National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1835
28th May 2026
I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the NDIS Amendment Bill 2026.
I have 2 children, 17 years and 14 years old, who have a neurological genetic condition called Angelman syndrome, a permanent significant complex disability. Their functional capacity is affected by a profound intellectual disability, no verbal speech, low muscle tone, sensory processing disorder, sleep disturbances, epilepsy and behavioural difficulties. They require 24/7 lifelong individualized support However, they are affectionate, curious, sociable and determined. My husband and I have no other children and all our family lives overseas. I self-manage my children’s plans. Balancing the support needs of each child is a juggling act. My 17-year-old daughter accesses inclusive programs - soccer, footy and dance- weekly, while my 14-year-old son requires intensive one on one physical input from specialised professionals.
They have both overall received wonderful supports through their NDIS funding enabling them to improve their communication via a speech device, maintain their physical health through therapy and inclusive group activities and develop their living skills. Being teenagers, they also value the opportunity to make friendships with peers and access the community around them. The children have had several crisis episodes including ICU admission, 7-week hospital admission, broken arms x 2, and several other 3–4-day hospital admissions. Without the NDIS funded support workers and therapy team, my husband and I would have been at breaking point physically and mentally.
Whilst I appreciate that the NDIS scheme needs to be sustainable, it must not come at the expense of safety, dignity, and human rights.
There are various items in the NDIS bill which concern me.
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Extending the time for the NDIA to decide a reassessment from 21 days to 90 days. 3 months is a significant length of time to be without appropriate supports if there is a significant change of circumstances, creating a safety issue for the participant, and potential families in crisis.
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Undoing of the “whole of person” approach reversing Eastham 2006. A participant with a complex disability has multiple interrelated impairments, one impairment has a bearing on another. For example, when my daughter was in ICU with pneumonia, she took a long time to rehabilitate from this due to her syndrome; mobility difficulty, intellectual disability and the need for assistance even when she is in good health -all came into play. She needed to use her NDIS therapy team for rehabilitation, they understand her, they have a trusted relationship with her, they know the strategies that engage her. She required intensive therapy, plus assistance from workers every day to do the therapy. The health service did not have the capacity to provide that. The hospital physiotherapist provided for the meagre two sessions had no experience with intellectual disability and the sessions were ineffective.
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Removing section 31 “Reasonable and necessary supports” language
The principle of reasonable and necessary is key to understanding an individual participant’s support needs and creating funding decisions. Removing this language facilitates standardised rulings that do not account for personal goals and choice and control by the participant.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1835
- Proposed section 34A- New support determinations made by the Minister by legislative instrument
- Proposed sections 33 (2EA) and 33 (2EB) - Setting of caps on supports by the Minister by legislative instrument
These two amendments move away from individualised supports through blanket rulings with no recourse for participants to challenge decisions.
When my sons last NDIS plan was reviewed, I requested a plan review meeting but was denied a meeting. When I received the plan, the planner had changed his STA ration from 1:1 to 1:3. This is an unsafe ratio of support. My son was unable to access STA for 9 months while I went through the internal review process and then the ART process. The decision was made to reinstate 1:1 STA funding. Blanket funding cuts or ratio changes cannot safely apply to people with severe intellectual and communication disabilities. A safeguard is essential to prevent injury, abuse and crisis.
The proposed support determination of cutting social and community participation from 30- 50% will mean people like my teenage daughter cannot access her inclusive sports and dance groups. Unlike most parents of teens, I cannot act as mere taxi driver for activities. My daughter requires intensive one on one support during the activity, supporting her communication and understanding, physical ability, redirecting behaviours and a level of personal care. She has spent years building capacity and social inclusion. These activities are supported by a team of trained workers and myself. At the same time my son has weekly exercise physiology, hydrotherapy, and two on one gym sessions, all to prevent his physical self from deteriorating. Again, these activities are supported by a team of trained workers and myself. I do not have the capacity to do all this alone. I risk carer burnout, physical injury, my children being isolated at home and a deterioration of their condition.
I worry that support cuts transfer the burden of care back on to ageing parents such as ourselves. I worry that support cuts for people with severe communication disabilities will lead to greater behavioural challenges and isolation. My children become so frustrated at having no verbal speech, they hit and throw items to convey their intention. Speech therapy and trained workers are integral to their behaviour management, safety and participation.
There needs to be parliamentary oversight and co-design with the disability community before any new rules take effect.