The NDIS should be driven by users, not from the top down

But it's not surprising a scheme with such a simple premise - to fund costs associated with disability - should be difficult to administer.

Disability, much like people in general, doesn't tend to fall into neat boxes or definitions. A diagnosis alone isn't enough to determine an individual's needs, just as an agreed definition of a disability doesn't always make way for the complexities such a condition entails.

It was a Liberal senator who, breaking ranks last week, put it best when describing the current deficiencies of the system.

Hollie Hughes, whose son has autism, said the proposed new assessment system for the NDIS was very "tick-a-box", with an algorithm of 400 "personas" based on different ages and personality types, as a way of producing a budget plan for the participant.

"I think it is dehumanising and offensive," she said.

"If you are someone without a disability nobody tries to box you, no one determines what you can do, how you fit, what your life should look like.

"This was the very ideal behind the NDIS - that people's lives would look like what they wanted them to look like. People's lives could best reflect what their families wanted their lives to look like.

"We are talking about people here - these are people's lives."

Describing a scheme that currently caters to around 450,000 Australians, Senator Hughes is just one of a constant chorus of voices objecting to how the scheme works in practice, from being accepted into the scheme in the first place, to determining which aspect of a disability needs funding, to then deciding how and how much.

Many Australians will remember an emotional Julia Gillard, then prime minister, who cried when introducing a bill to establish the NDIS in the federal parliament in 2012.

It passed the following year, and it has rarely been smooth sailing since then. Nearly eight years on, it would seem many complaints and comments have barely been heeded.

The NDIS is designed to cut through the barriers faced by many with disabilities when moving through daily life, but instead, it seems to have created an even bigger and more intractable one.

It also, anecdotally, seems geared towards giving disabled people - and those working in the sector - as little assistance as possible and still remain within the boundaries of the scheme. In a country as supposedly progressive as Australia, the opposite should be the case.

Disability Discrimination Commissioner Ben Gauntlett, who is quadriplegic, said the second trial of independent assessments of the scheme had been "unsatisfactory" and said the model needed to be reviewed.

Responding to his comments, NDIS Minister Linda Reynolds said she wanted to take a "more co-design" approach to help resolve the issues.

A narrative that continues to emerge is that this system should be user-driven, not one determined from the top down.

While the system should be streamlined wherever possible, it should be one that acknowledges, also wherever possible, the complex needs of people with disabilities cannot always be easily defined.

And if there are those who describe the system as dehumanising, or exhausting, or disheartening, or disempowering, the government should be listening and responding.

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