Elizabeth Noone said she no longer wanted this, but described her experience with the National Disability Insurance Scheme over the past two years as "a nightmare".

Her daughter Jasmine, 11, has autism, an intellectual disability, epilepsy, diabetes, is non-verbal and often becomes agitated.

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Ms Noone, a single mother, said before the NDIS, block funding allowed Jasmine to receive services such as speech and occupational therapy as well as respite care.

But now the complex nature of the NDIS and the fact participants and their families had to organise more themselves created a lot of additional pressure.

"Everyone's got their own thing, but carers looking after disabled kids or adults, I think it is the toughest job ever and they've just put this massive job on top," Ms Noone said.

"I have to run around managing all sorts of stuff now, I've got no idea and I'm only just now getting a handle on it, of what I'm doing."

Jasmine's first NDIS plan, arranged in late 2017, took eight months "for them to get through some sort of red tape".

"So we went for eight months with nothing, no respite, no OT, no speech, no behaviour support, nothing," Ms Noone said.

She felt her daughter's latest plan, although an improvement, still did not provide the right support.

"I've had to do loads and loads and loads of work to get it to that point, which is just not what a carer should be doing," she said.

"I feel strongly that Jasmine has the capacity to learn however without the intervention that the NDIS funding can provide, she is becoming increasingly frustrated and developing behaviour which includes aggression and running away, placing her at further risk of harm."

A National Disability Insurance Agency spokeswoman said the agency had contacted Ms Noone to reassure her that staff would continue to work to address her concerns.

"The NDIA and NSW Health will work together to ensure Jasmine is not without supports to manage her health needs," she said.

The spokeswoman said the NDIS was never intended to replace other mainstream government services such as health, mental health, education, housing, justice or community-based supports.

"If a participant thinks a decision made by the NDIA about them is wrong, they are encouraged to contact their local office or local area co-ordinator," she said.

Nearly 280,000 Australians receive support through the NDIS, including 4224 in the Murrumbidgee region.

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