Submission 1842
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Introduction
I am the father and primary advocate for my 17-year-old son, , who has autism and receives support through the NDIS. My wife (redacted’s step-mum) and I have spent many years supporting his development, education, health care and participation in the community.
The supports funded through the NDIS have enabled to remain engaged enough in education to complete Year 10, participate in community activities, develop social and emerging life skills, build confidence, access therapeutic supports, and begin laying the foundations for greater independence. None of these achievements have come easily. Each has required significant support, persistence and investment over many years from both our family and the NDIS. While considerable challenges remain, the progress has made demonstrates the importance of ongoing, individualised supports in helping him reach his potential and work towards a more independent future.
Despite the support provided through the NDIS, the majority of ’s day-to-day care, supervision, advocacy and coordination continues to be provided by our family. I support the goal of ensuring the NDIS remains sustainable for future generations. However, I am concerned that some of the proposed changes contained in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 may have unintended and significant consequences for and our family.
This submission focuses solely on how the proposed reforms may affect ’s ability to continue developing the skills, confidence and independence needed for adulthood, and our family’s ability to support him on that journey.
Functional Assessments and Determining Support Needs
One of my concerns relates to the increased use of standardised assessments to determine support needs.
’s autism affects him in ways that are not always apparent during a brief assessment or interaction. He is highly respectful of authority figures and has
Submission 1842
learnt to mask, suppress and internalise much of his anxiety in professional settings in an effort to meet expectations and fit in. As he has grown older, has become increasingly aware of his differences and has a strong desire to be seen as “normal”, despite recognising the significant challenges he faces in everyday life.
As a result, can often appear more capable and independent than he actually is. I am concerned that an assessor who only meets briefly may observe a young person who appears articulate, cooperative and capable, without seeing the significant preparation, support and recovery time required for him to function successfully in that environment.
’s outward presentation in professional settings does not typically reflect the
substantial support he requires behind the scenes. His ability to participate in education, social activities and community settings is generally limited to short periods of one to three hours at a time, after which he often becomes mentally and emotionally exhausted and has difficulty regulating his emotions, generally resulting in meltdowns. Successful participation depends heavily on careful preparation, familiar routines, ongoing support and guidance. Without these supports, activities that may seem manageable on the surface can quickly become overwhelming and lead to significant anxiety and distress.
A standardised assessment may not fully capture the amount of support that requires on a day-to-day basis. My concern is that decisions based primarily on assessment tools could underestimate his actual needs and reduce supports that are critical to his continued development and wellbeing.
I believe any assessment process should place significant weight on evidence from those who know best, including his parents, therapists, treating clinicians and support workers.
Community Participation Supports
Community participation supports have been extremely important for .
These supports are not recreational extras. They provide opportunities for to develop social skills, confidence, independence and community connections. These activities also provide with a sense of belonging, acceptance and connection, which are critical to his self-esteem, confidence and overall wellbeing. Participation in structured activities helps practice skills that many people take for granted, including communication, social interaction and managing unfamiliar situations.
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If access to these supports becomes more restricted, I am concerned that redacted’s
opportunities for growth and independence could be reduced. At a critical stage of his life as
he transitions towards adulthood, maintaining these supports is particularly important.
For redacted community participation funding is an investment in his future independence
and quality of life.
Transition to Adulthood is now 17 years old and approaching a critical stage of life. This year, he was due to commence Year 11. However, after many years of significant challenges at school, including severe anxiety, weekly meltdowns and attendance that never exceeded around 10 hours per week, we made the difficult decision to pause his formal schooling is year. Rather than continuing to focus on an educational pathway that was causing considerable daily distress, we are using this year to concentrate on developing essential life skills that have had to be secondary to the demands of school.
is an extremely intelligent young man with a strong passion for learning. He is a self-
directed learner with a particular interest in subjects such as space and evolution. Our hope is that, with ongoing support from both our family and the NDIS, he will be able to re-engage with education next year, complete his schooling, and ultimately pursue further education or training that leads to meaningful employment and a vocation that matches his strengths, interests and abilities.
As parents, our goal is not simply to support redacted today, but to help him develop the skills,
confidence and independence needed to become an active and contributing member of
society. Decisions relating to education, employment opportunities, independent living skills
and community participation are therefore becoming increasingly important, and the
support he receives during this transition period will have a significant influence on his
future outcomes.
