Submission to the Senate Inquiry into the NDIS

Amendment Bill (Securing the NDIS for Future Generations)

Introduction

My name is Regina Wilson, and I am making this submission as both the parent of an NDIS participant and as a disability support worker.

My son is 8 years old and has been diagnosed with Autism Spectrum Disorder Level 2 and ADHD. I am also a single mother, a carer, a student, and someone who works within the disability sector supporting NDS participants. Through both my personal and professional experience, I have seen the positive difference that appropriate supports can make, but I have also experienced the stress and hardship caused when those supports are delayed, restricted, or difficult to access.

I am concerned that some of the proposed changes under the NDIS Amendment Bill may place additional pressure on participants, families, and carers while reducing access to supports that are essential for wellbeing, independence, and community participation.

One of my greatest concerns is the reduction of funding for social and community participation supports.

My son experiences significant anxiety. Community participation supports are not simply recreational activities; they are essential supports that help him build confidence,

develop social skills, and engage with the world around him. Without these supports, I fear he will become increasingly withdrawn and isolated.

Last year, I saw a decline in his mental wellbeing when he did not have the support he needed. Reducing access to community participation would likely make this worse. I worry that he will become less willing to leave the house, less able to interact with others, and more vulnerable to social isolation.

As a support worker, I have supported around 10 different NDIS participants. One of the most common challenges I have seen is participants being unable to access support workers to assist them with community participation on the days they want or need support. Community participation funding plays a critical role in helping people with disability remain connected to their communities and maintain their mental wellbeing.

Concerns About Increased Expectations on Families and Unpaid Carers

I am also deeply concerned about any changes that increase expectations on families and unpaid carers.

As a single mother, I am already experiencing significant carer burnout. I am trying to support my son, maintain employment, continue studying, and provide for my family. The reality is that families are already doing an enormous amount of unpaid work.

The NDIS should be supporting families, not shifting more responsibility onto them.

Delays and Inconsistencies within the NDIS

When supports are unavailable or delayed, families are expected to fill the gap. However, there comes a point where this is no longer sustainable. Carer burnout affects not only the parent but also the child receiving care.

Families need access to respite, appropriate therapies, and practical support. Without these supports, many carers will reach breaking point.

Delays and Inconsistent Decisions Within the NDIS

My experience with the NDIS has been mixed.

My son has only recently had access to a plan manager, and despite requiring speech therapy and occupational therapy, we are still waiting for these supports to be put in place.

I have also experienced significant stress due to inconsistent decisions and appeals processes. As a parent, I have been asked repeatedly to provide more evidence, attend reassessments, and pay for additional reports and assessments. These assessments are expensive, and families are often expected to bear these costs themselves.

What has been particularly frustrating is being told that more evidence is needed, only for the outcome to remain unchanged when the new evidence confirms the same challenges and support needs.

As someone who works in the disability sector, I have seen situations where children with similar support needs receive vastly different outcomes. This inconsistency creates confusion, frustration, and distrust in the system.

The Real-World Consequences of Reduced Supports

If My Son’s Supports Were Reduced

If my son’s supports were reduced, the consequences would be significant.

His anxiety would likely increase, leading to greater isolation and withdrawal from the community. His behaviour may become more challenging as his support needs go unmet. His mental health and overall wellbeing would be negatively affected.

For me as a parent, the impact would include increased carer burnout and greater difficulty maintaining employment. There have already been times when I have had to leave work to collect my son from school due to meltdowns and a lack of appropriate support.

Without adequate support workers, occupational therapy, and community participation funding, these situations are likely to become more frequent.

The practical result is that families may lose employment, extperience financial hardship, and face increased stress, while children miss opportunities to develop the skills they need to thrive.

The NDIS Is Becoming Increasingly Difficult To Navigate

Support services play a crucial role in helping individuals maintain their independence and wellbeing. They also help families remain stable, healthy, and able to continue caring for their loved ones.

When support is removed, the burden does not disappear. It shifts onto families who are often already stretched beyond their limits.

Recommendations

I respectfully ask the Committee to consider the following recommendations:

Protect funding for social and community participation supports.
Maintain participant choice and control over how supports are used.
Strengthen safeguards for families and carers, including access to respite where required.
Ensure decisions are made consistently and transparently across participants with similar support needs.
Reduce the burden on families to repeatedly obtain and fund assessments that confirm existing diagnoses and support needs.
Ensure children with disability can access therapy and early supports without unnecessary delays.
Meaningfully consult people with disability, families, carers, and frontline support workers before implementing significant changes.

Another concern I would like the Committee to consider is how difficult the NDIS has become for participants and families to navigate.

As both a parent and a support worker, I have often found the system confusing, inconsistent, and overwhelming. It can feel like participants are expected to understand complex rules, legislation, funding categories, reviews, reassessments, and appeals processes without adequate support.

Many participants and families do not know what they are entitled to, how to challenge decisions, or who they can turn to for help. Those who are confident, educated, or experienced in advocating for themselves often have a better chance of accessing the supports they need. However, those who are vulnerable, overwhelmed, have limited literacy, English as a second language, intellectual disability, or limited support networks can easily be left behind.

At times, it feels as though the system is designed in a way that makes accessing support unnecessarily difficult. Families are asked to repeatedly provide evidence, pay for assessments, and navigate complicated processes, often while already dealing with significant caring responsibilities and stress. Many simply give up because they do not have the time, knowledge, money, or energy to continue fighting for supports.

The people who need support the most are often the least able to advocate for themselves. A system intended to support people with disability should be accessible,

Conclusion

I support efforts to ensure the long-term sustainability of the NDIS. However, sustainability should not come at the expense of participants and families who rely on these supports every day.

As both a parent and a disability support worker, I have seen how vital these supports are. I ask the Committee to carefully consider the real-life impact these changes may have on children with disability, their families, and the broader disability community.

Thank you for considering my submission.