Submission Opposing the Proposed NDIS

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.

Strongly opposing proposed reforms that will have devastating consequences on children like redacted, families under extraordinary burdens already living with psychosocial disability while acting full-time caregivers also face significant fear due to these changes which risk removing or reducing essential supports needed daily survival stability safety dignity.

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

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 redacted’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 severityof our child’sdisability throughreports, assessments, hospital documentation ,` dependless advocacy .The idea that families caringfor profoundly disabled children may again be forcedto “justify”life-savingsupportsis deeply traumatising.‘ s reports clearly show: • Sherequires high-intensitycare, • Sherequires twosupport workersatalltimes, • Seshouldnotsurvive safely withoutintensive supervision anda nd intervention, • Herneedsare increasing,n ot decreasingYetthisbillcreates fearthat eventhe most vulnerableparticipantsmay have their supports questioned,reducedor destabilised.Forfamilieslikeours,the consequenceso f reducedsupporthsre not inconvenience.Theconsequences ar e:IncreasedhospitalisationsMedical deteriorationCarer collapseMental healthcrisisUnsafe care environmentsRisktolife# The Bill Fails t o Recognise th e Reality fo r Psychosocial DisabilityI also livewith psychosocial disability myself, including significant mentalhealth challenges and severe caregiver burnout.

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

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 <redacted>’s future•I fear not being able to continue coping without support•I am at significant risk of psychological breakdownThe 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,andthe riskof hospitalisationand family crisis significantly increases.The NDISdoesnot simplysupport <redacted>�.It holds togetherthefragile stabilityofour entirefamily system.## The Reforms Ignore the Economic Reality of Unpaid Care𝋰` already reliesheavily on unpaid carers.Our familiyprovidesenormous amountsunpaid labour every single day:

• medication administration -seizure monitoring PEG feeding airway management clinical observations advocacy therapy implementation care coordination

• 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 FAMILIESAND overwhelmed HOSPITAL SYSTEMS.This IS NOT sustainable.Early Intervention And Ongoing Supports Save LivesTHE PROPOSED REFORMS RISK undermining early intervention AND continuity OF Support FOR Medically complex CHILDREN.Children Like redacted 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,redacted is at significant riskOf regression AND deterioriation.THE proposed reforms create uncertainty around THE very supports THAT keep medically fragile children alive AT home.the human cost Cannot Be IgnoredThis bill appears heavily focused on Reducing costs and slowing NDIS growth.However,it fails to acknowledge the Human Costof reducing supportTo vulnerable people AND families.Families like ours are already operating Beyond capacity.Weare not over-supported. Wearesurviving.

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

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 redacted, 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 ofredacted``