Smith died in hospital on April 6 from septic shock, multiple organ failure, severe ulcerated and infected tissue and malnourishment which developed at her Kensington Gardens home.

She had been assigned a single paid carer by NDIS-administered non-government organisation Integrity Care SA, but SA police said the 54-year-old woman with cerebral palsy spent 24-hours a day for more than a year sitting in a chair, with little food in the house.

Since Smith’s tragic death, state and federal investigations have been announced in a bid to uncover and mend the systems which denied the Adelaide woman with cerebral palsy a safe, happy and healthy life.

Kristen Deane, campaign director for Every Australian Counts, a grassroots disability organisation, told InDaily while Smith was failed “on a number of levels” her death had highlighted disability community concerns about a growing disparity of service provision within the NDIS.

“If you’re well-educated, well resourced, connected in with other people in the disability community and their families, and know how to navigate your way around the government system, you are more likely to get a good outcome out of the NDIS,” Deane said.

“It’s still hard – and not guaranteed – but you’re more likely to have a better shot at it. Whereas if you come from any other background … they are the people who are not getting the opportunities out of the NDIS.

“If we’re not careful and don’t do something to turn it around, we are going to end up with a dual-track system where one lot of people get good outcomes from the NDIS and the other people are left behind.

“And if we’re not careful, we are going to further entrench disadvantage rather than acting to correct it. And that is already happening – and that is why we need to make it simpler and easier for everyone.”

Deane’s comments follow the release of the Tune review into the NDIS in January, which found issues regarding transparency, consistency and timeliness in decision-making through the NDIA.

Commissioned by the Federal Government, former senior public servant David Tune made 29 recommendations to improve the scheme.

In response to the report, Minister for the NDIS Stuart Robert said: “The government will respond in the coming weeks with more details about what specific improvements we will be making and how we will set the Participant Service Guarantee into law by July 1, 2020.”

For Di Barlow, the implementation of the Tune recommendations could speed up the process of getting her daughter’s wheelchair fixed.

Barlow said her daughter, Kirsten, who lives with Rett Syndrome, relied on the motorised vehicle to leave the house – but had been unable to use it due to difficulties navigating the complex system to get the wheelchair repaired.

She said the wheelchair was sent away to be fitted with a specialised foam, which would help provide the physical support her Kirsten required, in 2017.

More than two years on, Barlow said her daughter had still not had the wheelchair mended.

“I can’t work it out because the person who has been working on our plan has said to me several times, ‘the money is there for repairs. You can go ahead and get them done.’ And when these companies put in the quote for the work the money is not there,” Barlow said.

“I just don’t understand what is happening. Obviously, at the level our worker is at the NDIA at, she’s organising it all, but obviously the permission is not happening from higher up.”

Instead of using the wheelchair, Barlow said her daughter relied on two people to support her to walk to the toilet and had a fold-up wheelchair, which she used while at home.

Barlow said her daughter also used a roughly 25-year-old wheelchair when she needed to leave the house. But she said that the old wheelchair kept breaking and required consent repairs.

“I haven’t been able to use it since Friday because it’s still not working,” Barlow said.

“They are going to have to do something more permanent because it’s just not working.”

Another South Australian NDIS participant, Patrick (who didn’t want his surname used), said trying to fight for an appropriate plan had taken a toll on his mental health.

The 54-year-old blind man lives with numb hands and feet, which cause him chronic pain and limit his motor skills.

He said, with the recommendation of his occupational therapist, he had sought assistive technology such as a barometric chair, which would enable him to take pressure away from his feet, to be funded under his NDIS plan.

But he said his requests had continuously been denied leaving him “discouraged and humiliated”.

“I have had to continuously repeat that my hands do not work as my motor skills are declining, neuropathy and numbness severely affected, and I have been diagnosed with chronic neuropathy in both hands and feet, but none of this was acknowledged,” Patrick said.

“This has affected my self-esteem and confidence severely. I have begun to hate being disabled and as a result, hate myself.

“I truly felt like I was being punished for my complaint and my mental health has declined while my anxieties were significantly increased.”

Deane said while the NDIS was developed to be individualised it placed a responsibility on the person with a disability and their support systems to advocate for themselves.

“Australians supported the NDIS because they wanted people to have a fair go,” Deane said.

“But for this to really be fair we have to make sure we’re not leaving people behind, and that means that some people need more help than others, and that is the only way the NDIS is going to be fair.

“And so if we really want people on the NDIS to get what they need and have the same opportunities as other people in the community, then some people who have multiple levels of disadvantage, they need more help to make that happen.”

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