First Peoples Disability Network Australia has joined Australia's Disability Representative Organisations in calling for people with disability to lead the design of the National Disability Insurance Scheme changes announced by Health Minister Mark Butler at the National Press Club on Wednesday.

FPDN said it was "compelled" to address what was missing from the announcement: "any meaningful engagement with the reality facing First Nations people with disability".

The Network said that while Minister Butler spoke of returning the NDIS to its "original intent ... for First Nations people with disability, the original intent was never fully realised".

"More than 63,000 First Nations people are now on the NDIS, yet our communities remain dramatically underserved. Fewer than one per cent of NDIS providers are First Nations organisations, despite First Nations people making up eight per cent of all participants. In remote and very remote communities, more than one in three participants are not accessing the supports in their plans," the FPDN noted.

The Network described the Minister's announcement as signalling "the most significant contraction of the NDIS since its creation".

"FPDN does not oppose reform. We support a sustainable NDIS that delivers for the people it was built for. But we have serious concerns about how these reforms will land for mob."

FPDN chief executive, Worimi man Damian Griffis, said the measure of the federal government's proposed changes to the NDIS "will be whether they protect or further exclude the most marginalised Australians, First Nations people with disability living in communities where many of the services simply do not exist in the first place".

"The Minister invoked 'nothing about us without us.' We are here to hold him to that," Mr Griffis said.

"First Nations people with disability were not mentioned in today's speech. That silence is not acceptable.

"We welcome reform that tackles fraud and waste. Our mob are not the fraudsters, they are too often the victims of a system that has failed to deliver culturally safe, quality supports.

"We are ready to work with the Government, but reform designed in Canberra without First Nations voices at the table will repeat the mistakes of the last thirteen years."

Mr Griffis noted that First Nations Australians experience disability at 1.9 times the rate of the general population, and that the Disability Royal Commission described the lack of NDIS services for First Nations people with disability as "a national crisis".

The FPDN urged the federal government to deliver five commitments before the reform of the NDIS proceeds: Cultural safety built into the new assessment tool from day one; no First Nations participant transitioned off the NDIS until culturally safe alternatives exist locally; "ring-fenced" funding for Aboriginal Community Controlled Organisations in foundational supports and Thriving Kids; the immediate establishment of the First Nations Disability Forum and implementation of all Disability Royal Commission recommendations; and a First Nations outcomes framework reported against Closing the Gap.

"The NDIS has always been harder to access for our mob. Harder to navigate. Harder to use," Mr Griffis said.

"Now we face the prospect of 160,000 people being moved off the scheme through a process that hasn't been designed with us, into services that don't yet exist for us, assessed by a tool that hasn't been validated for us.

"We are not asking the Government to stop reform. We are asking them to get it right. First Nations people with disability have waited long enough. We cannot afford to be an afterthought in changes that will define this scheme for a generation."

FPDN said it will seek urgent meetings with Minister Butler, Minister for the National Disability Insurance Scheme Jenny McAllister, and Minister Malarndirri McCarthy to discuss the First Nations implications of Wednesday's announcement.