NDIS participants facing ‘perfect storm of harm’, committee hears

A four-year-old girl died after she was denied extra NDIS support, with an inquiry hearing how planning failures are putting Aussie families at risk.

A four-year-old girl died after being denied support from the National Disability Insurance Scheme and contracting influenza from her mother.

Rapid changes to the NDIS had created a “perfect storm of harm” that had in some cases led to deaths, a joint parliamentary committee heard on Wednesday.

Advocacy group Every Australian Counts co-founder Nick Avery read a statement on behalf of the family of four-year-old Koa, who is described as having “profound disabilities”.

The child’s family had sought extra support when her mother contracted the flu to protect Koa but were denied because her plan did not allow the support sought.

Four-year-old girl, Koa (R), died after being denied support from the National Disability Insurance Scheme and contracting influenza from her mother (L). Picture: Supplied

“This is a story of what happens when a plan is inflexible,” said Ms Avery on behalf of the girl’s family.

“As Koa’s mother I was blessed to bring my daughter into the world and deeply traumatised to witness her preventable death.

“Koa was four-year-old, she loved music, the ocean, her family, Disney movies and the park.

“Yes she had profound disabilities, every part of her body was infected. She did her best to thrive. But despite her courage and constant advocacy the NDIS failed to understand or acknowledge her needs even after we submitted 15 supporting letters from specialists and professionals.”

The committee heard a loss of flexibility as well as rapid changes had created “collective burnout” in communities with disabilities.

Nobody Worse Off Coalition co-founder Sarah Langston said rapid changes had left some NDIS participants too scared to use their allocated funding in case they misunderstood the new spending rules.

“People feel trapped and hopeless and I will say a lot of people have given up engaging in these processes,” she said.

A joint parliamentary committee heard NDIS planning failures put participants in adversarial positions after the bureaucrat.

Physical Disability NSW director Mark Peach said the changes were often poorly understand or not communicated and there was little mechanism for NDIS participants or providers to raise risks.

“The lack of ability for people to raise risk and have those risks addressed in meaningful ways to help prevent harm and death,” he said.

Earlier the committee heard NDIS planning failures put participants in adversarial positions against the bureaucrat deciding what support they received under the scheme.

Grattan Institute disability director Sam Bennett said the scheme’s processes had an “antiquated design” that followed a “professional knows best model”.

“The legislated design puts participants in a sort of fundamentally adversarial position of having to negotiate line by line each support with a government bureaucrat they would like to have in their plan,” he said.

“That support is either confirmed or denied. And often the plan at least historically hasn't tended to closely reflect peoples memory and experience of the planning conversation.”

Mr Bennett added that staffing levels had failed to keep pace with the growth of the NDIS leading to “fewer and fewer minutes for a planner to make a complex decision for a participant”.

“That is an inherently challenging and adversarial type of engagement as it happens,” he said.