Support for brain injuries takes shape, but geography leaving many without help

Leona Burkey is watching advocacy turn into action.

For years, the executive director of the Brain Injury Association of Nova Scotia and others worked to secure dedicated funding to help improve access to supports for a community the organization estimates could be as large as 100,000 people, which would be more than 10 per cent of people in the province.

A year ago, that funding arrived in the form of a four-year, $5-million commitment from the provincial and federal governments, the first significant funding in the province for brain injuries. The benefits of the money are beginning to materialize as they focus on several key goals, said Burkey.

"To really make any headway in supporting that large of a group you really need foundational pieces," she said.

Those pieces include working to set up community chapters around the province, offering an online resource database and opening the first drop-in centre of its kind in the province, located in Dartmouth.

The site, a partnership with Peter's Place, an organization focused on brain injury rehabilitation, includes a learning kitchen, computer lab and recreation space. It also includes a community rehab centre operated by Peter's Place staff.

Burkey said having somewhere people can go to talk to others in similar situations, or access support is critical for people and their families looking for help, particularly after they leave the hospital.

"There are still huge systemic problems and there's a broken continuum of care, but to be able to move away from advocating, advocating, advocating all the time and into the realm of doing, offering, connecting, it's a very, very good shift," she said.

But although they're finally seeing progress, Burkey said there remains much work to do, especially when it comes to service availability outside the Halifax area.

"Outside of Halifax, it's a wasteland," she said. "There is very, very little."

Burkey said the organization regularly fields calls from people struggling to find support and she's often forced to tell them there isn't much available where they live. That's what Leslee Muise-LeBlanc discovered when she was searching for resources for her son, Jaden Muise, following his car accident in 2017.

Muise-LeBlanc said rehabilitation care was very good when her son, now 20, was in a Halifax hospital following his accident, but reality quickly set in once they returned home to Yarmouth.

"It's almost like you're a fish out of water," she said. "There's very little to access and you kind of just feel like you're alone."

A combination of services accessed through private insurance and trips to Halifax has meant her son, who cannot work and has difficulty using the left side of his body, has continued to have some support. But Muise-LeBlanc said it's frustrating to know what her son is receiving isn't enough.

"We're happy, obviously, that we still have Jaden with us, but it's just difficult to see him struggle," she said.

Not wasting potential

Burkey said the hope is if initiatives and programs perform as expected, they'll be able to make the case to extend the funding agreement and broaden it, allowing them to explore issues such as housing and get support to more of the province.

Ultimately, they're trying to bring as many services as possible to a community that traditionally has been under supported, especially considering its size, said Burkey. Having help for people with acquired brain injuries is crucial because they're often young and proper support has been shown to improve outcomes, she said.

"People begin in one place and they end in another, and it's a lot better than when they started," said Burkey.

"If we can improve people's outcomes and do a little bit more about not wasting all that potential, you know, it's going to be a much better situation for thousands of people."