Impact of reforms on daughter with autism, executive functioning, social communication, emotional regulation, and functional living challenges (Family or carer experience)

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Submission 682

Submission Regarding the Impact of Proposed NDIS Reforms on People with Disability, Families, and

Regional Communities

To the Senate Committee and Relevant Federal Representatives,

My name is . I am writing this submission as: a mother of two neurodivergent children who are

NDIS participants, the daughter of a woman living with a significant neurological disability, a regional

Tasmanian resident, and a longstanding staff member within the National Disability Insurance Agency. I

wish to make clear from the outset that I support the need for genuine NDIS reform.

Those of us working within and alongside the Scheme have understood for years that reform is necessary

to ensure long-term sustainability, consistency, accountability, and equity. I understand the financial

pressures facing the Scheme and the importance of ensuring the NDIS remains viable for future

generations, including for my own son, who will likely require support across his lifetime.

However, sustainability cannot come at the cost of humanity.

I am deeply concerned that aspects of the proposed reforms risk fundamentally narrowing the lives of

people with disability by reducing the very supports that allow individuals to participate in ordinary life, build

independence, maintain connection to community, and reduce future crisis costs.

The current direction of reform appears to be impacting participants from multiple angles simultaneously:

reducing funding, tightening access to supports, narrowing interpretations of what is considered reasonable

and necessary, and reducing participant flexibility regarding the providers they can engage. While each

measure may appear manageable in isolation, the combined effect on vulnerable people and families is

potentially devastating.

My daughter lives with autism and significant executive functioning, social communication, emotional

regulation, and functional living challenges. Since transitioning to high school, she has experienced severe

bullying, social exclusion, anxiety, and increasing social isolation.

The supports she receives are not luxuries or conveniences. They are the supports that teach her how to

regulate emotions, safely navigate relationships, participate in the community, manage daily functioning,

and gradually build independence.

Without these supports, children like my daughter do not simply “cope less well.” They become increasingly

isolated, vulnerable, anxious, disengaged from education, and at far greater risk of long-term mental health

decline and dependency.

Submission 682

My son also lives with autism and significant functional challenges. Our family’s goal has never been to

create dependence on the Scheme. In fact, every support we pursue is specifically aimed at reducing

future reliance on intensive systems.

Our long-term goal is independence.

We want our son to develop the practical daily living, communication, emotional regulation, safety

awareness, and community participation skills required to live as independently as possible in adulthood,

rather than eventually requiring higher-cost crisis supports or supported accommodation.

That outcome is only possible through early, targeted, relationship-based capacity building supports now.

Reducing these supports during childhood may reduce short-term expenditure figures, but it risks

significantly increasing long-term social and financial costs in the future.

I also write as the daughter of a woman living with a significant neurological disability. My mother worked,

contributed, paid taxes, raised a family, and participated actively in her community throughout her life.

Like many ageing Australians with disability, she now faces increasing barriers to maintaining social

connection, participation, independence, and dignity.

When supports are reduced or become inaccessible, the impact is not merely financial. It results in

isolation, declining mental wellbeing, loss of community participation, increased dependence, and reduced

quality of life for people who have contributed to society for decades.

Regional families face even greater disadvantage.

In Tasmania, access to therapists, disability supports, specialists, transport services, and community

programs is already significantly limited compared to metropolitan areas. Families often travel long

distances, experience lengthy waitlists, accept reduced provider choice, and pay higher effective costs

simply to access basic services.

Any reforms that further restrict flexibility or provider access without acknowledging these regional realities

will disproportionately harm people living outside major cities.

I fully recognise that the growth trajectory of the NDIS is unsustainable and that reform is necessary.

Submission 682

However, I believe it is critically important that Australia has an honest conversation about how we arrived

at this point.

Over many years, funding and investment in broader disability, advocacy, early intervention, and

community-based supports steadily diminished across multiple systems.

Services that once allowed people with disability to participate in their communities without relying heavily

on funded NDIS supports began disappearing.

Yet public discussion and media coverage increasingly portray people with disability as though they are

personally responsible for “sending Australia broke.”

That narrative is deeply damaging.

I also acknowledge that stronger oversight, safeguards, and accountability mechanisms are necessary

within the Scheme.

However, stronger safeguards and oversight should not automatically translate into removing flexibility,

autonomy, dignity, or participant rights.

There must be balance.

Reform done well could strengthen the NDIS for future generations.

Reform done poorly risks creating a system that is financially tighter, but socially weaker — one that

protects budgets while diminishing the lives, opportunities, and dignity of disabled Australians.

The measure of a society is not simply how efficiently it reduces expenditure. It is how it supports people

when they are vulnerable.

I ask the Senate and Federal Government to ensure these reforms remain evidence-based, balanced, and

centred on long-term human outcomes — not solely short-term financial savings.

Reform must strengthen the Scheme without removing the very supports that allow disabled Australians to

learn, connect, contribute, participate, and live with dignity.

Submission 682

The decisions made now will shape the lives of disabled Australians for generations to come.

Sincerely,

Somerset, Tasmania