Halifax author with multiple sclerosis at a crossroads without access to affordable medical care
Jennifer Powley hasn’t cost taxpayers a dime.
In fact, she’s a big contributor to her community. Powley has put her education — four university degrees — to good use, co-ordinating care for other disabled Nova Scotians, heading a group that sponsors LGBTQ refugees and volunteering to advise health-care students. Her recent memoir also won a literary award.
But, stricken by debilitating multiple scleroris since she was 15, Powley is now at a crossroads.
She needs the kind of help her family can no longer afford and the province of Nova Scotia does not provide.
“Right now, I’m facing going into a nursing home,” she says.
Powley’s speech is audible but can only be understood with help from her partner, Tom Elliott, who repeats each sentence.
A nursing home is a poor fit for a 41-year-old woman, whose sharp intellect has not been affected by multiple sclerosis.
As a quadriplegic, she needs around-the-clock care. Someone is required to frequently adjust her position to ease her pain and give her a sip of water if she coughs or chokes.
However, Powley’s other option, a government program, only provides coverage for seven hours a day.
Powley feels like she’s falling through Canada’s social safety net.
“I’m glad we’re not on a tightrope,” she says. “It hurts to hit the ground.”
Her parents have been paying $10,000 a month for her home care. More measures, like re-mortgaging houses, are still possible.
But, her mother, Barb Morris, hopes for a government-funded arrangement where Powley could live with others and receive the care she needs.
“Having options like a small group home, or three- or four-bedroom apartment condo unit, where some of those expenses could be shared,” Morris says.
Jennifer’s partner struggles to find the words when asked how much hope he has for the future.
“I don’t know,” he says. “Hope is hard.”
For the moment, Powley insists her state of mind is still “good, if I don’t think about my situation.”
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