National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1278
I am the parent and primary carer of 2 autistic children who rely on NDIS support for daily functioning, emotional wellbeing, community access, and education participation. I am also autistic and have ADHD myself and have experienced significant autistic burnout while managing caring responsibilities, NDIS administration, and recent family breakdown. My eldest is 26 years old and has Autism, ADHD, ARFID (Avoidant Restrictive Food Intake DIsorder) and Fibromyalgia and the youngest is 10 years old and Has Autism, ADHD and ARFID. Both are currently only funded for Autism.
I am making this submission to explain the real impact that reduced flexibility, limited support, and increased administrative burden can have on families already under pressure.
Key Concerns
- Carer Burnout and Administrative Burden Managing NDIS supports can become a full-time responsibility for families, particularly where a child has complex support needs.
In my situation:
I manage NDIS appointments, reports, funding, communication, and service coordination myself (note eldest has support coordination and we will struggle if I have to do this on top of my other responsibilities)
Informal and family supports are limited
Recent marriage breakdown and family violence related stressors have increased pressure significantly
As an autistic parent, ongoing system navigation has contributed to severe burnout
I was looking at returning to work part time shortly but would be unable to if supports are decreased.
Upcoming changes that increase administrative requirements or reduce flexibility are likely to place further strain on carers and reduce a family’s ability to maintain supports effectively.
Recommendation Reduce administrative complexity for families
Improve access to support coordination for families experiencing burnout or crisis
Consider parent/carer capacity when assessing participant support needs
- Lack of Access to Appropriate Supports Accessing and maintaining suitable supports has been difficult.
Current issues include:
Support coordination was previously refused/not approved for the youngest child.
Difficulty finding and maintaining suitable support workers.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1278
Increased reliance on parents to provide unpaid support beyond sustainable levels
Without appropriate supports in place, participants can quickly lose independence and functioning
- Risk of Regression When Supports Are Reduced I have observed noticeable regression when supports are unavailable, delayed, or difficult to maintain.
Areas affected include:
Social skills and community participation
Emotional regulation
School attendance and school refusal
Independence in daily activities
Consistent supports are essential to maintain progress. When supports are interrupted, the impact on both the participant and family can be significant and long-lasting.
Recommendation Prioritise continuity of supports
Avoid changes that delay access to therapies or community supports
Recognise regression prevention as an important outcome measure
- Importance of Community Access and Daily Living Supports Supports that assist with community participation and daily living tasks play an important role in maintaining wellbeing and independence.
These supports assist with:
Accessing community groups
Shopping and everyday activities
Attending appointments
Building confidence and social capacity
Reducing isolation
These supports are preventative and reduce the likelihood of greater long-term support needs.
Recommendation Maintain funding flexibility for community participation supports
Recognise the long-term value of early and consistent intervention
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1278
Ensure participants with psychosocial or neurodevelopmental disabilities are not disadvantaged by stricter funding interpretations
Conclusion The NDIS is essential for families managing disability and complex support needs. Upcoming changes should reduce barriers, not increase them.
Families experiencing burnout, family breakdown, and limited informal support need flexible and practical assistance to maintain stability and prevent regression.
I ask that future recommendations:
Consider the realities faced by carers
Protect access to flexible and consistent supports
Reduce unnecessary administrative burden
Improve access to support coordination and community participation supports
No services exist outside the NDIS
These changes would help families maintain safety, wellbeing, independence, and long-term positive outcomes.
The NDIS has been life-changing for both of my autistic children and has given them opportunities, independence, and support that would not otherwise have been possible.
Through the NDIS, my children have developed greater independence, built and maintained friendships, attended school and work successfully, improved their emotional regulation, and developed important physical and daily living skills. My eldest child is now able to attend medical appointments with the support he needs, something that would have been extremely difficult without the consistency and trust built through his support team.
One of the most important aspects of the NDIS has been the ability to choose the right therapists and support workers for my children. Building trust and relationships has taken significant time, but those relationships are essential. My children will only participate in therapies and supports when they feel safe, understood, and comfortable with the people working with them. If changes to the NDIS remove or reduce our ability to choose appropriate therapists and support workers, my children’s participation and progress would be seriously affected.
The difference early intervention has made for my youngest child has been profound. Access to support at a young age has helped develop skills early, preventing many of the difficulties my eldest child now faces as an adult. My eldest child, now 26 years old, did not have access to early intervention or autism supports when he was growing up because those services were not available in the same way they are today. As a result, he has experienced challenges that may have been reduced or prevented with earlier support.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1278
The NDIS is not simply funding therapies or services. It is enabling autistic people to participate in their communities, build relationships, access education and employment, attend healthcare appointments, and live with greater independence and dignity.
The consistency, flexibility, and personalised nature of NDIS supports are critical to these outcomes. Changes that reduce participant choice and control, disrupt established therapeutic relationships, or limit access to individualised supports risk undoing years of progress for autistic people and their families.
Thank you for reading my submission.