RE: Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill
My name is Jennifer McCullough, and I am the parent of an 8-year-old child with Down syndrome. Our family has been part of the NDIS for the past seven years.
I appreciate the opportunity to provide feedback on the proposed changes to the NDIS. I understand the importance of ensuring the sustainability of the scheme into the future. However, I am deeply concerned that some of the proposed amendments risk reducing the quality of life, opportunities and long-term outcomes for children like my son and families like ours, particularly those living in regional communities. For our family, the NDIS has never been about “extras” or convenience. It has been about giving our child the opportunity to participate in the world more safely, independently and meaningfully.
The supports we receive through the NDIS, including allied health therapies, communication supports, community participation and sport and recreation opportunities, have played a critical role in our son’s development. Early intervention funding in his younger years allowed us to access therapies, specialised equipment and supports that helped him build communication, confidence, physical skills and independence. These supports have not only benefited our child, but our whole family. Our son has three older sisters, and the support provided through the NDIS has had a significant positive impact on them as well. It has helped create opportunities for our family to participate more fully in community life together and reduced some of the pressures and responsibilities often placed on siblings of children with disability. The supports have allowed him to be included in his community, participate in athletics and gymnastics, develop social skills and experience opportunities that many people take for granted.
I am particularly concerned about proposed changes that may narrow the definition of “reasonable and necessary” supports or classify supports related to social and community participation as ordinary day-to-day living costs. For children with disability, community participation is not simply recreation. It is therapy, inclusion, skill building, confidence, communication and mental wellbeing combined.
Without these supports, children like my son are at significant risk of isolation, regression in skills and reduced independence. These opportunities are often what help bridge the gap between disabled children and their peers.
I am also concerned about increasing expectations being placed on unpaid carers and families. As parents, we already provide an extraordinary level of care every day. Our son relies on us for almost every aspect of daily life in a way that is very different to a typical 8 year-old child.
Caring responsibilities do not end when therapy sessions finish or school ends for the day. Families often coordinate appointments, provide communication support, manage behavioural and safety needs, advocate within multiple systems and carry the emotional and financial burden of ensuring their child can participate in everyday life. When supports are reduced, the burden does not disappear. It shifts onto families. This can lead to carer burnout, financial hardship, reduced workforce participation and significant impacts on family wellbeing.
I am also deeply concerned about reassessment processes, automated decision-making and functional capacity assessments. Our experience with reassessments has often been stressful and destabilising. Surprise reassessments, funding cuts and lengthy review processes create uncertainty and anxiety for families already under pressure. Children with lifelong disabilities such as Down syndrome should not have to repeatedly prove their disability or justify supports that are clearly necessary and beneficial. Frequent reassessments can disrupt progress, delay supports and create unnecessary stress for both children and carers.
I am particularly concerned about how these changes may affect rural and regional families. Accessing services in regional areas is already challenging due to workforce shortages, long travel distances and limited availability of providers. Families living in regional communities often have far fewer options and less flexibility when supports are reduced, delayed or unavailable. We live approximately three hours away from the nearest major city and many essential services, which makes accessing therapies, specialists and disability supports extremely difficult. In our case, we regularly travel a six-hour round trip to attend medical and therapy appointments that are essential for our child and
not funded through any other system, while covering all travel-related expenses ourselves.
Being told to rely more heavily on mainstream systems such as health or education also does not reflect the reality many families experience. These systems are already stretched and often unable to provide the specialised or consistent support children with disability require. The NDIS has worked best for our family when it has recognised that early investment, flexibility and inclusion create better long-term outcomes. Early intervention, therapies, communication supports and community participation have helped our child build skills, confidence and connection.
I ask the committee to carefully consider the real-life consequences these changes may have for children with disability and their families.
I respectfully recommend that the committee:
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Protect funding for community participation, sport and social inclusion supports.
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Ensure “reasonable and necessary” definitions do not unfairly exclude supports that build independence, wellbeing and participation.
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Recognise the significant contribution and limits of unpaid carers and avoid policies that shift more responsibility onto families.
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Provide stronger protections for children with lifelong disabilities.
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Limit unnecessary reassessments and provide longer plan periods for stable participants.
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Ensure there are accessible, independent review pathways for decisions.
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Avoid over-reliance on automated decision-making processes.
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Consider the unique challenges faced by rural and regional families when designing and implementing reforms.
The NDIS has changed the lives of many children and families for the better, including ours. I hope future reforms strengthen the scheme without losing sight of the people it was designed to support.
Thank you for considering my submission.