Submission 2765
Submission on the NDIS Amendment Bill
Name: Email: Submission requested to be treated as anonymous I am a: Grandparent of NDIS participants and family member of people with disability.
My main concern about this Bill is I am concerned that proposed changes to the NDIS may reduce access to disability supports, weaken review and appeal rights, increase reliance on informal support networks, and reduce opportunities for people with disability to participate safely in their communities.
As an ageing grandparent, I have witnessed firsthand the difference that appropriate disability supports make, not only to the individual participant but to entire families.
I am concerned that reforms may unintentionally place greater responsibility onto family members who are neither physically capable nor appropriately trained to provide the level of support required.
This Bill may affect me because My daughter is the primary carer for three people with disability, including my grandson Finn, who has very significant and complex support needs.
Over many years I have watched the physical, emotional, and practical toll that caring responsibilities have had on her and on the entire family.
As I have become older, my own physical capacity has reduced. I am no longer in a position to provide hands-on disability support, behavioural support, personal care, or the level of supervision that some people with complex disabilities require.
The support I can offer is emotional support, encouragement, and maintaining family connections.
I am concerned about any reforms that increase expectations on ageing parents, grandparents, siblings, or extended family members to fill gaps left by formal disability supports.
One example from my experience One of the clearest examples I can provide is the difference that appropriate support makes to my ability to spend time with my grandson.
My grandson Finn requires highly skilled support due to his disability, behavioural support needs, communication difficulties, medical complexities, and safety risks.
When he has access to appropriately trained, known, funded support workers, he is able to visit me safely in my home for short periods of time.
Those visits are incredibly important.
They allow me to spend time with my grandson as his grandfather.
They allow him to spend time with family.
They allow our family relationships to exist.
When properly supported, everyone is safer, more relaxed, and able to focus on being family rather than managing risk.
Submission 2765
Without those formal supports, those visits often cannot occur safely.
I do not have the physical ability, specialist training, behavioural support knowledge, or capacity to manage his support needs independently.
This is not a criticism of my grandson. It is simply the reality of his support requirements.
The difference between funded support being present and absent is often the difference between family connection being possible or impossible.
What I want the committee to understand Family members cannot replace appropriately trained disability support workers.
Love, care, and commitment are important, but they are not substitutes for professional disability support.
I often hear discussions about informal supports and family involvement. While families play an important role, there must be recognition that many families are already doing everything they can.
There comes a point where expecting more from family members becomes unrealistic, unsafe, and unsustainable.
I am particularly concerned about my daughter.
I have watched her spend years living in survival mode while trying to support family members with very high support needs.
I rarely get to spend ordinary time with her because her life is dominated by caring responsibilities, service coordination, appointments, crises, and advocacy.
The more disability-related responsibilities that are transferred onto families, the more isolated families become.
People lose relationships.
Parents stop being parents.
Grandparents stop being grandparents.
Families become unpaid disability support systems.
That is not what the NDIS was designed to achieve.
The purpose of disability support should be to allow people with disability to live meaningful lives while also allowing families to remain families.
Concerns about proposed reforms I am concerned about increased reliance on standardised assessment processes.
People with complex disabilities are individuals. Their lives, needs, risks, strengths, and support requirements cannot always be captured through a standardised assessment tool.
I am also deeply concerned about any changes that weaken review and appeal rights.
Over the years I have watched my family rely on review processes when decisions have not accurately reflected disability-related support needs.
Submission 2765
Those safeguards exist for a reason.
For many vulnerable Australians, review rights are the only protection against incorrect decisions.
I believe participants should continue to have access to internal reviews, independent reviews, and independent merits review through the Administrative Review Tribunal (ART).
Importantly, I believe that independent tribunals must retain the ability to make decisions based on legislation, evidence, and individual circumstances rather than simply returning matters to the NDIA for reconsideration.
Independent oversight is a critical safeguard within a fair system.
Recommendations
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Maintain adequate disability funding for people with complex support needs.
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Protect community participation supports that reduce isolation and maintain family andcommunity connections.
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Ensure disability-related supports remain the responsibility of appropriately trained and fundedprofessionals rather than informal family networks.
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Preserve a person-centred approach that recognises individual circumstances rather than relyingprimarily on standardised assessment tools.
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Preserve participants’ rights to internal review, external review, and independent merits reviewthrough the Administrative Review Tribunal.
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Maintain strong independent oversight of NDIS decision-making.
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Recognise the impact disability policy decisions have on entire families, including parents,siblings, grandparents, and extended family members.
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Ensure NDIS reforms strengthen family relationships rather than increasing family burden. Closing statement As I get older, I think more and more about what kind of society we want to be.
Any one of us could become disabled tomorrow.
Any one of us could become reliant on support systems, review processes, and legal protections that safeguard our rights.
The measure of a society is how it treats its most vulnerable people.
I want to see an NDIS that remains person-centred, protects human rights, preserves independent review processes, supports community participation, and ensures people with disability receive the supports they need from appropriately trained professionals.
Most of all, I want to see families given the opportunity to be families.
That is what good disability support makes possible.