National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
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,, our family. 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’s activities of daily living supports and his ability to participate socially within the community. The supports enabling him engage others access build independence maintained meaningful quality life taken leaving increasingly isolated dependent every aspect care. one most concerning aspects those funding reductions is therapeutic behavioural supports despite ongoing significant needs.experiences complex extreme behaviours require intensive supervision specialist intervention consistent therapeutic support Despite this,funding Behaviour Support Practitioner approximately $30, significantly limiting access needed understand manage reduce concerns.Funding for psychologist also removed without key professional responsible supporting emotional well-being behavioral regulation mental health.As I am now managing extreme behaviors little professional while providing 24 hours day week.The responsibility risks responding incidents.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2135
implementing strategies, maintaining safety, attending appointments, supporting redacted’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 redacted’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, the loss of supports has affected every aspect of our lives including my ability to work maintain financial security preserve physical mental well being. The consequences are theoretical They lived everyday families caring children complexities do option stopping When removed parents absorb responsibility regardless personal cost result exhaustion hardship isolation increasing risk burnout deeply concerned decisions made based narrow interpretations evidence consideration sufficient regard practical realities faced by families Essential supports expense investments prevent family breakdown
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
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 disabilitiesand their families.The voicesofcarers parents mustbe heard.Policiesdecisions madeon paperhave profound impacts ontreal people,and those impactsservet greater scrutiny andaaccountability. I love my son will continue fight him.However nofamily should expected carryweight disabilitysupport alone whenthe systemsigned provide assistance withdraws very supports that make daily life manageable. Iask experience be considered notonly as individual case but example challenges faced many Australianfamilies struggling weight inadequate support.Thank you taking time hear story consider consequence these decisions have hadourlives.Yours sincerely, edacted