Submission 1408
SUBMISSION – Enquiry into Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDS for Future Generations) Bill 2026
Submitted by: (parent & lifelong caregiver of an adult NDIS participant)
Privacy Preference: NAME TO BE WITHELD
Date: 27 May 2026
We welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
About Us
My husband and I are the parents and primary, lifelong caregivers of our adult son who lives with two complex genetic conditions, together with severe intellectual disability and autism. His diagnoses have been confirmed by multiple medical practioners.
Our son has been a part of the NDIS since the trial site commenced in South Australia in 2014. We remain extremely grateful for the support provided through the NDIS, without which our family’s ability to function and safely care for our son would be significantly compromised.
This submission reflects our direct lived experience as ageing parents caring for a young adult who will never be able to live independently and who will require intensively daily support, supervision and care for the rest of his life.
We support the objective of ensuring the long-term sustainability of the NDIS. We do not support this Bill in its current form, particularly the proposed reduction in social and community participation supports and the increased reliance on standardised assessments.
Social and Community Participation
The proposed reduction to social and community participation funding is one of the most concerning aspects of the Bill for families such as ours.
Our son’s disabilities are permanent, irreversible and lifelong. There is no medical pathway, therapy or intervention that will result in independent living, independent decision-making, competitive employment or safe unsupervised functioning.
Our son requires 24/7 care, supervision and support. He cannot be safely left home alone, cannot independently manage daily living tasks, cannot safely access the community without supervision, and cannot make complex decisions independently. This level of support is not temporary. It will remain necessary for his entire life.
Our son will never live independently, never drive a car, never attend university and never obtain a trade. He will always rely on others for his safety, structure, wellbeing and daily care.
Since leaving his specialised education setting, NDIS funding for social and community participation has enabled our son to attend a structured day options program on a daily basis, with peers of his own age. This program provides routine, supervision, life skills development, emotional regulation, community engagement and meaningful social interaction.
Submission 1408
For participants such as our son, social and community participation is not discretionary spending, a recreational activity or a lifestyle choice. It is an essential disability support service that forms part of his overall daily care and safeguarding framework. These supports are critical for preventing his social isolation, support his mental wellbeing and enable him to be connected to people his own age.
Without these supports, there is a very real risk of severe social isolation, emotional deterioration, mental health decline and increased behavioural distress. For individuals with severe intellectual disability and autism, loss of routine and structured community participation can have devastating consequences, including heightened anxiety, emotional dysregulation, withdrawal, behavioural escalation and increased reliance on crisis services and mental health systems.
The Bill in its current form does not adequately recognise that for participants with profound and lifelong disabilities, social and community participation supports are essential and necessary supports, not optional extras.
The continuation of these supports has also enabled us as parents and carers to continue working on a part-time basis while continuing to provide substantial unpaid care every single day.
The NDIS does not replace family care. It merely makes lifelong care sustainable enough to prevent complete family exhaustion and breakdown. If these supports are reduced, there is a very real possibility that my husband or I or both of us may be forced to significantly reduce or cease employment in order to provide full-time care ourselves. This would not remove costs from government. It would simply shift those costs elsewhere through increased carer reliance, reduced taxation revenue, increased mental health supports, crisis intervention services and greater long-term government dependency.
Standardised Assessments
We are also deeply concerned about the increased reliance on standardised assessments proposed under the reforms.
Our son’s disability is complex, permanent and lifelong. He requires intensive support across all aspects of daily life and will always require 24/7 supervision and care.
Participants such as our son do not fit neatly into standardised categories or simplistic assessment tools. For example, the fact that our son is verbal and physically mobile does not mean he is capable of independent living, independent judgement, personal safety awareness or meaningful decision-making.
Outward appearances can be highly misleading. Many individuals with intellectual disability can appear superficially functional during short-term assessments while still being entirely dependent on others for safe daily living.
A one-off standardised assessment conducted by an unfamiliar assessor would not accurately capture the complexity of our son’s overlapping disabilities, cognitive limitations, communication difficulties, long-term care requirements or the realities of his 24/7 supervision needs.
There is a serious risk that standardised assessments will underestimate the support needs of participants with complex neurological, cognitive and behavioural disabilities.
Individualised assessment and planning must remain central to the NDIS for participants with complex lifelong disabilities
Submission 1408
What Happens After We Are Gone?
One of the greatest and most painful fears faced by parents of children with profound disabilities is the question “Who will care for our child when we are no longer physically capable or no longer alive?”
As parents, we provide our son with unconditional love, advocacy, protection and lifelong care. However, we are also ageing.
The long-term viability, reliability and humanity of the NDIS is critically important for families such as ours because our son’s support needs will not decrease as we age. In reality, our family’s dependence on stable and reliable disability supports will increase.
Without adequate supports, participants with profound disabilities face increased risk of neglect, social exclusion, inappropriate accommodation arrangements, family collapse and institutional-type outcomes, contrary to the original purpose and philosophy of the NDIS.
The true measure of any society is reflected in how it treats its most vulnerable members.
Summary
The NDIS has been a lifeline for thousands of Australian families, including ours.
The changes proposed under this Bill risk undermining the very purpose upon which the NDIS was established, namely to provide dignity, inclusion, stability, safety, choice and meaningful participation for people living with significant disabilities.
Families such as ours already experience enormous emotional, physical and financial pressures every single day while providing substantial unpaid lifelong care.
We respectfully urge the Committee to:
- reject reductions to social and community participation supports for participants with profound lifelong disabilities;
- ensure standardised assessments are not used as the sole basis for funding decisions;
- preserve individualised planning processes; and
- recognise that some participants will always require lifelong intensive support and 24/7 care.
The proposed reforms, in their current form, risk causing serious harm to some of the most vulnerable people within our community and to the families who care for them.
Thank you for taking the time to consider our submission.
Yours sincerely