Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
14 May 2026
To the Senate Committee,
I am writing as a parent, carer, and advocate for my twin sons, and ,to share our family’s lived experience navigating complex disability, learning difficulties, epilepsy, education systems, employment barriers, and disability support services in Australia. I hope this submission helps contribute to a broader understanding of the significant challenges faced by many individuals and families living with complex and often misunderstood disabilities, particularly those who fall within difficult-to-define “grey areas” that are not always properly recognised within standard systems. Both of my sons live with severe dyslexic-spectrum learning disability affecting reading, writing, spelling, comprehension, communication, organisation, executive functioning, and independent navigation of systems and services. In addition, both live with epilepsy, diagnosed in 2015 and 2018 respectively, involving focal tonic seizures that often occur without warning or aura. They also live with an extremely rare genetic depletion disorder, and we have been informed they are currently the only known individuals identified with this presentation. The combination of learning disability, epilepsy, executive functioning impairment, and a rare neurological condition creates layers of complexity that are extremely difficult to explain through standard disability categories alone. Unfortunately, people living with severe learning disabilities are often misunderstood because their disability may not always appear immediately visible to others. Many individuals are incorrectly judged as lacking motivation, intelligence, capability, or independence when in reality they are working significantly harder than most people simply to manage daily functioning, communication, processing information, navigating systems, and coping with social expectations. Throughout schooling, we repeatedly experienced gaps in understanding, inconsistent educational support, and difficulty accessing appropriately
tailored learning pathways. Standard education systems are often not designed for individuals who learn differently, process information differently, or require more flexible communication and support approaches. These challenges do not disappear in adulthood. They continue into employment systems, social environments, disability services, and community participation. One of the greatest concerns we have is that many people with severe learning disabilities and neurological conditions remain at risk of becoming invisible within society. There is still significant stigma, misunderstanding, prejudice, and social judgement surrounding learning disabilities, epilepsy, and cognitive challenges. This can lead to isolation, exclusion, poor mental health outcomes, loss of confidence, reduced opportunities, and long-term disengagement from education, employment, and community participation. At times, the emotional toll on both our sons and our family as carers has been enormous. Families are often left trying to become educators, advocates, support coordinators, researchers, carers, project managers and crisis managers simultaneously while navigating highly complex systems with limited guidance and increasing uncertainty. Despite these challenges the supports we are currently engaging in is
highlighting their amazing protentional and continue to demonstratestrengths, insight, creativity, kindness, resilience, and strong potential. With the right supports, flexibility, and understanding, they have meaningful opportunities to contribute positively to society through education, advocacy, community participation, lived experience leadership, and future employment pathways. Their experiences have already started opening up creating a greater awareness around inclusive learning, flexible communication approaches, neurodiversity, disability understanding, and the importance of collaborative support systems. We strongly believe Australia has the opportunity to become a far more inclusive and forward-thinking society if governments continue investing in disability-informed education systems, flexible employment pathways, learning support services, epilepsy awareness, coordinated disability supports, mental health supports for carers and families, and greater community understanding of invisible disabilities. We also believe it is important for governments and support systems to actively capture and learn from what is already working well. Many individuals, families, educators, support coordinators, allied health professionals, and inclusive providers are developing valuable approaches, strategies, and pathways that are creating meaningful outcomes despite significant barriers. Recognising, supporting, and expanding these successful approaches has the potential to improve long term participation, wellbeing, inclusion, education, and employment opportunities for many others living with complex disabilities across Australia.
Support Coordination has been one of the most important protective factors for our family. Effective Support Coordinators provide far more than administrative assistance. They help identify strengths, build pathways, coordinate services, advocate during periods of change, support long-term planning, and help prevent vulnerable people from falling through gaps in the system. Unfortunately, many mainstream systems, including employment providers and general services, often do not have the specialist disability knowledge, continuity, flexibility, or time required to support people living with complex neurological and learning disabilities effectively. We are increasingly concerned that current funding pressures and changes within disability systems may unintentionally reduce the very supports that help vulnerable people remain engaged, included, and working toward independence. Early intervention, consistency, and coordinated support are not unnecessary expenses. They are long-term investments in participation, stability, education, wellbeing, and future economic contribution. People living with learning disabilities, epilepsy, and complex neurological conditions should not feel invisible, excluded, or left behind within modern Australian society. We hope Australia continues moving toward a future where people with disabilities are recognised not only for the challenges they face, but also for the insight, resilience, lived experience, and valuable contributions they bring to our communities. If we continue listening to lived experience and working collaboratively to improve systems, education, inclusion, awareness, and support pathways, Australia has the opportunity to become a more compassionate, informed, tolerant, and inclusive nation for everyone. This includes continuing to provide a strong, collaborative and supportive NDIS system.
Thank you for considering our family’s submission.
Kind regards,