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

Submission 3748

Whom It May Concern,

I am writing as a solo mother and full-time carer to my 12-year-old daughter, who lives with a severe intellectual disability and significant physical disabilities. She is non-verbal, has severe expressive and receptive communication delays, major fine motor delays, eating and weight difficulties, sleep difficulties, and a complex medical history. She requires constant supervision and support for all daily living tasks.

While my daughter can walk short distances on flat and stable surfaces, she is extremely unstable and relies on a wheelchair for anything beyond this. She requires support with every aspect of daily life including personal care, mobility, emotional regulation, safety, communication, and participation in the community.

The NDIS currently provides essential supports that allow my daughter to have quality of life, social connection, and opportunities to build skills. Her support workers assist with all daily living tasks as well as community access activities. These supports are not “extras” — they are absolutely necessary. Through community participation, my daughter experiences happiness, emotional connection, routine, and social inclusion. These are the times where she is at her absolute happiest and, importantly, where she makes the greatest gains in communication, confidence, independence, and emotional wellbeing.

Without these supports, both my daughter’s wellbeing and mine would deteriorate significantly.

As a sole parent and carer, I experience ongoing carer burnout, stress, anxiety, and depression. My own physical wellbeing has also been impacted by the constant demands of caring responsibilities. The supports funded through the NDIS are essential not only for my daughter, but also for ensuring I can continue caring for her safely and sustainably. Without adequate supports, families like ours reach crisis point. Please take into consideration a family like the Clune family in Perth, simply devastating.

I am deeply concerned about the proposed changes to the NDIS Act.

I do not believe the changes have been explained clearly enough, particularly for families already under enormous pressure managing complex disability and care needs. Many carers are overwhelmed, exhausted, and trying to navigate systems that are already incredibly difficult and stressful. The uncertainty surrounding these changes is causing significant fear and anxiety within the disability community.

I am especially concerned about any reduction to social, community, or capacity-building supports. These supports are often misunderstood as optional, when in reality they are critical for development, emotional wellbeing, social connection, independence, and quality of life. Removing or reducing these supports would isolate my daughter, reduce her opportunities to develop skills, negatively impact her mental health, and place even greater pressure on me as her sole carer.

If my daughter had never had access to these supports, or if they were taken away, her development and quality of life would be severely impacted. Our family would become increasingly isolated and overwhelmed.

I am also extremely concerned about the proposed changes to how “permanence” is defined under the NDIS.

My daughter’s disabilities are lifelong and severe. The suggestion that families may be expected to pursue every available treatment before being considered eligible is unrealistic, distressing, and unfair. Many treatments are unaffordable, inaccessible, unavailable in regional areas, or simply inappropriate.

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

Submission 3748

Families should not be forced into endless assessments, therapies, or medical interventions to “prove” permanence when the reality of lifelong disability is already clear.

Families caring for children with profound and permanent disabilities already spend enormous amounts of money on reports and assessments for each NDIS review. In our case, multiple specialist reports (required by the NDIS) are required every review period, costing thousands of dollars each time, often then told these aren’t enough and more money must be spent to get more assessments and reports done.This places additional financial and emotional strain on families who are already under significant pressure.THIS is what needs to be looked at as a way to save money!!!!

I strongly urge the government to ensure that any changes to the legislation do not further disadvantage people with profound disabilities or place additional burdens on exhausted carers and families. If these changes go ahead YOU will be responsible for the safety and well being of the lives of participants and their families.

People with severe and permanent disabilities deserve dignity, stability, support, and inclusion — not increased uncertainty and barriers to accessing essential supports.

Thank you for considering my submission.

Sincerely,