Submission 1430

28/5/27 Submission to the Senate Community Affairs Legislation Committee** Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by: Tasmania, Australia

I am an AuDHD adult and parent to two autistic daughters. I am writing this submission because I am deeply concerned about the impact the proposed NDIS reforms could have on my family and on disabled people across Australia. My family lives with cumulative disability load, fluctuating capacity and ongoing burnout management. None of our disabilities exist neatly in isolation from one another, and our support needs are not static. Our ability to function changes depending on stress, sensory load, burnout levels, environmental demands, social expectations and the level of support available to us at any given time. The flexibility currently available within our NDIS plans is one of the few things that has genuinely allowed us to move beyond survival mode. The supports we access are not luxuries. They are the reason we are able to participate in work, school, community and daily life safely and sustainably. Before the NDIS, we were barely surviving. We got through work and school and had almost no capacity left for anything else. We were overloaded, isolated, chronically exhausted and constantly trying to recover from burnout. Since accessing the NDIS, we are more regulated, more connected to our community, more able to maintain work and school participation, and more able to function as a family. Flexible access to support worker assistance for social and community participation has significantly reduced isolation and increased our ability to engage with the world around us. Autism-specific psychology has been life changing for both myself and my daughter. These supports have helped us better understand our needs, improve emotional regulation, develop healthier relationships and build sustainable coping strategies.

Flexible Short Term Accommodation has also been essential in preventing autistic burnout and overload. It functions as a preventative support that helps maintain stability and reduces the likelihood of crisis. Consistency of support access is critical for autistic people and families. Stability reduces cognitive load, stress and dysregulation. Constant policy shifts, changing interpretations and repeated reassessments create enormous distress and uncertainty. One of the best experiences we had with the NDIS was when my children’s plans were simply rolled over because the existing supports were already working well. It avoided unnecessary retraumatisation and reduced an enormous amount of stress. My own plan is due for reassessment in September and I genuinely do not know if I have the capacity to survive another planning process. The previous plan development process for myself and my children was appalling. I had to repeatedly insist on face-to-face meetings and insist on having support present. I encountered ableist attitudes throughout the process and felt continually dismissed and disbelieved until I became so overwhelmed that I burst into tears. Only then were my needs finally taken seriously and appropriate supports provided. Disabled people should not have to emotionally collapse before they are believed. Repeated reassessment processes are not neutral administrative tasks. They are cognitively exhausting, emotionally draining and often retraumatising, particularly for

Submission 1430

Autistic people who already experience significant difficulty navigating complex bureaucratic systems.

These processes also fundamentally fail to capture fluctuating disability. Many autistic and neurodivergent people can appear “capable” in short interactions while masking distress, exhaustion and dysfunction. Being able to speak on the phone, attend a meeting or complete paperwork does not mean somebody does not require support. Functioning is contextual, inconsistent and often achieved at enormous personal cost.

I have personally experienced ableist assumptions from NDIA staff. On one occasion, an NDIA staff member told me that because I was able to speak on the phone, I therefore did not need support coordination funding. This completely ignored the actual reasons I requested support coordination and demonstrated a fundamental misunderstanding of autism, executive functioning difficulties and fluctuating capacity.

The system repeatedly reduces disability to simplistic observations while ignoring the hidden labour required for disabled people to appear functional.

The constant changes within the NDIS are another major source of distress. Policies, interpretations and practices appear to change constantly, often without notice or clear communication. Different participants are told entirely different things about what they can and cannot access, even when they have similar disabilities and similar funding. Support coordinators provide conflicting information. Plan managers provide conflicting information. NDIA staff provide conflicting information depending on who answers the phone that day. This inconsistency creates enormous cognitive and emotional load for disabled people and families who are already struggling to navigate a highly complex system.

The communication systems within the NDIA are also extremely inaccessible. Interacting with the agency is time consuming, cognitively draining and often involves endless loops with little or no outcome.

The burden of navigating these systems falls disproportionately onto disabled people and family carers who are already overloaded.

There is also an alarming lack of autism advocacy available in Tasmania. I have no independent advocacy support available to assist with workplace advocacy, NDIS issues or systemic barriers. I am constantly forced to advocate for myself and my children while simultaneously managing disability, parenting, work responsibilities and burnout. This unpaid labour is enormous.

As a mother, much of the burden created by system failures ultimately falls back onto me. When supports are reduced, delayed, restricted or made inaccessible, the expectation becomes that families, particularly women and mothers, will simply absorb the gap. This is not sustainable. These proposed reforms risk shifting even more responsibility onto “natural supports”, which in reality often means unpaid female labour. Women are already disproportionately carrying caring responsibilities, advocacy work, emotional labour, administrative coordination and crisis management within disability systems. When governments reduce formal supports, they do not eliminate support needs. They simply transfer the labour, stress and economic consequences onto families.

Without our current supports, I would likely be forced to reduce my work hours again due to autistic burnout and caregiving demands. My ability to maintain full-time employment is directly connected to the supports we currently access, including psychology, domestic assistance and support worker support. Reducing supports does not increase independence. In many cases it actively reduces it.

Submission 1430

The reforms also fail to adequately consider regional and semi-remote realities. We live in a semi-remote area with very limited provider availability. Many providers charge above the NDIS pricing limits simply because of workforce shortages and service scarcity. Despite having available funding within our plans, we are frequently forced to pay significant out-of-pocket costs to continue accessing trusted providers.

Our cleaner charges above the standard rate. Our psychologist charges above the standard rate.

These are not luxury providers. They are the limited available providers in our area who understand autism and provide safe and effective support. Despite this, our plan manager refuses to reimburse the full costs or advocate for flexibility. This leaves us financially disadvantaged simply because of where we live. Participant choice and control become meaningless when there are no accessible providers available within pricing constraints!

