NDIA Accountability Project

Father outlines concerns regarding cuts to social participation funding impacting daughter with Angelman Syndrome

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

Submission 1959

I am the father of a 25-year-old woman who has Angelman Syndrome. She is an NDIS participant who, due to her disability, requires support 24 hours a day. She cannot speak, read, write, walk up stairs, walk unsupported without trip-risk, sleep through the night, do most of the self-care functions of daily life or maintain her own safety.

I am writing about the NDIS Future Generations Bill 2026. I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.

I’m asking you to vote against the Bill unless it’s substantially amended.

Why this bill matters to me:

The 50% cut to social and community participation funding limits from October 2026. 3 years ago my daughter’s NDIS plan was substantially reduced allocating her only 6 hours per week of social & community support for her to have personal care supports when out in the community. This meant that, as she is unable to be left unattended for even 5 minutes while she is awake, my wife or I would have had to relinquish our employment to be at home to support her and take her out into the community to maintain entertainment, relationships in the community and friendships. We took the plan to the AAT and after 9 months of case conferences and hearings (and goodness knows how much money on external lawyers to represent the NDIA at the various conferences and hearings) the plan was reviewed more appropriately and Community participation funding was restored which (with careful financial management by us) has enabled her to engage in the community in a fulfilling way. This is the difference between societal isolation for her and also for her 65-year-old parents’ ability to continue their rewarding & gainful employment. This was the intent of the Productivity Commission Report 2011 which led to the implementation of the NDIS by the Labor government! If her current Social & Community Participation supports are now cut by 50% across the board we will have no choice but to move forward our plans for her moving out of the family home and rapidly expedite our application for NDIS Home and Living support funding which will cost the scheme $500,000 -$600,000 per year to support her to live her outside of the family home, as well as an allocation of Community Participation funding , so that she is not ‘sitting around all day at home’ in a group living environment.

I would strongly recommend that no reductions to community participation or capacity building supports take effect at least until alternative foundational supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.

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

Submission 1959

I am also deeply concerned about:

  • The Minister’s new power to cut funding without appeal (s 34A). This seems to give the Minister god-like powers, without and avenue of appeal for participants or their carers.
  • The new functional capacity test and the proposed 2028 onwards reassessment of everyone, using a new tool and administered by minimally trained officers - not a professionally qualified OT.
  • The tougher unscheduled reassessment rules and the loss of review rights.
  • Automated decisions and algorithms with no individual appeal.
  • Changes so that the written amount of funding in the plan will not accurately represent the real amount of reduced funding allocated to spend.
  • The Minister’s ability to reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories.
  • Unspent funds will no longer carrying over at plan renewal (Schedule 1 Part 5).

How these affect participants: A participant’s social & community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.

I also strongly recommend that the NDIA DO NOT proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability.

If this information is published please only use my first name.

Cheers