The COVID-19 pandemic has highlighted long-standing barriers preventing Canadians with communication disabilities from fully accessing the health-care system, according to advocates across the country who are calling for governments to address the issue.
Organizations and individuals point to recent cases in which disabled patients were denied access to crucial communication supports while in hospital, leaving them unable to interact with loved ones or medical professionals.
They say the two incidents — one of which involved the death of a 40-year-old woman — highlight the inconsistent approach to such issues in hospitals across Canada and should prompt governments to set uniform standards to protect disabled patients.
Heidi Janz, an Edmonton-based professor at the University of Alberta who has cerebral palsy and uses a wheelchair, said the precautions put in place to limit the spread of COVID-19 have exacerbated the struggles people relying on alternative means of communication face on a daily basis.
"It terrifies me — on an advocacy level, but also on a personal level," Janz said in an interview conducted with the support of an aide who echoed her words. "I have experience with the kind of inability to communicate with a medical team and the fear that comes with that."
The two recent cases, which Janz said hint at "a disaster waiting to happen," played out in different parts of the country and involved patients who were hospitalized for reasons not related to COVID-19.
The family members of both patients either could not be reached or did not respond to request for comment, but advocacy groups familiar with the cases note the similarities.
In one instance, a 40-year-old woman in British Columbia with cerebral palsy died alone in hospital last month. Pandemic-protection policies at the facility barred support workers who usually assisted her in communicating from entering the premises.
In another case, a Toronto man who used an iPad to stay in touch with his relatives saw his use of the device unexpectedly limited to one hour a day. Multiple local media reports cited hospital officials alleging the iPad could be used as a surveillance tool.
Janz and other Canadians with communication disabilities said these cases are horrifying but not surprising.
Janz said she refuses to go to an emergency room without someone there to help her convey her wishes to medical staff, noting health-care workers often make assumptions about her capacity to weigh in on her own care based on her disability.
Anne Borden, co-founder of the autism self-advocacy organization Autistics for Autistics, said people who rely on communication devices face similar barriers.
Medical staff are not always aware of the need to recognize augmentative and alternative communication — tools that supplement or take the place of speech. She said non-verbal patients frequently have their need for assistive technology questioned or ignored, or watch in frustration as medical staff address remarks to a support person rather than directly to the patient.
The issues are compounded, she said, for those living in poverty and without access to technology and other supports.
Both Janz and Borden feel Canadian governments should emulate the state of California, which recently broadened its restricted list of visitors allowed inside during the pandemic to include support people for patients with physical, intellectual and developmental disabilities.
"Communication is a human right," Borden said. "What we want is an acknowledgment that that is also true for disabled people, and it should be across the board."
Advocates said there are currently no uniform standards to follow in Canada, leaving hospitals free to develop their own policies.
Barbara Collier, executive director of Communication Disabilities Access Canada, said that has to change. She said health-care facilities across the country should be given direction on everything from establishing a patient's communication needs during intake to policies around support workers, adding these long-standing gaps take on additional urgency as the COVID-19 pandemic continues to unfold.
"This should have been in place years ago," she said.
The federal ministry responsible for disability inclusion did not immediately respond to request for comment.
The Public Health Agency of Canada released a document on Thursday addressing various aspects of the COVID-19 pandemic and their impact on disabled Canadians. It said health-care providers should be "ensuring that restrictions account for people with disabilities' needs and allow essential support staff, sighted guides, interpreters and/or family members to be with them."
The Ontario Ministry of Health confirmed it can only issue guidance to hospitals, which are described as corporations with autonomy to set their own policies.
Current directives from provincial public health officials urge health-care providers to limit visitors to just four narrow categories, none of which address the communication needs of disabled patients.
But a spokeswoman said the ministry will be "reviewing the current directives and guidance that have been issued to the health system" as the province continues to monitor the COVID-19 outbreak.
This report by The Canadian Press was first published May 7, 2020.
Michelle McQuigge, The Canadian Press