Submission 582
24th May 2026
NDIS Future Generations Bill 2026 Submission
To the Senate Community Affairs Committee,
My name is I am the parent of a 10 year old daughter, , with a rare genetic syndrome - Vulto Van Silfhout De Vries Syndrome, profound autism, epilepsy, and who is non-verbal. Our family relies on the NDISto provide the support- necessary for her safety, wellbeing, development, and quality of life.
I am deeply concerned about aspects of the NDIS Future Generations Bill 2026, particularly proposed Section 34A and expanded Ministerial powers relating to participant funding, proposed Section 94A including extended response periods of up to 91 days, reductions in independent review and appeal rights, and the proposed reductions to social and community participation supports from October 2026.
Our family spent two years in the Administrative Review Tribunal process trying to secure appropriate supports for our daughter. Despite extensive evidence from specialists and therapists, her NDIS supports were reduced by approximately 70%, forcing us into a long and exhausting legal process simply to access supports that professionals consistently stated were reasonable and necessary.
During the Tribunal process, NDIA lawyers changed frequently, deadlines were repeatedly missed, and the NDIA even received a formal notice of non-compliance from the Tribunal. A Functional Capacity Assessment outlining her overwhelming support needs was not properly considered until we pursued formal review through the ART.
In the end, our daughter was awarded the supports that specialists and therapists had recommended all along. This raises serious concerns about accountability within a system where families must endure years of stress, uncertainty, and legal processes simply to have expert evidence properly considered.
My family’s experience also raises serious concerns regarding proposed Section 34A and expanded powers to reduce or vary participant funding without adequate safeguards or accessible review pathways. When supports can be significantly reduced despite strong professional evidence, independent review mechanisms become essential protections for vulnerable participants and their families.
Our experience was later publicly highlighted in an article discussing the barriers families face when appealing NDIS decisions:
Submission 582
https://lsc.sa.gov.au/cb_pages/news/IttookatribunaltogetanSA9-year-- – —– ———–– oldfundingfromNDIS.php
This experience leaves me deeply concerned about proposed Section 94A, including extended response periods of up to 91 days and reduced opportunities for timely independent review. The NDIA is already struggling to meet deadlines and comply with tribunal processes.
If the NDIA is already struggling to meet deadlines and comply with tribunal obligations under the current framework, I am deeply concerned about how vulnerable participants will be protected if funding is reduced and meaningful pathways for independent review are removed or limited.
When a participant’s funding is significantly reduced, there must be an accessible pathway for independent review. Families caring for highly vulnerable children cannot simply absorb the consequences of incorrect decisions while waiting months for responses or navigating systems with reduced accountability.
I am also deeply concerned about the proposed 50% reduction to social and community participation funding from October 2026. Because of the severity of our daughter’s disabilities, she cannot attend school consistently and only attends for short periods when able. This creates profound isolation for both her and our family.
For participants with profound disabilities who already experience significant isolation, these supports are not optional social activities — they are essential for communication, regulation, safety, daily functioning, emotional wellbeing, and connection to community life.
Support workers are not “extras” or luxuries for our daughter. They are essential for her communication, safety, regulation, wellbeing, and participation in the community. Her support workers act as communication partners using her PODD communication system, help her regulate emotionally and physically, assist with bathing, dressing, hygiene, and continence care as she is still in nappies, and enable her to safely access the community and participate in daily life.
Without these supports, isolation increases and both her quality of life and long-term development are significantly impacted.
Given our experience, I am also concerned about proposals involving tougher reassessment processes and reduced review rights. Families should not face the risk of losing essential supports without fair procedural safeguards and meaningful access to independent review.
Submission 582
I understand the need for the NDIS to be sustainable and financially responsible. However, families caring for people with significant disabilities are already fighting extremely hard to obtain supports that overwhelming evidence demonstrates are necessary. I fear this Bill risks reducing accountability while making it harder for vulnerable Australians to access fair decisions and independent review.
I ask the Committee to recommend:
-
Retaining strong independent appeal and review rights for participants.
-
Amending provisions such as Sections 34A and 94A to ensure accountability, procedural fairness, timely decisions, and meaningful review pathways for decisions affecting participant supports.
-
Protecting participants from significant funding reductions without independent review.
-
Protecting social and community participation supports for people with profound disability.
-
Ensuring evidence from treating professionals and Functional Capacity Assessments is properly considered before decisions are made.
Thank you for considering our family’s experience and concerns.