National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Introduction
I am writing to make a submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am a parent of an adult son with Down Syndrome, and I also work in the disability sector. I live on the Central Coast in New South Wales.
My submission is based on my lived experience supporting my son Josh as an NDIS participant and my observations from working in the industry. I am very concerned that the proposed changes, particularly around functional capacity assessments, plan reassessments, funding flexibility and continuity of care, could reduce choice and control, create more stress for families, and push people back onto already stretched mainstream services.
About Me and My Son
I am the parent of an adult son, Josh, who has Down Syndrome. Josh is an NDIS participant. He relies on a range of NDIS supports to live as independently as possible and to participate in his community.
Josh’s current NDIS supports include:
Home and living supports
Support Coordination
Social and community participation supports
Therapy supports
Behaviour support
These supports are not “extras†for Josh. They are what allow him to live with dignity, maintain his independence, and reduce his reliance on family and other service systems.
Current NDIS Supports and Participant Outcomes
Josh’s NDIS supports make a real and practical difference in his daily life:
Home and living support allows him to maintain his independent living. Without this, he would not be able to live as independently and would need to rely heavily on his family for everyday support.
Social and community supports enable him to attend doctors’ and other medical appointments, Special Olympics training and events, his weekly
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
voluntary employment, and social events. These supports make it possible for him to be an active member of his community.
Therapy supports, including physiotherapy, assist with his low muscle tone and help him maintain flexibility and mobility. This directly affects his ability to move around safely and remain as independent as possible.
Behaviour support and therapeutic supports help with emotional regulation and communication, which are essential for his wellbeing and for maintaining relationships and community participation.
Because of these supports, Josh can live as normal a life as possible, without having to depend entirely on his family. His independence, dignity and self‑esteem are directly linked to the NDIS supports in his plan.
If the Bill results in tighter definitions of disability‑related supports or reduced funding flexibility, my concern is that supports like these could be cut or constrained, even though they clearly relate to his disability and functional capacity.
Functional Capacity and Access
All of Josh’s supports work together to reduce the impact of his disability in everyday life. If his functional capacity was assessed without considering the supports, assistive strategies and environment around him, it would give a very misleading picture.
For example:
His home and living supports and informal family support allow him to manage daily tasks, but that does not mean his disability has gone away.
Therapy strategies and ongoing support from workers help him with communication, mobility and emotional regulation. Without these, his disability would be far more disabling in day‑to‑day life.
Environmental supports and structured routines reduce the impact of his disability and enable him to function better in the community.
If the Bill leads to assessments that look only at “how the person appears with all their supports in place†, or that ignore environmental and support factors, Josh could appear more “capable†on paper than he is in reality. This risks him being found ineligible for supports, or having his supports reduced, even though the only reason he is managing is because of the NDIS support he currently receives.
Any changes to functional capacity assessments must:
Take into account the difference between Josh with supports and without supports.
Recognise that assistive technology, therapy strategies, environmental supports and family assistance all mask some of the impact of disability, but do not remove the disability itself.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
How Supports Address Disability‑Related Needs
Josh’s NDIS supports are clearly related to his disability‑specific needs. They are not general community services.
In particular, his:
Social and community supports,
Home and living supports,
Consumables,
Behaviour support, and
Therapeutic supports
all assist with:
Communication
Emotional regulation
Independence
Daily living capacity building
Community participation
Employment and voluntary work
Social connections
Maintaining family relationships
These are core disability‑related needs for a person with Down Syndrome. If future rules tighten what is considered “disability‑related†or “reasonable and necessary†in a narrow way, there is a real risk that some of these essential supports could be labelled as “ordinary living costs†or something that should be provided by another system.
From our experience, other systems are not stepping in to meet these needs. Without NDIS supports, most of these things would simply not happen, or the burden would fall entirely back on family and already stretched mainstream services.
Participant Choice and Control
The NDIS was set up to give people with disability choice and control over their supports. This is one of the most important parts of the Scheme.
For Josh:
He has some long‑term support staff he knows and trusts.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
These trusted relationships are very important for his mental health, sense of safety and confidence.
If he was forced to change providers or lose these workers because of reduced flexibility or tighter funding rules, it would cause him significant stress and anxiety.
Reduced funding or stricter rules about what can be purchased would:
Limit his provider choice.
Make it harder to keep trusted providers who know his history and communication style.
Risk gaps in support, which would impact his participation, communication and independence.
If his supports were reduced, this would not just affect Josh. It would also:
Increase pressure on already limited community resources, such as mental health services, hospitals and public health services.
Force us to rely more on mainstream systems that do not have the capacity or the specialised skills to support someone with his level of need.
Any changes in the Bill that reduce flexibility, choice and control would directly undermine the original purpose of the NDIS and would have serious consequences for people like Josh.
Flexibility When Needs Change and Plan Reassessments
Like any person in society, Josh’s support needs are not fixed. They change over time due to:
Life stresses
Changes in family dynamics
Death or illness in the family
Financial pressures
Illness or burnout in informal supports
In these times, the flexibility in his NDIS plan has been vital. Being able to adjust how supports are used, or increase support in certain areas for a period, has helped us manage difficult times without everything falling apart.
