Stacey Gittus has three children who are participants of the NDIS and has experienced her fair share of frustrations with the system.
But a recent decision by the scheme has left her feeling "broken" and in a state of "sheer desperation".
The National Disability Insurance Scheme (NDIS) has declined to fund a $3,100 custom-made body suit worn by her son James, despite him receiving funding for two previous suits.
"The reality is this suit will assist in preventing him one day ending up either being bedridden or in a wheelchair," Ms Gittus said.
James was born with Van der Woude syndrome, which affects the development of the face. He also has autism, developmental delays and a severe language disorder.
In addition, the 11-year-old has issues with low muscle tone and joint hypermobility, according to his paediatrician and allied health team.
The suit is designed to give him stability.
"Prior to the suit, James didn't go to school full time," Ms Gittus said.
"Without it, he can't do judo and judo is hands down his life."
James Gittus is currently the judo Tasmanian state champion for his age and weight.
The suit has allowed James to compete and train without an increased risk of injury.
"It's given him so much confidence and determination and he never lets his disability get in his way," his mother said.
"If we take away the suit, we take away an element of him and who he is, and he is more than a diagnosis."
Family vows to fight the NDIS funding decision
In an email to the family, the National Disability Insurance Agency stated that while the previous two suits had been funded with low-cost consumable funding, "it does not appear that there has been sufficient information provided to inform a reasonable and necessary decision for this particular support".
Ms Gittus said information had been supplied to the plan managers on multiple occasions.
NDIS planning documents for James, seen by the ABC, detail that his paediatrician and allied health team have all stated that he has issues with low muscle tone and joint hypermobility, as well as other physical challenges.
The family has made the difficult decision to personally fund James' next body suit.
"It's a big stretch for us, we're a single-income family, we make a lot of sacrifices as it is for our children, so it's definitely going to push the budget to have to pay for it," Ms Gittus said.
Ms Gittus is frustrated because there is money unspent in James' plan that could be used to pay for the suit.
She said she would continue to fight to have the decision reversed in the hope James can continue to have funding for body suits as he grows.
"I refuse to allow these decision makers to be unaccountable," she said.
In a statement, a National Disability Insurance Agency spokesperson said the agency would continue to work with James's family "and support them to submit any additional information we may need to consider their request".
Calls for NDIS participants to have greater control over their plans
Disability advocate Jane Wardlaw said the struggles the Gittus family faced were an "example of why we need to have reform in the sector".
The NDIS has been under review by an independent advisory body.
NDIS Minister Bill Shorten has pledged to make the NDIS "more humane, less bureaucratic".
He also said he wanted to make sure "we're getting real outcomes for people who matter: Aussies with disabilities".
Ms Wardlaw would like to see people with disabilities given more choice and control over how their plan is managed, and greater freedom to buy the equipment they need.
"People are usually best placed to know what it is that they need."
She said with a shortage of allied health professionals across the country it could be difficult to provide the evidence the NDIS needed to make decisions.
"We've been advocating for people to be able to self-manage their plans a lot more and to be able to use their funding in an appropriate way to buy the essential equipment that they need so they don't have to navigate some of these broken areas in the market," Ms Wardlaw said.