National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3007
I am a parent of a man with complex disabilities/impairments including intellectual disability, trisomy 21, autism spectrum disorder, tourette’s syndrome and anxiety. My son is in his twenties and lives at home with me (his mother) and his older sister while his father lives overseas and visits regularly. .My son has been a participant of the NDIS since 2017 and currently receives supports aimed at: developing his independent living skills both at home and in the community, increasing his community access and participation in recreational activities of his choice (sports, dancing, music production), developing his employability skills in the future, and improving his health and wellbeing.
Supports are provided in various form including:
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supervision to ensure his safety at home and in the community;
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repeated promptings, reminders and guidance;
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physical assistance with grocery shopping, meal preparation, some personal care including dental care and nail care and using kitchen appliances;
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transportation to/from appointments and social engagements;
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facilitation of social interactions while out in the community and at social events
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learning skills for independent living, social interaction and employment as skills need to be broken down into smaller manageable steps for the person to follow
I am highly concerned about the part of the Bill which will reduce funding for support categories like social and community participation, and the part of the Bill that places greater expectations on families and unpaid carers.
Please note that when my son first got accepted as an NDIS participant in 2017, I calculated that I spent approximately 95 hours a week (13 to 14 hours a day) in unpaid care, managing all aspects of my son’s life to ensure that he is living the life that he chooses, a life that is similar to his typical peers. The unpaid caring role includes personal care, meal preparation, ensuring his safety and the safety of others at all times, providing emotional and behaviour management support, health and treatment, communication and social participation, coordination of services and supports, employment, education and training and all aspects of his domestic life such as laundry, house cleaning, managing finances, paying bills, grocery shopping, ensuring he has healthy sleep patterns and regular routines.
The arrival of the NDIS was a welcome relief for my family as I was on the verge of physical and mental exhaustion at the time with health issues with other family members as well as my ageing parents whom I also care for. The supports provided by NDIS have helped reduce my caring load with my son, and I am very grateful for it. Despite the NDIS support, I continue to spend a considerable amount of time in the caring role, as well as managing his supports and planning all aspects of his life. If this funding is reduced, my son will have limited to zero access to the community, where he is happy and thrives being around others. He would go back to isolating himself in his room, playing with his obsessive toys, using his phone to watch the same videos over and over again, and sending the same text messages multiple times a day to the same person, As a human being, I believe that my son has every right to live a life similar to his typical peers. But due to his complex disabilities, he cant help himself and need supports
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3007
in place to enable him to live the life he chooses and to enhance his well-being.
My husband and I are both in our 60s and cannot be expected to increase our caring load. We would not be able to cope with greater caring expectations because we would soon need support ourselves. Also, my daughter (his sister) has her own health struggles which would limit her ability to provide significant informal support.
I highly urge you to re-consider introducing this Bill and maintaining the same level of funding for various categories, including community and recreational access to allow my son to live the life of his choice and be amongst members of his community.