Australians will die if proposed changes to the disability support scheme are introduced, federal politicians have been warned.
A parliamentary inquiry is holding a number of hearings to receive feedback from the disability sector about planned changes to the National Disability Insurance Scheme.
Samantha Connor, who has muscular dystrophy, told the inquiry she was worried about independent assessments being introduced but also back-up generators not being funded by NDIS plans.
"I don't think that's the only way people will die under the changes proposed to the NDIS," she told the inquiry on Tuesday.
Ms Connor reminded politicians about two 25-year-old men with muscular dystrophy who relied on ventilators to breathe while they slept.
They died after a storm cut power and a support worker did not wake up to turn on a back-up generator.
Ms Connor flagged concerns independent assessments were being introduced to save money, saying it was not long ago the government boasted about a $4.2 billion underspend in the scheme.
"I've never once heard that Medicare was unsustainable. We have a universal right to health care," she said.
"I'm unsure why we are even having an inquiry, the entire disability sector is unified in saying this is a bad thing.
"We are united in saying that this plan is flawed, that there has been no co-design and that it will negatively impact people with disability and their families."
The government has agreed to halt the rollout of independent assessments until the sector is consulted and feedback from trials are considered.
People With Disabilities WA say evaluations of the trial should occur independently from the government body that runs the NDIS, the National Disability Insurance Agency.
Alternative ways to make access and planning more consistent should also be explored, the group says.
The government wants to have new entrants to the NDIS independently assessed by approved doctors to determine what level of support they need.
Existing participants having their plans reviewed would also be assessed.
The NDIS costs about $94 billion over four years to run, with funding split between federal and state governments.
Politicians were also warned the scheme was not culturally appropriate for Aboriginal Australians.
Consultations should be done with the community to ensure Indigenous people can get support.
Marninwarntikura Women's Resource Centre chief Emily Carter said the scheme was forcing Aboriginal people to fit into a western way of looking at disability.
"It will fail our families," she said.
"We are going to miss out and that is the worry and concern for all of us."
Australian Associated Press