This transition is already creating uncertainty and anxiety for our family. We do not know the
extent to which redacted will be able to live independently in the future, what level of support
he will require, or what opportunities may be available to him. What we do know is that the
supports he receives now will have a significant impact on his future outcomes.
The years immediately before and after leaving school are arguably the most
Submission 1842
important period for investing in skill development, confidence, social connections and
independence. If supports are reduced or become more difficult to access during this period,
there is a significant risk that redacted’s long-term opportunities may be diminished.
Conversely, maintaining appropriate supports now gives him the best chance of achieving
the highest level of independence and participation possible.
As parents, our greatest concern is not simply redacted’s current circumstances but his future.
We want him to have every opportunity to build a meaningful adult life. A life in which he is
able to achieve the greatest level of independence possible and is not solely reliant on family
support, particularly as we are moving into an older, pre-retirement phase of life and know
that we won’t always be able to meet his needs. We believe the NDIS plays a critical role in
helping him achieve that goal.
Impact on Our Family
The proposed reforms also have the potential to increase the caring responsibilities carried by our family.
Although redacted receives NDIS support, the majority of his day-to-day care and support
continues to be provided by my wife and I. We coordinate appointments, manage services,
advocate on his behalf, assist with planning and decision-making, provide transport, and
help him navigate the many challenges associated with autism. Much of this support occurs
behind the scenes and is essential to enabling his participation in everyday activities.
redacted is not yet able to be left at home or in the community independently, even for short
periods of time. Despite our ongoing efforts to gradually build his confidence and
independence, he experiences extreme anxiety and distress when separated from us.
Attempts to trial even very brief periods of independence, for as little as two minutes, have
been met with significant emotional distress. As a result, he currently requires continuous
supervision and support from us or support workers.
While developing greater independence remains one of our primary goals for redacted,
progress in this area requires considerable time, patience, specialist support and careful
planning. The supports provided through the NDIS play a critical role in helping us work
towards that goal and reducing the long-term reliance he may otherwise have on family
care.
As redacted’s full-time carers, it became unsustainable for both my wife and I to continue
working full-time while meeting his support needs. To provide the
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flexibility required to care for my wife reduced her employment to two days per week and accepted a significantly lower-paying casual role. Those two days of work are not only important financially but are also critical for her own mental health, wellbeing and sense of identity outside of her caring responsibilities.
On the days my wife works, I work from home with the support of a currently understanding employer. Even with these arrangements in place, our family has experienced a substantial reduction in income as a direct result of the care we provide to . We also continue to support our two other dependent children, placing further demands on our household resources.
When support systems become more difficult to access, more restrictive, or less flexible, the impact is not absorbed by a government system. It is absorbed by our family. We have already experienced periods where required significant additional support, including following recent major surgery earlier this year. During those periods, it became very clear how much unpaid care is provided by us and how quickly caring responsibilities can become overwhelming.
I am deeply concerned that any reduction in ’s NDIS funding or access to supports could require us to further reduce our participation in paid employment in order to meet his needs. This would place additional pressure on our family’s financial security while also increasing the emotional and physical demands associated with our caring role. Such an outcome would not only affect our ability to manage household expenses but could also have a significant impact on our own health and wellbeing as long-term carers.
Any reduction in supports available to would inevitably increase the level of support required from our family.
Choice and Control
One of the most valuable aspects of the NDIS for has been the ability to access supports that meet his individual needs.
Because autism affects each person differently, finding providers who understand and have developed trusted relationships with him has been important. Consistency and familiarity help him feel comfortable and supported. I am concerned that reforms aimed at increasing efficiency or controlling costs could unintentionally reduce flexibility and make it harder to maintain those important support relationships.
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For , continuity of support is not simply a preference; it is often a key factor in whether a support is successful.
Conclusion
The NDIS has helped access supports that have improved his participation, confidence and quality of life. However, the success of those supports depends on recognising his individual circumstances and needs.
My concern is that some of the proposed reforms may place greater emphasis on standardised processes and cost control while giving insufficient consideration to the realities of ’s daily life and the support provided by our family.
I respectfully ask the Committee to ensure that the implementation of these reforms remains focused on individual circumstances, preserves flexibility in support arrangements, and recognises the critical role that family members play in supporting participants like .
For our family, the NDIS is not simply a funding program. It is a critical partnership that helps build the skills, confidence and independence needed to reach his full potential, contribute meaningfully to society, and achieve the greatest level of independence possible, while allowing us to balance our caring responsibilities, maintain employment, and support the wellbeing of our entire family.