Sunshine Coast locals rally around Iacullo family

A nine-year-old boy who requires seven different types of medication twice a day while battling seizures and migraines has just 98 cents left in his NDIS account as his mum battles for more support.

Amy Iacullo and her 9-year-old son Romeo.

A Sunshine Coast mother-of-four has praised the local community after taking to TikTok to help raise awareness around the “missing links” in the National Disability Insurance Scheme.

Amy Iacullo’s son Romeo, now nine, has been a participant in the NDIS since he received a speech delay diagnosis when he was three, however Ms Iacullo said the quality of some services had deteriorated since the Covid-19 pandemic.

Ms Iacullo said the assessments carried out by third party local area co-ordinators to provide the NDIS with the funding applications had moved to far less personal meetings, mostly conducted over the phone without meeting participants such as Romeo.

“These people representing our family don’t really know our family, how can they take our information and help gets us what we need,” Ms Iacullo said.

“They haven’t even met us.”

Ms Iacullo said they currently have 98 cents in Romeo's NDIS fun.

So far this year Romeo has had four stays in the intensive care unit and currently requires seven different types of medication taken twice a day, the current balance of his NDIS fund is 98 cents as his parents await the outcome of the latest application.

As well as a severe Autism diagnosis, Romeo suffers from seizures and migraines that cause him to lose mobility in his legs.

Ms Iacullo said when she submitted assessments from medical professionals such as Romeo’s paediatrician and neurologist for an NDIS review, she was told by a local area co-ordinator the requests for a car seat and fold-out wheelchair would not be approved as the migraines were not considered a disability.

@amy.iacullo virtiginous migraines? epilepsy? surely someone knows what tests need to happen, i need to learn more. @Epilepsy QLD @Migraine Australia #asd#id#epilepsy#vertigo#mirgraine♬ original sound - A typical Mum ✌🏼

“We applied for a car seat for Romeo because he can’t actually hold himself up straight in the car when he is in one of these migraines, so I’ve been holding his head” Ms Iacullo said.

“We also applied for the wheelchair because Romeo is a human being and deserves as much access to the community as anybody else.”

Ms Iacullo said Romeo often needs support in the car during episodes.

Ms Iacullo said while she is extremely grateful and supportive of the NDIS there were missing links in the scheme allowing kids like Romeo to fall through the cracks without much-needed support and resources.

“There is so often a missing link between what the family is telling the local area co-ordinator and what information goes from them to the NDIS delegate,” she said.

@amy.iacullo Day four. Episodes? Seizures? what do you think? #fyp#epilepsy#autism#eeg#seizure♬ original sound - A typical Mum ✌🏼

A National Disability Insurance Agency spokesperson said the option to meet in-person with local area co-ordinators was still possible and had not been removed.

“The National Disability Insurance Agency’s (NDIA) priority remains ensuring participants and their families receive the disability related-supports they need,” they said.

“Local Area Co-ordinators are responsive to a participant’s needs and preferences in relation to the format of meetings, including in person at an office, a third-party location, a participant’s home, virtually or over the phone.”

Ms Iacullo said a GoFundMe set up by a family friend to raise $20,000 to buy a van suitable for a wheelchair and car seat has shown “our community has seen us as people when the NDIS hasn’t”.

Romeo’s journey is shared by Ms Iacullo on her Tik Tok page.