National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2657
National Disability Insurance Scheme Amendment (securing the NDIS for future generations) Bill 2026
To whom it may concern,
I am writing as an NDIS Participant living with a permanent degenerative disability called Fascioscapulohumeral Muscular Dystrophy.(FSHD) This disability is permanent and progressive and has affected my life greatly and will continue to do so into the future. I no longer have the ability to walk and rely on a power wheelchair for my mobility. I also rely on multiple pieces of assistive technology equipment and therapies to keep some independence in my day to day life. The NDIS has made these things possible. I live with my husband and 2 children who all work and are tax payers.
I am strongly apposed to the NDIS Amendment Bill 2026 in it’s current form. I am concerned that some of the proposed changes will make it more difficult for participants to access supports and will reduce inclusion and independence.
I am apposed to many things in the bill including:
*Standardised plans: My disability is degenerative and will become worse over time. It does not and will not present the same way as another person with FSHD. Standardised NDIS Support Packages will fail people who need individually tailored plans. My needs and circumstances are unique, and I do not believe a standardised approach can fully reflect the reality of my daily needs.
*Loss or reductions in supports: Cutting funding to entire categories such as Social and Community Participation is extremely concerning. Participants being able to access the community whenever and wherever they want with support is a necessity. We should be able to access the shops, movies, markets, walks at the beach etc as a well as medical appointments and grocery shopping, just like able bodied people.We should not be forced to stay in our homes. Group programs alone cannot be a substitute for Individual community and social participation. We should not live in fear that essential supports may be suddenly removed or denied.
*Choice and Control: We should have Choice and Control over what we do with our NDIS funding and who we choose for our support and therapies. Reduced choices may lead to poorer outcomes and and a lower quality of life.
*Changes to Reassessments and Plan Reviews: I don’t agree with reduced flexibility during a crisis or changing circumstances. My disability is degenerative and constantly changing, I never know when I may need to be reassessed for changes in my abilities and may need extra supports and equipment. Any reduction in flexibility, increased administrative burdens, or restrictions on supports will have a significant impact on participants and their families.
I would like to keep living with the same level of independence and wellbeing I have now and well into the future and I urge the committee to carefully consider the impacts these changes will have on participants and their families. Please do not pass the NDIS Bill in it’s current form.
Thank you