NDIA Accountability Project

Impact of NDIS changes on family caring for child with complex needs

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Submission 1654

Submission to the Senate Community Affairs LegislaƟon CommiƩee

Inquiry into the NaƟonal Disability Insurance Scheme Amendment (Securing the NDS for Future GeneraƟons) Bill 2026

Submission from: Anonymous (Queensland)

Request: Please publish this submission without idenƟfying details.

  1. IntroducƟon I am a parent in Queensland of two NDIS parƟcipants. Both plans are Plan Managed. My family transiƟoned to the NDIS following the disbanding of Disability Services Queensland. One of my children has a diagnosed, life-long, incurable condiƟon with high and complex support needs. I am making this submission to outline the real-world impacts that the proposed changes in this Bill may have on families like mine.

  2. The reality of care and system burden The NDIS supplements care - it does not replace the role of families. Even with an improved plan, we conƟnue to provide extensive unpaid care every day. AŌer years of advocacy and negoƟaƟons for appropriate support, my husband required stress leave from work due to the pressure. Over Ɵme, we have obtained countless reports, funcƟonal capacity assessments and supporƟng documentaƟon - to the point where I have lost count. This ongoing requirement is emoƟonally exhausƟng and unnecessary expense on NDIS funding. The impact on our employment has been substanƟal. My husband took a lower-paid posiƟon to allow him to work from home and support our caring responsibiliƟes. Our most recent plan review took 6 months. During this period, we lived with prolonged uncertainty.

  3. Reducing funding for community parƟcipaƟon The proposed ability to reduce funding for groups of supports, including social and community parƟcipaƟon, is deeply concerning. Community parƟcipaƟon is not opƟonal - it is essenƟal to safety, wellbeing and quality of life. Support workers currently:

  • Enable safe parƟcipaƟon in the community
  • Reduce the risk of absconding
  • Support engagement in meaningful acƟviƟies
  • Allow parƟcipaƟon in family events, with safe exit opƟons when overwhelmed
  • Provide some independence from parents

Support workers also allow me to maintain full-Ɵme employment and reduce the level of burnout within our family. Without these supports, our child would become isolated and fully dependent on exhausted parents. This would reverse years of progress and significantly increase risks.

  1. Changes to “reasonable and necessary” supports “Reasonable and necessary” has always been a requirement in the NDIS. Any narrowing of its scope risks reducing access to essenƟal supports. Families are already required to provide extensive evidence of need. Further Ɵghtening may increase administraƟve burden and funding costs - without improving outcomes.

Submission 1654

Greater expectaƟons on families

Reducing supports does not reduce need — it shiŌs responsibility onto families. If supports were reduced:

  • One parent would likely need to leave the workforce
  • Financial stress would increase
  • Mental health would deteriorate significantly This is not a saving to the system. It simply transfers cost and impact to families already under extreme pressure.

FuncƟonal capacity assessments

Our family has experienced numerous funcƟonal capacity assessments over many years. Each Ɵme, we are required to revisit and document the most distressing aspects of our lives. This process is exhausƟng and oŌen duplicaƟve, parƟcularly where disability is lifelong and well established. An increased reliance on assessments risks increasing administraƟve burden without adding meaningful understanding.

Automated decision-makingnThe introducƟon of automated decision-making is extremely concerning.

Disability support decisions require human judgement. They involve nuanced understanding of behaviour, safety risks, daily paƩerns and environmental factors. Automated systems cannot accurately capture these realiƟes. Decisions that affect safety, independence and wellbeing must involve human oversight.

Plan reassessments and instability

Frequent reviews and extended decision-making Ɵmelines create instability for families. If plans were sufficient and appropriate, repeated reassessments would be less necessary. Instead, families are caught in cycles of uncertainty, advocacy and delay. ConƟnuity and stability should be prioriƟsed, parƟcularly for those with complex needs.

Compliance and administraƟve burden

While prevenƟng fraud is important, increased compliance requirements risk placing addiƟonal strain on unpaid carers. Families should not be expected to take on complex administraƟve responsibiliƟes under the threat of penalƟes. This adds unnecessary stress to already demanding caregiving roles.

Real-life consequences

The risks associated with insufficient support are real. In one incident, my child leŌ our home when a door was inadvertently leŌ open and walked approximately 2 kilometres, including across a busy motorway. Police were involved aŌer a concerned motorist reported a pedestrian in distress. Fortunately, they were found alive, though with injuries. This highlights the level of supervision required, above and beyond what would typically be expected. Even now, with improved supports, our family conƟnues to provide substanƟal supervision. Support workers reduce, but do not eliminate, this risk.

Submission 1654

11) What needs to be understood

The life of a parent caring for a child with ongoing, complex needs does not follow the expected path. There is no transiƟon to independence. There is ongoing care, constant vigilance, and long-term responsibility. A key concern is the future — when families are no longer able to provide care. At that point, individuals rely enƟrely on the system. If that system prioriƟses cost over care, the consequences will be catastrophic.

12) PracƟcal cost-saving alternaƟves

There are ways to improve sustainability without reducing essenƟal supports:

  • Stop repeated assessments for lifelong disabiliƟes
    • Once a condiƟon is clearly permanent, families should not be required to repeatedly prove it.
  • Ensure human oversight in decision-making
    • This reduces errors, inappropriate decisions and costly disputes.
  • Increase scruƟny of provider pricing and profit margins
    • Greater accountability is needed around costs of services, products and consumables.
  • Strengthen the Quality and Safeguards Commission
    • It should be more effecƟve in addressing exploitaƟon and fraud where it actually occurs.

Vulnerable people rely on the system to sustain their lives — not to generate excessive profits.

13) RecommendaƟons

I respecƞully recommend that the CommiƩee:

  • Protect funding for community parƟcipaƟon supports
  • Maintain a broad, funcƟonal approach to “reasonable and necessary”
  • Avoid shiŌing responsibility onto unpaid carers
  • Reduce reliance on repeated assessments
  • Require human oversight of decision-making
  • Improve plan stability and conƟnuity
  • Ensure compliance measures do not overburden families
  • Address rising costs through system reform, not support reducƟon

Conclusion

I support a sustainable NDIS. However, sustainability must not come at the cost of safety, dignity, and wellbeing. Reducing supports or shiŌing burden onto families will not strengthen the system — it will place vulnerable individuals at greater risk. I urge the CommiƩee to ensure that reforms protect those who depend on the NDIS most.