Submission: Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment - Securing the NDLSI for Future Generations Act No.

Submission Number:

Introduction

As an advocate father of a son with Autism who receives support through his local government scheme, I share this experience as it pertains directly towards securing the NDLSI for future generations.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1842

learnt to mask, suppress and internalise much of his anxiety in professional settings in an effort to meet expectations and fit in. As he has grown older, has become increasingly aware of his differences and has a strong desire to be seen as “normal”, despite recognising the significant challenges he faces in everyday life.

As a result,, can often appear more capable and independent than he actually is. I am concerned that an assessor who only meets briefly may observe a young person who appears articulate, cooperative and capable, without seeing the significant preparation support and recovery time required for him to function successfully in that environment.,’s outward presentation in professional settings does not typically reflect the substantial support he requires behind the scenes. His ability to participate in education, social activities and community settings is generally limited to short periods of one to three hours at a time after which he often becomes mentally and emotionally exhausted and has difficulty regulating his emotions; generally resulting in meltdowns Successful participation depends heavily on careful preparation familiar routines ongoing support guidance Without these supportsactivitiesthatmayseemmanageableonthesurfacecanquicklybecomeoverwhelmingandleadtosignificantanxietyanddistress A standardised assessment may not fully capture the amount of support thatrequiresona day-to-day basis My concern isthatdecisionsbasedprimarilyonasessmenttoolscouldunderestimatehisactualneedsandreducesupportsthatarecriticaltohiscontinueddevelopmentandwellbeing.I believanyassessmentprocessshouldplace significanthweightonevidencefromthosewhoknowbestincludinghisparentsthersapists treating cliniciansandsuppor workers.

Community Participation SupportsCommunityparticipationsupports have been extremely importantfor .These supports arenotrecreationalextras They provide opportunitiesfourtodevelopsocial skills confidence independence andacommunityconnections These activitiestalsoprovide with asenseofbelonging acceptanceandaconnectionwhicharetocriticalto hisself-esteemconfidenceandovertall wellbeing Particiationinstructuredactivitiesthelph practice skillsthatmanypeopletakeforgrantedincludingcommunication social interactiona ndmanagingunfa miliar situations.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1842

If access to these supports becomes more restricted, I am concerned that [redacted]’s topportunities for growth and independence could be reduced. At critical stage life as he transitions towards adulthood maintaining these supports particularly important. For **[redacted]**community participation funding investment into his future independence and quality if life.

Transition Adulthood

**[Redacted]**now approaching critical stage Life. This year due commence Year eleven However many years significant challenges at School including severe Anxiety weekly meltdowns attendance never exceeded around ten hours per week, decided pause formal schooling this year Rather than continuing educational pathway causing considerable daily distress, schooling secondary demands of rather using this year concentrate developing essential skills had been As parents goal not simply support today but help him develop needed active contributing member society. is extremely intelligent young man with strong passion learning self-directed learner interest subjects such space evolution hope with ongoing support from family ndis will able re engage education next complete school ultimately pursue further training leads meaningful employment vocation matches strengths interests abilities. Decisions relating Education Employment opportunities independent living Skills community Participation therefore becoming increasingly important the support he receives during transition period have a significant influence on outcomes. Transition already creating uncertainty anxiety Family do know extent to which **[redacted]**will live independently in Future level Support require or what Opportunities may available him What we know is that Supports receive now significantly impact Outcomes. The immediately before and after leaving school arguably most

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1842

Impact on Our Family

The proposed reforms also have the potential to increase the caring responsibilities carried by our family. Although receives NDIS support, the majority of his day-to-day care and support continues to be provided by me/myself and myself/our family. We coordinate appointments, manage services advocate on behalf of him/himself assist with planning decision-making help transport navigate many challenges associated autism Much behind scenes essential enabling participation everyday activities is not yet able home or community independently even short periods Despite ongoing efforts gradually build confidence independence experiences extreme anxiety distress when separated Attempts trial brief period independent minutes significant emotional result currently requires continuous supervision from us/support workers While developing greater remains one primary goals progress area considerable time patience specialist careful supports through play critical role helping work towards that goal reducing long-term reliance he may otherwise rely having family care As ’s full-time carers it became unsustainable both my wife continued I meet his support needs providing

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1842

flexibility required to care for my wife reduced her employment to two days per week and accepted a significantly lower-paying casual role. Those two days of work are not only important financially but are also critical for her own mental health, wellbeing and sense of identity outside of her caring responsibilities. On the days my wife works, I work from home with the support of a currently understanding employer. Even with these arrangements in place, our family has experienced a substantial reduction in income as a direct result of the care we provide to . We also continue to support our two other dependent children, placing further demands on our household resources.When support systems become more difficult to access, more restrictive, or less flexible, the impact is not absorbed by a government system. It is absorbed by our family. We have already experienced periods where redacted: s37 - irrelevant material]required significant additional support, including following recent major surgery earlier this year. During those periods, it became very clear how much unpaid care is provided by us and how quickly caring responsibilities can become overwhelming.I am deeply concerned that any reduction in ’s NDIS funding or access to supports could require us to further reduce our participation in paid employment in order to meet his needs. This would place additional pressure on our family’s financial security while also increasing the emotional and physical demands associated with our caring role. Such an outcome would not only affect our ability to manage household expenses but could also have a significant impact on our own health and wellbeing as long-term carers.Any reduction in supports available to would inevitably increase the level of support required from our family.

Choice and Control One of the most valuable aspects of the NDIS for has been the ability to access supports that meet his individual needs.Because autism affects each person differently, finding providers who understand [redacted]and have developed trusted relationships with him has been important. Consistency and familiarity help him feel comfortable and supported. I am concerned that reforms aimed at increasing efficiency or controlling costs could unintentionally reduce flexibility and make it harder to maintain those important support relationships.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1842

For redacted, continuity of support is not simply a preference; it is often a key factor in whether a support is successful.

Conclusion

The NDIS has helped redacted access supports that have improved his participation, certainty and quality of life. However, the success of those supports depends on recognizing his individual circumstances and needs. My concern is that some of the proposed reforms may place greater emphasis on standardised processes and cost control while giving insufficient consideration to the realities of redacted’s daily life and the support provided by our family. I respectfully ask the Committee to ensure that the implementation of these reforms remains focused on individual circumstances, preserves flexibility in support arrangements,and recognises the critical role that family members play in supporting participants like redacted. For our family,the NDISisnotsimplyafundingprogram.Itiscriticalpartnershiptohelpredactedbuidtheskills,certaintyandindependenceneededtoreachhisfullpotentialcontribute meaningfullytosocietyandanachievethegreatestlevelofindependencepossiblewhileallowingustobalanceourcaringresponsibilities,maintainemploymentandsupportthe wellbeingofourneitralfamily.