Nova Scotia family granted respite funding after 12-year fight with province

After 12 years of fighting, the Mason-Squires family from Middleton, N.S., has finally been granted some funding to help support their daughter.

Rowan Squires, who is 13, is autistic and requires 24/7 care. 

Elizabeth Mason-Squires, Rowan's mother, said her daughter has severe sensory-processing sensitivities and obsessive-compulsive disorder. She cannot go to school due to a lack of support, and needs help with all basic tasks including going to the bathroom, personal hygiene and eating.

Mason-Squires, who also provides full-time care for Rowan, said the family had been denied funding from the Direct Family Support for Children program — a provincial program that offers up to $800 per month to families that have a child with a disability — on four separate occasions. 

The day a previous CBC News story was published outlining the family's struggles, Mason-Squires said she received a call from the Department of Community Services granting them provisional admission into the program. Mason-Squires received the official letter in the mail about two months later in June. 

"I'm so relieved and grateful that we're finally getting the opportunity," said Mason-Squires. "I look forward to being able to have some rest … to be more productive in the world again, to take part in life and be able to maybe have a job. That would be great."

Despite the family's excitement, an exception had to be made for Rowan. Other families in similar situations could still be turned away.

To qualify for funding, a family must meet a financial threshold and the child must be diagnosed with a moderate-to-severe intellectual developmental disability, a significant physical disability, or both. 

The caveat is the eligibility policy measures intellectual developmental disability based on whether the child has an IQ below 70, a criterion they said Rowan does not meet. It is why Rowan was denied for so many years. 

Autism Nova Scotia had previously told CBC that using IQ as a way to measure disability is problematic, as there is not necessarily a correlation between someone's intelligence level and their ability to function and complete daily tasks. 

In April, community services said it was looking at ways to remove the IQ component of the policy. However, a spokesperson for the department told CBC last week that eligibility for the program remains under review. 

"We have been exploring ways to reduce the reliance on IQ to demonstrate that a child meets the intellectual disability required for the program," communications adviser Alyse Hand said in an email.

Hand would not comment specifically on Rowan's case, but said fewer than six exceptions have been made to the policy across the province within the last year.

She said 774 families were receiving funds for respite care as of the end of September. In 2023, the community services received 430 applications for the DFSC program. Of those, 315 were not approved.

She added that changes were made to the program last year to expand the number of eligible families. She said work is underway to expand the range of support available to families who do qualify. 

Family granted $165 per month 

The Mason-Squires family has been granted funding until December when the circumstances will be further reviewed, according to a letter from community services. The department is offering them $165 per month to help with respite care.

The assistance will allow Mason-Squires to hire a professional to come into the home for a couple hours per week. That will provide Mason-Squires and her husband a break.

"My husband and I maybe could just go for a walk … sit outside in the backyard and have a coffee or whatever. You know, just actually do something together," she said. 

Mason-Squires was told the department is also looking into offering some reimbursement for expenses like Rowan's formula and diapers, which cost the single-income family $1,500 per month.

While the extra money is welcome, what Mason-Squires really wants is for community services to remove the mention of IQ from the program altogether.

"The idea of an IQ factoring at all needs to be removed completely from all paperwork, all policies, everything, because it is absolutely irrelevant," said Mason-Squires. 

"I don't want to stop advocating. This is a great first step. It's taken way too long and it shouldn't have taken this long to get where we finally got."