National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1661
Submission to the Senate Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill
Submission to the Senate Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill
Summary of Main Concerns
• Reductions to psychology, allied health and community participation supports would significantly reduce my daughter’s quality of life, independence and safety.
• Mobility aids funded through the NDIS have been essential in allowing my daughter limited but important access to the community.
• Conditions such as POTS and EDS need to be recognised as serious lifelong disabilities, even when symptoms fluctuate.
• Increasing reliance on unpaid family carers will place unsustainable pressure on families already providing extensive care.
• Social and community participation supports are essential supports that prevent isolation and deterioration, not optional extras.
I am writing as the mother and full-time carer of my 22-year-old daughter, who lives with Autism Spectrum Disorder Level 3, Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS). She has been an NDIS participant since 2020.
My daughter has very high support needs and relies entirely on me for daily care, emotional support, transport, appointments and community access. She needs support with basic daily living activities including getting food, remembering and taking medication, getting dressed, running a bath and personal care. She is unable to manage any form of housework independently. She also struggles to regulate her body temperature due to POTS and EDS, which further affects her ability to safely participate in daily activities and community access. She cannot go out alone and depends on me to accompany her everywhere she goes. I also live with chronic spinal pain and have a spinal cord stimulator implanted to help manage my pain. Despite my own health issues, I continue to provide all of her care because she has no one else she can rely on.
I am deeply concerned about changes proposed in the NDIS Amendment Bill that may reduce supports, tighten access to services, increase reassessments and place more responsibility onto unpaid family carers.
The supports my daughter currently receives through the NDIS include psychology, physiotherapy, exercise physiology, occupational therapy, support coordination and plan management. She also attends an NDIS-funded social group once a week. These supports are not luxuries. They are essential to maintaining her functioning, safety, mental health and quality of life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1661
My daughter has severe difficulties with social communication, sensory overwhelm, emotional regulation and independence because of her autism. She also experiences serious physical limitations due to POTS and EDS. Standing or walking causes dizziness, exhaustion and feelings that she may faint. Even attending an art class with a support worker became too physically exhausting, despite her wanting very much to participate. She would often require days to recover afterwards.
The NDIS has made a significant positive difference in her life. Funding for mobility aids, including a walking stick and wheelchair, has allowed her to safely leave the house occasionally and participate in the community in limited ways. Without these supports, she would lose even the small amount of independence and mobility she currently has.
Even with these supports, her participation remains extremely limited. My daughter has wanted to visit shops to help choose items to redesign her bedroom in ways that would make it safer and more manageable for her sensory and physical needs. However, she has not been physically able to leave the house to do this for more than a year, even when using a wheelchair. This demonstrates how significant her disabilities are and how difficult even ordinary activities can be for her.
The social group she attends is currently her only real opportunity to interact with people her own age. Without this support, she would become even more isolated. Community participation supports are essential for people with disability who already experience profound social isolation and barriers to connection.
I am especially concerned about any changes that may reduce access to psychology and allied health supports. Psychology is helping my daughter slowly learn how to communicate more effectively, interact with others, manage anxiety, advocate for herself and participate in the world around her. Progress is slow because of the complexity of her disabilities, but it is meaningful. If these supports are reduced, she will lose important opportunities to build skills and confidence, and her functioning may decline further.
I am also concerned about proposed changes that could allow supports to be reduced or capped through broad policy decisions rather than individual assessment. I am worried about changes to social and community participation funding, tighter definitions of “reasonable and necessary” supports, increased reassessments, and greater expectations being placed on unpaid family carers.
For people with complex disabilities, community participation supports are not optional extras or recreational spending. They are often essential for safety, supervision, therapy access, communication, skill building and preventing severe isolation. My daughter’s limited community access already requires careful planning, support and long recovery periods afterwards.
I am also concerned that stricter rules around what is considered directly related to disability may fail to recognise how conditions such as autism, POTS and EDS interact together to create substantial functional impairment.
Reducing these supports without properly considering individual circumstances risks causing deterioration in health, increased dependence on family carers and greater long-term costs to the community.
I am also concerned that conditions such as POTS and EDS are not always properly recognised as serious lifelong disabilities. These conditions can fluctuate, but they are still disabling. My daughter’s ability to function can
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1661
vary from day to day, but this does not mean she is recovering or no longer needs support. The combination of autism, POTS and EDS creates substantial and ongoing functional impairment.
The current discussion around reducing supports and expecting families to do more unpaid caring is frightening for carers like me. I already provide care during both the day and night, including helping my daughter with bathing, appointments and emotional regulation. This physical caring worsens my own chronic pain condition. I worry that if supports are cut further, I will not physically be able to continue coping. If family carers break down physically or mentally, the consequences for disabled people can be devastating.
People without disabilities may not realise that these supports are often what prevent crisis, isolation, hospitalisation and complete dependence. Small supports can make the difference between participating in the community and being completely housebound.
I ask the Senate Committee to carefully consider the real-life impact these changes may have on disabled people and their families.
I respectfully recommend that the Committee:
• Protect funding for psychology, physiotherapy, exercise physiology, occupational therapy and community participation supports for people with complex disabilities.
• Recognise POTS, EDS and other fluctuating conditions as potentially lifelong and significantly disabling conditions.
• Avoid shifting more responsibility onto unpaid family carers who are already under enormous physical, emotional and financial strain.
• Protect access to mobility aids that maintain safety and participation.
• Ensure participants with permanent disabilities are not subjected to unnecessary repeated reassessments.
• Ensure social and community participation supports remain recognised as essential supports, not optional extras.
The NDIS has allowed my daughter to have some degree of safety, participation, dignity and hope for the future. I ask the Committee to protect these supports for people like her and for the families who care for them every day.
Thank you for considering this submission.
Loving parent to a wonderful daughter who works so hard at all she does-