N.S. mom speaks out about challenges of getting financial aid for daughter's care

Nora Nunn-Murphy spends every day caring for her four-year-old daughter, Brenna, who was born four months premature and has cerebral palsy and vision impairment.

It's a full-time role that rarely allows for breaks and requires spending thousands upon thousands of dollars out of pocket for specialized equipment and rehabilitation programs. 

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

"Most of [Brenna's] teaching does come from me being at home with her," Nunn-Murphy said in a recent interview.

"Teaching her to crawl, teaching her to stand, teaching her to use all of her equipment that we fought really hard to get, teaching her to eat, teaching her all the things that come naturally to children without disabilities."

Brenna is funny and sassy and has a big smile. She loves Peppa Pig and reading books with her parents. 

'Even my best is getting less'

Although helping Brenna realize her full potential is Nunn-Murphy's main goal, the process is taking its toll.

"I feel like her doctor. I feel like her social worker, her psychologist … her physiotherapist, her occupational therapist," said Nunn-Murphy, who left her job to care for her daughter full time.

"I don't know how much longer I can give my best to her. Even my best is getting less and less."

In early 2021, Nunn-Murphy and her husband applied for Direct Family Support for Children (DFSC), which grants monthly funding through the provincial Department of Community Services' Disability Support Program.

DFSC's purpose, according to information on the department's website, is to "maximize family supports and community participation," and help keep children with disabilities at home, rather than transitioning to a special care facility.

Nunn-Murphy said Brenna's paperwork was submitted in person in Truro. Within 48 hours, the family received a phone call saying Brenna's application had been closed at intake because the family didn't qualify for the program. 

More than half of applications denied

According to documents CBC News received through an access to information request, 676 families in Nova Scotia have applied to the DFSC program since 2018. Of these families, 432 were deemed not eligible.

The documents show 85 families requested a review of their application, and 53 of these families who were previously denied were accepted into the program after their appeal. 

The Department of Community Services told CBC News it cannot speak to specific cases, however, it said families can be denied for three reasons: they don't meet the financial eligibility criteria, the child's disability wasn't covered in the program guidelines, or the family didn't submit all the required documentation in time.

In an email, department spokesperson Lisa Jarrett said "staff estimate that up to half of all intake packages that are sent to families are not returned, or only partial documentation is returned," and files are closed after several followup attempts.

Jarrett did not say why the cases that were approved after an appeal were initially rejected, or whether any changes are being considered to the application process to ensure more families are accepted the first time they apply.

Costs of living

Nunn-Murphy said her family was denied because of the program's financial eligibility requirements, which have not been updated online since July 2012. Contributions are on a sliding scale ranging from $100 to $800 monthly, depending on income and family size, according to information posted on the government's website.

"I think this comes down to people who are lower middle class," Nunn-Murphy said. "We have enough money to get by, but we don't have enough money to hire people to come in and help us when we need help."

One of the program's stated goals is to provide funding for respite services so family caregivers can take breaks.

Nunn-Murphy said she's lucky her family lives close by and can help with Brenna's care, but she rarely gets a break. 

"My husband and I really try to get some time away, but it's next to impossible," she said. "We haven't looked into babysitters just because financially, we can't pull it off right now. And that's not where our priorities are really lying."

Nunn-Murphy said a few months after their DFSC application was rejected, the family was buying Brenna an expensive piece of mobility equipment. In order to receive insurance coverage, they needed proof that Brenna had been rejected from the DFSC program, so Nunn-Murphy called back.

"We got sent around to a number of different people as I asked to get the information on Brenna's file. But Brenna's file was non-existent in their computer," Nunn-Murphy said. "There was nothing showing that Brenna and our family had ever applied for the program."

When she pressed for more information, Nunn-Murphy said she was told her daughter's application had been shredded.

"[This] left me in a very terrible spot, just not knowing if that was the truth," she said.

Department 'always looking at ways to improve'

The Department of Community Services declined to speak to CBC News specifically about the family's application or Brenna's file, but Jarrett said the department works to ensure the program is "accessible, flexible and responsive."

"The Disability Support Program is sensitive to the financial needs of families and is always looking at ways to improve our processes for families and applicants," Jarrett wrote Monday. 

"We cannot speak to specific cases, however we encourage the family to reach out to the department to see how we can further assist."

The email noted a new case management system was implemented last year "to support a centralized intake for multiple programs."

After being told her daughter's application had been shredded, Nunn-Murphy went to the ombudsman for the Department of Community Services. She said the ombudsman suggested the family reapply to the DFSC program. 

"There was an apology from the ombudsman, but … nothing has changed and there was no help," she said.

Nunn-Murphy said the family is in the process of gathering documentation and collecting letters from Brenna's doctors and care providers in hopes of getting approved.