National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3429
We write this submission on behalf of our profoundly disabled son. is now 23 years old. He was diagnosed with West Syndrome (Infantile Spasms) when he was 7 months old. He has Autism Spectrum Disorder (Level 3 as classified under the DSM-5), Intellectual Disability (Severe as classified under the DSM-5) and Epilepsy. He lives at home with us, his parents, where we provide his care. He requires 1:1 supervision 24 hours a day, 7 days a week. has a history of complex behavioural issues including violent outbursts resulting in harm to self, others and property damage. does not read or write. He is effectively non-verbal. His ASD and ID are permanent; he will not “get better”, he will not improve and he will need specialised care for the rest of his life.
has been an NDIS participant since 2014.
At the end of 2020, we were focussed a successful transition from Special School to a post school program. Following a long and highly traumatic process, which only ended with determination from the then AAT, ’s plan was funded for him to access a Day Options program with one-on-one support 5 days week. This continues to be 100% funded through the Social and Community Participation line in ’s plan.
His Day Options program includes focus areas of community, wellbeing, independence, communication and movement. He is assisted towards achieving his NDIS goals so the each has a purpose that feels meaningful him. Routine and predictability is very important to , so his program has set themes and planned activities, but also allows him to make choices and be in control of his life as much as possible.
Any reduction in ’s Social and Community Participation would be devastating as his Day Options program is essentially his only life outside of the home. Any reduction to this effectively isolates him from the wider community with no other interactions beyond his two aging parents.
We urge the Government to reconsider this aspect of the planned reforms.