The Commonwealth's $2 billion Thriving Kids program could be a game-changer for children with developmental needs, or it could become another well-intentioned policy that doesn't work for First Nations families, the First Peoples Disability Network warns.

The Network - the national peak for Aboriginal and Torres Strait Islander people with disability – welcomed the recent new investment in supports for children and families following the Commonwealth's Thriving Kids announcement.

In a joint statement, the FPDN had a clear message and an invitation for Minister Butler: "Work with us."

FPDN Director of Policy and Strategy Tennille Lamb told National Indigenous Times the Network wants to ensure the Thriving Kids program is "designed with First Nations people with disability, to make sure that it meets the needs of our kids with autism".

"We are so worried that our kids will fall through the cracks, that they won't get the supports that they need. And that will have long term impacts for their wellbeing throughout life," she said.

"I think one of the big things, particularly for First Nations kids with autism, is there's a really big hurdle with getting assessments and diagnoses of autism in the first place. It can cost up to $3,000 or more to get an autism diagnosis. And that is really out of the realms of so many people.

"A lot of our mob are worried and have very valid concerns that if their kids get a diagnosis of any kind of disability, then they'll be brought to the attention of the child protection system. Because we do know that more of our kids with disabilities are taken away from their families and put into foster care for a variety of reasons. And that's not often got to do with the family environment or their ability to look after their babies. So, that's a really valid concern as well."

Ms Lamb said Indigenous children are also under diagnosed.

"That is because of the reasons we spoke about, but also because for our kids who live in rural and remote areas, and even regional places, those services just aren't available to them as well," she told National Indigenous Times.

"The other thing is, what happens when our kids do get diagnosed - What happens then? What services are available to them? There are all those issues.

"It is complex and multi-layered. And any program that tries to address that has to respond to those complexities. It's only going to do that if the program is designed with us and with kids and their families with autism."

Ms Lamb said the First Peoples Disability Network does not want "one kid missing out on individualised support".

"We know that autism is like the fingerprint, neurodivergence - very single person with autism is different. And you can't treat any one of them the same," she said.

"We hope that any program ensures that our kids still have individualised supports where it's required. And we also hope that any Thriving Kids program doesn't limit the amount of supports that they can receive.

"I think that's a really big concern at the moment too; is that under the NDIS, people who are getting NDIS supports are getting some really good services, which they would never be able to afford by themselves, and we hope that that kind of support and service isn't taken away."

Ms Lamb also noted that it's important to remember kids with autism should not be "seen as something that can be cured".

The FPDN stressed that for the Thriving Kids program to succeed "it must be co-designed, community led and it must protect choice and control for First Nations families".

The federal government has proposed a $2 billion program to provide supports outside the NDIS for children with mild to moderate developmental needs, with states and territories expected to match the funding and implementation to begin from mid next year. Several premiers said they were surprised by the announcement and wanted detail before committing. The Treasurer has linked state agreement on Thriving Kids to the broader hospital funding deal now being negotiated.

The FPDN noted that the federal debate about "foundational supports" is occurring while progress on Closing the Gap remains off track for most targets and children continue to experience unacceptable inequities. National child and family organisations and Aboriginal community leaders have called for better measurement and accountability on outcomes that matter for children, not only program inputs.

FPDN reiterated its support for the 2023 NDIS Review recommendation of "building a continuum that includes mainstream services, foundational supports and the NDIS so families get the right help at the right time".

"The test for Thriving Kids will be whether it strengthens that continuum without forcing families into one-size-fits-all solutions or creating service deserts in regional and remote communities.

"Foundational supports should expand options and improve access," Ms Lamb said.

"They must not be used as a shortcut to remove choice or push families into programs that do not fit their child or culture."

The Network is seeking five commitments to make Thriving Kids work:

-A "no child loses out" guarantee. Children keep current NDIS supports until alternative services are operating in their community, independently verified for quality and cultural safety.

- First Nations co-design and leadership. Ring-fence funding for Aboriginal Community Controlled Organisations (ACCOs) to design, deliver and evaluate Thriving Kids supports, consistent with Closing the Gap Priority Reforms. Joint governance with peak First Nations bodies should be embedded from day one.

- Choice and control protected in practice. Foundational supports must add options, not replace rights. Where clinically indicated or due to complex family circumstances, individualised packages should remain available. Navigation support must be funded so families can choose culturally safe providers.

- A credible workforce transition plan. Stabilise local allied health and family support services, with targeted measures for regional and remote communities, and for women-led practices that predominantly support neurodivergent children. Avoid sudden funding shocks that break therapeutic relationships.

- Transparency and accountability. Publish a national implementation timeline, state and territory co-funding arrangements, coverage maps, and quarterly dashboards showing outcomes by Indigeneity, region and gender, aligned to Closing the Gap reporting.

FPDN has written to Minister Butler to invite a collaborative partnership and to request a range of actions, including:

- A co-design arrangement (a formal partnership with FPDN and peak First Nations child and family bodies to co-design Thriving Kids for First Nations children);

- A written protocol with the states that no child is transitioned from an NDIS plan until agreed services are in place locally, including culturally safe referral and navigation pathways;

- A time-limited work continuity fund to prevent service exits during transition, prioritising providers serving First Nations families and thin markets; the co-development of a First Nations outcomes framework for Thriving Kids that measures what matters for children and families, integrates Closing the Gap targets and reports publicly every quarter;

- The alignment of Thriving Kids with Connected Beginnings and other early years initiatives so families have "one door access", and culturally strong help close to home;

- Publishing the Commonwealth–state funding and governance arrangements, including any linkages to hospital funding negotiations, to give families confidence.

"We support reform that strengthens the NDIS by building the services around it," Ms Lamb said.

"Thriving Kids can succeed if it's co-designed with First Nations families, led by our community-controlled sector, and if government keeps its promise that no child will be worse off."