Jen’s choice is no choice at all; why not?

Jen Powley is smart. She has four degrees: a BA in Social Sciences (with Distinction) from King’s University College in Edmonton in 2000, a one-year post-baccalaureate Bachelor of Journalism from the University of King’s College in Halifax in 2001, a Master of Planning degree from Dalhousie in 2008 and a Master of Fine Arts in Creative Nonfiction, also from Halifax King’s, in 2015.

She boasts an eclectic CV and a significant record of accomplishment. She’s worked as the provincial coordinator for the Nova Scotia League for Equal Opportunities, a consultant and principal investigator on various accessibility issues, and served as the Sustainable Transportation Coordinator and, later, the Our HRM Coordinator for the Ecology Action Centre.

She wrote a book called Just Jen, a memoir about thriving through multiple sclerosis, which won the 2017 Margaret and John Savage Award as the year’s best first book of nonfiction.

She’s currently the president of the Rainbow Refugees Association of Nova Scotia, a volunteer group that sponsors LGBTQ refugees. These days, they’re sponsoring another family from Guatemala. “I brought them hot chocolate,” she tells me. “They looked cold.”

She’s also on the board of another refugee support group, Open Harbour, which has sponsored three families, and on the board of the JRG Society for the Arts, which supports artists with disabilities. She’s a member of the city’s Building Advisory Committee as well as several other do-good/do-right organizations ranging from the Pride Accessibility Committee to Independence Now Nova Scotia.

Despite all she’s already done for our city and province, and despite the fact she’s just 41 and has more to offer, Jen Powley now faces a Hobson’s choice: she can go into a nursing home to be warehoused and “removed from society” for the rest of her life, or she can opt for something called self-managed attendant care, a provincial program that provides those with disabilities who are able and willing to manage their own payroll and business bureaucracy six to seven hours of attendant care a day. Jen needs assistance nearly 24 hours every day. Another program called flex care might add a few more hours on top of that, she says, but it has a long waiting list.

Could she stretch those hours further, I wonder, by paying her assistants less per hour?

“I do have ethics,” she snaps back, then adds with her usual meaningful smile: “I’m not sure our premier does.”

But even if she could get all the care currently available, even if she found ways to squeeze out a few more hours here or there, the reality, explains her partner, Tom, is that “the amount of care the government offers is insufficient for Jen’s needs.”

So are all the other options for someone like Jen, who is still young, engaged with life, and far from ready to go gently into that good night.

Sadly, the reality is that Jen Powley is far from the only one confronting this non-choice choice.

***

Consider Vicky Levack. She’ll be 28 next month. She’s been living at Arborstone Enhanced Care, a Shannex nursing home on the Purcell’s Cove Road since she was 21. She has what she calls the “trifecta”: physical and intellectual disabilities, as well as mental illnesses.

Although she admits she made her own choice to go into long-term care — “I wanted to live on my own” — she says her life is not easy. At one point, over-crowding on the dementia wing meant some dementia patients ended up on her floor. “It didn’t go well.” She says she was sexually attacked three times, including once in the dining room.

She was eventually moved to another section — “the young adult floor, which actually means people from 18–64” — and feels safer, but the reality is there is little for her to do there either. “I have nothing in common with someone who’s 60,” she tells me. “They say there are lots of activities, but that’s not the case. There’s no cruise ship director here. You’re just stuck in here with nothing to do.”

There are also, she adds, “zero mental health supports” and the staff social worker is “buried in paperwork.”

The entire system, she suggests as one who has been there, done that, “needs to be overhauled.” She’s not optimistic. “The government’s not willing to do anything because, 1) it would cost a crapload of money, and 2) no one even knows where to start.”

***

And when you’re considering the lack of programs for those with disabilities, consider this too. A human rights commission hearing, which wrapped up in Halifax last week, highlighted the callous ways in which we treat our most vulnerable neighbours.

Two Nova Scotians with intellectual disabilities complained in 2014 that the province’s Department of Community Services had violated their human rights by forcing them to live in a locked-door psychiatric ward for more than a decade after they were medically discharged from the healthcare system.

Although the Supreme Court of Canada ruled in 2012 that a British Columbia resident had the right to special accommodation to access public education, a lawyer for the Nova Scotia government still argued during the hearings that housing is “not a right guaranteed” by the Nova Scotia government.

Lawyer Vince Calderhead, who represented the complainants, countered by citing sections of our own human rights act that explicitly prohibit discrimination in the provision of services on the basis of physical or mental disability.

Keeping people trapped in facilities far from their families where they can rarely venture out and have very little control over their own lives, he said, smacked of the “last vestiges of the… county asylum,” those other-century warehouses for the poor and the other.

