Brain injury group calls for better accommodation for patients

People with brain injuries can wait years — even decades — for appropriate accommodations, and that can mean financial ruin and breakdown for their families, according to one not-for-profit organization.

1.5 million Canadians suffering from acquired brain injury

Shawn Hill has come a long way since suffering a brain injury, but still requires a significant amount of care. (Trevor Pritchard/CBC)

People with brain injuries can wait years — even decades — for appropriate accommodation, and that can mean financial ruin and breakdown for their families, according to one advocacy group.

Shawn Hill has been at the Ottawa Hospital for more than a year after suffering a brain injury in August 2018. Most recently, he's been sharing a room with three seniors on a secure ward at the General campus, but his family feels he's suffering without proper treatment

They're not alone.

"[A specialized facility is] not like a hotel where someone checks in for a few days. You know, someone like Shawn, who is 44, could live there for another three, four, five decades. So, there's not really a turnover," said Michelle McDonald, Brain Injury Canada's executive director.

Michelle McDonald, executive director of Brain Injury Canada, says more needs to be done to help patients with brain injuries and their families. (Andrew Foote/CBC)

That lack of turnover can be problematic when it comes to finding spaces and funding for the 1.5 million Canadians with an acquired brain injury — and that number doesn't include those who have suffered concussion.

"It's more common than breast cancer, AIDS, spinal cord injury, combined," she told CBC Radio's Ottawa Morning.

She said specialized services are needed to support those with brain injuries, but delays in accessing that care isn't unique to Ottawa, or even Ontario — it's happening across Canada.

Added stress

McDonald points to the fact there are 20-year-olds sharing facilities with seniors with Alzheimer's disease and other forms of dementia.

"While their basic needs and their medical needs may be being taken care of, their need for socialization, engagement and fulfilment are not," she said.

McDonald said a collaborative approach is needed, with all levels of government involved to develop a strategy.

Caring for those patients at home isn't practical either, she said, because people with brain injuries are more likely to have mental health issues including depression, anxiety, addictions and suicidal behaviour.

Shawn Hill and his wife, Melissa Acheson, pose for a photo with their son Levi inside Hill's room at the Ottawa Hospital's General campus on Oct. 3, 2019. He's been receiving acute care since suffering a brain injury in August 2018. (Trevor Pritchard/CBC)

"It often ends in family breakdown and financial ruin," she said. "They have to leave their jobs to be able to take care of their loved one."

While Hill's family has put his name on wait-lists for long-term care across the province, McDonald said that risks isolating him further because he'd be away from family and friends. It would also create stress for his wife and son, who would have to travel to visit him.

"It's not a great system, but you know the need is too great on the current system, so that's their option for now."

With files from CBC Radio's Ottawa Morning