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

Submission 144

To Whom It May Concern,

I am writing to provide my submission regarding the recent and proposed changes to the National Disability Insurance Scheme (NDIS) and the significant impact these changes are having on my daughter and our family.

My daughter is 22 years old and lives with Level 3 Autism, a moderate intellectual disability and Left Atrium Isomerism. Although she is an adult, she requires substantial daily support to safely participate in the community, maintain routine and regulate emotionally. The NDIS has been essential in providing her with access to support workers, community participation and structured activities that have greatly improved her quality of life and sense of belonging.

Recently, her support funding was reduced from 23 hours per week to only 10 hours per week. This reduction has had an immediate and devastating impact on her independence, wellbeing and connection to the community. Due to the reduced funding, she no longer has access to day options and regular community activities that were incredibly important to her. These supports were not luxuries — they were essential to her social development, emotional wellbeing and daily routine.

As a result, my daughter has lost much of her sense of community and social connection. The activities she once looked forward to, where she was able to interact with others and build confidence, are no longer accessible. Without these opportunities, she has become increasingly isolated. For someone with her level of disability, maintaining routine and structured support is critical, and the reduction in services has negatively affected her emotionally and socially.

These changes have also had a major impact on me as her parent and carer. I am now struggling to maintain full-time employment because I have had to take on a much larger caring role due to the loss of funded supports. The reduction in hours does not reduce my daughter’s needs — it simply shifts the burden onto family members. Like many carers, I am trying to balance employment, financial responsibilities and caring duties, but these funding cuts make that increasingly difficult and unsustainable.

The emotional toll of this situation has been overwhelming at times. There have been moments where the level of exhaustion, stress and isolation has become so severe that I have thought about relinquishing care of my daughter because I no longer know how to continue managing without adequate support. Carer burnout is real, and I do not believe it is being adequately recognised in these discussions. Families cannot continue carrying increasing responsibilities while essential supports are taken away. When carers reach breaking point, the consequences affect entire families and can ultimately place greater strain on crisis and emergency services.

I am also deeply concerned about the proposed changes to the definition of permanence within the NDIS. My daughter’s disabilities and medical conditions are lifelong and will not improve with age. Autism at her level, intellectual disability and her complex medical condition are permanent realities that affect every aspect of her daily functioning and independence. Any changes that make families repeatedly prove permanence or justify ongoing support create additional stress, emotional effortion and uncertainty for people already living with significant challenges.

For families like mine, these changes create fear that essential supports could continue to be reduced despite the fact that the participant’s condition is lifelong and their support needs remain substantial. The idea that we may have to continually fight to prove that my daughter’s disabilities are permanent is distressing and dehumanising. Instead of allowing families to focus on care,

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

Submission 144

stability and quality of life, it creates ongoing anxiety about the future and whether vital supports will continue.

I do not feel the changes to the NDIS have been clearly explained to families like mine. There is confusion, fear and uncertainty about how decisions are being made and why essential supports are being removed. Families caring for people with significant disabilities need transparency, consistency and confidence that participants will continue to receive the support they genuinely need.

If social and community supports continue to be reduced or removed, people like my daughter risk becoming isolated from society. These supports are vital for inclusion, independence and mental wellbeing. Without them, participants can lose confidence, routine and opportunities for meaningful engagement in the community.

Capacity building supports are equally important. Without appropriate supports, people with disabilities are denied opportunities to learn, develop skills and maintain independence. Removing these supports does not reduce a person’s disability or support needs — it simply limits their opportunities and places greater pressure on families and carers.

I ask that the inquiry carefully consider the real-life impacts these changes are having on individuals with disabilities and the families who care for them every day. Behind every funding reduction is a person whose quality of life is affected, and a family doing everything they can to cope.

Thank you for taking the time to consider my submission.

Yours sincerely,