Eli and Ezrah Margot: Coolum Beach boys can’t get disability funding

A Coolum Beach family ineligible for NDIS funding can only watch on as their two non-verbal sons lose the ability to walk without a diagnosis in sight. Read their story.

A Coolum Beach family is without disability support funding for their two non-verbal sons who have lost the ability to walk as a diagnosis remains a mystery.

Brandon and Jessica Margot have watched as their two sons, nine-year-old Eli and eight-year-old Ezrah, progressively lose their ability to walk without a firm diagnosis in sight.

They have been to countless doctors in the last three years to no avail and due to their citizenship they are not eligible for the National Disability Insurance Scheme or carer’s payments due to the family originating from New Zealand.

Mr Margot said their move from Auckland to Australia in 2014 was meant to be a positive change in their lives but the last several years they’d been at a loss as Eli and Ezrah deteriorated.

The parents noticed Eli and his younger brother Ezrah were unable to speak and form words in kindy but were told by paediatricians and audiologists they would catch up.

Eli was eventually diagnosed with a severe hearing loss and soon after so was his young brother Ezrah, with the boys unable to form conversations before eventually losing their ability to walk.

“Over the period of lockdown things went downhill for them,” Mr Margot said.

“Ezrah started using a wheelchair at school as standing up was too taxing then the same happened with Eli.”

Mr Margot said it was hard for both parents to hold down full time work as the boys required around the clock care.

He said it was “heart wrenching” to see both boys fall behind in school due to their loss of movement.

“In prep kids used to write down who their best friends there were and Eli would get the most out of anyone,” he said.

“But now they’re not being invited to birthday parties … it’s been a challenge for them to socialise and make a circle of friends.

“The developmental gap has widened as they get older.”

To access support under the NDIS, a person must be either an Australian Citizen, the holder of a permanent visa or the holder of a Special Category Visa for New Zealanders who arrived in Australia before 2001.

In all cases, a person must meet the residency, age and disability or early intervention access requirements in order to access individually funded supports through the NDIS.

A Department of Social Services spokeswoman said residency requirements ensure the NDIS is targeted at people with a disability who will be living in Australia permanently.

“The Disability Gateway is a free service available for all people with disability, including those who are NDIS participants.

“People with a disability, their families and carers can contact the Disability Gateway for help in connecting to programs and services available around Australia, including rights and legal, health and wellbeing information and supports.”

The Coolum Beach family have set up a GoFundMe to help raise money to assist with the boys, you can donate here.