National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 98
My name is and I am the parent/carer of my 30-year-old son who is a NDIS participant.
My son has been receiving NDIS funding since 2018 as a result of his moderate intellectual disability, Autism Level 3 across all domains, Savant Syndrome, severe expressive and receptive language disorder, obsessive compulsive disorder and anxiety mood disorder. His recent functional capacity assessment highlights he is functioning significantly below that of his peers, operating at less than 1% of the general population in adaptive functioning. ’s literacy and numeracy skills are at an early primary school level, with limited ability to independently problem-solve, self-regulate emotions, or generalise learning across environments.
His plan funds various supports, including:
Improved Daily Living, CB- assessments from therapists and training for supports Assistance with daily life to support him with self-care activities, cooking/cleaning
Assistance with social, economic and community participation- has his own micro-enterprise and he requires assistance accessing the community safely in order to maintain his business
Exploration and Design to explore living options, requires 24/7 care Behaviour Support funding to address his behaviours of concern 28 days of 24/07 1:1 funding for STR
Unfortunately, in April 2025 the Agency reviewed ’s plan and made a decision to dramatically
decrease funding and consequently I had to reduce my working days as could not be leftat home by himself as he is unsafe and unable to care for himself. With the reduced income we struggled financially and we were then having to spend time assisting with all aspects of his daily life, including assisting him with his micro-enterprise.
My husband and I are transitioning towards retirement, we have our own health concerns and we were feeling extremely stressed and overwhelmed. We are also caring for other family members; my mother-in-law passed away from cancer during the ART process and my father-in-law requires a high level of physical/emotional support. ’s maternal grandmother has dementia; maternal grandfather receives a level 3 aged care package. Additionally, ’s father is also the enduring power of attorney for his aunt who has reduced capacity. During the ART process he was regularly sleeping over at her home at Woodville once a week whilst she undergoes ECT under GA as an
outpatient for major depression. ’s brother, , is single, and has temporal lobeepilepsy and pancreatic insufficiency syndrome, non-NDIS participant. We had limited capacity to support him whilst we provided with 24/7 care.
At the end of 2025, during the ART process, the Agency decided that increasing ’s funding by 200 per cent was reasonable and necessary and in accordance with the current legislation/Act. I also obtained a report via FOI from the NDIS technical and advisory team that stated required substantial more funding than he had received in April, 2025- including CORE so he may access the community to continue his micro-enterprise.
I am extremely concerned if the proposed change of reducing funding for Social and Community Participation is passed will once again have his funding slashed and I will be forced to reduce my working days. I am currently feeling extremely stressed regarding the proposed changes, I am losing sleep and I extremely worried about how will cope without his micro-enterprise. Knowing , he will be extremely difficult to live with and we will have to spend all of our own down time assisting him. My husband and I have discussed this possibility and have decided we will be regrettably surrendering him to fulltime care.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 98
has dreams that ordinary people take for granted; if he does not have the appropriate funding to support him, many of his dreams will vanish. ’s ability to hold a job/change job, his ability to better himself, his ability to engage in the community and, his ability to live a life of his choosing will not be fulfilled.
I do agree the NDIS requires substantial changes; however, I do feel that cutting funding to the participants should be the last resort. Please reconsider the proposed, ‘securing the NDIS for Future Generations Bill’.
I would be more than happy to discuss my concerns further.