the COVID-19 policy around hospital access for visitors included provisions for essential visitors to accommodate people with disabilities.
But he added that the government is working to respond to specific concerns of the disability community that include special needs such as feeding, mobility, communications and decision making.
“We want to make those explicit in the policy, ” he said.
“We’re going to make changes to the policy that reflect the absolute need to provide protection for everyone involved in a time of pandemic … This is a very serious situation for people who are vulnerable.”
When asked when the revised policy might be in place, Dix said he was hopeful the new policy would be available by Tuesday.
But Gauthier says no one is declaring victory yet.
“We’re pleased that Minister Dix is taking steps to update the hospital visitor policy to address the critical needs of people with disabilities, and clarify the role of essential support people,” he said.
“But we’re disappointed that it’s taken this long. We’re concerned that the minister’s hope for a May 19 release may not happen.”