TWO Fremantle families say arbitrary cuts and delays in their National Disability Insurance Scheme funding have pitched them into a bureaucratic nightmare.

The NDIS has been increasingly criticised as unfair following the introduction in 2020 of independent assessments; the Morrison government said it was to make it fairer, though many disability advocates feared it was simply cost-cutting and more red tape.

Grandparents Avril and Earl Manning care for eight-year-old Nathaniel and 10-year-old Christian who have complex needs including PTSD and foetal alcohol syndrome.

The Mannings were initially fans of the NDIS but say they noticed its service started declining in 2019 after the government’s re-election: “It’s gone belly-up under ScoMo,” Ms Manning said.

Then their plan was changed without consultation. 

Ms Manning said the National Disability Insurance Authority, which oversees the scheme, had “tunnel vision” when the family asked for its case to be re-examined.

“They had an ‘open/close case’ of not wanting to take on board the children’s needs and disabilities,” she said.

“It’s criminal what they’re doing, and it is discrimination what they are doing to carers and what they’re doing to families.”

Ms Manning said the NDIA’s Complex Support Team appeared not to have received appropriate training, while the authority dismissed anything left out of their plan as “parental responsibility”.

She said the years fighting the system could have been time better spent with the boys, who’d subsequently started experiencing anxiety when they should have been gaining their independence.

It also took a toll on the couple’s own health; Ms Manning believes the stress contributed to her husband suffering an aneurism last year, while she has her own health problems complicated by insomnia.

Stress

She said some services such as Im Online in O’Connor and the Northern Territory-based Complex Support Branch had helped the family cope, while NDIA assistant director Delight Smallridge had also been helpful. 

But changing a plan means a time-consuming trip to the Administrative Appeals Tribunal, which Ms Manning says deters many carers from even trying.

She said it was designed to “burn you out” before an outcome was reached.

Belinda Roberts has an autistic eight-year-old and after changes to her plan did appeal to the AAT, but her experience hasn’t  been encouraging – she’s up to her fourth trip.

When her daughter’s plan expired in March 2021 she was given a new one which included changes she didn’t request and had none that she’d sought.

Following a couple of appeals, she got three adapted plans within 12 months, but she says they all contained mistakes; and crucially, less funding than she anticipated.

Ms Roberts said communicating with the department was “100 per cent lacking”; she was shuffled between departments and at one point wasn’t informed when a new plan was offered.

“Something big is amiss in their department, it never used to be like this,” Ms Roberts said.

“Four therapy sessions a week and in-between I’m fighting the NDIS for funding … you’ve got to fight for every little thing you want from them.”

Ms Roberts and her daughter were last week told they’d have to front the AAT for a fourth time.

Ms Roberts said she sympathised with those who don’t have an advocate: “It makes me sick to my stomach that other people have to fight for this.”

Both families reached out to Fremantle federal MP Josh Wilson to help.

“Many of us could not fathom the scope and unrelenting nature of the care responsibility involved in supporting the health, safety, and well-being of a person with complex needs,” Mr Wilson said.

“They absolutely deserve a high quality and supportive NDIS.

“Sadly, the Morrison government has sought to chisel away the substance of NDIS support, while making the system less personal and responsive to the needs of people with disability and their carers.” 

The Herald reached out to federal NDIS minister Linda Reynolds, but she didn’t provide a comment.

This week on the federal election campaign trail, Labor pledged a a sweeping review of the NDIS if it wins the election, while the Coalition says another review would add uncertainty into the scheme.

by SKYE WILLOW-WITHERS