Submission to the Senate Standing Committee on Community Affairs
I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am a mother and the full-time primary carer of a child with permanent and significant disability.
I write with deep concern about the harm this Amendment Bill could cause if it is passed in its current form. As a parent, I see every day how essential the NDIS is to my child’s safety, wellbeing, and ability to live with dignity. I believe the Bill is too far-reaching and requires substantially greater scrutiny before Parliament considers its passage. Many of the proposed changes remove safeguards that families like mine rely upon to care for our children and support them to live as independently as possible.
Parliamentary Scrutiny and Transparency
The consultation period for this Amendment Bill is only two weeks. This is far too short to allow meaningful consultation with families living with disability.
Participating in consultations is extremely difficult for our household. My child experiences severe cognitive fatigue, memory impairment, communication difficulties and debilitating photophobia, making it difficult for them to engage with lengthy documents or screens. As their mother, I must review information slowly over many days and translate complex material into something they can understand, all while balancing work and intensive caring responsibilities. A two-week consultation period effectively excludes families like ours from having a voice in decisions that directly affect our children’s lives.
Recommendation: Amend the consultation period to a minimum of 30 days in line with best-practice consultation standards.
Key decisions left to ministerial instruments, not law
The Bill would allow Ministers to determine eligibility criteria and funding levels through legislative instruments rather than primary legislation.
This creates significant uncertainty for families like mine who rely on the NDIS to support our children. My child depends on these supports to remain safe at home and maintain their health and wellbeing. Decisions about eligibility and access to essential supports should be made transparently through Parliament, not through instruments that can be changed without proper scrutiny. Any reduction or reinterpretation of eligibility could have devastating consequences for my child’s safety, independence and future.
Recommendation: Require that all decisions affecting NDIS eligibility and funding be made through primary legislation subject to full Parliamentary scrutiny.
Existing participants face narrower criteria and fewer rights to challenge decisions
The Bill would reduce review rights and make it more difficult for participants to challenge decisions affecting their plans.
My child lives with a complex disability that fluctuates significantly. Some days they are completely bedbound, while on others they can manage only very limited activity before experiencing severe deterioration. If essential supports were reduced or automatically renewed without proper review, vital assistance could be lost even as their needs increase. As a mother, the thought of losing the ability to challenge decisions that affect my child’s care is deeply distressing.
Recommendation: Introduce a “no harm” safeguard to ensure participants do not lose supports without equivalent alternatives and preserve independent review rights.
Unreviewable ministerial power to cut funding across all support categories
The Bill would allow funding reductions across support categories without review rights and remove the ability to carry over unspent funds between plans.
The supports my child relies on require careful planning because of the complexity and unpredictability of their disability. Specialist equipment, assistive technology and therapies are often expensive and require funding to be saved over multiple plan periods. Removing carry-over provisions or reducing funding without the ability to appeal would put essential supports at risk and could lead to serious declines in my child’s health.
Recommendation: Allow participants to carry forward unspent funds where they are saving for high-cost supports and provide independent review rights before funding reductions occur.
Requirement to exhaust treatment options before eligibility
The Bill proposes that people with disability must exhaust treatment options before becoming eligible for the NDIS.
My child has already undergone years of assessments and treatments with numerous specialists and allied health professionals. Many interventions have provided little benefit, while others have caused side effects or worsened their condition. Despite ongoing medical care, they continue to live with permanent functional impairment that affects every aspect of daily life.
As a mother, it is heartbreaking to see my child repeatedly put through treatments simply to prove eligibility. Disability support should not be withheld until every possible treatment has been exhausted. Medical treatment and disability support serve different purposes, and one should not be conditional on the other.
Recommendation: Remove the requirement to exhaust treatment options before eligibility.
Unvalidated functional capacity assessment tool risks misidentifying need
The proposed assessment framework relies upon a single eligible impairment and the I-CAN assessment tool.
My child’s disability is complex and fluctuating, and it cannot be accurately captured in a single assessment. Their functional capacity varies greatly depending on fatigue, pain, neurological symptoms and sensory overload. A one time assessment risks underestimating their needs, particularly when their disability arises from multiple interacting conditions rather than a single diagnosis.
Assessment tools must reflect how a person functions over time in their real environment, not just during a brief evaluation.
Recommendation: Do not implement I-CAN until it has been independently validated for people with fluctuating, episodic and complex disabilities.
Supports cut before replacement system is ready
The proposed reductions to community participation and capacity-building supports would take effect before Foundational Supports have been established.
These supports are vital for my child’s mental health, social connection and independence. Removing them before alternatives are in place risks increasing isolation and worsening their condition. It also places even greater pressure on families like mine, who are already balancing work with intensive caregiving. The risk of burnout and financial strain is very real.
Recommendation: Delay any reductions to community participation or capacity-building supports until Foundational Supports are fully operational, adequately funded and proven to meet participant needs.
Closing Statement
The NDIS exists to support Australians with permanent and significant disability to live with dignity, independence and safety.
As a mother, I see firsthand how critical these supports are to my child’s life. The changes proposed in this Bill reduce safeguards and increase uncertainty at a time when families like mine need stability and support the most. These changes are not abstract—they directly affect my child’s health, safety and future.
I respectfully ask the Committee to recommend substantial amendments to this Bill to ensure participants retain meaningful review rights, transparent decision-making, appropriate assessment processes and continued access to the supports they rely upon every day.
Thank you for considering this submission.