South Australians are enduring the longest wait in the nation for NDIS packages, as national figures show more than 1200 people have died in three years while waiting for access.
The deaths included 65 children, 35 of whom were aged six and younger.
Figures show 170 South Australians were among the 1279 people who died waiting for support from July 2016 to September 2019.
They also reveal SA has the longest wait times in the country.
South Australian families waited more than 210 days on average to receive supports.
That’s significantly longer than the national average, which is 121 days for children with a disability aged six and under and five months or 152 days for those aged seven and older.
For young SA children, it was a seven-month wait or 214 days on average, and for those aged seven and older it was more than an eight-month wait or 249 days.
Beverley Rubenach, whose son Tim suffered severe epilepsy and died from pneumonia while waiting for a special medical bed and a motorised wheelchair in 2018, said she was “horrified” so many families had been through the same pain.
“Our hope when Tim passed away (was) that things would change,” Ms Rubenach said.
“We’ve got documents after documents, letters and letters where we pleaded with the Government.”
Ms Rubenach felt authorities managing the scheme were “absolutely heartless” and said it seemed like so many people got lost in the system.
The Advertiser put questions to National Disability Insurance Scheme Minister Stuart Robert and the National Disability Insurance Agency on Monday about the waiting times and number of Australians who had died waiting for support.
Mr Robert did not respond before deadline. An NDIA spokeswoman said the wellbeing of participants was “of the highest priority to the NDIA” and it was committed to improving the timeliness for access and plan approvals.
She said decisions around NDIS access were taking four days on average as of December 31, while it was taking 77 days for a first plan to be approved.
“Like all Australians, NDIS participants continue to be supported through the health system irrespective of their eligibility for the NDIS,” she said.
The Morrison Government will set new time frames for NDIS decision-making in law this year, including a deadline of 50 days for children aged six and under to have plans approved.
It’s part of an election promise for an NDIS “Participant Service Guarantee”, due to be rolled out from July 1.
People with Disability Australia chief executive Jeff Smith said the waiting times were “unacceptable” but “not surprising”.
“For a long time, we’ve had significant delays in the system,” he said.
“It’s an issue we’ve been raising since the NDIS started.”
The NDIA needed more staff and further training to tackle the delays, which were “across the board” in NDIS plan approvals, finalisation and reviews if they weren’t working, Mr Smith told The Advertiser.
More assistance was also needed to help people with disability access the “bureaucratically complicated” system, he said.
Labor’s NDIS spokesman Bill Shorten said it was “disgraceful” more than 1200 people had died before receiving the equipment or care they needed.
“There needs to be more staff and more accountability,” he said, adding that time frames for decisions were crucial,” he said.
Mr Shorten said waiting times would likely have contributed to some of the deaths.
“I have no doubt the nature of some disabilities is such that if you can get earlier assistance you can extend lifespan,” he said.