Submission 1420

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, , a profoundly disabled and medically complex child requiring 24-hour high-intensity care and support.

I strongly oppose the proposed NDIS reforms and believe the bill will have devastating consequences for children like , for families already living under extraordinary care burdens, and for people like myself who live with psychosocial disability while simultaneously acting as full-time carers.

This bill creates significant fear and uncertainty for families like ours. Rather than strengthening the safety and sustainability of the NDIS, these reforms risk removing or reducing supports from the very people who rely on them for survival, stability, safety, and dignity.

The Reality of ’s Disability and Care Needs

    is a three-year-old child with severe and permanent disabilities including:

• 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

    is non-verbal, non-mobile, PEG fed, unable to swallow safely, and requires constant monitoring to remain alive safely at home.
  

Her reports document:

• Up to 70–95 seizures per day during periods of instability
• 800 seizures within a 14-day period
• Oxygen desaturation episodes as low as 60%
• Frequent airway suctioning throughout both day and night
• Life-threatening aspiration risks

Submission 1420

• 24-hour active support requirements
• 2:1 care requirements due to the intensity and complexity of her medical needs

The reports also confirm that ’s conditions are lifelong, severe, permanent, and affect every domain of functioning. She scored below the 1st percentile across all functional assessment domains and requires full support for every aspect of life.

These are not temporary or mild support needs. These are life-sustaining supports.

The Proposed Reassessments Create Fear and Trauma

One of the most distressing aspects of this bill is the proposal to reassess existing participants under stricter eligibility frameworks.

Families like ours already live in a constant state of crisis management, sleep deprivation, emotional trauma, and hypervigilance. We are already required to repeatedly prove the severity of our child’s disability through reports, assessments, hospital documentation, and endless advocacy.

The idea that families caring for profoundly disabled children may again be forced to “justify” life-saving supports is deeply traumatising.

    ’s reports clearly show:

• She requires 24/7 high-intensity care
• She requires two support workers at all times
• She cannot survive safely without intensive supervision and intervention
• Her needs are increasing, not decreasing

Yet this bill creates fear that even the most vulnerable participants may have their supports questioned, reduced, or destabilised.

For families like ours, the consequences of reduced supports are not inconvenience. The consequences are:

• Increased hospitalisations
• Medical deterioration
• Carer collapse
• Mental health crisis
• Unsafe care environments
• Risk to life

The Bill Fails to Recognise the Reality of Psychosocial Disability

I also live with psychosocial disability myself, including significant mental health challenges and severe caregiver burnout.

Submission 1420

’s reports specifically document:

• Severe caregiver burden
• 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.

The reports document that:

• I have no time for myself
• I feel overwhelmed by the care demands
• I fear for ’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 reduces,
• and the risk of hospitalisation and family crisis significantly increases.

The NDIS does not simply support . It holds together the fragile stability of our entire family 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

Submission 1420

• staff training,
• overnight monitoring,
• and emergency response.

The reports clearly state that this level of care goes beyond what should reasonably be expected of a parent.

Despite this, families like ours continue to absorb enormous emotional, financial, and physical costs.

If supports are reduced or reassessed under stricter criteria, the burden simply shifts onto exhausted families and overwhelmed hospital systems.

This is not sustainable.

Early Intervention and Ongoing Supports Save Lives

The proposed reforms risk undermining early intervention and continuity of support for medically complex children.

Children like cannot afford gaps in support.

Her therapies, equipment, support workers, and multidisciplinary care team are essential to:

• maintaining stability,
• preventing deterioration,
• reducing hospital admissions,
• managing pain,
• supporting respiratory safety,
• maintaining nutrition,
• and preserving quality of life.

The reports specifically note that without ongoing support, is at significant risk of regression and deterioration.

The proposed reforms create uncertainty around the very supports that keep medically fragile children alive at home.

The Human Cost Cannot Be Ignored

This bill appears heavily focused on reducing costs and slowing NDIS growth.

However, it fails to acknowledge the human cost of reducing support to vulnerable people and families.

Families like ours are already operating beyond capacity.

We are not over-supported. We are surviving.

Submission 1420

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 reforms
• 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.

For my daughter , the NDIS is not optional.

It 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,

Mother and Primary Carer of