South Coast woman Cheryl Hopkins cares for her grandson who has cerebral palsy.
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The National Disability Insurance Scheme has "completely let them down" according to Ms Hopkins.
She shared her testimony about the failings of the NDIS at a national rally, speaking to a room of about 80 people in Nowra on Friday.
Her grandson is non-verbal and a quadriplegic, requiring a high level of care.
"Rocky is 24-7," Ms Hopkins said. "I don't mind that, he is a wonderful child."
She said that each year the National Disability Insurance Agency asks for documentation to prove he has a disability.
For kids like Rocky - it's a redundant exercise.
"He's never going to get better, that's how he is going to be his whole life," Ms Hopkins said.
The NDIS funded a set of safety rails and hand splints for Rocky when it was first rolled out.
In its second year, Rocky applied for a bed and a sling.
Eight months later, and they're still waiting.
"The quote has been in since September last year," she said.
"They've asked us to put in new quotes, to go with next year's plan.
"Two wheels have fallen off his bed. There's a safety risk, his bed could collapse."
Ms Hopkins would like to see the NDIA working with schools to deliver essential services on site.
"He attends Budawang, there needs to be more support within the school," she said.
"They need to have physiotherapists at the schools.
"If a child needs to see the physio or a speech pathologist, what do you do? Keep them at home from school?"
The Nowra rally, hosted by a local service providers, was attended by Gilmore Labor Candidate Fiona Phillips and Nationals Candidate Katrina Hodgkinson.
