Brain-injured face long waits for help

Canadians with brain injuries face shortages of programs, lengthy waits or no programs at all in most of the country, advocates say.

'It seems like I'm on a waiting list for everything,' car-crash survivor says

After rebuilding his life following a severe brain injury Jason Gaudet now longs for a job and his own home — if only there were a place he could go.

Gaudet, 28, a powerfully built former infantryman, has progressed in the two years since the car crash that left him in a coma, through physical rehabilitation, to the point where his greatest hurdle is now short-term memory lapses.

Living with his parents in Kingston, N.S., he's been on a waiting list since February to get into the Flowercart, a vocational centre 30 minutes away that assists adults with mental disabilities or brain injuries.

"They help people like me get back into the workforce. I want to live on my own someday and I want to be independent," said Gaudet.

"It seems like I'm on a waiting list for everything, pretty much."

He turns to his mother, Holly Hearn, on the day before Mother's Day, wrapping his powerful arms around her small frame.

"I just want to say thank you," he said. They hug and shed a tear together, as he acknowledges the support she has provided in his times of frustration.

Hearn — who works long shifts as a licensed practical nurse — said parents of brain-injured adults are gradually becoming better organized as they seek independence for themselves and their children.

"My husband and I have done everything we can do on our end. We need more professional people. People who know how to deal with Jason at this stage of Jason's life," she said.

"He needs to have the structure and the monitoring that we can no longer give him. He's grown larger than us."

Waiting lists

Shortages of programs, lengthy waiting lists or simply no programs at all for those with acquired brain injuries are the norm in most areas of the country, according to Shirley Johnson, president of the Brain Injury Association of Canada.

"In most provinces there are virtually no work-related programs," she said from her home in Victoria. "It's important for everyone to have a sense of personal value, for people to feel they're contributing something."

Adults who suffer brain injuries often find that friends and peers have disappeared, leaving them reliant on parents and siblings to help them rebuild the parts of the brain that provide memory and organization.

"Years ago, people wouldn't have survived these injuries. The medical system has progressed to the point where they can save these people's lives. But once they're released from acute care there aren't sufficient services," said Johnson.

Leo Glavine, the Liberal member of the Nova Scotia legislature for the Annapolis Valley district where Gaudet lives, said he's had three adults with brain injuries come to his office in recent months, asking if he could help them enter adult workshops or other programs.

When he brought the issue up before a legislature committee last week, he was told by Judith Ferguson, the deputy minister of community services, that there are 240 adults with disabilities waiting to get into centres like the Flowercart.

Ferguson said the province is having discussions with the centres, but there's no guarantee of added funding.

More staff needed

Roger Tatlock, executive director of the Flowercart, said he needs more staff to take on additional clients.

"The funding is such that you will serve a limited number of younger people. When you have two staff people you can stretch that out somewhat but there has to be a cap in there somewhere," he said.

Younger people also lack programs, said Jeannette Holman-Price of St. John's, N.L. Her son, Peter Luke, 14, suffered a brain injury four years ago when he was struck by a truck.

"When it comes to specialized care for recovery and retraining from brain injury, there's nothing available — nothing at all," she said.

Holman-Price said she needs a program to work on her son's memory, time awareness and organization.

"As parents it's impossible to find the 10 or 15 hours a week we need to train his memory and organization," she said. "We don't have the resources or the education we need to do this."