Dear Members of the Senate Community Affairs Legislation Committee,
I am the mother and primary carer of an NDIS participant aged 17. My son lives at home with me and his older brother. His Dad is transient with working away and his older brother is less available due to study and work placement. I have recently spent much time in hospital and am recovering from surgery. We have no living parents/grandparents and no help from other family members.
In the early years of the NDIS, our family experienced many positive outcomes. We were able to choose providers who were the right fit for our sons, access consistent therapies, and engage reliable support workers. This was a significant improvement on the state-based, block-funded services we had previously relied upon. While the scheme was not perfect, it gave us hope that our son could work towards living an ordinary, meaningful life. It allowed me to not feel completely isolated in my caring responsibilities. During this period, I saw positive progress in my son. I was able to gradually increase my work hours, our family felt less isolated, and we became more connected to our community. It allowed me to bridge gaps with his peers and have some sense of normality in mainstream activities, where otherwise he was at complete risk of isolation and burnout.
Unfortunately, over the last few years, our experience has changed.
Accessing additional supports to meet my son’s changing needs has become increasingly difficult, and restrictions on how funding can be used have reduced the effectiveness of his plan. Two years ago, I made the difficult decision to stop working completely, as I was juggling too many responsibilities, at risk due o carer burnout and needed to prioritise my family’s needs. Our family has been relying on one wage for a long time now and this causes much added stress to my sons’ Dad.
It reduces their time with him and adds to our financial burden.
I had hoped that once my youngest son transitioned from school, I would be able to return to work and achieve a more balanced family life.
However, the recently announced NDIS reforms have left me feeling deeply concerned about our future. Set backs with social isolation caused by covid restrictions and then secondary restrictions, has caused much stress, dysregulation and set up more need for careful support and structured reintegration.
If these proposed changes are legislated, this is how they will affect our family:
- Risk of Participants Being Removed from the Scheme I am extremely concerned that my son could be among the estimated 160,000 participants expected to transition out of the NDIS.
The proposal for states and territories to provide foundational supports appears flawed. It is difficult to see how governments can accurately plan and deliver these services before they know who will require them and where demand will exist. It is likely to take years before these supports are available at the scale required.
Prior to the NDIS, many of these services were already struggling to meet demand. While I understand the NDIS was never intended to support every person with a disability, governments must acknowledge that many state and territory disability services were reduced or closed as people were encouraged or required to transition into the NDIS.
Rather than removing participants who have already met access requirements, a more efficient and cost-effective approach would be for states and territories to contribute financially to the NDIS while allowing existing participants to remain on the scheme and continue accessing the established support networks around them. This would be a more stream-lined approach and remove the risk of a gap in services for the 160,000 participants expected to exit the scheme.
- Standardised Assessments The proposal to use standardised assessments conducted by people who do not know participants is deeply concerning to many families in the disability community.
Every person with disability has unique strengths, challenges, goals, and support needs. If funding becomes formula-based rather than individually determined, there is a significant risk that many participants will receive inadequate support, resulting in poorer outcomes and reduced independence.
People with disability should not be reduced to a score on an assessment tool. Funding decisions should continue to be based on a holistic understanding of a person’s circumstances and individual support requirements.
- Reduction in Social and Community Participation Funding Proposals to significantly reduce social and community participation funding would have a major impact on my son.
My son experiences significant social anxiety and cannot leave the house without the support of a trusted adult. Triggers are such that he can become dysregulated and this can put in him danger. We have fought hard to secure funding that meets the reasonable and necessary criteria for his needs. If this funding is substantially reduced, he will
either become increasingly socially isolated or I will need to take on the responsibility of supporting his community participation myself.
My son requires foundational support when in the community and when using public transport. However, due to his complex disabilities, he also requires one-to-one support whenever he leaves home.
We have worked hard to reduce input of support to be completely on myself and my son’s older brother and if social and community participation supports are reduced, the burden will fall back on me to meet those needs individually and can have further detrimental effect on my older son, who has spent much of his life and sacrificed much of his own social participation to support his brother.
As a parent of adult children with disability, I often ask myself: at what point am I allowed to step back from being the primary support person in every aspect of their lives? The NDIS was intended to provide people with disability with greater independence and choice. Reducing access to community participation supports risks reversing years of progress and increasing reliance on family carers. The participant choice and control has been hard to access and is now at complete risk of disappearing altogther.
- Reduction in Capacity Building Supports Reducing capacity building budgets is particularly concerning.
There is substantial evidence showing that investing in skill development, independence, and capacity building reduces long-term reliance on funded supports. It makes little sense to reduce supports that have already been assessed as reasonable and necessary.
Rather than reducing participant supports, greater attention should be directed towards addressing provider misconduct, fraud, and inefficiencies within the system. Participants should not bear the burden of cost-saving measures when much of the scheme’s financial pressure stems from issues elsewhere. It has taken much work. time and sacrifice to have my son feel safe enough to receive services and now we are threatening to take away supports that work. This is a situation that shows support works, so should be continued, flexible to meet participant where the need is. Not penalise participant for provider fraud and misconduct.
Broader Impacts
These reforms are unlikely to generate the savings that are being projected. Instead, they risk shifting costs into other systems, including health, mental health, justice, education, and child protection services.
When people with disability and their families do not receive the support they need, their ability to participate in society, employment, education, and community life is diminished. The long-term social and economic costs of this are significant.
The reality is that the NDIS was a major reform that was not implemented as effectively as it could have been. There were insufficient safeguards from the beginning to prevent fraud, inadequate training across the sector, and persistent workforce instability among planners, delegates, and Local Area Coordinators. Mistakes have undoubtedly been made, but reducing participant supports as a means of controlling costs fails to address the underlying issues.
One of the greatest strengths of the NDIS has been its recognition that investing in people with disability benefits everyone. When people with disability receive the support they need to live ordinary and fulfilling lives, families are better able to work, contribute to their communities, and participate in the economy. The benefits extend far beyond individual participants and create stronger, more inclusive communities. This has been demonstrated directly, where in I haven’t been able to work and earn money to support my family, I’ve been able to offer voluntary work to reduce stress on our community.
Most importantly, disability support should not be viewed solely through the lens of cost. People with disability have the same fundamental human rights as every other Australian, including the right to dignity, independence, choice, inclusion, and full participation in community life. These principles are recognised in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), to which Australia is a signatory.
The NDIS was established to give effect to these principles by providing people with disability the supports they need to pursue their goals and participate fully in society. Any reforms to the scheme should strengthen these outcomes, not diminish them. We should be striving to build a society where people with disability are valued, included, and empowered to live meaningful lives—not one where they are viewed as a financial burden to be managed. Reducing peer gap deficit and be able to contribute to society is self-confidence building and empowering.
I urge you to carefully consider the real-world impact these reforms will have on participants and families before supporting legislation that reduces access to essential supports. The success of the NDIS should be measured not only by its financial sustainability, but also by its ability to uphold the dignity, rights, and quality of life of the
Australians it was created to support. This has an overall impact on community and builds strength, resilience and self confidence, creating unity and success, rather than the opposite.