Sue Beaven has spent years navigating the twists and turns of National Disability Insurance Scheme (NDIS) to secure adequate support for her daughter, Ashleigh. Ms Beaven said reform of the scheme and yesterday’s discussion, led by Minister for the NDIS Bill Shorten were long overdue.

Ashleigh, 19, has lived experience of autism and has been diagnosed with “severe developmental delays”. NDIS funding includes support for medical services, speech and physiotherapy, hiring support workers, attending support groups and more. Ashleigh’s care plans have to be revised every 18 months, which Ms Beaven said stopped Ashleigh receiving support she needs. 

“It’s a different case manager each time. I get they have high staff turnover but there’s not even a designated person for our local area. I’d love for things to be more accessible and to have regular contact with a case worker,” she said. 

“It’s also never in-person [the case meetings] so they don’t know Ashleigh from a bar of soap, they don’t know the person they’re talking to.”

Implementing longer-term care plans was one of the six proposed reform measures made by NDIS Minister Bill Shorten at yesterday’s National Press Club meeting. Mr Shorten proposed the measures after saying the organisation had “lost its way” over the last 10 years and faced ongoing claims of fraud. 

“The hard truth is this: the NDIS is not what it should be … and that is why, to enable the NDIS to reach its potential, we need to reboot,” Mr Shorten said. 

The six-pronged reform plan includes implementing effective money spending, targeting the fraudulent misuse of funding, linking the NDIS more effectively to community services, supporting the independent living of people with disability, better equipped staff and the ridding of ineffective providers.

Disability advocate and writer, El Gibbs, said the areas of reform aligned with the issues people with disability have “long argued for”. She said the NDIS reform discussions were a chance to look more deeply at the accessibility and inclusion of people with a disability across the board. 

“We can’t just focus on the individual disabled person. The rest of society, the rest of our community also has to change. So that people with a disability aren’t just viewed as ‘we’re housed over there in disability land’, that we get to be in the community with everybody else,” she said. 

AUDIO: Hear more from disability advocate and writer El Gibbs on the necessity of social change beyond the NDIS reforms:

Ms Beaven agreed social activities are crucial in changing perceptions, but found participating in community integration activities covered by NDIS were another barrier. 

“Ashleigh recently started doing sewing classes and it just took forever for them to approve it to see what category it could fit into. It’s a community thing, a participation in a community thing for her, and they were delayed in seeing if it could fit the criteria,” Ms Beaven said. 

“I just feel like they’re just worried about ticking a box, but Ashleigh’s an individual.”

Ms Gibbs said she hoped the NDIS and disability support care services could differentiate between someone’s ‘diagnosis’ and their unique requirements as an individual.

“It’s important to understand that the functionality of the person is the important thing that the supports are needed for, not the diagnosis,” Ms Gibbs said.


The NDIS declined a request to comment.


Image credit: AAP