Submission 864
Submission to the NDIS Future Generations Bill 2026
Regarding the potential impact on people with severe and complex disabilities
My name is . I am the mother and long-term carer of my daughter , is a a person living with severe and complex disability. I am writing this submission because I am deeply concerned about how the proposed NDIS Future Generations Bill 2026 may impact people like , both now and into the future.
is amazing young woman who has a tremendous impact on her family, friends and community. She is valued human being.
I ask that decision makers carefully consider the real-life consequences this legislation may have on people with high and complex support needs, and on the families who support them every day.
For many people, disability policy is discussed in financial terms, budgets, and systems. But for families like ours, these decisions directly affect safety, health, communication, dignity, independence, and quality of life.
’s support needs are not optional or temporary. They are lifelong, complex, and require highly individualised support.
Understanding ’s Disability and Support Needs
lives with severe and complex disability requiring significant daily support across all areas of life. She requires consistent, skilled, one-to-one support to safely participate in her home and community.
’s disability affects:
Communication
Emotional regulation
Decision making
Safety awareness
Daily living skills
Sleep
Community access
Social connection
Personal care and routines
uses multiple forms of communication, including AAC and supported communication methods. Staff and family require ongoing training and consistency to understand her communication and support her safely.
Submission 864
Changes to support structures, unfamiliar workers, reduced hours, or inflexible funding models can have major impacts on ’s wellbeing and safety.
Risks if the Bill Results in Reduced Flexibility or Supports
I am concerned that the proposed changes may reduce the flexibility needed to support people with severe disabilities in ways that are safe and effective.
People like do not fit into standardised systems.
Supports often need to change quickly depending on:
Sleep deprivation
Health changes
Behavioural distress
Community risks
Staffing issues
Communication breakdowns
Mental and emotional wellbeing
If funding becomes more rigid, harder to access, or based on generic assumptions rather than individual needs, the result could be serious harm.
Real-Life Examples of Potential Risks
Sleep Deprivation and Escalation
Recently experienced multiple nights with almost no sleep over a five-day period. During these periods, her support needs increase significantly.
Sleep deprivation impacts:
Emotional regulation
Communication
Physical safety
Ability to participate in daily life
Risk of distress and escalation
During these times we require increased staffing, flexible support responses, and highly experienced workers.
If supports are delayed, reduced, or restricted under new funding rules, ’s distress could escalate to the point where:
Hospital presentations increase
Submission 864
Emergency services are involved
Mental health systems become involved
Family breakdown and carer burnout occur
This does not save money. It simply shifts costs to other government systems while causing trauma to the person and family.
Communication Supports Are Essential, Not Optional
requires consistent support workers who understand her communication methods.
If the Bill leads to:
Reduced staffing flexibility
Lower funding levels
Increased use of unfamiliar agency staff
Restrictions on training supports
then ’s ability to communicate her needs safely will reduce.
When a person cannot communicate effectively:
Anxiety increases
Frustration increases
Behavioural distress can increase
Health issues may go unnoticed
Safeguarding risks increase
Communication is not a luxury. It is fundamental to safety, human rights, and dignity.
The Hidden Cost of Inadequate Supports
One of my biggest concerns is that this Bill may unintentionally increase long-term costs to government systems.
When proper disability supports are not provided:
Hospital admissions increase
Crisis accommodation may be needed
Police and emergency services become involved
Mental health systems carry additional pressure
Families experience burnout
Informal supports collapse
Submission 864
For people with severe disability, prevention is far more effective and humane than crisis response.
The NDIS was designed to provide reasonable and necessary supports so people could live safely in the community and avoid exactly these outcomes.
Families Already Carry Significant Responsibility
Families like ours already provide enormous unpaid support.
We coordinate:
Rosters
Communication systems
Medical appointments
Behavioural supports
Staff training
Daily routines
Advocacy
Crisis management
Community participation
Without flexible NDIS supports, much of this responsibility becomes unmanageable.
Many ageing parents and carers are terrified about the future for their sons and daughters if systems become harder to navigate or supports become more restricted.
People With Severe Disabilities Must Not Be Forgotten
There is growing discussion about sustainability of the NDIS. I understand governments must manage public spending responsibly.
However, sustainability cannot come at the expense of the safety and wellbeing of people with the highest support needs.
People with severe and complex disability are often the least visible in these discussions because they cannot easily advocate for themselves.
I ask that the Government ensure:
Individual needs remain central to planning
Flexibility remains available for complex circumstances
Communication supports are protected
Families and lived experience are genuinely listened to
Submission 864
High support needs are not forced into standardised funding models
Prevention and early support remain priorities
Final Comments
People like deserve the same rights as everyone else:
To feel safe
To communicate
To participate in community life
To have meaningful relationships
To live with dignity
To have a future
The NDIS has allowed many people with severe disabilities to live fuller and safer lives in their communities.
I strongly urge the Government to carefully consider the unintended consequences this Bill may have for people with severe and complex disabilities and the families who support them.
Once vital supports are reduced or lost, the damage can be significant and very difficult to reverse.
Thank you for considering this submission.