National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2255
We live in Adelaide, in Minister Butlers electorate and are writing to express our deep concern regarding the proposed changes to the NDIS contained in the Future Generations Bill 2026. Our 24-year-old son has profound disabilities and requires 24/7 care. He has cerebral palsy, dysphagia, hearing and vision impairments, is non-verbal, cannot walk, eat or drink independently, is incontinent and requires full assistance with all personal care, including showering, dressing, transfers and mobility.We believed the NDIS was created to support people exactly like our son.My husband and I are nearing 60 and every decision we have made since our son was born has centred on helping him live the fullest and most meaningful life possible — both now and after we are no longer here. We want him to be safe, stimulated, socially connected and able to participate in the community as fully as his disabilities allow.Unfortunately, we have previously been failed by two NDIS-registered providers whose substandard day programs resulted in our son developing severe self-harming behaviours. As his parents, we know these behaviours are his way of communicating distress.Like any 24-year-old, our son does not want to spend his life isolated at home with his parents.He wants friendship, connection, stimulation and enjoyment. With the right support, he attends concerts, swims at the pool, explores nature and socialises with other young people with disabilities.To make this possible, our family created our own day program and carefully sourced and trained a team of independent support workers who understand our son’s highly complex needs. These workers are trusted members of our son’s support network and provide care with dignity, consistency and genuine respect.This program brings together four other young men with similar disabilities, allowing them to participate in activities and social experiences together with people their own age.The proposed bill threatens to dismantle the life and supports we have worked so hard to build for our son.In particular, we are deeply concerned about: • Proposed reductions to social and community participation funding which would leave our son isolated at home instead of actively participating in the community alongside his peers. • Requirements forcing participants to use only registered providers and workers. This would remove our choice and control over who provides extremely personal and intimate care to our son, replace trusted carers with unfamiliar workers and likely result in the return of the severe distress behaviours we have fought so hard to overcome. • Expanded ministerial powers to reduce funding for groups of participants regardless of their individual assessed needs, despite families being required to spend thousands of dollars obtaining functional capacity assessments at the direction of the NDIA.We are also concernedabouttheproposedI-CANassessmentsandwhetherindividualneedswillgenuinelybeconsideredinfuturefundingdecisions.At present, many people with disability and their families already feel fearful and uncertain when dealing with the NDIA.Rules and interpretations appear to change constantly and familiesareoftenleftfeelingthatlegislationandpolicyarebeingappliedinconsistently.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2255
We ask that you carefully examine the proposed bill and consider the real-life impact these changes will have on people with profound disabilities and the families who care for them. We–urge you to advocate for amendments that preserve participant choice and control, preserve community participation supportss and ensure funding decisions are made according to individual needs. Our son deserves an opportunity to leada meaningfuleeconnectedanddignifiedlife.These proposed changes put this in jeopardy. Yours sincerely,