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 crocodileson 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 letterfrom 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."

Morgan-Coole said there should be a service to help families navigate the system. She said it is extremely complicated, and many get discouraged when they are told no right away.

"Many families have called concerning this program, and they've been told over the phone that the child wouldn't qualify, without [anyone] coming to the home and doing an actual assessment," she said.

In an emailedstatement, the Department of Community Services said it could not discuss Colton's specific case.

A spokesperson for the department said:"Direct Family Supports for Children is an open program, meaning that if a child/family meets the eligibility criteria they can access the program. Part of that criteria includes appropriate medical documentation from an approved clinician. A child does not need to be in the school system to access the program."

When asked how many children have been rejected from the program in recent years, they said that data is "not readily available."

Life with Colton

Kuipery, who is Colton's primary caregiver most days while Rego is at work, has to be on the lookout for Colton's seizures, which can happen at any time.

He experiences several types of seizures. Some are dramatic and some can barely be noticed, other than his eyes freezing to one side.

Kuipery always carries a small plastic case that holds Colton's syringes and Midazolam, an emergency medication that is sprayed into his nose to reduce the severity of his seizures.

"We have no warning when a seizure will happen, it could be in the middle of grocery shopping, it could be anywhere," Kuipery said.

It could also happen when Colton is sleeping, so his room is equipped with cameras and an alarm connected to a sensor in his bed.

Hidden costs

Colton's seizure monitor costs $1,000 US, and is just one of the hidden costs of having a child with severe epilepsy.

His parents say he will likely always need a stroller or mobility device, special food and diapers. There is also the cost of CBD, achemical component of the Cannabis sativa plant, used in his treatment.

Rego said there is extensive research on the positive impact of CBD on children with epilepsy. Dravet syndrome is resistant to most medication, but Colton has been responding remarkably well to CBD, his family said.

He used to have two seizures per hour, but since starting on CBD, he has approximately one seizure every 10-14 days. Kuipery said Colton used to be rushed to the hospital almost monthly, but has only been to emerge once in the year since he started CBD.

CBD is not covered by Nova Scotia pharmacare, so it costs the family $400 a month, even with the50 per cent discount given to pediatric patients by the manufacturer. Rego said Colton's dose is measured by weight, so the cost will only increase as he grows.

Kuipery said another expense the family cannot afford is respite care. She said she and her husband have had one evening alone together in the past three years.

Morgan-Coole, who has an adult child with autism, said family burnout is real for those caring for a disabled or developmentally delayed child. She said rates of family breakup are higher as well.

"It's overwhelming," she said. "Often one parent has to quit work to stay home with the child. Then, even when they're in school, that doesn't necessarily help because somebody needs to be on call. So it makes it really hard in the family, financially and emotionally."

Kuipery said that was reaffirmed when Colton was rejected from the program.

"It minimizes my efforts again. It reminds me how little I'm valued. For [the government] not to be willing to help us pay for the basics so we can keep [Colton] safe, is really hurtful," Kuipery said.

Kuipery and Rego hope their story can inspire other families to keep fighting for the care their child needs.

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