Submission 25
Dear Committee Secretary,
Please accept this email as my submission to the Senate Community Affairs Legislation
Committee inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026.
I am writing as the mother, full-time carer, and nominee of my son Sammy Joe, who lives with severe and complex disabilities and requires high intensity daily and overnight support.
For years our family has fought to keep Sammy Joe safely living at home, surrounded by family, community, familiarity, and love. The NDIS was originally created to support this exact outcome — enabling people with significant disabilities to live safely and meaningfully in their communities instead of being institutionalised or left without adequate support.
Instead, many families like ours are now living in constant fear.
We are exhausted by repeated reassessments, endless requests for further evidence, tribunal processes, funding uncertainty, and the ongoing pressure to repeatedly prove permanent and complex disabilities that will never disappear.
The emotional and psychological toll on families is enormous.
The current system already places extraordinary pressure on participants and carers, particularly those caring for people with high intensity support needs. Families are overwhelmed trying to coordinate therapies, medical care, reports, support workers, rostering, equipment, behaviour supports, plan management, and crisis management while simultaneously fighting for basic supports to remain in place.
These proposed reforms risk making that pressure even worse.
I am deeply concerned about proposals which may tighten access to the scheme, increase barriers for people with complex disabilities, force people to “exhaust treatments” before receiving support, reduce flexibility within plans, create additional reassessment stress, or allow funding reductions that place vulnerable participants at risk.
People with profound and lifelong disabilities cannot simply “rehabilitate” away their support needs.
Submission 25
High intensity disability support is not a luxury. It is about safety, dignity, survival, and preventing crisis.
My son requires extensive daily and overnight support including respiratory monitoring, oxygen support, PEG feeding, seizure monitoring, mobility assistance, behavioural supervision, repositioning, continence care, and continuous active overnight care. These supports are essential to keeping him safe at home and preventing hospitalisation or institutional care.
Families providing this level of care are already carrying enormous responsibility. Many are physically exhausted, emotionally traumatised, financially strained, and isolated.
There is also a growing culture of fear within the disability community.
Many participants are now afraid to use supports they genuinely need due to fears of audits, debt notices, funding cuts, reassessments, or losing choice and control. This fear is having a devastating impact on mental health and wellbeing.
At the same time, participants and families are too often blamed publicly for cost growth within the NDIS, while larger systemic issues including workforce shortages, provider pricing, administrative inefficiencies, and gaps in mainstream services remain unresolved.
The people most affected by these reforms will likely be those with the highest and most complex needs.
I ask the Committee to carefully consider the real-life consequences these reforms may have on disabled Australians and their families.
Please listen directly to participants, carers, and families living this reality every day.
The NDIS should protect vulnerable people, not create further fear, instability, and trauma for those already fighting to survive within the system.
Families like ours are not asking for luxury. We are asking for safety, dignity, stability, and the ability to keep our loved ones safely at home.
Thank you for considering my submission.
Kind regards,
Submission 25