Mum of three kids with autism slams decision to remove the condition from the NDIS: ‘It’s prejudice, not policy’

A mother of three children with autism has furiously lashed the decision to remove it from the NDIS as “prejudice, not policy”. Read her powerful letter to Minister Mark Butler.

Susie O'BrienNational education editor

@susieob

4 min read

August 22, 2025 - 11:58AM

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Shantelle Marks is a Melbourne mother of three children with autism who believes the decision to move the condition out of the NDIS is “prejudice, not policy”.

Her words come after Disability and NDIS Minister Mark Butler announced a new $2bn scheme called Thriving Kids would support children with mid to moderate developmental delays and autism outside of the NDIS.

The founder of Hope in Colour Advocacy, a grassroots national child safety and disability advocacy organisation, Ms Marks says there is “no such thing as mild autism”.

She is mother to Madison, 14, who has level three autism, who needs the most support, and Isabelle, 9, and Harrison, 7, who are both categorised as level two.

Mother-of-three Shantelle Marks believes there is no such thing as "mild" autism.

The Melbourne mum has accused NDIS Minister Mark Butler of “a betrayal of every autistic child and family”.

“Isabelle, who is level two, is the most challenging because she has PDA (Pathological Demand Avoidance) in the mix,” she said.

“The kids are going to pay the price for this decision. When they were put on the NDIS we were told it would be for life. Now budget cuts mean they are not disabled enough.”

Ms Marks posted an open letter to Minister Butler on Thursday and within a couple of hours it received more than 300 shares and 1000 reactions.

“Families are furious, and the backlash is snowballing. Families fear their children will be stripped of NDIS supports and left stranded in underfunded state systems,” she said.

“Parents (mostly mothers) are being forced out of the workforce to homeschool due to inadequate support – a hidden economic and gender equity crisis. The government is cutting $46B from the NDIS while breaching its obligations under the UN Convention on the Rights of Persons with Disabilities,” Ms Marks said.

“Our children are not a budget line. This is discrimination, and the community will not be silent.”

Shantelle Marks’ open letter

Minister Butler – Autism Is Not Mild, Temporary or Negotiable. Yesterday, you betrayed our children.

Dear Minister Butler,

Yesterday at the National Press Club, you told the nation that too many autistic children are on the NDIS. You called their supports “overservicing”. You spoke about “mild to moderate autism”. And you suggested autism is “not a permanent disability”.

These words were not just wrong, they were discriminatory, harmful, and a betrayal of every autistic child and family.

Autism is lifelong. There is no such thing as “mild autism.” These labels are political inventions, designed to justify stripping children from the NDIS. Children do not stop needing therapy because the government needs to save money. To suggest otherwise is not policy, it is cruelty.

You announced Thriving Kids as the alternative, backed by $2 billion and built on behaviour programs like Inklings programs already rejected by the autistic community as unsafe, compliance-based, and damaging. Families are being told to trust an untested scheme, with no detail, no transparency, and no guarantee that their children will have access to therapies, trusted providers, or meaningful supports.

Let’s be clear: this has been done without input from autistic people, parents, or disability-led organisations. Once again, decisions are being made about our lives, without us. That is not co-design, it is exclusion.

Minister, Australia has ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This commits you to:

• Closely consult with and actively involve disabled people in policy decisions (Article 4.3).

• Ensure disabled children enjoy all human rights equally (Article 7).

• Protect children from medical or scientific experimentation without free consent (Article 15).

• Guarantee respect for physical and mental integrity (Article 17).

• Ensure health interventions are based on free and informed consent (Article 25).

You have ignored these obligations. Thriving Kids is being built behind closed doors, without consent, without transparency, and without autistic leadership. That is a direct breach of international law and a direct assault on the rights of children.

Here is what your cuts mean in reality:

• Children will lose speech therapy, OT, and psychology.

• Families will lose choice and control, forced back into broken state systems that already fail.

• Mothers will be driven from the workforce into poverty, forced to homeschool and care without support.

• Autistic children will regress, mask, burn out, and suffer long-term harm all to balance a budget.

Minister Butler, you are dismantling the NDIS. You are punishing children and parents for your government’s failure to properly fund mainstream services. And you are doing it with language that demeans and dismisses us.

Autism is not temporary. Autism is not mild. Our children are not “overserviced.” They are human beings with dignity, rights, and futures worth investing in.

Hope in Colour Advocacy will not stay silent while you trample those rights. We will fight, we will organise, and we will hold you accountable.

History will not remember you for $46 billion in “savings.” It will remember that under your watch, autistic children were abandoned, silenced, and stripped of the supports they were promised for life.

We call on these leaders and organisations to stand with us and demand answers:

Mark Butler MP

Anthony Albanese

Amanda Rishworth MP

Senator Jordon Steele-John

Dr Monique Ryan

Lauren Kathage MP

Rob Mitchell MP – Federal Labor Member for McEwen

Australian Labor Party

Gerard Rennick People First Party

The Australian Greens

Children and Young People with Disability Australia