‘My story is not unique’: Geelong mum Nicole Holt’s two-year NDIS bureaucratic battle

A woman claims inaction over her National Disability Insurance Scheme claim has left her homebound.

Nicole Holt is frustrated over her dealings with the National Disability Insurance Agency. Picture: Mark Wilson.

A Geelong mum is calling for greater transparency from the National Disability Insurance Agency after what she says has been a frustrating two years trying to amend her plan.

Nicole Holt has been an NDIS client for seven years and has four neurodiverse children, each of whom have their own plan.

Almost two years ago, Ms Holt requested to add support for her worsening fibromyalgia to her plan.

The disorder causes widespread musculoskeletal pain, along with fatigue, sleep, memory and mood issues.

Ms Holt, from Curlewis, said what should have been a straightforward process has turned into a nightmare, with no resolution in sight.

She said she provided all the required assessments and materials.

“It’s never been ‘yes’, it’s never been ‘no’,” she said.

“I would prefer someone tell me there isn’t enough evidence, I could do something with that.

“I just want someone to actually look at the piece of paper.

“It’s just been handballed around in circles.”

On Monday, Ms Holt said she was again told the application would be assessed by another NDIS division and would be escalated.

“How can a system be so inconsistent and confusing, leaving individuals and families like mine in limbo?” she said.

Disheartened: Nicole Holt. Picture: Mark Wilson.

Ms Holt said she relied on the NDIS for essential support and found this “demoralising battle” disheartening.

“I’ve been with the NDIS for seven years now and I am very lucky in that my funding is quite excessive, in terms of support,” she said.

“My plan is good, but it doesn’t serve any assistance regarding my physical problems.

“Anything that may physically help me, they will not find me.”

Ms Holt said in the past eight months her physical condition had rapidly declined and she felt she had been left “homebound”.

“I am unable to enjoy any part of life as my symptoms worsen, and yet the support I desperately need remains out of reach,” she said.

“This constant back and forth has caused incredible stress and hardship.”

Ms Holt called on the NDIA to review its processes, improve its transparency, and prioritise the people it was created to support.

“My story is not unique, and I fear for others in the community who are similarly stuck in this broken system,” she said.

An NDIA spokeswoman said in order for the agency to consider an increased level of support, it required sufficient evidence to support the request.

The spokeswoman said access to the NDIS and funding decisions were based on a person’s level of impairment and functional capacity, not on condition or diagnosis.

“This means the agency requires evidence to support an understanding of functional capacity and history,” she said.

Originally published as ‘My story is not unique’: Geelong mum Nicole Holt’s two-year NDIS bureaucratic battle