To: Senate Community Affairs Legislation Committee
Re: Getting the NDIS Back on Track No. 2) Bill 2025
PRELIMINARY STATEMENT
I am an NDIS participant living with Lumbar Sacral Agenisis, a congenital spinal condition present from birth that causes permanent, irreversible impairment to mobility, neurological function, and continence. I have managed this condition across my lifetime within the NSW health and disability system. I submit this in my capacity as a current NDIS participant whose funded supports are directly and materially threatened by the provisions of this Bill.
- THE BILL IS DISCRIMINATORY ON ITS FACE The proposed amendments to sections 32K(3B)–(3C) and 33(2EA)–(2EB) would replace funding determined by individual assessed need with funding determined by generalised needs tiers. For participants with rare, complex, or medically specific conditions — including lumbosacral agenesis — no generalised tier can replicate an individual assessment. The effect is not administrative efficiency. The effect is the systematic underfunding of people whose conditions do not fit a statistical average.
This constitutes direct discrimination under section 5 of the Disability Discrimination Act 1992 (Cth). It treats disabled people less favourably than non-disabled people in the allocation of supports necessary for equivalent participation in life. The proposed s 25B compounds this by permitting the Minister to exclude cohorts of participants without prior public disclosure of who those cohorts are. That is not a policy mechanism. It is a power to discriminate without accountability.
- MEDICAL CARE IS BEING RATIONED WITHOUT MEDICAL AUTHORITY The supports I require are not lifestyle supports. They are medically necessitated by a congenital condition that affects multiple organ systems and requires ongoing clinical management. The NDIS, as currently operating, already frequently substitutes administrative decisions for clinical assessments. This Bill structurally entrenches that substitution by enabling ministerial rules to cap support intensity and worker-to-participant ratios — including the abolition of 1:1 support — without reference to any treating medical team.
No competent clinical framework permits the rationing of medically indicated support through generalised administrative tiers. The Bill
proposes precisely this. It places bureaucratic authority above clinical authority in determining what a disabled person’s body requires. For participants with complex congenital conditions, this is not a funding question. It is a question of whether their lives will be adequately supported or whether they will be exposed to preventable deterioration, hospitalisation, and harm.
- THE HUMAN RIGHTS FRAMEWORK IS NOT OPTIONAL Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Article 19 guarantees the right to live independently and to be included in the community with support services responsive to individual need. Article 25 guarantees the right to health without discrimination on the basis of disability. The proposed amendments are incompatible with both articles. Generalised tier funding, caps on intensity, and ministerial exclusion powers collectively withdraw the individual assessment framework that makes CRPD compliance possible.
The Committee should further note that the Human Rights (Parliamentary Scrutiny) Act 2011 (Cth) requires this Bill to be assessed against Australia’s international human rights obligations. A Bill that enables funding reductions of up to 99.9% for individual supports, removes 241,000 participants from the scheme, and grants unilateral ministerial power to exclude cohorts without parliamentary scrutiny cannot be said to be compatible with those obligations without a statement of reasons that this submission submits has not been
- THE STRUCTURAL RISK IS IRREVERSIBLE FOR PARTICIPANTS AT THE
COMPLEX END
Participants with permanent, progressive, or medically complex conditions cannot tolerate iterative policy experimentation. Lumbosacral agenesis is not a condition that improves with reduced support. It is a condition that requires consistent, clinically informed, individually tailored supports to prevent secondary complications. Removing or capping those supports does not save public money in any medium-term frame. It transfers cost from the NDIS to the hospital system, to emergency services, and to families — while inflicting preventable harm on the person.
The Bill does not include any mechanism to assess harm at the individual level before ministerial rules take effect. It does not require clinical sign-off. It does not require a human rights impact assessment. It does not provide for participant review before support reductions are applied. These omissions are not oversights. They are the architecture of a system that has chosen fiscal targets over human outcomes.
- SUBMISSION REQUEST The Committee is respectfully urged to:
(a) Recommend the removal of proposed s 25B in its entirety, as it enables cohort exclusion without transparency or parliamentary scrutiny;
(b) Recommend the removal of proposed ss 33(2EA)–(2EB) provisions enabling funding reductions by ministerial rule, including the 99.9% reduction mechanism;
(c) Recommend the removal of proposed ss 32K(3B)–(3C) replacing individual needs assessment with generalised tier funding;
(d) Require that any future amendment affecting support levels be subject to independent clinical assessment requirements and mandatory human rights impact analysis prior to implementation;
(e) Acknowledge formally in the Committee report that participants with rare congenital and complex medical conditions are disproportionately harmed by generalised tier models and that no Bill proceeding without an adequate response to this disparity is compatible with Australia’s CRPD obligations.
The NDIS was legislated because the market and the hospital system had both failed disabled people. This Bill proposes to return disabled people to those same failed systems under administrative cover. I ask the Committee to prevent that outcome.
Submitted by:
Emily Hornby
NDIS Participant — Lumbar Sacral Agenesis
Western Sydney,
8 June 2026