Calderhead insisted his clients could have — and should have — been allowed to live in “small options” homes in which three or four residents live together in the community with appropriate support for their day-to-day needs.

Their human rights complaint, he added, is “about holding governments accountable for their actions and their inactions. It’s about accountability.”

As for the province, it says it plans to add eight new small options homes to the current 222 over the next two years. It’s hardly the stuff of bragging rights.  The fact is there are more than 500 people already in the queue, waiting for some form of support from the Department of Community Services, and more than a thousand more waiting for a transfer to a different housing option or location.

***

Jen Powley was diagnosed with multiple sclerosis when she was just 15. By the time she arrived in Halifax from Alberta to begin her journalism studies in August 1999, she got around mostly in a wheelchair. In 2013, she had to give up her job with the Ecology Action Centre — leading a consortium of 54 community organizations working to create more livable communities and protect the municipality’s natural resources — because her voice had become too weak to carry in meetings. But that didn’t stop her. Nothing did. To write her book, she spent three hours a day dictating, sentence by sentence, sometimes word by word, to an assistant who would then read it back to her to make sure there were no mistakes. She is now officially blind, has lost the use of her arms and legs and needs the help of an electric wheelchair to get around, the help of an attendant to deal with life’s basics.

But she hasn’t/won’t give up. She still hasn’t lost her mental capacity — or her sense of humour. “My mental faculties are sharper than yours,” she chides me at one point in our conversation. “And you can print that.”

I’ve known Jen since she arrived at the J-School as a student in 2000. At one point, she worked briefly as our department secretary. Later, I got to watch as she dazzled me, as well as the rest of our faculty, mentors and her fellow students in the MFA program with her wit, wisdom, and talent.

After she was forced to abandon her job with the Ecology Action Centre, Jen and her mother, Barb Morris, put a down payment on a condo in south-end Halifax. “It’s been great,” Jen says, but the costs of living on her own have been staggering.

Her parents have paid out $565,000 over the last five years for assistants and living expenses, plus another $120,000 to cover the cost of housing. And that doesn’t include the electric wheelchair she needs to get around, nor her wheelchair van, which cost another $65,000.

She’s survived so far,  she says, thanks to her family’s financial support and sacrifice — they’ve sold off family property in Alberta; her father, who also has MS, had to put off his own retirement — along with an $800 a month Canada Pension. She doesn’t qualify for social assistance.

“Nothing else?” I ask. “No other sources of income?”

“Would you like to buy a copy of my book?” she replies deadpan. “Books make great gifts, you know.” They do. Jen’s in particular.

The problem now is that her mother has finally run out of land to sell. “The land,” Barb Morris explains, “was purchased with my late husband who passed away 15 years ago.” (Jen’s parents divorced in 1985.) That land, she says, “was our legacy, our life’s work.” Although she knows her husband “would have wanted what was best for Jen,” she says that now, “I mostly feel guilt, shame, and despair that I am no longer able to support her fully.”

Jen herself is running out of options. A crunch will come at the end of December.

Since this summer, she and a group of supporters have been engaged in an increasingly desperate search for alternatives, including exploring what little the province has on option as well as private possibilities.

Last month, they looked at a large house in north-end Halifax that was advertised as accessible. The theory was they could buy it and adapt it as a home for Jen and three or four others — a kind of informal small options home. They could then pool their funded-care hours to cobble together a livable situation for all of them.

But — not as much a surprise as you might expect, or hope — the house turned out to be something less than advertised. Ironically, some renovations, including to the main washroom, had actually made the space less, rather than more accessible. Doors to most of the bedrooms were also too narrow for wheelchairs. And the elevator, which had been installed but not serviced, was blocked off.

Her advisor at Independent Living Nova Scotia, an organization that supports those with disabilities “make informed choices about how they want to live their lives” suggested there were enough problems with the house that it “would be easier just to start over.”

The problem is that she’s running out of time to start over.

“The government,” Barb Morris tells me:

“…needs to provide and facilitate appropriate housing options for people with severe physical disabilities. Long-term care warehousing and hospital beds do not serve the younger adult with chronic illness. Financial assistance is a critical factor, but is not the only piece. It appears there are often roadblocks in the form of government policies and regulations and wait lists years-long to access small-group settings that could enable a more productive and satisfying life. Tax-breaks are extremely limited as well.”

Jen, still/always the activist, has decided it is time the public understands the issue. “I don’t think the public knows there aren’t options out there. I think they should know that. And then maybe they can shame our government into acting. Do you think they can be shamed?”

It’s a question worth asking.

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