Submission to the Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
My name is , and I am the mother and full-time carer of my 20-year-old son, ,who lives with Autism Spectrum Disorder (Level 2), ADHD and anxiety.
I support the need to ensure the National Disability Insurance Scheme (NDIS) remains sustainable for
future generations. However, I am concerned that some of the proposed amendments may
unintentionally disadvantage participants with lifelong and significant disabilities, particularly those
whose support needs are not always obvious during short assessments.
’s goal has always been to become as independent as possible. He wants to work, contribute to
society, build meaningful relationships and eventually live independently. These are the very
outcomes the NDIS was established to help people achieve.
Unfortunately, our experience has shown that when essential supports are reduced or delayed,
participants do not become more independent—they often become more anxious, isolated and less
able to participate in everyday life.
One of my concerns is the Bill’s emphasis on assessing a participant’s functional capacity. While
Functional Capacity Assessments are valuable, they must recognise that people with autism often
have fluctuating abilities. may appear capable during a structured assessment or appointment,
but this does not reflect the daily challenges he experiences with emotional regulation, adapting to
change, executive functioning, communication and maintaining employment.
I ask the Committee to ensure that functional capacity is assessed based on a participant’s everyday
life over time, rather than a snapshot of how they present on a single day.
I am also concerned about any further narrowing of what is considered “reasonable and necessary”
support. Capacity-building supports such as mentoring, community participation, employment
assistance and skill development are not optional extras. They are preventative supports that help
people develop independence and reduce the need for more intensive supports in the future.
Our family’s experience demonstrates why this is so important.
Following ’s Functional Capacity Assessment, an experienced allied health professional
identified the disability supports required to meet his ongoing needs and improve his independence.
However, many of these recommended supports were ultimately not funded as “reasonable and
necessary“.
As a result, I made the decision to privately fund those supports because I knew they were essential
for ’s wellbeing, development and future. Over the past two and a half years, I have personally
paid more than $100,000 out of my own pocket to ensure continued receiving the services that
the Functional Capacity Assessment identified as necessary.
As a single parent, this financial burden has been overwhelming. I have made enormous personal
sacrifices because I simply could not allow my son to lose the supports that were helping him build
confidence, participate in his community and prepare for employment.
This demonstrates a broader issue that extends beyond my own family. When evidence-based
recommendations from qualified professionals are not funded, families who have the financial
capacity often feel they have no choice but to pay privately. Families who cannot afford to do so
simply go without. This creates inequity and places participants at risk of losing skills, confidence,
independence and mental wellbeing.
Over the past two and a half years, we have also been involved in lengthy review and appeal
processes. During this period of uncertainty, ’s mental health has noticeably declined. He has
become increasingly anxious, withdrawn and uncertain about his future. He has recently required
ongoing psychological support to help him cope with the emotional impact of these prolonged
processes.
I am concerned that if this Bill results in further restrictions to supports or longer delays in accessing
them, more families will experience similar hardship.
I am also concerned about the increasing expectation that participants access supports through
mainstream services instead of the NDIS. While this may appear appropriate in theory, many
mainstream services already have extensive waiting lists, limited disability expertise or simply cannot
provide the level of specialised support that participants require. Essential NDIS supports should not
be withdrawn based on the assumption that another system will provide them when, in reality, those
services are often unavailable.
For participants involved in reviews or appeals, I strongly encourage the Committee to ensure people
are not left without appropriate supports while waiting for decisions. Review processes should be
timely, transparent and based on evidence provided by treating professionals who know the
participant best.
I also ask the Committee to carefully consider the proposed arrangements for plan renewals.
Participants with permanent disabilities such as autism do not suddenly become less disabled
because a plan reaches its end date. Families should not have to repeatedly prove lifelong disabilities
or experience interruptions to essential supports because of unnecessary administrative processes.
The NDIS has transformed ’s life when he has had access to the right supports. It has enabled
him to gain work experience, develop life skills, participate in his community and work towards greater
independence. These are significant achievements that benefit not only but the wider
community.
I respectfully ask the Committee to ensure that this Bill:
Protects access to reasonable and necessary supports for people with permanent and significant disabilities. Recognises that functional capacity should be assessed in the context of a participant’s everyday life over time. Continues to fund evidence-based capacity-building supports that promote independence, employment and community participation. Does not rely on mainstream services where those services are unavailable or unable to meet participants’ needs. Ensures review and appeal processes are completed promptly so participants are not left without essential supports. Simplifies plan renewal processes for participants with permanent lifelong disabilities.
The NDIS is more than a funding scheme. It is an investment in the lives of Australians with disability
and their families. Sustainability is important, but it should never come at the expense of people who
rely on these supports to participate in society and live meaningful, independent lives.
I hope the Committee carefully considers the real-life impact these proposed changes may have on
participants and families like ours.
Thank you for taking the time to consider my submission.