Submission 1442

Submission to the Senate Inquiry into Proposed Changes to the NDIS Act

My name is and I work within the disability sector as a Support Coordinator, supporting participants and families navigating the NDIS system across a range of complex needs.

I am writing this submission not only from a professional perspective, but also from the perspective of someone who sees the emotional, practical, and financial impact these systems have on real people every single day.

I have worked within the disability sector since 2011 and throughout this time I have supported participants, carers, families, allied health professionals, schools, hospitals, providers, and community services across a wide range of circumstances and levels of complexity.

My perspective is also informed by lived experience. In addition to working within the disability sector as a Support Coordinator, I am also a plan nominee and have family members who access the NDIS.

This means I have experienced the system not only professionally, but personally. I understand firsthand the emotional pressure, administrative burden, advocacy requirements, uncertainty, and ongoing responsibility that many families and nominees carry while attempting to navigate supports, funding, service access, and long-term planning.

Holding both professional and personal insight has reinforced for me how critical it is that the NDIS remains focused on practical, accessible, and genuinely person-centred support that improves quality of life, reduces long-term crisis, and supports both participants and the people who care for them.

The families I work alongside are often already exhausted before they even reach the point of asking for help. Many are balancing disability, mental health challenges, behavioural concerns, trauma, financial pressure, caring responsibilities, social isolation, housing stress, and burnout simultaneously.

One of my greatest concerns regarding the proposed changes is the apparent shift toward requiring people to exhaust all available treatment options before disability is considered “permanent” enough for support.

In reality, many of the treatments considered “available” are not realistically accessible.

I regularly see participants and families facing:

• years-long waitlists for specialists and allied health supports
• unaffordable therapy costs
• limited or non-existent rural and regional services
• transport barriers
• clinician shortages
• repeated assessments that retraumatise participants and families
• overwhelming administrative burden simply to maintain existing supports

There is a significant difference between a treatment existing in theory and being genuinely accessible in practice.

Submission 1442

I am concerned these changes risk placing vulnerable people into cycles of repeatedly having to prove the severity and permanence of their disability while their wellbeing deteriorates in the process.

I am also deeply concerned about the potential reduction or restriction of capacity-building and community participation supports.

From what I witness in frontline work, these supports are not “extras.” They are often the exact supports that prevent crisis.

When participants have access to appropriate therapy, behavioural support, psychosocial supports, support coordination, mentoring, social connection, and skill-building opportunities, we often see:

• improved emotional regulation
• increased independence
• reduced social isolation
• reduced risk of hospitalisation
• improved family stability
• reduced behavioural escalation
• increased community participation
• reduced pressure on carers

When these supports are reduced or delayed, the consequences can be significant and long lasting.

I have seen families reach complete burnout after years of trying to hold systems together without adequate support. I have seen carers forced to reduce work or leave employment entirely due to caring demands. I have seen participants deteriorate while waiting for approvals, assessments, reviews, or access to essential services.

In many cases, early and preventative support is significantly less costly than responding once a person or family has reached crisis point.

Another significant concern is the increasing disconnect between therapeutic recommendations and the practical supports required to successfully implement them in daily life.

The NDIS places strong emphasis on capacity-building supports and regularly funds assessments, therapy, behavioural strategies, and allied health intervention. However, in practice, there is often insufficient recognition that many participants require ongoing direct support to consistently implement these recommendations within their everyday environments.

For many people living with disability, particularly those with intellectual disability, autism, psychosocial disability, acquired brain injury, or cognitive impairment, learning and maintaining new skills requires repetition, consistency, co-regulation, modelling, and long-term reinforcement.

Attending therapy alone does not automatically translate into functional skill development or independence.

In many cases, support workers, carers, and day-to-day support networks are the people who help participants repeatedly practise and implement therapeutic strategies over extended periods of time. Without this ongoing implementation support, the effectiveness of funded therapeutic intervention can be significantly reduced.

Submission 1442

Another critical issue is the increasing reliance placed on informal supports to carry the ongoing implementation of therapeutic strategies and daily capacity-building supports without adequate recognition of the impact this has on carers and families.

Importantly, many informal supports are already experiencing significant carer burden, emotional exhaustion, financial pressure, and burnout. Families are often attempting to manage complex behavioural, emotional, medical, and daily living support needs simultaneously, frequently with limited respite or support themselves.

Expecting informal supports to consistently implement therapeutic recommendations indefinitely is not always realistic or sustainable.

It is also important to recognise that participants often respond differently to formal supports than they do to family members or carers. In practice, many participants are more receptive to learning new skills from support workers or professionals with whom they have developed trusted therapeutic relationships outside of family dynamics.

This relational separation can reduce resistance, preserve family relationships, and create more effective opportunities for learning, regulation, independence, and skill development.

From a frontline perspective, there appears to be an increasing disconnect between funding therapeutic recommendations and funding the practical, ongoing implementation required for those recommendations to succeed in real-world settings.

I am also concerned about the growing impact these reforms and ongoing system uncertainty are having on the disability workforce itself.

Many frontline workers across the sector continue to provide significant unpaid support to participants and families due to service gaps, funding exhaustion, delays, and lack of system navigation support. This often comes at the expense of workers’ own wellbeing, family time, emotional capacity, and long-term sustainability within the sector.

Despite this, the disability workforce continues to play a critical role in preventing crisis, connecting participants with appropriate mainstream and community supports, reducing system fragmentation, and supporting participants to engage safely and meaningfully within their communities.

The long-term value of these supports extends far beyond individual participants.

When people with disability are appropriately supported, we see increased opportunities for employment, education, social participation, independence, community connection, and improved quality of life. We also see reduced pressure on hospitals, mental health systems, emergency services, housing systems, and informal carers.

Reducing supports may create short-term financial savings on paper, but risks significantly greater long-term social and economic costs across multiple systems.

I believe there needs to be greater recognition that disability support is not only about maintaining safety, but also about creating opportunities for people to participate meaningfully in their communities and live with dignity, stability, connection, and autonomy.

I also believe there needs to be greater consultation with people who are directly impacted by these systems, including participants, carers, allied health professionals, and frontline disability workers.

Submission 1442

Recommendations:

• Maintain access to capacity-building and community participation supports.
• Ensure definitions relating to “permanence” consider affordability, location, trauma, and realistic accessibility of treatment options.
• Better recognise the relationship between therapeutic intervention and the ongoing support required to successfully implement strategies in real-world settings.
• Reduce unnecessary administrative burden and duplication placed on participants and families.
• Recognise preventative supports as essential long-term investments rather than discretionary spending.
• Increase consultation with lived experience participants, carers, allied health professionals, and frontline workers before implementing major legislative changes.
• Improve recognition and sustainability of the frontline disability workforce and the critical role it plays in preventing participant and family crisis.

The NDIS has changed the lives of many Australians for the better. While I understand the importance of sustainability and accountability within the scheme, I believe reforms must be approached carefully to avoid creating additional barriers for the very people the system was designed to support.

At its core, the NDIS should continue striving toward a society where people with disability are supported to participate meaningfully, safely, and with dignity within their communities, rather than becoming increasingly isolated due to lack of appropriate support.

Thank you for the opportunity to provide this submission.