Submission Opposing the Proposed NDIS Bill

Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

To Whom It May Concern, I am writing this submission as the mother and primary carer of my daughter, redacted, who has profound disabilities requiring high-intensity care.

I strongly oppose the proposed reforms because I believe they will have devastating consequences not just on children like me but also families already living under extraordinary burdens due to psychosocial disability while acting full-time caregivers alike! The bill creates significant fear & uncertainty; instead strengthening safety/sustainability it may remove/reduce supports crucially needed for survival/stability/security/dignity.

The Reality Of Redacted’s Disability And Care Needs

• Hypoxic Ischemic Encephalopathy(HIE)
• Severe Quadriplegic Dystonic Cerebral Palsy(GMFCS Level V)
• Medication resistant epilepsy
• Bulbar dysfunction
• Profound intellectual disability
• Global developmental delay
• Cortical visual impairment
• Kyphoscoliosis
• Bilateral hip subluxation

This child is non-verbal/non-mobile/PEG fed/unable swallow safely needing constant monitoring at home. Her reports document:

• Up-to seizures per day during periods instability
• Within a period seizure count 800 within days
• Oxygen desaturation episodes low as %
• Frequent airway suctioning throughout both day and night
• Life-threatening aspiration risks 24-hour active support requirements

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2250

• 2:1 care requirements due to the intensity and complexity of her medical needs The reports confirm that ‘XXX’s conditions’ are lifelong, severe, permanent, affecting every domain of functioning. She scored below the first percentile across all functional assessment domains, such as requiring full support in every aspect of life. The need is ongoing rather than temporary or mild; these require life-sustaining supports.

Proposed Reassessments Create Fear and Trauma One distressing feature proposed under this bill involves reassessment existing participants using stricter eligibility frameworks.Families like ours already face a constant state crisis management, sleep deprivation emotional trauma hypervigilance repeatedly proving severity through assessments hospital documentation endless advocacy.The idea families caring profoundly disabled children may again be forced justify lifesaving supports deeply traumatises.’XX’s reports clearly show:

• She requires high-intensity continuous-care
• Two workers at any time
• Cannot survive safely without intensive supervision intervention Her needs increasing not decreasing.Yet even most vulnerable participants fear their supports questioned reduced destabilised.For our family consequences reducing supports inconvenience increased hospitalisations deterioration carer collapse mental health crisis unsafe environments risk-life ## The Bill Fails Recognise Reality Psychosocial Disability I also live psychosocial disability myself significant challenges caregiver burnout. Reports specifically document: Severe care burden

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2250

• Extreme carer burnout
• Significant psychological strain
• Fear of losing the ability to continue caring safely
• Loss of social connection
• Physical and emotional exhaustion
• Hypervigilance and ongoing trauma The Caregiver Burden Scale placed me within the “Severe Burden” category.

Reports document that:

• I have no time for myself
• I feel overwhelmed by the care demands
• I fear [redacted]’s future
• I fear not being able to continue coping without support
• I am at significant risk of psychological breakdown

The proposed reforms fail to adequately recognise that psychosocial disability is often fluctuating, cumulative, and heavily impacted by environmental stressors. Reducing supports does not create independence for families like ours. It creates collapse. Without appropriate NDIS supports: my mental health deteriorates, my functional capacity declines, .my ability to safely care for[ redacted ] reduces, and the risk of hospitalisation and family crisis significantly increases.The NDIS does not simply support[ redacted ].It holds together the fragile stability of our entirefamily system. The Reforms Ignore the Economic Reality of Unpaid Care The NDIS already relies heavily on unpaid carers.Our family provides enormous amounts of unpaid labour every single day:medication administration,,seizure monitoring,,,PEG feeding,,,,airway management,,,,,,,,clinical observations,,,,,,,,advocacy

• therapy implementation,
• care coordination
• staff training. overnight monitoring,

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2250

We are not over-supported. We are surviving. The supports we receive are not luxuries. They are life-sustaining.

Recommendations

I strongly urge the government to:

• Withdraw the bill in its current form
• Protect existing participants from reassessment under stricter eligibility criteria
• Preserve access for children with profound and medically complex disabilities
• Ensure psychosocial disabilities remain appropriately recognised
• Protect families experiencing severe carer burnout
• Maintain participant rights, dignity, and choice
• Conduct genuine consultation with disabled people and carers before implementing reform
• Recognise the long-term economic and human value of early intervention and continuity of support

Conclusion

The NDIS was created to support vulnerable Australians to live safely, participate in their communities, and maintain dignity and quality of life. text redacted is what allows her to remain alive, cared for, and safely at home with her family.For me, as her mother and primary carer living with psychosocial disability, the NDIS is the difference between fragile stability and complete collapse.These proposed reforms create fear, instability, and uncertainty for families already carrying extraordinary burdens.I ask that the voices of families like ours be heard before changes are made that could have irreversible consequences for some of the most vulnerable people in Australia.Sincerely, motherredactedandPrimaryCarerofof28/05/2026