NDIA Accountability Project

Son's disability and PFAS contamination impacting family safety

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Submission to the Senate Community

Affairs Legislation Committee

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

Submitted by

Parent, Plenary Guardian and Primary Carer of

Related context: Senate Inquiry into PFAS Contamination in Australia (Submission No. 4, submitted under the pseudonym “Liam” to protect “’s privacy)

July 2026

Purpose of this Submission

This submission explains why reforms to secure the long-term sustainability of the NDIS must preserve flexibility for participants with the highest and most complex support needs. It is based on my family’s lived experience caring for my son,

1. Executive Summary

I support making the NDIS sustainable. It has changed lives, including ours. However, I am concerned that, in seeking to ensure the Scheme’s sustainability, we may unintentionally make it more difficult for people with the most complex disabilities to access the supports they genuinely need. My son is autistic, non-verbal, has a profound intellectual disability and severe PICA. We also live on a property confirmed to be contaminated with PFAS (‘forever chemicals’). ’s disability and our environment have collided in a way no standard funding model could ever predict. This submission asks the Committee to ensure the legislation retains sufficient flexibility to respond to families experiencing extraordinary circumstances.

2. My Family and ’s Reality

My name is and I am ’s mother. is 19 years old. He cannot tell us when he is in pain, cannot tell us when he feels unwell, does not understand danger and relies on other people every minute of every day to keep him safe. has severe PICA. He does not choose to eat soil, bark, leaves or grass. These behaviours are part of his disability.

3. When Disability and Environmental Disaster Collide

For years our family worked incredibly hard to create the best life we could for . My husband and I sold our home. My mother sold hers. We moved in together so we could pool our resources and buy a property where would have space to be outdoors safely. Then we discovered the property was contaminated with PFAS. Everything changed. The soil, bark, grass, puddles and hose water is drawn to because of his disability may expose him to toxic chemicals. Our safe place no longer feels safe.

4. What Life Really Looks Like

   needs line-of-sight supervision all day, every day. We receive around 50 hours of support each week. I also work around 40 hours each week because our electricity, food and bills do not stop because we have a son with a profound disability; in fact, they are higher. Outside of work, I cook, clean, wash clothes, organise appointments, complete extensive paperwork, manage support workers, communicate with therapists and continue caring for            . There are no weekends, no days off and no sick days.

5. My Concerns About the Proposed Changes

Every person living with disability is different.

cannot be supported by comparing him to an average participant with autism. Every recommendation about ’s care has come from professionals who have worked with him over many years. Families should not have to fight for that evidence to be recognised. The legislation must leave room for people whose lives are more complex than any framework can anticipate.

6. Recommendations

  1. Preserve genuinely individualised decision-making.
  2. Recognise environmental hazards that increase disability-related risks.
  3. Allow rapid increases in supports during exceptional circumstances.
  4. Give proper weight to multidisciplinary clinical evidence and require clear written reasons whenever that evidence is not followed.
  5. Recognise long-term family carers as expert partners.

7. Conclusion

    has one life. He deserves to be safe. He deserves to enjoy being outside without every moment

being filled with fear, especially as he is at home full-time and unable to access the community. He deserves decisions that are based on who he is, not on what works for the average participant. I respectfully ask the Committee to ensure that, in securing the future of the NDIS, it also secures a future for participants like —people whose safety, dignity and quality of life depend on the Scheme recognising them as individuals. Thank you for taking the time to read our family’s story and for considering my submission.

Appendix – Supporting Evidence Available

-Behaviour Support Plan -Risk Management Plan -Escalation Profile -Clinical reports and therapist letters -PFAS laboratory reports -Related Senate PFAS submission (No. 4 – ‘Liam’)

Rebecca O’Brien | Senate Submission Page 4