Submission 2135
To the Members of Parliament,
I am writing to bring to your attention the devastating impact that NDIS funding
decisions have had on my son, redacted, and our family.
redacted is a child with complex disabilities and significant support needs. The
supports previously funded through the NDIS were not optional extras; they
were essential safeguards that enabled him to participate in the community,
develop skills, regulate his behaviour, and maintain his wellbeing. They also
provided critical support that allowed me to continue functioning as his sole
parent and primary carer.
When these supports were reduced or removed, the needs did not disappear.
Instead, the burden was transferred entirely onto our family. The financial and
emotional strain became overwhelming, and at one point the consequences of
these decisions nearly left me and my disabled child on the street.
As a result, the NDIS effectively stripped away redacted’s activities of daily living
supports and his ability to participate socially and within the community. The
supports that enabled him to engage with others, access his community, build
independence, and maintain a meaningful quality of life were taken away,
leaving him increasingly isolated and dependent on me for every aspect of his
daily care.
One of the most concerning aspects of these funding reductions is that critical
therapeutic and behavioural supports were removed despite redacted’s ongoing and
significant needs.
redacted experiences complex and extreme behaviours that require intensive
supervision, specialist intervention, and consistent therapeutic support. Despite
this, funding for his Behaviour Support Practitioner was reduced by
approximately $30,000, significantly limiting access to the specialist support
needed to understand, manage, and reduce behaviours of concern. Funding for
his psychologist was also removed, leaving him without access to a key
professional responsible for supporting his emotional wellbeing, behavioural
regulation, and mental health.
As a result, I am now managing extreme behaviours with little professional
support while providing care and supervision 24 hours a day, 7 days a week.
The responsibility for managing risks, responding to behavioural incidents,
Submission 2135
implementing strategies, maintaining safety, attending appointments, supporting ’s education, advocating for his needs, and meeting his daily care requirements has fallen almost entirely onto me. I am a sole parent with no family support. There is no other parent sharing these responsibilities, no relatives providing regular respite, and no informal support network available to step in when the demands become overwhelming. The removal of these supports has not reduced ’s needs; it has simply transferred the burden onto one person. The reality is that I am expected to perform the roles of parent, disability support worker, behaviour support practitioner, advocate, coordinator, and crisis responder every day without the level of support that was previously recognised as necessary. The pressure is relentless and unsustainable. The removal of these supports has left me carrying responsibilities that would ordinarily be shared across multiple trained professionals. I fear not only for my own wellbeing, but for the long term consequences this situation creates for . No child with complex disabilities should lose access to essential supports simply because the burden can be shifted onto a parent who has no choice but to continue. In turn, I was forced to leave the job that I loved and step into the role of a full time unpaid carer with very little support. I now provide constant supervision and assistance far beyond what is sustainable for one person, and the loss of these supports has affected every aspect of our lives, including my ability to work, maintain financial security, and preserve my own physical and mental wellbeing. The consequences of these decisions are not theoretical. They are lived every day. Families caring for children with complex disabilities do not have the option of simply stopping. When support is removed, parents must absorb the responsibility regardless of the personal cost. The result is exhaustion, financial hardship, social isolation, and an increasing risk of carer burnout. I am deeply concerned that decisions are being made based on narrow interpretations of evidence and cost considerations without sufficient regard for the practical realities faced by families. Essential supports should not be viewed solely as an expense. They are investments that prevent family breakdown,
Submission 2135
reduce crisis situations, support community participation, protect the wellbeing of both participants and carers, and reduce the likelihood of more costly interventions in the future. The current system has left me feeling unheard, unsupported, and abandoned at a time when my family needed help the most. I respectfully ask Parliament to examine the real-world consequences of NDIS funding reductions on children with complex disabilities and their families. The voices of carers and parents must be heard. Policies and decisions made on paper have profound impacts on real people, and those impacts deserve greater scrutiny and accountability. I love my son and will continue to fight for him. However, no family should be expected to carry the weight of disability support alone when the system designed to provide assistance withdraws the very supports that make daily life manageable. I ask that my experience be considered not only as an individual case but as an example of the challenges faced by many Australian families who are struggling under the weight of inadequate support. Thank you for taking the time to hear our story and consider the consequences these decisions have had on our lives. Yours sincerely,