N.S. family relieved funding came through for daughter's care

When Nora Nunn-Murphy heard the news that her daughter, Brenna, had finally been accepted into the province's disability funding program for children, she felt like a weight had been lifted off her shoulders.

"It's actually quite incredible," Nunn-Murphy said. "I remember the day that we found out that we were accepted, and I think we were both just free of that burden."

Nunn-Murphy and her husband, Al Benoit, have been fighting for more than a year to get disability funding for their four-year-old daughter, Brenna. She has cerebral palsy and vision impairment and needs specialized rehabilitation programs and mobility equipment. 

In 2020, the family applied to Nova Scotia's Direct Family Support for Children program, which grants monthly funding through the provincial Department of Community Services' Disability Support Program. 

But they soon became one of the hundreds of families that have applied  — and been rejected — for the provincial grant intended to help families care for a child with a disability at home.

When the family contacted the department to question their rejection, they were told their daughter's application had been shredded. This led them to start a complaint process with the department's ombudsman. 

After a CBC News story was published in January of this year, Nunn-Murphy said things started to change. Brenna's application was accepted in March. 

"From there it went very quickly and we were given to a caseworker to work with," she said. "Once we met with our caseworker, the whole atmosphere and vibe of everything changed. She was very pleasant to work with, and it took a lot of stress off of us."

Once accepted into the program, the amount of money given to a family monthly is determined through an assessment by their assigned care co-ordinator. 

Nunn-Murphy said having the funding has made a huge difference for her family.

"We can get some equipment that she really needs and not have to worry about how long it would take us to save up, to be able to to purchase those major pieces of equipment that are so expensive," she said. 

Brenna has a loaner wheelchair and Benoit said they can now buy her her own. Respite care has also made a difference for the family, he said.

But Nunn-Murphy said she knows many parents of children with disabilities are still struggling without a break. 

"I realize there are a lot of parents out there right now who are probably still going through the same type of issues that we went through," she said. "And I hope that it can change for them."

Benoit said he heard back from the ombudsman by phone and was told the situation with Brenna's application should not have occurred. 

The ombudsman also told him it is not the first time he has heard of something like this going on. The family said they received many apologies, but still don't know for certain what happened to the first application.

Not the end 

Getting accepted into the program doesn't mark the end of the family's journey. 

Brenna isn't able to walk because of the way her feet curl inwards. Nunn-Murphy said her daughter is also having severe hip problems because she can't bear weight on her legs. 

After consulting with Brenna's team at the IWK children's hospital in Halifax and a rehabilitation centre in Toronto, the family determined there is one option that will get Brenna on her feet.

Their hope lies in a procedure called selective percutaneous myofascial lengthening surgery. It is a minimally invasive surgery that uses micro incisions to lengthen muscles and manage stiffness in children with cerebral palsy. 

The closest doctor who performs this procedure is in New Jersey. 

There is a similar procedure available at the IWK, but it is more invasive and has a longer recovery time.

The family is fundraising the $65,000 that it will take to get Brenna to New Jersey for the surgery and the associated rehabilitation. 

They have to have the full amount in hand before they are able to book the surgery, but the family hopes to book it for June. 

 A family friend started an online fundraiser three weeks ago, and it has raised more than $16,000 so far. 

"It's a humbling experience just to see all these names, all these amounts coming in to help," Benoit said. "It's really great, just for Brenna."