Submission 2044

Submission to the Senate Community Affairs Committee Regarding Proposed NDIS Legislative Reforms and Future Changes to the NDIS Submitted by: I am writing this submission as a disabled single mother, full-time carer, and NDIS participant.

My daughter is also an NDIS participant with extremely high support needs, including complex medical care, mobility impairment, and near 24-hour support requirements. I am deeply concerned about the direction of the proposed NDIS reforms and what they will mean for vulnerable participants and families like ours. The NDIS is already failing us now, before these additional reforms and restrictions have fully taken effect. I fear what comes next. I fear homelessness. I fear institutionalisation. I fear being physically unable to continue caring for my daughter. I fear my daughter being forced into unsafe or inappropriate care arrangements because practical community-based supports continue to be denied.

Most of all, I fear a future where disabled people are once again expected to survive on exhaustion, sacrifice and unpaid family labour while governments describe it as “sustainability”. These systemic failures undermine Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), particularly:

• Article 19: the right to live independently and be included in the community
• Article 28: the right to an adequate standard of living and social protection

Article 5: equality and non-discrimination

Article 7: the rights of children and young people with disability My daughter has now waited more than six and a half years for basic supports including:

• a power assist wheelchair
• bathroom modifications
• an accessible ramp
• temporary accommodation support during renovations These are not luxury requests. These are essential disability supports directly connected to her independence, dignity, safety and participation in community life. Instead, our lives have been consumed by:
• endless delays
• repeated evidence requests
• internal reviews
• tribunal hearings
• administrative errors
• contradictory NDIA decisions
• inaccessible systems
• escalating emotional and financial distress For over six years, we have been trapped in bureaucracy while my daughter’s life has continued to pass by.

She missed opportunities to attend school properly, build peer relationships, access her community independently and experience normal parts of young adulthood

Submission 2044

because she remains physically trapped by a system that acknowledges she needs support but continually obstructs access to it. The cumulative trauma of spending more than six years in constant conflict with the NDIA cannot be overstated. Families like mine live in permanent uncertainty. We are forced to repeatedly prove permanent disability. We live under constant threat of funding changes, reviews, reassessments and appeals. Years become consumed by paperwork, hearings, evidence gathering and fighting for supports that professionals have already agreed are necessary.

This prolonged administrative and legal stress causes enormous psychological harm to both participants and carers. At the centre of this issue is one devastating reality: The NDIA has effectively created a situation where my daughter can either have her independence, or she can have her mother physically capable of continuing to care for her. Apparently we are not allowed to have both. Because right now, I physically push her manual wheelchair everywhere. That daily physical labour is destroying my body. I live with ongoing injuries including back injuries, elbow injuries, ankle injuries and chronic physical strain from years of full-time caring. I am disabled myself and also an NDIS participant. My daughter desperately needs her power assist wheelchair so she can safely move independently and reduce the enormous physical burden currently placed on me.

After more than six years of fighting, the wheelchair, ramp and bathroom modifications were finally approved. But despite this, the works still cannot proceed because the NDIA refuses to fund approximately $5,500 to cover my portion of temporary accommodation while our home becomes inaccessible during renovations. That is all that stands between my daughter and the independence she has already waited over six years for. At the same time, the NDIA is willing to approve vastly more expensive alternatives.

This is where the system becomes not only harmful, but completely irrational. I sourced a significantly cheaper and more practical solution through a local non-registered builder who could complete the exact same modifications using the exact same plans for approximately $75,000. The registered NDIS provider quoted over $100,000. That is a difference of more than $25,000. The local builder could also complete the work in three weeks instead of five, reducing accommodation costs even further. But because the builder is not NDIS registered, the NDIA refuses to allow this option. At the same time, they refuse to fund the modest accommodation amount required for the registered option to proceed. The result is absurd and deeply irresponsible.

Submission 2044

The NDIA is willing to spend:

• over $100,000 on inflated building costs
• over $28,000 for temporary supported accommodation with unfamiliar workers
• over $66,000 for 24/7 supported accommodation away from me
• potentially hundreds of thousands if the hospital system becomes involved But they refuse to approve approximately $5,500 for the safest, cheapest and most appropriate solution. There is no common sense in this system anymore. This experience demonstrates a much larger problem within the NDIS. The system claims to value “choice and control”, but increasingly participants are being funnelled into rigid provider systems that remove flexibility, inflate costs and ignore real-world practical solutions.

My experience clearly demonstrates that forcing participants into “registered only” systems does not automatically improve quality or safety. In many cases, it simply increases costs dramatically while reducing participant autonomy and flexibility. These proposed reforms claim to focus on “sustainability”, but sustainability cannot simply mean restricting participants while allowing systemic inefficiency, inflated provider pricing and administrative waste to continue unchecked. The current system often punishes families who try to find practical, cost-effective solutions. That is not reform. That is dysfunction. I am also extremely concerned about the increasing reliance on the concept of “natural supports”.

