Submission 891
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the
NDIS for Future Generations) Bill
Introduction
I am writing this submission as the mother of an adult daughter with complex lifelong disabilities, and as her informal carer and advocate. My daughter lives with cerebral palsy, autism and generalised anxiety disorder. She has significant physical support needs and relies on the NDIS to live safely and participate in the community.
I also work four days per week, care for my two-year-old grandson who has developmental delay and attends regular therapies, and provide ongoing support to my late daughter’s partner, who is also an NDIS participant. Like many families, our caring responsibilities extend far beyond what is visible on paper.
I am deeply concerned that aspects of the proposed reforms under the NDIS Amendment Bill risk the safety and well-being of people with disabilities, reduce flexibility and individualised supports, create greater instability for people with permanent and complex disabilities and increase pressure on unpaid carers.
My submission is based on lived experience of the reality of disability support and the practical consequences that policy changes can have on safety, dignity and family wellbeing.
My Daughter’s Support Needs
My daughter is an adult who lives in a specialist disability accommodation 1 bedroom apartment. Our current family home is not accessible to her as it has steps, no provision for a ceiling hoist and no accessible bathroom.
My daughter has experienced a significant decline in function over the past year. She previously managed some stand transfers but now requires a hoist and two people for all transfers. She relies on a powered wheelchair for mobility and requires assistance with all personal care tasks. She has a suprapubic catheter and requires full support to empty the bag, ensure tubing is connected correctly and monitor that it is functioning safely. She needs all meals prepared, cooked and cut up for her. Due to limited hand function, she also requires assistance to use her phone and computer.
These are not optional supports or lifestyle extras. They are essential supports required for her safety, dignity, health and daily functioning.
The most critical NDIS supports for my daughter are:
adequate funding for support workers,
onsite/shared supports,
access to therapy at the levels recommended by her care team,
support with community participation
Without these supports, the risks to her health and safety increase significantly
Submission 891
Risks of Reduced or Unstable Supports
I am deeply concerned about reforms that may narrow access to supports or create greater instability in plans.
If my daughter’s supports were reduced, delayed or made harder to access, the likely consequences would include:
risk of homelessness
increased risk of hospitalisation,
unsafe transfers risking injury to her and those supporting her,
increased aspiration risk,
catheter complications,
social isolation,
deterioration in mental health and anxiety,
deterioration in physical health,
and increased reliance on ageing family members already at capacity.
There are also serious risks associated with support worker shortages. Because my daughter requires two people for all transfers, a single missed shift can create immediate safety issues and leave her unable to get out of bed or complete essential daily activities safely.
These situations place enormous pressure on unpaid family carers and create unsafe expectations that families will simply “fill the gaps”.
Impact on Unpaid Carers
In addition to coordinating services and advocating within the NDIS system, I regularly assist with filling gaps in care and providing emotional support.
Managing the system itself has become an enormous responsibility. Coordinating providers, dealing with staffing shortages, responding to crises and advocating for appropriate supports is effectively another job on top of paid employment and caring responsibilities
I am concerned that the proposed reforms will further increase expectations on unpaid carers without recognising that many families are already beyond capacity.
There appears to be an underlying assumption in parts of the reform process that families will absorb gaps in supports if funding is reduced or access becomes harder. In reality, this is often unsafe and unsustainable.
Families cannot replace trained disability support workers, allied health professionals or appropriate funded supports indefinitely.
Submission 891
CONCERNS ABOUT SPECIFIC ASPECTS OF THE BILL
Narrowing of “Reasonable and Necessary” Supports
I am concerned that changes to the interpretation of “reasonable and necessary” supports may result in essential supports being viewed too narrowly.
Supports that enable community participation, attendance at appointments, social connection and family engagement are not discretionary extras. They are critical to maintaining mental health, reducing isolation and supporting overall wellbeing.
For my daughter, support to participate in family events, spend time with her nieces and nephew, maintain friendships and engage in the community is fundamental to living an ordinary and dignified life.
Reducing these supports risks creating isolation, declining mental health and increased long-term pressure on both health systems and unpaid carers.
These supports also prevent deterioration, reduce isolation and maintain both physical and mental health.
Reducing them may ultimately increase costs elsewhere, including hospital admissions, mental health crises and crises support services.
Reassessments and Plan Instability
My daughter’s disabilities are lifelong and permanent. I am concerned about repeated reassessments, short plan durations and ongoing uncertainty for people whose support needs are clearly permanent.
Constant reassessment creates stress, instability and fear for participants and their families already managing significant caring responsibilities.
People with permanent disabilities need stability and continuity of supports, not repeated processes requiring them to continually prove disability and need.
Functional Capacity Assessments
I am particularly concerned about proposals involving functional capacity assessment tools that have not yet been fully developed or validated.
I am also concerned about the possibility of people without appropriate allied health qualifications administering these assessments or making decisions based on limited information.
People with complex disabilities require nuanced and clinically informed assessments conducted by appropriately qualified professionals who understand the
Submission 891
interaction between physical disability, mental health, communication, fatigue, safety risks and functional capacity.
Oversimplified assessment tools risk producing inaccurate outcomes and unsafe support decisions.
Automated Decision-Making and “Robo Plans”
I am deeply concerned about the possibility of automated decision-making or “robo plans”.
People with complex disabilities cannot be reduced to formulas, algorithms or standardised funding categories.
My daughter’s needs are highly individual and require human understanding, clinical judgement and flexibility. Decisions about essential supports should never be made through automated processes that fail to recognise the complexity of real lives.
Recommendations
I ask the Senate committee to recommend:
Protection of essential supports for people with lifelong and complex disabilities.
Recognition of the limits of unpaid family care and avoidance of reforms that assume families can absorb increasing caring responsibilities.
Longer-term and more stable plans for participants with permanent disabilities.
Protection of community participation, social connection and therapy supports as essential supports, not discretionary extras.
Recognition that social and community participation funding is essential to preventing isolation and maintaining mental health and family connection.
Safeguards against unsafe reductions in support hours or care arrangements.
Decisions based on functional need, clinical evidence and safety risks rather than rigid funding frameworks.
Proper consultation with participants, families and disability organisations before major reforms are implemented.
Strong human oversight of all planning and funding decisions.
No reliance on automated decision-making or “robo plans” for participants with complex needs.
Assurance that functional capacity assessments are evidence-based and conducted by appropriately qualified allied health professionals.
Conclusion
Submission 891
People with lifelong and complex disabilities need stability, safety and appropriately individualised supports. The NDIS is not providing luxuries for my daughter — it is funding the basic supports required for her to live safely, maintain relationships, participate in the community and live with dignity.
Community participation and social connection are essential parts of health and wellbeing. Reducing these supports risks increasing isolation, worsening mental health and disconnecting people with disability from family, friendships and their broader community.
Families like mine are already carrying enormous caring responsibilities and cannot continue absorbing increasing gaps in the system.
Reforms that narrow supports, increase reassessments, rely on automated planning or shift responsibility onto unpaid carers risk causing real harm, increased hospitalisation, carer burnout and further crisis for vulnerable Australians.
I urge the Senate committee to ensure that any reforms protect the safety, dignity and human rights of people with disability and recognise the realities faced by families providing care every day.