B.C. man with ALS encouraged by UN watchdog's 'urgent' call for services
Penny Daflos, CTV News Vancouver
Published Friday, April 12, 2019 6:10PM PDT
Last Updated Friday, April 12, 2019 7:29PM PDT
A Powell River man contemplating physician-assisted death in the face of limited healthcare options is feeling vindicated and encouraged by a United Nations analysis of Canada’s treatment of people with disabilities that found our country is in need of “urgent” change to address what it described as a human rights issue.
UN Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas Aguilar, held a press conference in Ottawa Friday where she told reporters, “I'm deeply concerned many people with disabilities are presented with no other choice than the placement of residential institutions like nursing homes and group homes.”
She described the approach as segregation and re-institutionalization of persons with disabilities, calling on the government to “provide the necessary support for persons with disabilities to live independently in their communities. This should be recognized as a human right and not merely as social assistance program."
When CTV News Vancouver presented her comments to 40-year-old ALS patient Sean Tagert, he responded in text messages he “typed” after selecting letters with eye movements: “They say a country can be judged on how it treats the sick and elderly. Today, UN envoy Catalina Aguilar voiced what many Canadians with disabilities already know – we are failing.”
No longer able to eat, speak or even breathe on his own, Tagert has been battling Vancouver Coastal Health for 24-hour homecare funding. He’s currently funded for 20 hours a day through the Community Supports in Independent Living (CSIL) program and struggling to hire caregivers for the round-the-clock care he requires to maintain his breathing machine and move him to avoid bedsores and pain.
“The government’s [CSIL home support funding] is a generous program, but ALS is so catastrophic,” his mother Patricia Mennittee told CTV News Vancouver in their wheelchair-modified home when first interviewed for this story. “There is no denying this is an illness that requires 24 hours a day of care and we've done our best as a family to rise to those needs but we're becoming exhausted.”
Tagert’s family doctor has also been advocating for the immobilized father to get CSIL funding in order to stay in a setting where he can enjoy quality time with his son and has a sophisticated technological setup to communicate with the outside world through the movements of his eyes, the only part of his body he has any control over.
"I think he's an incredibly brave guy who remains optimistic and hopeful,” said Dr. Stephen Burns when CTV first interviewed him about Tagert’s funding situation in early April. “The circumstances he finds himself in, I think there's few of us who can endure what he's endured. I think what he's been able to do on a very limited budge it provide himself with the best quality of living that could be obtained with his condition.”
When CTV News asked Vancouver Coastal Health to address Aguilar’s statements in relation to Tagert’s situation, the health authority reiterated its position staff is willing to help Tagert find ways to maximize his existing funding, like hiring live-in caregivers in lieu of rent. Their initial email statement on Tagert ended with the confirmation that “There are a range of care options for clients with complex needs, including 24-7 residential care.”
Without a care facility for quadriplegic patients in Powell River, Tagert has been presented with the George Pearson Centre in Vancouver, which would take Tagert away from his technological access to the outside world and the home setting where he is comfortable spending time with his 11-year-old son.
“So left with the options of either waiting for a day that I have no staff available and choking to death, or being institutionalized at George Pearson (the ‘jail for quads’) and dying a slow tortuous death, I’m going to pursue medically assisted death,” he wrote on a March 19 Facebook post.
“I get why a person goes there, I absolutely do, when all you can see in your future is more suffering,” said his mother.
But Tagert feels much more hopeful in the wake of Aguilar’s statements in Ottawa.
“Let’s fix it,” he wrote.
Aguilar suggested Canada is acting against Article 19 of the Convention of the Rights of People with Disabilities, which discusses “the equal right of all persons with disabilities to live in the community, with choices equal to others” and specifically: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.”
“This is something that really needs to be addressed urgently [in Canada] to make sure that services are provided in the community,” said Aguilar. “That support is provided for persons with disabilities so that you avoid situations in which nursing homes or home groups or other kind of residential facilities are the only and default option for people with disabilities"
Tagert says he’s now considering filing a complaint with the BC Human Rights Tribunal.