A woman with disabilities blames red tape for taking away her home and her dignity.
Deborah Kennard is currently living in the Intensive Care Unit of the Montreal Chest Institute.
Born with spinal muscular atrophy she was never supposed to make it to six years old, let alone 60.
With just a few muscles under her conscious control she made a life for herself, able to get around in a wheelchair, work as an advocate for the disabled, and live in an apartment.
"I can only move my thumb, index finger and my mouth, but my brain is all there," said Kennard.
The muscles in her nose and throat have weakened, so now her ventilator is plugged into her neck through a tracheostomy -- a permanent surgical hole in her neck.
Kennard said after spending time at the Montreal Chest Institute she is well enough to move back to her assisted-living apartment at the Lucie Bruneau rehabilitation centre, but because she requires a tracheostomy she cannot.
The administration at Lucie Bruneau said their staff are not qualified to care for someone with that type of ventilator.
"It says connecting a ventilator to a tracheostomy is considered an intrusive medical act and only RNs (registered nurses) or respiratory therapists can do that and they need to be on the premises 24 hours a day," said Kennard.
Respirologist Dr. Sandra Dial said it's possible to train anyone to do the procedure.
"Here at the MUHC 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," said Dr. Dial.
Without family or finances to hire private care, Kennard is now at the mercy of her friends.
"That's basically what people with disabilities do: find ways around inaccessibility and discrimination and so on and so forth. That's what I've done all my life," said Kennard.
Fellow disability advocate Florence Pardo says the community is going to fight for Kennard to return home.
"The whole idea of rehabilitation is to find solutions. The hospital is about curing, but the whole rehab process is to live with what you have and to see how you can work things out," said Pardo.
Lise Giroux of the Lucie Bruneau centre said she is bound by rules set down by the Ministry of Social Services.
"We need to always respect the rules to assure the safety of our clients that live here, and to ensure that our staff are protected by the regulations concerning their order and association," said Giroux.
Kennard said those rules need to be changed, because those rules are keeping in the ICU and away from the life she's worked her life to build.
