National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1518 Good Evening *** Update from Parliament - NDIS changes. Have your say.
My name is [redacted], and together with my husband [redacted], we are the primary carers for our son, who is 39 years old. Our son lives with Autism Spectrum Disorder, Intellectual Impairment, Attention Deficit Hyperactivity Disorder, anxiety. For thirty-nine years he has had us as his main source of care support advocacy We write this statement not seeking sympathy but honestly conveying what sustained caregiving cost us fear future proposed changes NDIS Legislation ##-The Unpredictable Relentless Nature Son’s Needs What makes our sons needs particularly exhausting extent unpredictability combination diagnoses means two days alike change routine sensory trigger shift anxieties can escalate rapidly without warning crisis requiring immediate skilled intervention live constant state readiness unable fully relax because never know next hour may bring Value therapeutic supports currently receives cannot overstated therapy taken years established produced measurable improvements ability manage emotions communicate needs engage daily life safely These gains fragile Any reduction removal these supports would simply pause progress risk reversing wellbeing level support need provide absence Continuity therapy optional son foundational Ageing Carers Serious Health Burdens ageing capacity sustain level care diminishing abstract I depression anxiety conditions developed deepened over years stress isolation Managing own mental health while remaining present capable son ongoing exhausting balancing act D recently faced serious aggressive cancer diagnosis treatment significantly impacted strength energy availability Two ourselves entire support structure depends upon unwell Conversations dominated by sons needs logistics care love one another and we love son — honest enough say decades pressure took toll minimise Informal Support Network extremely limited Daughter K willing help loves her brother deeply However complexity unpredictable nature sons needs realistically able assist during genuine emergencies even short periods Absence home part requires extensive planning preparation coordination carries significant risk Rare breaks have been length constrained dependent careful arrangements always reliable Beyond [redacted] no other family friends who are relief ##The Compounding Impact Insufficient Funding
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1518
When our son’s funded supports are inadequate when hours are reduced services unavailable funding does not keep pace his needs gap disappears directly falls us fill Every shortfall in plan translates additional care stress and cost absorbed two ageing unwell carers who have no capacity absorb The relationship between underfunded supportcarer breakdown direct measurable household. The financial toll lifetime caregiving has also been significant Years employment affected superannuation savings ability meaningfully own futures including own care needs age.