National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 114
NDIS submission
My name is , and I am the mother and NDIS nominee of my 26- year-old son, JK. JK lives in a Supported Independent Living Cooperative (SILC) model in Ryde, Sydney, with continued close family oversight. He has Level 3 Autism, severe intellectual disability, Ehlers-Danlos Syndrome/hypermobility, Coeliac disease, anxiety and panic disorder, and significant functional impairments. He is non-verbal, non- speaking, cannot read or write, has no road sense, cannot manage any daily living tasks independently, cannot make a decision and requires 1:1 support for all activities of daily living. JK also sustained a devastating injury involving severed nerves, arteries and tendons through glass, leaving him with limited right dominant hand dexterity and further reducing his independence. I am writing because I am deeply concerned about the practical consequences this Bill may have for people like my son and for families already carrying extraordinary caring responsibilities with very limited informal support. This submission is not theoretical. It is based on lived experience over decades.
The Reality of Profound Disability People who do not live alongside severe level 3 autism and intellectual disability often do not understand how vulnerable non- verbal adults can be. JK cannot safely navigate the community alone. He does not understand when he needs to eat, cannot cook safely, shop independently, understand danger, regulate his emotions without structured support, or communicate distress in conventional ways. He relies heavily on visual supports, trusted routines and experienced staff minute by minute. Without those supports, his world rapidly becomes smaller, more fearful and completely unsafe.
Living in supported independent living and Community participation is not a luxury for my son. It is essential disability support. Through the an adult autism services program and his current SIL supports, JK now participates in cooking, collecting and delivering fruit from a farm, bushwalking, walking through parks and the Botanical Gardens, accessing beach walks, and maintaining physical movement and routine therefore decreasing anxiety. These activities are not “extras”. They are the reason he remains mostly emotionally regulated, connected to the world, physically healthier and mentally stable. He does not watch TV or participate in meaningful self directed occupation and needs to be guided minute by minute. Being outside daily and participating in functional activities is healthy and necessary.
What Happens When Support Breaks Down In 2022, JK became so overwhelmed with anxiety and panic disorder, and a gastric ulcer that he stopped leaving his bed for a year.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 114
It took an enormous amount of structured support, patience, routine, visuals, trusted workers, guidance to eat and gradual rebuilding to help him reconnect with the community and regain confidence. We are still rebuilding from that period. If supports are reduced, routines disrupted, or community participation restricted, I fear he could return to that level of isolation and crisis again. That was JK’s second crisis, the first was in 2016 when he had to leave the family home after injuring all family members, go to a mental health unit, be ousted because he was disabled, blocking a wing of the unit and costing the government over reportedly $5000 day.
The likely consequences are not hypothetical: • increased self-injurious behaviours • severe anxiety and obsessive behaviours • withdrawal and isolation • deterioration in physical and mental health • inability to maintain his SIL placement • crisis presentations to mental health or hospital systems • greater long-term costs to government systems • extreme stress and burnout on already exhausted families
For people with severe autism, prevention matters. Routine matters. Trusted relationships matter. Stability matters. The NDIS has allowed preventative support that avoids far more serious crisis outcomes.
Supported Independent Living is Essential JK’s SIL placement is not optional housing support. It is essential for his safety, wellbeing and survival. Before appropriate supports, he experienced mental health crisis and was effectively pushed into systems that were not designed for disabled people with complex needs. The NDIS changed that. Supported Independent Living has given him: • stability • safety • consistency • regulation • community participation • dignity • a life beyond mere containment I need the Committee to understand that families cannot simply “absorb” these supports if funding is reduced. I am already caring not only for JK administratively, but also for elderly and unwell family members, including an 80- year-old mother and father, a Vietnam veteran with end stage kidney disease. I am profoundly unwell with autoimmune disorders, anaphylaxis and chronic fatigue syndrome. JK’s father left the family years ago and moved interstate. There is very limited informal family support available. I cannot physically, emotionally or practically replace a 24/7 disability support system. Without SIL, the consequences for our family would be absolutely catastrophic and JK would be a ward of the state.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 114
Concerns About the Proposed Changes I am particularly concerned about: • reductions or restrictions to social and community participation supports • Reductions to NDIS SIL care ratios • narrower interpretations of “reasonable and necessary” • increasing expectations on unpaid carers and ageing parents • reassessments and functional assessments that may fail to properly capture profound autism and non-verbal disability • instability and uncertainty around essential supports • loss of participant choice and control People like my son do not suddenly become less disabled because policy language changes. Severe autism and severe intellectual disability are lifelong conditions. Repeated reassessment processes can create enormous fear and instability for families who already live under chronic stress. I am also concerned that policymakers underestimate how much unpaid labour families already provide. Many carers are ageing, exhausted, financially strained and frightened about the future. The NDIS should not be balanced on the backs of burnt-out mothers who are physically incapable of doing more.
Community Participation Prevents Crisis Programs like Adult Autism Services and supported outings, farm activities, walking programs and structured community access are often misunderstood as non-essential. For my son, they are exactly what prevents decline. These supports: • maintain emotional regulation • reduce anxiety and behavioural distress • are functional • improve physical health • reduce isolation • build routine and confidence • prevent hospitalisation and crisis escalation • support the sustainability of SIL placements Removing or reducing these supports would not save money in the long term. It would simply shift costs into hospitals, emergency systems, mental health services and already overwhelmed families. We have already experienced that.
Recommendations I respectfully ask the Committee to recommend:
- Protection of funding for social and community participation supports for people with profound disability.
- Continued access to Supported Independent Living for individuals with lifelong high support needs, especially 1:1 and 1:2 care ratios.
- Recognition that routine, trusted relationships and community access are essential supports for people with profound autism.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 114
- Reduced reassessment burdens for participants with permanent and severe disabilities.
- Greater recognition of the limits of unpaid family caregiving, particularly for ageing carers and families with limited informal support.
- Functional assessments that properly recognise the realities of non-verbal autism and severe intellectual disability.
- Protection of participant choice and control, including continuity of trusted supports and providers.
Conclusion The NDIS has been life-changing and life-saving for my son. Without it, I genuinely fear he would return to isolation, crisis and severe mental distress. The supports he receives are not luxuries. They are what allow him to participate in the world safely and with dignity. His support workers are his voice, eyes and ears. They are trusted and skilled, and interpret the world for JK.
I ask the Committee to remember that behind policy language are real human beings with profound disabilities, ageing parents, exhausted carers and vulnerable families trying desperately to maintain stability. Please do not create a system that removes support only once families are already in crisis. People like JK deserve safety, dignity, routine, community and a meaningful life as we all do. Thank you for considering my submission.