National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1408
SUBMISSION – Enquiry into Inquiry into the National Disability Insurance Scheme
Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by: (parent & lifelong caregiver of an adult NDIS participant) Privacy Preference: NAME TO BE WITHELD Date: May 27th , 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 autism His diagnoses have been confirmed multiple medical practitioners Our son has part taken in South Australia since trial site commenced We remain extremely grateful support provided through without which family’s ability function safely care significantly compromised This reflection direct lived experience ageing parents caring young adults will never be able live independently require intensively daily support supervision Care rest life. Support objective ensuring long-term sustainability NDIS do not this bill current form particularly proposed reduction social community participation supports increased reliance standardised assessments ### Social and Community Participation Proposed reduction funding concerning aspects families such ours Son disabilities permanent irreversible lifelong no pathway therapy intervention independent living decision-making competitive employment safe unsupervised functioning requires day care supervision support cannot home alone manage tasks access community without supervision making decisions independently level temporary entire life Never drive car attend university obtain trade rely others safety structure wellbeing daily care Since leaving his specialised education setting NDIS funding enabled son structured options program peers own age provides routine supervision skills development emotional regulation engagement interaction
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
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, supporting his mental wellbeing and enabling him to connect people in similar age groups.
Without these supports there’s very real risks severe social isolation emotional deterioration Mental health decline increased behavioral distress For individuals With Severe intellectual disability autism loss routine structured Community Participation can have devastating consequences including heightened anxiety Emotional dysregulation withdrawal Behavioral escalation Increased reliance on crisis services And mental Health systems The bill In its current form does Not adequately recognize That Participants profound Lifelong Disabilities Social & Community Participation Supports Are Essential Necessary Supports Optional extras Continuation Of These Supports Has Also Enabled Us As Parents Carers To Continue Working Part-time Basis While Continuing Provide Substantial unpaid Care Every Single Day The NDIS Does NOT replace family care it merely makes lifelong care sustainable enough Prevent complete Family exhaustion breakdown If these supports reduced There Is Very Real possibility husband Or I Both May Be Forced significantly reduce cease employment order provide full time care ourselves This would remove costs from government Would simply shift those Costs elsewhere through increased carer Reliance Reduced taxation revenue Increased mental health supports Crisis intervention Services Greater long-term Government dependency Standardised Assessments We also deeply concerned about the increased reliance standardised assessments proposed under reforms Our son’s Disability is complex permanent lifelong He requires intensive support across all aspects daily life will always require 24/7 supervision care. Participants such as our Son do not fit neatly into standardised categories or simplistic assessment tools Fact that our son verbal Physically mobile means capable independent living Independent judgement Personal safety awareness meaningful decision-making Outward appearances highly misleading Many individuals intellectual disability appear superficially functional during short term assessments still being entirely dependent others safe Daily Living A one-off standardized Assessment conducted unfamiliar assessor accurately capture complexity of our son’s overlapping disabilities cognitive limitations communication difficulties Long Term care requirements realities his Supervision needs serious risk That standardized assessments underestimate Support Needs participants with Complex neurological Cognitive and behavioral Disabilities Individualized assessment planning must remain central to The ndis for participants With Complex Lifelong Disabilities
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
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 퍝펛 profundidisabilities face increased riskof neglect social exclusion inappropriate accommodation arrangementsfamily collapseand institutional-type outcomes contrarytothe original purposephilosophyNDIS The true measure any society reflected in how it treats itsmost vulnerable members SummaryThe NDIS has been lifeline thousands Australianfamilies includingours changes proposed under thisBillrisk undermining verypurpose upon whichNDS was establishednamely toprovide dignity inclusion stability safety choice meaningful participation people living significantdisabilitie Familiessuchourexperience enormous emotional physical financial pressures every single day while providing substantial unpaidlifelongcare We respectfully urge Committee reject reductionssocial community participationsupports participantswithprofound lifelong disabili ensure standardised assessments used sole basis funding decisions preserve individual planning processes recognize that some participants always require intensive 24/7 care Proposed reforms current form causing serious harm most vulnerabl withincommunity familiewho care them Thank you taking time consider submission Yours sincerely