National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1101
To the Senate Community Affairs Legislation Committee,
I am writing as the parent of a 17-year-old daughter who will soon turn 18. Our daughter lives with severe intellectual disability, Autism Spectrum Disorder Level 3, cortical vision impairment, incomplete paraplegia and oropharyngeal dysphagia. She is non-verbal, incontinent, unable to feed herself independently, experiences severe sleep disturbance, and requires 24/7 care and supervision.
Over the past six months, our family has worked incredibly hard to establish our daughter in her own Supported Independent Living (SIL) home. I manage this while also maintaining employment. This arrangement has been life changing and life saving for our family. For the first time in many years, our daughter is settled and happy, and my husband, daughter and I feel that we can finally breathe again.
I am deeply concerned that the proposed changes in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 could jeopardise the stability of our daughter’s current living arrangements and supports. Any significant changes to her SIL supports or eligibility would have devastating consequences, not only for her wellbeing and safety, but for our entire family.
Families like ours have already spent years navigating complex systems, advocating constantly, and carrying enormous caring responsibilities. We have worked very hard to reach a stable and sustainable situation. Changes that create uncertainty around essential supports risk undoing years of progress and causing significant emotional, financial and practical harm.
I urge the Committee to carefully consider the impact these proposed changes may have on people with profound disabilities and their families, particularly those relying on Supported Independent Living arrangements to maintain safety, stability and family wellbeing.
Thank you for considering my submission.