If the Bill introduces stricter reassessment rules or makes it harder to adjust supports when needs change, this would create major challenges. It could:
Delay increases in support during crises or transitions.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
Make it harder to respond quickly to changes in behaviour, mental health, or family circumstances.
Lead to periods where Josh does not have the support he needs, increasing risk and stress for him and our family.
Any changes to plan reassessments and flexibility need to recognise that support needs fluctuate over time and that quick, responsive adjustments are sometimes essential to prevent crises.
Continuity of Care and Trusted Relationships
Continuity of care is critical for Josh.
In our experience:
It is already difficult to find competent clinicians with capacity in our region.
Once we do find someone, it takes time for Josh to build trust, feel safe, and communicate effectively with them.
Changing clinicians or support workers is not just a simple “swap†. It brings:
o Stress and anxiety about the change
o Communication difficulties with unfamiliar people
o Risk of losing progress that has taken a long time to build
The progress Josh makes in areas like emotional regulation, communication and daily living skills develops slowly over time. If supports are interrupted or relationships are constantly changing due to funding cuts, provider changes or rigid rules, much of that progress can be lost.
Any parts of the Bill that risk more frequent changes to providers, or make it easier for supports to be stopped or changed without proper consideration of continuity, will harm people like Josh. Consistency and stability are not optional extras – they are central to good outcomes.
Administration, Evidence Requirements and Ongoing Proof of Disability
Administrative complexity, repeated reassessments and ongoing evidence requirements are a major burden for families.
Josh has a permanent disability – Down Syndrome. It is well known that people with Down Syndrome often experience a decline in cognition as they age. His support needs are lifelong and are likely to increase, not decrease.
Despite this, we are regularly required to provide evidence of the same disability over and over again. This:
Places undue stress on families.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
Takes time and money to gather reports.
Diverts clinicians’ time away from actually providing support.
If the Bill increases the frequency or complexity of reassessments and evidence requirements, especially for permanent lifelong conditions like Down Syndrome, it will:
Add more administrative burden.
Increase stress on families.
Do nothing to change the underlying reality that the disability is permanent and support needs are ongoing.
Any amendments should include clear protections so that people with permanent lifelong disabilities are not repeatedly required to “prove†their disability and basic need for supports.
Regional and Service Access Challenges
Living on the Central Coast, we already face significant access challenges, including:
Waitlists for many providers
Workforce shortages and limited provider options
Travel requirements and costs to reach services
Because of these factors, it is not realistic to say that other systems will “pick up the slack†if NDIS supports are reduced or restricted. In practice, many of these services simply do not exist nearby, or they have long waitlists.
Any changes that narrow what the NDIS will fund, on the assumption that other service systems will provide the support, do not match what we see on the ground.
Access to Other Service Systems
We have also experienced challenges trying to access supports outside the NDIS.
Often, mainstream community services:
Expect that an NDIS‑funded support worker will accompany the person to help them access the service.
Are not set up to support someone with more complex communication or behavioural needs without that extra help.
So while other systems technically exist, they do not meet Josh’s needs without the NDIS supports in place. Removing or reducing NDIS supports on the assumption that mainstream systems will fill the gap is not realistic.
What Government Should Understand
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180
From our experience, there are a few key points government and policymakers need to understand as they consider this Bill:
Progress takes time. For people like Josh, building skills, trust and capacity happens slowly. It cannot be rushed or constantly disrupted without serious consequences.
Consistency matters. Trusted relationships with providers are crucial. Retelling your story over and over to new and inconsistent providers is exhausting and emotionally draining.
Disability support is not one‑size‑fits‑all. Even with the same diagnosis, every person is different. Disability does not fit neatly into one box, and people have the right to be treated as individuals.
Flexibility matters. Support needs change over time due to life events, health changes and family circumstances. Plans and funding need to be flexible enough to respond to these changes.
Trusted relationships matter. Good outcomes rely on stable, ongoing relationships with support workers and clinicians who know the person well.
I also believe that if the NDIS wants to be sustainable, the focus should be on getting plans right in the first place and investing in the Scheme’s infrastructure:
A large number of AAT (now ART) appeals suggest that many plans are not being built properly at review under the “reasonable and necessary†guidelines.
If planners and LACs were trained appropriately and had the time and tools to do their job well, there would be fewer appeals.
This would reduce the considerable expense currently spent on mediators, case managers and lawyers in appeals, and would be a more effective way to secure the NDIS for future generations than cutting essential supports.
Conclusion
I support the goal of securing the NDIS for future generations, but I am very concerned that some of the proposed changes in this Bill, particularly around functional capacity assessments, plan reassessments, funding flexibility and continuity of care, may unintentionally harm people like my son.
For Josh, NDIS supports:
Maintain his independence, dignity and self‑esteem.
Reduce the impact of his disability in everyday life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1180