National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1584
Senate Submission
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
About Our Family:
My name is and together with my husband ( ) we are the parents/primary carers of , who is 31 years of age and has significant permanent brain damage (he was born with this). ’s challenges include severe intellectual impairment, cerebral palsy, a vision impairment, no speech, total incontinence and uncontrolled epilepsy (4-6 major seizure per day). requires a wheelchair while attending his day programmes.
’s current NDIS plan (his 6th plan, a participant since 2018) funds his attendance at a
supported day programme 4 days a week 1:1 support (7 hours per day) plus allied health services (OT/Speech/Physio). also accesses STA outside of the home and also support worker hours for in home care.
We have successfully self-managed ’s plans.
The NDIS has had a significant impact on and he is living his best life with NDIS funding support.
Why I am concerned about this Bill:
The 50% cut to social and community participation funding – the day programme is not optional.
For living at home, his day programme is not a leisure activity. It is where develops skills, maintains social connections, and has a life of his own outside the family home.
My husband and I, together with allied health professionals and support workers, prepare and discuss ’s participation in his day programmes that is relevant and positive specific to ’s needs, it is not a babysitting programme and we make sure of this.
The proposed 50% cut to social and community participation funding, which is how day programme attendance is funded, would directly reduce the number of days (hours) can attend. requires a 1:1 ratio of support and cannot attend at a lower level of staffing. ’s care needs have not changed.
If funding for day programme attendance is cut, will be at home with myself and my husband 1-2 additional days per week (potentially home 4-5 days per week). gets bored at home (and this increases challenging behaviours). My husband and I do our best to stimulate and make his life enjoyable and relevant. But we would significantly struggle to provide the level of stimulation, skill development and safe engagement that the day program provides.
Parental responsibility assumptions
My husband and I are ’s primary (full time) carers. We are both in our mid to late 60s.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1584
The level of care we provide is substantial, skilled and ongoing (24/7). The Bill proposes to embed an assumption that parents will continue to provide ‘substantial care’ without any consideration of our age, health, capacity, or the sustainability of our caring role.
As my husband and I both age (and have age related health issues), reducing ’s funded support is not a saving, it is the creation of a future crisis.
What I am asking
- Reject the 50% social and community participation cut
- Removed proposed section 34A in its current form or require individual assessment before any determination affects a particpant’s plan
- Require the parental responsibility provisions to include consideration of carer age, health and sustainability
- Maintain the right to seek plan review when a family’s circumstances change, including when a carer’s health declines
The big picture for and our family:
Our long term goals for are for him to live a happy life where all his needs are taken care of in a meaningful, structured and importantly a SAFE environment. This takes the form of 1:1 support with 24/7 care.
NDIS funding for social and community participation has been vital for as he works towards short and long term goals.
Reduction in the above mentioned funding will negatively impact ’s life and the ripple effect on the family will be devastating.
Thank you