National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1781

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. Submission on behalf of my two sons, and who are NDIS participants.

My wife,, and I am the parents of two adult sons who are participants in the NDIS: C who is 27 years old and B who is 30. Both of our sons live with significant disability.

C lives with spastic quadriplegic cerebral palsy, global developmental delay, epilepsy, incontinence and a mild intellectual disability. He has made great strides in walking in recent years but, except for his hydrotherapy and physiotherapy, he is confined to a wheelchair in his day-to-day life. He needs assistance with all activities of daily living, including toileting, bathing, meals, dressing and transportation.

C is a very active and enthusiastic young man who is passionate about sport and music. He receives Social, Community and Civic Participation (SCCP) funding through the NDIS, which enables him to take part in various social and recreational activities, including soccer, rugby, AFL, group outings, dances, concerts and other live performances. Many of these events are in Melbourne which is a 3 hour round trip away on the train. Cutting his SCCP funding by 50% as proposed would deprive him of these activities as they simply don’t exist in our area.

C loves being out in the community where he chats with everyone he meets. “Everyone in Warragul knows me!” This is repeated in several other communities that he visits. He is the Number 1 supporter of Gippsland United Soccer Club, attends training and has dinner with the players afterwards. He has tossed the coin in special matches and is always in the middle of the players’ circle when they sing the team song after a victory. Such moments are priceless. He also has paid for reserved seating (not NDIS funding), a wheelchair space for him and seat for his carer, at AAMI Park for soccer and rugby and has made friends with others there – out in the community and away from his parents.

We had a case in the AAT about this a few years ago, because the NDIA had only funded C for 6 hours of SCCP per day. That might sound like plenty, but for our family it was totally insufficient. In the tribunal it was determined that a significant increase was warranted and appropriately awarded. C and B both live at home, and we reside in a regional community. I am 75-years old and is 69. The boys have very limited NDIS funding for formal support with day-to-day activities.

  and I provide a huge amount of informal support to the boys, but we both have

various health issues – has high blood pressure and cholesterol and struggles with vertigo. Last week she was in hospital for a knee replacement. I, therefore, have to manage the needs of both adult sons alone as well as the added responsibility of caring for while she recuperates. I also have a knee problem, suffer from migraines, have severe diverticular disease, extensive osteoarthritis, high cholesterol and two leaking heart valves. I have been fitted with a pacemaker but still suffer from ectopic heartbeats and variable blood pressure. In just over a month I will be having heart surgery because I have three significantly blocked coronary arteries. I also have 50% blocked carotid arteries which cause various head disturbances. It should be obvious how difficult life is for us as parents and how

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1781

It is important it is for us to get a break from the boys. The current funding allows for this, as it should.

The day programs and weekend activities C participates in using SCCP funding serve the dual purposes of ensuring that he can engage in the community in a way that gives him a satisfying and fulfilling life as well as providing crucial respite for and me – which ultimately results in a lower cost to the NDIS because he lives with us and we provide him with so much informal support.

C is a very sociable and gregarious person who prefers to be out and about with other people. He can’t go out independently or engage socially without support because of his disabilities. Without his current SCCP funding, C would be stuck at home with and me (his ageing parents) for most of the day. His brother B is able to perform limited work at Coles, but C can’t do that or anything similar because of the extent of his disabilities. This kind of social isolation would have an incredibly deleterious impact on his mental health, as it did during the COVID-19 pandemic.

B also has spastic diplegia, cerebral palsy and psychological issues with autistic traits as well as other physical difficulties such as dressing himself and bathing. He has difficulty forming relationships and reading body language. It has caused him deep distress and inconsolable anguish. A couple of years ago his psychologist recommended getting a female carer roughly his age to take him on outings. This has been very successful and great for his well-being. However, it was not considered when his plan was constructed, so not much funding was allocated for this purpose and, since the recommendation, he has been depleting the accumulated funds from earlier in his plan. The plan does not provide for the benefit he receives and it will be diminished to a level that would make it less effective, which is the antithesis of the aims of NDIS legislation.

We are deeply concerned about any broad-brush approach that lessens SCCP hours without proper consideration for individual circumstances. Our sons deserve to have a fulfilling life, and also to live with us at home for as long as that is possible. The proposed changes would likely lead to profound social isolation for C and could make it unsustainable for him to be cared for within the family home. B would be similarly affected. In addition, if the SCCP funding is reduced by 50% across the board as proposed, it means that, unless the cost of providers is also reduced by 50% (a much needed reform) they will be at home for so much more time, placing additional demands on and myself. We are ailing aged pensioners whose lives have been controlled by the needs of the boys. We have had no retirement. In the past 30 years we have been out, just the two of us, only three times. To impose an extra burden on us without considering our particular circumstances is not only unjust; it is inhumane!