For families like mine, “natural supports” means unpaid labour, exhaustion and sacrifice, usually carried by women. It means mothers leaving employment because the system is too inflexible to accommodate real caring responsibilities. It means women ignoring their own disabilities, injuries and health conditions because there is nobody else to step in. It means carers being pushed beyond physical and emotional limits while governments quietly shift more responsibility back onto families. As a disabled single mother with no meaningful informal supports, I already carry the overwhelming majority of my daughter’s care responsibilities.

The current system also prevents carers from maintaining sustainable employment, protecting their own long-term health and financial stability, and participating fully in economic and community life. These reforms risk pushing families like mine into complete collapse. Women and carers are already carrying far too much. The proposed reforms risk making this worse by:

• increasing reassessment powers
• narrowing eligibility pathways
• tightening definitions of what supports are considered fundable
• increasing planner discretion
• reducing flexibility
• increasing reliance on informal

Submission 2044

supports * restricting participant choice and control * expanding ministerial powers over support definitions * making systems even harder to navigate for people with complex and fluctuating disabilities Disability and caring capacity are not static. Health fluctuates. Capacity fluctuates. Carer burnout fluctuates. Functional ability fluctuates depending on physical health, stress, exhaustion, medical complications and support access. Rigid functional assessment systems often fail to capture the realities of complex disability, chronic illness and caring relationships.

I am also deeply concerned about safeguarding. The NDIA has repeatedly pushed alternatives involving unfamiliar support workers and unfamiliar environments despite my daughter having highly complex medical and support needs. Continuity of care matters. Trusted relationships matter. Safety matters. Forcing participants into unfamiliar provider environments simply because it aligns with funding structures can create enormous safeguarding risks, particularly for vulnerable participants with communication, medical or cognitive support needs. The system currently rewardsureaucratic compliance over human wellbeing. That is dangerous.

I am also deeply concerned about increasing planner discretion and the inconsistency of NDIA decision-making. Participants often receive vastly different outcomes despite presenting similar evidence. Planners are frequently making decisions with enormous consequences for participants’ lives despite not necessarily having appropriate clinical expertise or understanding of complex disability. Too often, policy interpretation overrides professional evidence and lived experience.

This creates uncertainty, inequity and ongoing harm. I am extremely concerned that the proposed reforms will further reduce access to independent review and appeal mechanisms. Without strong external oversight, participants become increasingly vulnerable to inconsistent decision-making, internal policy interpretations and systems that prioritise cost containment over human need.

Review rights are not a loophole. They are an essential safeguard. Disabled people deserve procedural fairness, transparency and accountability. I urge the Committee to recognise that many of the current problems within the NDIS are not caused by participants receiving “too much support”. They are caused by: * inefficient administration * provider overcharging * inaccessible processes * poor decision-making * necessary adversarial reviews * delayed approvals * inflexible systems * failure to listen to participant expertise and lived experience Disabled people should not be

Submission 2044

punished for systemic failures created by the structure of the scheme itself. I also urge the Committee to recognise the very real risk of institutionalisation when practical community-based supports are denied. My family’s experience demonstrates that the system is often willing to fund far more restrictive, segregated or crisis-driven responses rather than practical supports that allow disabled people to remain safely within their homes and communities.

The NDIA was willing to consider: * expensive supported accommodation with unfamiliar workers * 24/7 provider-controlled environments * hospital-based alternatives before approving the modest supports required to safely keep my daughter living with continuity, familiarity and dignity in her own community. This directly contradicts the principles of inclusion, autonomy and community participation the NDIS was created to uphold. A system that would rather fund crisis responses, hospitalisation or institutional-style care than practical preventative supports is not protecting disabled people. It is failing them. I urge the Committee to: * protect participant choice and control * protect access to external review and appeals * reduce repeated reassessments and evidentiary burdens * reject excessive reliance on informal or “natural” supports * ensure genuine co-design with disabled people and carers * improve safeguarding and continuity of support * allow greater flexibility for practical and cost-effective solutions * address provider overcharging and market inflation * recognise the realities of families where multiple people are disabled * sure reforms do not push participants toward crisis, segregation, institutionalisation or hospitalisation due to lack of appropriate supports

The NDIA has spent more than six years teaching my daughter that her independence is negotiable and teaching me that my health, safety and wellbeing are expendable.

We are not asking for luxury. We are asking for basic dignity, practical support and the ability to live safely in our community. A system that would rather spend hundreds of thousands of dollars on crisis responses than $5,500 on practical support is not protecting disabled people. It is abandoning them.

Regards

A extremely burnt out NDIS Participant and Mother of a NDIS Participant