Vicky Levack will move to an apartment later this month after living in a nursing home for 10 years. Levack, 31, a writer and activist who has cerebral palsy, has been a strong advocate for the inclusion of people with disabilities.
Although Levack needs someone to provide 24/7 assistance, she is not unwell and has fought hard to convince the government she and many other young adults should be moved out of institutions.
“It’s basically like a tiny hospital,” Levack said about Arborstone Enhanced Care. “I didn’t fit the rules and I won’t be going back to visit. Moving to an apartment on the peninsula means my door won’t be locked at 8pm. I can go to bed when I want and eat what I want. If I want to have a boyfriend or get a job, that will be my choice. And the sidewalks are so much better. I will be able to get out more instead of having to book the Access-A-Bus a week in advance.”
While her move will be a life-changing event, this definitely is not just about Levack. It’s also an important first for Nova Scotia.
Levack and three other adults with disabilities will live in two retrofitted apartments where a team of workers or attendants will be available 24/7. This shared services model is a pilot project that, if successful, will be replicated to assist other people with disabilities who want to live in a neighbourhood, but require assistance as well as housing.
“I do sort of have to praise the government,” Levack said. “Both the Department of Community Services and the Department of Health came together to contribute funds and this shows what can happen when departments work together.”
While the bill for Levack’s rent and her care will be covered by the province, the attendants will be employees of an established non-profit group called Independent Living Nova Scotia (ILNS). That group’s service provider and its executive director, Carrie Ernst, has worked tirelessly since 2018 to make this project a reality.
“If there was a roadblock, we hit it,” Ernst said. “For me, this has been a labour of love and government has come to the table from the beginning, including financing the research we did on similar shared-service models in other provinces. But it has been anything but easy.”
For example, ILNS was unable to find an accessible and affordable building to buy or rent in Halifax. In the end, the parents of Jen Powley, a well-known disability rights activist, lawyer, and author, stepped up and generously purchased a second condo unit in the building where she has been living for several years with an attendant paid by her family.
Ernst said a presentation Powley gave to a group at Dalhousie University was the driving force behind the whole four-year journey. Powley estimated it had cost her parents close to a million dollars to provide 24/7 care throughout her life. She has dedicated much of herself working to find a model to help people without money. Levack will move into the second bedroom in Powley’s unit.
ILNS intends to eventually buy back the second unit from the Powleys. The province paid $100,000 for renovations. The annual cost of staffing and maintaining a home for four people who would otherwise be institutionalized remains a floating target, Ernst said.
“In the spring of 2019 we presented a funding proposal to the province,” Ernst said. “We wanted to be able to say to government that in the end, it’s cheaper for you to have folks living on their own than it is having them either waiting in a hospital bed for a room in long-term care or in long-term care. That was the initial conversation. But in the end, it wasn’t about what the cost was but about the dignity of having the choice to live in community and have your own home.”
According to Ernst, the people in government were supportive but needed to rewrite a couple of different policies so that funding from the Department of Community Services and the Department of Health and Wellness could be combined to pay for the 24/7 shared services model.
Ernst said that the last provincial budget set a goal of moving 200 people out of institutions over the next two years. If these first four people can live outside a medicalized environment with the help of a shared team, Ernst said she is hopeful this could be a pathway for others.
But don’t expect Levack to stop talking about this issue.
“The four of us are the first in the province to do this,” Levack said. “But obviously I will fight like hell to get it expanded because this needs to be available for more people. Right now, there are between 200-300 people in long-term care that are under the age of 65 who don’t need to be there, but who do need physical assistance.”
This story is both inspiring and distressing. Inspiring because it’s actually happening, distressing because it too so long and required such effort, including purchase of the condos by private individuals. I hope the next 196 people have an easier path, thanks to the success of Vicki, Jen, and their supporters.
Thank you to Jennifer Henderson for this column on severely disabled living in the community. Jen Powley, her parents and the group No More Warehousing played a role in getting this pilot program going. I’m grateful to them all.