The NS family received funding for her daughter’s care

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

“It’s actually pretty amazing,” Nunn-Murphy said. “I remember the day we found out we were accepted, and I think we were both free of that burden.”

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

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

But they soon became one of hundreds of families who applied for – and were turned down – the provincial grant to help families care for a disabled child at home.

When the family contacted the department to challenge their denial, they were told their daughter’s application had been shredded. This led them to initiate a complaint process with the department’s ombudsman.

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

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

Once accepted into the program, the amount of money given to a family each month is determined by an assessment by their assigned Care Coordinator.

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

“We can get the equipment she really needs and not have to worry about how much time it would take us to save up, to be able to buy this big equipment that is so expensive,” she said.

Brenna has a loaner wheelchair and Benoit said they can buy hers now. 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 non-stop.

“I realize there are a lot of parents right now who are probably still going through the same kind of issues that we had,” she said. “And hopefully that can change for them.”

Benoit said he got a response by phone from the ombudsman and was told that the situation with Brenna’s request should not have happened.

The ombudsman also told him that it was not the first time he had heard of something like this. The family said they received numerous apologies, but still do not know for sure what happened to the first request.

not the end

Being accepted into the program does not mark the end of the family journey.

Brenna can’t walk because of the way her feet curve inward. Nunn-Murphy said her daughter also had serious hip problems because she couldn’t bear weight on her legs.

After consulting Brenna’s team at the IWK Children’s Hospital in Halifax and a rehabilitation center in Toronto, the family determined there was an option that would allow Brenna to get back 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 nearest doctor who performs this procedure is in New Jersey.

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

The family raises the $65,000 needed to bring Brenna to New Jersey for the surgery and associated rehabilitation.

They need to have the full amount on hand before they can book the surgery, but the family are hoping to book it for June.

A family friend started an online fundraiser three weeks ago, and it has already raised over $16,000.

“It’s a lesson in humility to see all these names, all these amounts come to the aid,” said Benoit. “That’s really awesome, just for Brenna.”