I have also experienced major issues accessing Short Term Accommodation funding that had previously been approved and used appropriately for over a year as a burnout prevention support. My plan manager suddenly refused reimbursement requests because they personally believed the support was not appropriate, despite it previously being processed without issue.

The NDIA then redirected responsibility back to the plan manager. As a result, I was left out of pocket with no warning, no consistency and no clear pathway to resolution. This type of arbitrary gatekeeping creates enormous distress and undermines participant rights, procedural fairness and trust in the system.

My daughter has also lost access to activities such as acting lessons and sport that were previously supported through her plan. These activities significantly improve her emotional regulation, confidence, wellbeing and community participation. Without them, she becomes increasingly dysregulated and isolated.

Similarly, I previously accessed yoga classes through my plan. Since funding changes removed this option, my regulation and burnout symptoms have worsened significantly and my motivation to exercise has reduced.

Supports that maintain regulation, prevent burnout and reduce future crisis should not be dismissed simply because they do not fit narrow or stereotyped ideas about disability support. The proposed reforms create serious fear that disability will increasingly be assessed through narrow functional criteria that fail to recognise invisible disability, episodic disability, cumulative disability load and fluctuating support needs. There is also significant concern about increasing planner discretion and expanding powers that allow supports to be restricted through policy interpretation rather than individualised evidence and participant need. Disabled people should not have to constantly prove they are disabled “enough” to access support.

There is also significant concern about the broader structural direction of these reforms and the level of discretionary power they may place into the hands of government and the NDIA. Many disabled people are deeply concerned that these changes could narrow eligibility pathways and make it significantly harder for people with invisible, fluctuating, psychosocial, neurodevelopmental or complex co-occurring disabilities to access and retain support. Disability does not become less real simply because it fluctuates, is masked, or is difficult to measure within rigid assessment frameworks. There is considerable fear within the disability community that the proposed reforms may increasingly reduce disability to narrow functional snapshots while failing to capture cumulative impairment, burnout, executive functioning

Submission 1430

difficulties, sensory impacts, relational support needs and the real-world consequences of unsupported disability. There are also serious concerns regarding expanded ministerial rule-making powers and the increasing ability for supports to be restricted or redefined through policy interpretation rather than through transparent legislation and individualised evidence. Disabled people require certainty, stability and procedural fairness. We should not be living in constant fear that supports may suddenly become inaccessible because of changing interpretations, internal policy shifts or discretionary decision-making processes. There is also widespread concern regarding safeguarding, accountability and access to review rights. When NDIA decisions are inconsistent, inaccessible or incorrect, participants must retain strong access to internal reviews, external appeals and independent oversight mechanisms. Disabled people should not lose rights to procedural fairness simply because systems are overloaded or governments are seeking administrative efficiency. For many participants, review and appeal pathways are the only safeguards preventing harmful, unlawful or poorly informed decisions from causing catastrophic consequences. Weakening review rights or creating barriers to external appeals isks leaving disabled people trapped within systems that already hold enormous power over every aspect of our lives.

I am also deeply concerned about the broader long-term direction these reforms may take Australia toward. When disabled people lose individualised supports, the outcomes are not increased independence or inclusion. The outcomes are often:

• increased isolation
• increased family breakdown
• worsening mental health
• school disengagement
• unemployment
• poverty
• burnout
• crisis presentations
• and greater reliance on segregated, institutional or restrictive models of support Many disabled Australians fought for decades to move away from systems that isolated disabled people from community life and autonomy. The NDIS was intended to support participation, dignity, choice and inclusion. Any reforms that reduce flexibility, narrow eligibility, increase gatekeeping or shift responsibility onto unsupported families risk reversing that progress. Disabled people deserve to live within their communities with safety, autonomy, dignity and genuine support, not be pushed back toward survival-based, crisis-driven or segregated systems because appropriate supports have been stripped away.

If these reforms result in further cuts, narrowing of supports, increased reassessment powers or reduced flexibility, the consequences for my family will be severe. Without our supports:

• my children would become increasingly school avoidant
• our mental health and emotional regulation would deteriorate
• autistic burnout would significantly increase
• we would become more isolated from community participation

Submission 1430

• I would likely be unable to maintain full-time employment
• the unpaid caring burden on me would dramatically increase
• our family stability would deteriorate
• we would lose preventative supports that currently stop crisis before it occurs. These supports do not create dependence. They create sustainability, participation and safety. Removing them will not eliminate disability or support needs. It will simply push more families into burnout, crisis, isolation and poverty while shifting greater pressure onto health systems, schools, families and informal carers.

I urge the Committee to carefully consider the real-world impacts these reforms will have on disabled people and families, particularly autistic people, women, parents, regional participants and people with fluctuating or invisible disabilities.

I urge the Committee to:

• protect participant choice and control
• protect flexible use of supports
• reduce repeated reassessment and evidentiary demands
• improve consistency and accountability within NDIA decision-making
• improve communication accessibility
• increase access to independent advocacy
• recognise fluctuating and invisible disability appropriately
• protect access to trusted providers, particularly in regional and semi-remote areas
• recognise the gendered impacts of shifting care responsibilities onto families
• ensure reforms align with human rights principles and the intent of the NDIS
• protect preventative supports that reduce burnout, crisis and long-term system costs
• protect safeguarding mechanisms and procedural fairness protections
• maintain strong access to internal reviews and external appeals
• ensure ministerial powers cannot override participant rights and individualised evidence
• prevent narrowing of eligibility pathways for people with complex, fluctuating or invisible disabilities
• ensure disabled people are genuinely included in co-design and decision-making processes Disabled people should not have to fight this hard to survive.

Regards,