Belmont family feels ‘exhausted’ amid concerns about NDIS therapy support for child

A Belmont family feels they have to choose between cutting therapy hours for their five-year-old son who had the right side of his brain disconnected from the left, or fighting for more NDIS funding.

Malu Hunt (centre) with mum Erin and his brothers Harlan and Jarvie. Picture: Alan Barber

An “exhausted” Belmont mum says the National Disability Insurance Agency has slashed vital support for her five-year-old son who has a rare type of epilepsy.

Malu Hunt was diagnosed with infantile spasms after his first birthday.

He then underwent a hemispherotomy, meaning the right half of his brain was disconnected from the left.

Mum Erin Hunt said this stopped his seizures but the consequences were left side hemiplegia, meaning he could not use his left hand.

He had to learn to walk, sit and eat with weakness in his muscles on the left side.

She said he could not see out of the left side of both his eyes, his depth perception was poor and he has an intellectual and language delay.

“He has physio, occupational therapy and speech therapy and we have had to cut back on all of those,” she said.

“The National Disability Insurance Scheme (NDIS) has funded all our support up until the end of last year, when his new plan in December came back with half the amount the therapy budget in it that he previously had.

“When we questioned it we were told it was no longer effective or beneficial due to his age – he had just turned five.

Malu Hunt. Picture: Alan Barber

“It makes no sense to us as disabilities don’t change at all overnight.”

Ms Hunt said she lodged an appeal and recently had a plan review, which saw a slight increase in funding this week, but not enough to be beneficial.

“They approved a stroller to use on longer walks but wouldn’t approve adaptive footwear and adaptive clothing,” she said.

“Our plan has been renewed so we have money to spend now but they haven’t increased the budget so it won’t get us through a whole year of therapy.

“He is also starting school next year so there are a lot of supports that need to be put into place with that as well.”

A National Disability Insurance Agency spokesman said the agency’s priority remained ensuring every participant, including Malu, received the disability-related supports they needed.

“Earlier this week the agency completed a new plan for Malu – which represents an increased level of funding and support – following the family’s request for a review,” the spokesman said.

“The agency will work with Malu’s family to implement his new plan and ensure he is getting the most out of his supports.”

It’s understood the new plan includes funding for assistive technology, from which the family could purchase ankle foot orthotics.

Ms Hunt said the family had to choose if they would keep fighting for more funding or reduce Malu’s therapy hours, with the worry his progress may decline.

“We have to make these decisions, it’s exhausting and draining, it’s a tough position to be in,” she said.

Originally published as Belmont family feels ‘exhausted’ amid concerns about NDIS therapy support for child