Submission in Opposition to the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
May 31, 2026
We write as grandparents, parents and family members of multiple people living with permanent disabilities. Over many years, we have seen first-hand both the challenges disability can create and the difference that appropriate supports can make.
Between our two daughters and two of our granddaughters, our family has experience living with autism, psychosocial disability and hypermobile Ehlers-Danlos Syndrome (hEDS)-related disabilities. Several members of our family receive formal support through the National Disability Insurance Scheme.
As grandparents who have witnessed disability across multiple generations, we are deeply concerned about the potential impact of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 on individuals with permanent disabilities and the families who support them.
Disability Does Not Affect Individuals in Isolation
One of our greatest concerns is that policy discussions often focus on individual participants while overlooking the broader impact on families.
When a person loses support, the need for support does not disappear. It is absorbed by parents, partners, siblings, grandparents and other family members.
Over many years, we have seen first-hand the physical, emotional and financial toll that disability can have on families. We have also seen the difference that appropriate supports can make to independence, wellbeing and quality of life.
The NDIS has not removed the need for family support. Rather, it has provided professional assistance that enables families to continue supporting their loved ones without reaching breaking point.
The Importance of Professional Supports
We are particularly concerned about provisions that place greater emphasis on informal supports and other service systems.
Families are not a substitute for professional expertise. While family members provide care, advocacy and emotional support, they are generally not occupational therapists, psychologists, physiotherapists, speech pathologists, support coordinators or disability specialists.
Professional supports provide evidence-based interventions, specialised knowledge and individualised strategies that families simply cannot replicate on their own.
In our family, NDIS-funded supports have helped individuals develop functional skills, manage disability-related challenges, improve participation in daily life and maintain independence to the greatest extent possible.
Removing or reducing access to those supports risks undoing years of progress and transferring responsibilities to family members who may not have the capacity, expertise or resources to assume those roles.
The Impact of Multiple and Interacting Disabilities
We are concerned that reforms may not adequately recognise that disabilities frequently do not occur in isolation.
Within our own family, one participant with psychosocial disability also experiences significant physical disabilities. Similarly, one family member with hEDS-related disabilities also experiences significant mental health challenges.
These conditions do not operate independently of one another. They interact, overlap and compound the overall impact on daily functioning.
For example, physical pain, fatigue and mobility limitations can worsen mental health symptoms, while anxiety, depression and psychosocial challenges can in turn reduce a person’s ability to manage physical health conditions, attend appointments, participate in therapy or maintain employment and social connections.
Likewise, autistic individuals often experience co-occurring mental health conditions, sensory processing challenges, executive functioning impairments and physical health issues that together create a level of functional impact that may be far greater than any individual diagnosis would suggest.
We are concerned that reforms which seek to narrowly attribute support needs to a single disability or impairment may fail to recognise the cumulative impact of multiple conditions occurring together.
A person may appear to function adequately when each diagnosis is considered separately. However, the reality of living with several interacting disabilities is often significantly more complex.
It is essential that assessment processes recognise the whole person rather than attempting to separate support needs into artificial categories. Disability is rarely experienced as a series of isolated diagnoses. It is experienced as the combined impact those conditions have on a person’s ability to participate in everyday life.
Failure to recognise the cumulative effect of multiple disabilities risks underestimating support needs and reducing access to services that are critical to maintaining independence, wellbeing and community participation.
Impact on Future Independence
We have watched our children and grandchildren work hard to overcome barriers that many people never have to consider. The purpose of disability supports should not simply be to address immediate needs. They should also support future independence, participation and quality of life.
For our autistic granddaughter, supports help her participate in education, manage sensory challenges, develop emotional regulation skills and build the foundations for future independence.
For family members living with hEDS-related disabilities, supports assist with managing the physical impacts of a lifelong condition and maintaining participation in daily life.
For family members living with psychosocial disability, supports can provide stability, structure and assistance during periods when functioning is significantly impaired.
Reducing support may create short-term savings while increasing long-term dependence on health services, mental health services, carers and other government systems.
The Impact on Families and Carers
We are concerned that the Bill does not adequately recognise the cumulative burden placed on families when formal supports are reduced.
Families already contribute countless hours of unpaid care. They coordinate appointments, provide transport, advocate within education and health systems, offer emotional support and assist with daily living activities.
Many carers are ageing. Many have their own health conditions. Many continue to work while supporting family members with disabilities. In many cases, family members are already balancing employment, their own health concerns, financial pressures and caring responsibilities simultaneously.
Expecting families to provide increasing levels of support while reducing access to professional assistance is neither sustainable nor equitable.
Long-Term Consequences
We fear that reforms designed to reduce expenditure within the NDIS may ultimately shift costs elsewhere.
Reduced access to supports may result in:
- Increased demand on public health services.
- Increased mental health presentations.
- Reduced workforce participation by carers.
- Greater educational disengagement.
- Increased family stress and burnout.
- Reduced independence for people with disabilities.
- Greater long-term reliance on government supports. Rather than eliminating costs, the proposed changes risk transferring costs from the NDIS to health services, mental health services, education systems, carers and families. They would simply transfer costs from one system to another while reducing quality of life for people with disabilities and their families.
Conclusion
We acknowledge the need to ensure the long-term sustainability of the NDIS and to address misuse of Scheme resources. However, we urge decision-makers to ensure that reforms do not unintentionally disadvantage people living with permanent and complex disabilities, particularly those whose disabilities are not always visible.
Our family’s experience demonstrates that disability rarely fits neatly into a single diagnostic category. Effective support systems must recognise the cumulative and interacting effects of multiple physical, psychosocial and neurodevelopmental disabilities rather than assessing each condition in isolation.
As grandparents, we think not only about the challenges our family faces today, but also about the future our children and grandchildren will inherit. We want them to have every opportunity to participate in education, employment, family life and the broader community.
Disability supports are not a luxury. They are essential tools that help people build skills, maintain independence and achieve their potential. The NDIS has provided opportunities, stability and hope to many Australians with disabilities and their families.
We respectfully ask that any reforms preserve access to the supports that enable people with disabilities to live meaningful lives while recognising the critical role that families already play in providing care and support.
Disability is not an individual issue. It is a family issue, a community issue and a societal issue. The decisions made today will affect not only current participants, but future generations of Australians living with disability.