Submission to the Senate Inquiry – National Disability Insurance Scheme Amendment Bill 2026

I am writing as the parent of a child with disability who relies on early intervention and therapy supports to maximise her independence and quality of life. I am concerned that proposed changes to the NDIS and increasing emphasis on cost reduction may result in people with disability missing out on the support they need, ultimately leading to poorer outcomes and higher long-term costs.

My daughter, , is currently an NDIS participant due to Childhood Apraxia of Speech. She has recently been diagnosed with Mild Cerebral Palsy. Despite this diagnosis, we have been advised that her Cerebral Palsy does not currently warrant additional NDIS funding because the impacts are not considered sufficiently significant.

e story is one of resilience and determination. Before becoming part of our family, she experienced significant adversity and trauma in her early years. We welcomed into our home as a foster child and, three years to the day after she first came to live- with us, we were privileged to adopt her. She has overcome challenges that most - children her age would never have to face, while also managing the impacts of Childhood Aprazia of Speech and Cerebral Palsy.

Like many children who have experienced early trauma, has had to work incredibly hard to achieve milestones that other children often take for granted. The support, thearpies, stability, and opportunities she has received have played a critical role in - helping her develop, participate in everyday life, and build confidence in herself and her abilities.

This decision is difficult to understand because Cerebral Palsy is a lifelong neurological condition that does not disappear. The fact that condition is currently classified as “mild” is largely due to the therapies, interventions, and support she has already received. Denying support because a child has not yet deteriorated enough creates a - system that waits for problems to become worse before assistance is provided.

The NDIS should be focused on prevention and early intervention, not crisis management.

As an example, also has asthma and takes preventative medication every day. The purpose of that medication is not because she is having a severe asthma attack every day. It is prescribed to prevent deterioration, reduce complications, and help her remain - healthy and active.

The same principle should apply to disability supports.

  currently receives no therapy and specialist intervention to address the impacts of

her Cerebral Palsy. Although professionals have identified issues including muscle-

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tightness and difficulties that affect her movement. Without appropriate intervention such as physiotherapy, stretching programs, casting, and other therapeutic supports, these issues may worsen over time.

For example, if muscle tightness is not appropriately managed, may lose the ability to achieve adequate heel strike when walking. This can affect her gait, mobility, balance, participation in activities, and long-term physical health. If early intervention is - ot provided, she may ultimately require more invasive and costly treatments, including surgery, to correct issues that could have been better managed through earlier support.

This raises an important question: Why would we deny funding for preventative therapies that help maintain function today, only to potentially fund more intensive and expensive interventions later?

The current approach appears to place too much emphasis on a person’s current level of impairment rather than considering the future consequences of withholding support.

Children with disability should not have to wait until their condition significantly worsens before they qualify for assistance.

The impacts of these decisions extend beyond the individual child. Families often become responsible for filling the gaps left by inadequate supports. Parents reduce working hours, take leave from employment, attend appointments, provide home- based therapy, advocate through complex systems, and absorb significant financial costs.

In our family’s case, we want to have every opportunity to participate fully in school, community activities, friendships, and family life. Early intervention gives her the best chance of achieving independence and reducing future support needs. For a - child who has already overcome significant adversity, these opportunities are even more important. Every gain she makes through therapy and support strengthens her ability to lead an independent, fulfilling life.

I am also concerned about maintaining strong review and appeal rights within the NDIS.

No decision-making system is perfect. Families must always have accessible, transparent, and meaningful avenues to seek reviews of decisions they believe are incorrect or do not adequately consider the evidence provided.

Review processes are essential safeguards that help ensure decisions are fair, consistent, and accountable. Families should never feel that they have exhausted all options simply because an initial decision has been made.

In case, despite a formal diagnosis of Cerebral Palsy, we have been left trying to prove that her disability affects her enough to deserve support. Families should not

• have to wait until a child deteriorates or loses function before they can access assistance or have a decision reconsidered.

For many families, review rights are the only mechanism available to ensure that individual circumstances are properly understood and considered.

I respectfully urge the Senate to:

- Protect access to early intervention supports for children and adults with
     disability.

- Ensure funding decisions consider future risks and preventative outcomes, not
    solely current functional impairment.

- Recognise that "mild" disabilities can still have substantial impacts on
    participation, independence, and quality of life.

- Maintain strong, accessible, and transparent review and appeal pathways for all
  NDIS decisions.

- Avoid reforms that prioritise short-term cost savings over long-term outcomes for
   people with disability.

- Recognise that investment in therapy and support today can reduce future costs
   associated with intensive interventions, hospitalisation, surgery, and increased
   care needs.

The NDIS was created to invest in the lives and futures of Australians with disability. Decisions should not be driven solely by what support costs today, but by what support can achieve over a person’s lifetime.

Families like ours are not asking for luxury or unnecessary services. We are asking for the opportunity to provide our children with the support they need to reach their potential, maintain their independence, and avoid preventable deterioration.

The cost of early intervention should never be viewed in isolation. The real question is what it will cost individuals, families, communities, and governments if that support is not provided.

Thank you for considering my submission and for taking into account the lived experiences of families like ours when considering reforms to the NDIS.

Yours sincerely,

Parent and Advocate