The payment and allowances for carers has not increased in nearly a decade and advocates say it is pushing already exhausted carers into more stress and poverty.
Annette Herbert is a carer for her adult daughter, Renee, who was born with cerebral palsy and later acquired a brain injury.
The pair now live in "an old rattler" in Adelaide's northern suburbs — an area with a high rate of NDIS participants — after having to move from a beachside suburb to make ends meet.
Ms Herbert said she had barely seen an increase in her carer payment and allowance for 30 years.
"You get used to not having money and you get used to going without," she said.
"It's a travesty, it's absolutely atrocious.
"I can't think of a policy or strategy that the Australian government should be more ashamed of."
Together, the mother and daughter grow, arrange and sell bouquets of flowers at the local farmer's markets as a social outlet and a way to recoup some of the costs of their hobby.
Ms Herbert said if she were a paid disability support worker instead of a carer, she could earn the same amount working a two-hour shift on a Sunday than she does for a week of 24/7 care.
According to Carers SA, federal government spending on carer income had fallen since 2014.
It said when the carer allowance was first introduced, the rate was 25 per cent of what a couple on the age pension receive, now it is about 10 per cent.
Carers Australia reports that the current carer allowance would need to increase by 150 per cent to match that rate, which would cost an extra $1.9 billion a year.
'A great Australian shame'
Carers SA CEO David Militz said the carer payment and carer allowance had not been increased — or reviewed — in nine years and had barely increased in the ten years prior.
He said unpaid carers saved the federal government more than $70 billion a year, but were significantly undervalued.
"Everyone at some point in their life will be a carer and it could happen really suddenly, that's why this is a really important issue for the community," he told ABC News.
"It'll affect your work, your life and your social connections in the community.
"For those carers who have the really significant caring roles that have to stop work, that have no level of income apart from the carer payment, this is where the rubber hits the road."
He said an individual carer could be up to $400,000 worse off over their lifetime and on top of that, they do not receive superannuation.
Mr Militz said they were negotiating with the federal government to change that as the carer pension had "lagged significantly behind" increases to the aged pension.
Ms Herbert said the amount of work required to manage her daughter's National Disability Insurance Scheme (NDIS) had forced her and many other parents to "abandon careers and paid work in an attempt to manage NDIS".
"What NDIS has in effect done has made good lives and wealth for private for-profit providers," she said.
"NDIS is screwing us to buggery and it's a great Australian shame.
"Nobody is going to have regard for the lives of people with disability like devoted parents and there's no price that you can pay for my contributions, but you could meet me halfway.
"Instead of being seen as leaders and champions of the human rights of people with disability, champions of safeguarding people from abuse, we're seen as not really worth the time of day."
She said Disability SA made a contribution towards water, telephone and electricity costs because their home was also considered a worksite, but the NDIS did not.
She said she had not received responses to her letters and emails to federal MPs.
Social Services Minister Amanda Rishworth said the federal government was "committed to supporting carers and valuing the contribution they make" and the carer payment was indexed twice a year in March and September, alongside other income support payments.
"In November, along with Treasurer Jim Chalmers, I announced the establishment of the economic inclusion advisory committee," Ms Rishworth said.
"This group is tasked with providing advice on options to boost economic inclusion and tackle entrenched disadvantage. It will also assess the adequacy, effectiveness and sustainability of income support payments ahead of every federal budget.
"This includes pensions such as carer payment and other income support supplementary payments."
