Red tape keeps disabled Montreal woman in hospital, away from home
Published Tuesday, December 30, 2014 8:39AM EST
Last Updated Tuesday, December 30, 2014 3:31PM EST
A Montreal woman with disabilities says she may have to stay in a hospital and give up her independent lifestyle because of red tape and bureaucratic rules outlining who can perform specific medical procedures.
Deborah Kennard was born with spinal muscular atrophy, a genetic disorder that results in the progressive muscle wasting and causes mobility impairment.
Kennard wasn't supposed to make it to the age of six, but is now 60. Most of the muscles in her body don't function anymore, but Kennard is still able to communicate.
"I can only move my thumb, index finger and my mouth, but my brain is all there," she told CTV Montreal.
She said she's worked hard to live as independently as possible, and lives in an apartment in the Lucie Bruneau Rehabilitation Centre -- an assisted-living facility. She works as an advocate for the disabled and gets around in a wheelchair.
"That's basically what people with disabilities do: find ways around inaccessibility and discrimination, and so on and so forth," she said. "That's what I've done all my life."
But recently, the muscles in her nose and throat have weakened, so a ventilator is now required to be plugged into her tracheostomy. As a result, Kennard has been living in the intensive care unit at the Montreal Chest Institute at the McGill University Health Centre.
The procedure means Kennard won't be able to move back to her apartment, because the staff at the assisted-living facility aren't qualified to perform the procedure.
"It says that a ventilator connected to a tracheostomy is considered an intrusive medical act," Kennard said.
But Dr. Sandra Dial from MUNHC says anyone can be trained to perform the procedure.
"Here at the MUNHC, we have a home ventilation program, and over the years we've taken care of lots of patients who are cared for at home by their families, including through tracheostomy tubes," Dial said.
But without family or the finances to hire private care, Kennard is now at the mercy of her friends.
Fellow disability advocate Florence Pardo said the community is going to fight to bring Kennard home.
"The whole idea about rehabilitation is to find solutions," she said. "The hospital is about curing, but the whole rehabilitation process is to live with what you have."
But the administration at the Lucie Bruneau Rehabilitation Centre said they have to follow the rules set by Quebec's Ministry of Social Services and union regulations.
"We need to respect the rules that protect the safety of our clients and protect our personnel," Lise Giroux said.