Autistic kids 'falling through the cracks' as many in N.S. denied financial aid based on IQ

Like many pre-teens, Rowan Squires loves princesses, drawing on her iPad and watching cartoons — but she also requires around-the-clock care in nearly all aspects of her life.

Rowan is autistic and has severe sensory issues, obsessive-compulsive disorder and the functional language skills of a toddler, said her mother and full-time caregiver Elizabeth Mason-Squires. 

"She has limited daily functional ability in this neurotypical environment that we live in, which inhibits that beautiful, special, wonderful, talented girl from being able to interact in the way other 12-year-olds do," Mason-Squires said at their home in Middleton, N.S.

Rowan can also become aggressive and cannot go to school due to lack of support.

She needs help with most day-to-day tasks, like eating and going to the bathroom, but yet, she and her parents don't qualify for funding through the province's Direct Family Support for Children (DFSC) program, which offers financial aid to families who have a child with a disability.

Eligible families can receive between $100 to $800 a month, depending on income and family size, to help with medication, respite, transportation and other disability-related expenses.

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

But according to the policy, to have an intellectual disability, the child must have an intelligence quotient (IQ) below 70 — a criterion Rowan doesn't meet.

Her family has been denied the funding four times, despite meeting all other requirements.

"You feel like you're drowning because you can't afford to do anything. You have the extra costs involved with diapers, food service, her service dog," said Mason-Squires, adding that she and her husband haven't been out on a date since Rowan was born.

"There's so many families that are not eligible for the program because of very discriminatory and exclusionary criteria." 

CBC News requested an interview with the Department of Community Services, but instead a spokesperson provided an emailed statement.

More than half of applicants denied

Christina Deveau said the department is looking at options to replace the IQ test as a way to measure intellectual disabilities.

She said the DFSC program changed last year to increase funding, create an inclusion benefit and to expand respite services.

"As we consider our future supports and services, we're looking at a collaborative approach for more complex cases that may be supported through multiple government departments and community-based organizations," Deveau wrote.

Between 2018 and 2022, more than half of the 676 families who applied for the DFSC program were denied, CBC News learned through an access to information request in January 2022.

Cynthia Carroll, executive director of Autism Nova Scotia, said too many families are "falling through the cracks" because the policy is "narrow focused." 

She said only 35 per cent of autistic people also have an intellectual disability, meaning most are ineligible for the program.

Carroll said autistic people often have high pattern-recognition rates and can decode information. This means they can perform well on these standardized IQ tests, but they may not be able to contextualize the information in day-to-day life.

She said basing the policy off these tests is problematic, and that it should instead be based on the daily needs of the individual and their family. 

Inspired by her daughter, Mason-Squires created Rowan's Room Developmental Society in 2016, which offers developmental, recreational, educational and respite support for kids with disabilities. 

However, Mason-Squires said the group had to scale back in 2022 due to a lack of government funding. It still offers support for families, but had to close its location in Cambridge, N.S.

Doug Ralph's 15-year-old stepdaughter Chloe Selig has autism and used to attend Rowan's Room until it closed.

She tried to go back to school, but it was too stressful for her, so Chloe's mother quit her job to become her full-time caregiver and teacher at home.

Like Rowan's case, Chloe's family has also been denied DFSC funding several times because she doesn't have an intellectual disability, despite doctors and therapists writing letters of support for their application. 

Ralph said they pay about $600 per month for Chloe's therapies and medications, but these interventions aren't enough. He said there are other resources that would "significantly improve our lives," but they're just out of reach.

"Kids with autism have so much potential. They are some of the brightest kids," he said. "They add so much to society and so many of them are not given the chance to thrive … it's crushing that we're just letting them sit at home and not giving them what we give every other kid." 

For Rowan, Mason-Squires estimates it would cost about $75,000 a year to get her daughter the one-on-one support she needs, including hiring speech pathologists, behaviour analysts, psychologists and respite workers.

But she said all she's asking for is a few hundred dollars a month of government support to fill in the gaps and to give her and Rowan's father a break once in a while.

After being denied for the fourth time, Mason-Squires had a meeting with officials from the Department of Community Services and the Department of Education in hopes of a resolution. 

She's now waiting to hear back to see if anything will be done for Rowan, but said she's "not holding her breath."

"It needs to be known that this is impeding on human rights. Now you're discriminating against a family because of an IQ situation, when we clearly need the help."