'It’s like we’re trapped on an island': N.S. family calls for better access to urgent autism support

The difficulty of accessing support for autism A N.S. family is speaking out about their struggle to access emergency support for their son with autism.

Eight-year-old Khalil Powell has good moments and bad moments.

Diagnosed with autism at the age of four, his parents say he’s non-verbal and has an undiagnosed sensory progressing disorder.

“He's very smiley, he loves to be hugged,” says his mother, Tamara Tynes Powell.

But in the difficult moments, she says he can become aggressive.

“He wakes up screaming and crying and in torment, he sometimes hurts himself, he can be aggressive towards others,” she says.

“Even though he does have days where there's less screaming and hitting, there's never a day where there's ever none,” adds his father, Lester Powell.

It’s the reason Khalil’s room is sparse, the only furniture — his bed and a shelf.

“And at night,” says his mother. “We have to take out any of his larger toy items.”

The couple says his behavior became more erratic since the pandemic began and his school routine was interrupted.

At school, he receives services provided by the province. Being away from his regular routine during COVID-19 school shutdowns, made the eventual return to class more difficult.

“We had to agree with the school for him to attend only two days a week,” says Tamara. “Because we couldn't get his aggression under control.”

It's been that way since last fall. Lester has largely stayed home from work to care for their son when he’s not in school, as Tamara has been trying to get more supports through the province.

This spring, they say they took Khalil to the children’s emergency department at the IWK in crisis, but say he was only assessed and then sent home. They say they were told to access community mental health services in their area.

They reached out to the province’s Department of Community Services (DCS) for help through its family respite program months ago. But say they were discouraged from applying.

The Direct Family Support for Children program offers funding for respite services to give families a break from caregiving.

Tamara says their experience with DCS so far has left them at a loss.

“Our biggest worry, is not being able to care for our child,” she says. “And maybe having to look at placing him in an institution, and that really bothers me as a parent.”

As African Nova Scotians, Tamara says she has trouble trusting the system.

“And it's just like we're trapped on an island trying to save our son,” adds Lester. “All by ourselves.”

In a statement to CTV News, DCS says eligibility for the respite program depends on income, and a child's specific diagnosis.

"Autism may be considered as part of a dual diagnosis that includes either an intellectual or a physical disability. Children with a dual diagnosis that includes autism currently represent approximately 45 per cent of the Direct Family Support for Children program."

“We can say in this case that the department has reached out to this family to discuss what supports are available to them.”

The department also points to the additional $12 million the province is spending to extend and enhance early intervention services for children with autism spectrum disorder, announced in mid-April.

After months of trying, the family received details on how to apply for respite Friday, after they reached out both to CTV and their local MLA.

But they say they are speaking out to highlight the barriers that still exist in the process, with very little guidance for families on where to turn when faced with a crisis situation.

Tamara is also concerned that the application for respite requires a tax assessment from the previous year, which she says may not reflect a family’s current financial situation.

In their case, they were both working that year, before circumstances changed.

Autism Nova Scotia says a system change within government means generalists are answering the intake lines, which could be the reason the family was initially discouraged from applying for respite, something executive director Cynthia Carroll says shouldn’t have happened.

Carroll also has concerns about the current criteria for the program, which includes a diagnosis of intellectual disability, which the Powells have been so far unable to obtain for Khalil.

“There are outdated components in that policy that include IQ criteria,” says Carroll. “Which we know is a very outdated form of assessment.”

She says that’s among the reasons the organization is advocating for a provincial autism strategy — something identified as a need to the previous provincial government — to identify gaps in the system that may be affecting families.

“All families do qualify for an assessment and families need to understand that they can request that assessment,” she says.

The Powells say getting help for their family shouldn’t take so long, or be so difficult.

“We just want him to have some sort of normal life, for him to be happy,” says Tamara.