Nova Scotia family speaks out against province's disability program

A Halifax-area family is speaking out about the struggles they've experienced trying to get their son into a provincial disability funding program for children. 

Even though their son, Colton, has been living with a developmental disability his whole life, Julie Kuipery and Dennis Rego have been fighting for the past eight months to have him qualify for Nova Scotia's Direct Family Support for Children program. 

"Just like any parent, we want the best for our child and we want to give him the most opportunity that we can," Rego said. "And it's sad the hoops that you have to jump through in order to get the funding." 

Colton is an energetic three-and-a-half-year old with big eyes and an even bigger smile. He loves wearing rubber boots with crocodiles on them as he runs around the house and points at things out the window. 

When Colton was two, he was diagnosed with Dravet syndrome, a rare and severe form of epilepsy that affects only around 100 people in Canada. 

Dravet syndrome is often accompanied by intellectual developmental disabilities and autism spectrum disorders. This means Colton has frequent seizures, is non-verbal, and experiences many delays in his development. He expresses his amusement, interest, and disapproval with unique sounds. 

Kuipery and Rego first applied to the support program this March. Colton's development was so delayed he was unable to complete formal testing, so his parents submitted a letter from his psychologist. 

In August, they were told Colton would not qualify for the program, unless he were to undergo a psycho-educational assessment. This type of assessment is covered for school-aged children, but the test would cost the family upwards of $3,000 because Colton is not yet in school.

Kuipery and Rego didn't give up, and Rego reached out to local politicians about Colton's situation. After Colton's psychologist sent another letter and report reaffirming his needs, the family was told in October that Colton would be accepted into the program. 

They are now awaiting a home assessment by a caseworker to determine if they will receive funding, and how much. 

"It was a fight to try and get him approved by this program," Rego said. "And this is the stuff that we've heard from other families as well, that you get denied and then it's up to you to fight, to try and get [your child] in."

Rego believes if he wasn't educated, with the tools and confidence to advocate for his child, Colton's case would not have been reconsidered. 

Michelle Morgan-Coole, a disability lawyer in New Minas, said this type of situation is common in Nova Scotia.

"I know of several more families that have run into exactly the same situation," she said. "It all comes back to funding … I think they're just keeping people out and trying to keep the door closed as much as they can."