HALIFAX — Shannon Sweet lives in a Halifax nursing home, but she imagines a home of her own, with a kitchen set up for her wheelchair and visiting staff to assist her with some daily needs.
“I want to live anywhere but here,” said the 51-year-old, who has been in a long-term care facility in Halifax since 2015.
Advocates say Sweet is far from alone in that sentiment. They’re frustrated over delays in moving people under 65 with disabilities out of long-term care and into the community, as part of a wider five-year plan that was approved by a Nova Scotia human rights board of inquiry in 2023.
Sweet, who has spina bifida, said in a telephone interview Tuesday that nursing home life is noisy and lacks privacy. She's also frustrated by the routines of institutions, and the lack of potential volunteer roles to keep her occupied. She says she believes she could live in her own apartment but will "need help with transfers (from the bed to the wheelchair),” and require some nursing and housekeeping assistance.
A Jan. 15 update on the five-year plan from the province indicates that milestones toward providing supported housing to Sweet and hundreds of other Nova Scotians with disabilities are behind schedule.
About 460 people under 65 remain in nursing homes, a drop of just 14 from a year earlier. The update does not say whether the 14 have found homes in the communities, left on their own, or died.
The provincial plan or "remedy" had set a goal for this year of having 110 younger adults in long-term care moving into the community and receiving government services.
In a news release Monday, the Disability Rights Coalition of Nova Scotia reminded the Progressive Conservative government that the five-year plan has the force of law, as it's based on a Court of Appeal ruling in 2021 that found the province had committed "systemic discrimination" in its failure to provide support.
"Virtually no progress has been made in moving young adults out of long-term care ... due to a lack of supports for them to live in communities," the coalition said.
It also noted that the province is not on track to meet another goal of moving people from large institutions for people with disabilities to supported homes in the community. The target was to transfer 261 of the 870 people in these institutions by March 31, but as of Dec. 31 just 168 people were listed as having made the move.
Victoria Levack, a spokeswoman for the disabilities group, moved to her own "shared services" supported apartment from a long-term care facility three years ago, and she's angry the program has fallen behind.
"I'm furious .... These are legal obligations that the government has agreed to. They agreed and they are failing," said Levack, who has cerebral palsy and receives daily help from staff at her apartment.
In a letter attached to the Jan. 15 update, Maria Medioli, director of the province's disability support program, said recruiting staff for front-line support positions is "presenting the biggest barrier to compliance with timelines."
"Completing all required steps and processes mandated by legislation, collective agreements and policy takes considerable time," she wrote.
In an interview on Wednesday, Medioli said recently hired staff will, within weeks, be able to begin meeting with long-term care residents who may be eligible and interested in moving into the community. She said it remains unclear, until these assessments are carried out, how many of the 460 younger residents have a disability, as opposed to other reasons for being in nursing homes, such as early onset dementia.
Medioli also said the province has finished developing a system of individualized funding to make it possible for people to shift out of long-term care. "You could move somebody out tomorrow from long-term care. But if they don't have those supports in place, including finding accessible lodging arrangements, then it's not going to succeed," she said.
Erica Parrill, a spokeswoman for the Department of Social Development, said the province expects to see "continued movement on key measures" in its next report on the targets in May. "We are confident the province is on track to remedy the discrimination against persons with disabilities by the end of five years," she wrote in an emailed statement.
Vince Calderhead, a lawyer who worked on the original human rights case, said in an email that he's worried not all younger adults in long-term care facilities have been "fully and properly informed" they have the option to stay or to leave.
"The key is choice, real choice, for those who do want to move out," he said.
This report by The Canadian Press was first published Jan. 22, 2025.
Michael Tutton, The Canadian Press
