Submission 1912

Submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

I, Monica Arnold am writing in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 to share our family’s lived experience accessing the NDIS and to express deep concern about the direction and implications of the proposed reforms.

While my personal experience relates primarily to early intervention supports for a young child with disability and complex medical needs, this Bill affects all people with disability. The scale and nature of the proposed changes are deeply alarming and reflect a significant shift away from the original principles of the NDIS: individualised support, dignity, inclusion, participation, and choice and control.

I understand the importance of ensuring the long-term sustainability of the NDIS. However, I am deeply concerned that discussions around “future sustainability” are increasingly being used to justify reducing access to supports, increasing barriers to entry, and shifting responsibility back onto disabled people, families, and unpaid carers.

The framing of “securing the NDIS for future generations” should not come at the expense of the current generation of people with disability who need support now.

In 2023, when we first applied for the NDIS, our family had already been discharged from public allied health services because we were told the NDIS was now the most appropriate pathway for support. However, as soon as we entered the NDIS application process, we were no longer eligible for many state-funded services.

This left us in limbo.

We were told early intervention was critical for our child’s development, yet we had no certainty that we would even be accepted onto the NDIS, or what supports might be available if we were approved. During this period, we paid thousands of dollars out of pocket for intensive weekly therapies because the alternative was delaying intervention during a crucial developmental window.

At the time, I documented what a “typical” day looked like as part of our application evidence. On a day without any medical or therapy appointments, more than 17 hours were spent on direct care tasks alone.

This included:

• tube feeding multiple times per day,
• preparing and sterilising equipment,
• managing vomiting episodes,

Submission 1912

• administering medications,
• supporting oral feeding attempts,
• completing therapy exercises at home,
• and constant monitoring and supervision.

That did not include appointments, travel, administration, advocacy, or care coordination.

Our lives revolved entirely around care. Feeding alone took hours each day. Therapy was not something that happened once a week in a clinic — it became something we were responsible for continuing throughout every part of daily life.

At the same time, I was experiencing significant postnatal anxiety and isolation, with very limited support available for families navigating these circumstances.

Even applying for the NDIS required thousands of dollars more in specialist reports and assessments.

We feel incredibly fortunate that our daughter was ultimately approved for the NDIS and able to access early supports at a time when intervention can have the greatest impact. Those supports have made a meaningful difference to her development, participation, communication, regulation, and quality of life.

That is why this Bill matters so much.

The impacts of disability extend far beyond therapy sessions or medical appointments. They affect a family’s ability to participate in work, education, community life, and society as a whole.

Our daughter was initially not accepted into any childcare services due to her additional needs and medical complexity. Without NDIS-funded support workers, she would not have been able to be safely cared for, while I had to transition back into the workforce for financial reasons.

This was not a luxury.

It was essential support that allowed both our child and our family to participate in ordinary life.

Too often, disability supports are framed publicly as optional extras or unnecessary expenses. In reality, these supports are what allow children with disability to access early education, social connection, inclusion, developmental opportunities, and safety, while also enabling parents and carers to remain connected to employment and the broader community.

Without appropriate supports, many families are pushed into financial hardship, social isolation, burnout, and workforce exclusion.

Submission 1912

Accessibility and support should not be viewed as special treatment. They are what make equal participation possible.

There is an increasing narrative that this level of care should simply be considered “parental responsibility.” While parents absolutely love and care for their children, the level of medical care, therapy implementation, supervision, coordination, advocacy, and emotional labour required in situations like ours goes far beyond what is ordinarily expected in parenting.

This labour is intensive, specialised, relentless, and often invisible.

The proposed Bill appears to reinforce ableist assumptions that disabled people and their families should absorb increasing levels of hardship privately, rely more heavily on unpaid carers, or accept reduced participation and quality of life in the name of “sustainability.”

Particularly concerning is the shift in the objects and principles of the NDIS away from the individual needs and goals of participants and toward “financial sustainability of the Scheme.” While sustainability is important, people with disability should not primarily be viewed through the lens of cost containment.

Disability supports are not luxuries or unnecessary spending. Accessibility, therapies, communication supports, equipment, supervision, and care are what allow people with disability to participate in education, relationships, employment, family life, and the broader community.

The Bill also appears to significantly expand discretionary powers given to the Minister and NDIA while simultaneously reducing transparency, review rights, and safeguards for participants.

No system that holds this much power over people’s lives should operate without strong accountability and oversight.

The proposed reforms would allow broad rule-making powers that can substantially alter how the NDIS operates, while reducing opportunities for parliamentary scrutiny and reducing participants’ ability to challenge decisions affecting essential supports.

The Bill also proposes changes that may:

• make the NDIS significantly harder to access through standardised functional assessments that may fail to capture the complexity and variability of disability,
• require people to undergo “all appropriate treatment” before becoming eligible, potentially overriding personal autonomy and disadvantaging people who cannot realistically access treatment. Often people can’t possibly afford exhausting all appropriate treatment options or they are not available where they are located
• remove or reduce supports even when those supports are assessed as reasonable and necessary, based on broad funding caps and sustainability considerations

Submission 1912

• shift greater caring responsibilities onto families and informal supports, including presumptions regarding parental responsibility,
• reduce participants’ ability to seek reassessments when plans are inadequate,
• permit increased automated decision-making in areas that profoundly affect people’s lives,
• and override multiple Federal Court decisions that previously strengthened protections and rights for people with disability.

I am particularly concerned that these reforms fail to adequately recognise the reality that many state-based and mainstream supports have already been reduced, redirected, or withdrawn. Families who do not gain access to the NDIS are often left with impossible choices:

• reduce or leave employment to provide care,
• pay privately for essential therapies and supports,
• or go without services entirely.

For many families, the NDIS is not an “extra.” It is the only pathway to access essential supports.

Early intervention is not optional. It supports development, communication, participation, regulation, independence, and quality of life. It can also reduce the need for more intensive and costly supports later on.

A sustainable NDIS should not mean reducing access to support. It should mean building a society where people with disability are genuinely included, supported early, treated with dignity, and given equitable opportunities to participate.

We should be moving toward a society that values accessibility, inclusion, and equity — not one that places increasingly impossible burdens on disabled people and their families while reframing essential supports as unreasonable expectations.

I urge Parliament and the Senate Committee to carefully consider the long-term human consequences of these proposed changes, particularly for children, people with complex disability, and families already operating beyond exhaustion.

Please do not take away the opportunity for people with disability and their families to access the supports they need to live safely, participate meaningfully, and thrive.