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

Submission 1951

Submission to Senate re NDIS Future Generations Bill 2026

Background

We are the parents, of a 26-year-old young man with severe permanent intellectual and behavioural disabilities. He also has permanent damage to multiple nerves following chemotherapy and radiotherapy for leukaemia (x2) as a small child. The multiple nerve damages have left him with permanent changes to his ability to chew, swallow and speak. He has loss of fine motor skills in his hands, and bowel and bladder control problems. He has numbness and other neurological changes in his feet and legs. He also as severe refractory coeliac disease (type 1) and ulcerative colitis. He also has other significant medical conditions, too numerous to mention here. He cannot manage any of the above without significant support (2:1 care during waking hours and 1:1 active support overnight. He has extremely limited access to informal supports, due to age, distance and parental ill health.

Our concerns

We are appalled at and terrified of most of the proposed changes to the NDIS legislation that are currently being tabled. We do, however, agree with the mandatory registration of SIL providers which is already in progress. We also agree with is the pursuit of fraud reduction, however, this should never be done to the detriment of vulnerable NDIS participants. We are horrified at the proposed heightened ministerial powers in many parts of the proposals, but particularly in relation to the lack of right of appeal. It is worth noting that, anecdotally, plans are already being summarily and drastically cut, in some cases by 50%, even before this legislation is being tabled.

There is not enough time or space here to express all our thoughts and fears about the proposed changes, so will only focus on the top two that will affect our son, namely the support funding only for qualifying disabilities (S34 1 aa) and the ministerial cuts to social access(S34A).

Our son’s listed disabilities are intellectual and ASD. The neuropathies, although severe, are not counted as disabilities that meet the criteria to be stand-alone within NDIS definitions.

Before receiving an appropriate level of support, he was frequently ill, he lost weight from inadvertent ingestion of gluten, was choking on food, food was going up his nose and becoming impacted. He required frequent emergency hospital admissions for injuries and infections, and skin burns from frequent incontinence management problems. He had multiple severe episodes of self-harm and near-miss severe injuries. He had many restrictive practices in place. He couldn’t leave his house due to lack of support, and was often too ill to do so, spending hours curled up in bed, even to the extent of developing pressure sores.

It took five years of concerted effort (multiple internal reviews, AAT) to get him into his supported independent living with adequate supports, and where the “non-qualifying” disabilities and medical illnesses were eventually taken into consideration in his plan. The result was transformational.

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

Submission 1951

Over the past two and a half years, he has changed into a much healthier, happier young man. His weight has stabilised, and he is able to engage better and communicate with carers. The self-harm behaviours have reduced in frequency and intensity. There has been a reduction in the registered restrictive practices. He has begun to return to some previously enjoyed activities such as swimming, walks, bowling and going to movies. He has been able to move towards improved independence through capacity building support – e.g., he is beginning to help with parts of household tasks; laundry, food preparation -baby steps, but encouraging, onetheless. He has a fantastic and stable team of well-motivated, highly trained and hard- working carers who continue to engage with him and work with him to assist with this progress. In short, he is an NDIS success story.

The proposal to only fund supports that are directly related to a qualifying impairment, will result in a collapse in our son’s current level of support and a return to the thoroughly miserable and frequently unsafe, and life-threatening existence he had before. Cutting his community access will severely restrict his already limited social and community engagement possibilities. He has many specialist medical appointments, and the changes may leave him with only these medical appointments as his only “social outings”, effectively imprisoning him.

So far, the NDIS has improved his quality of life immensely. The proposed changes wind the clock back to the “dark ages” of poor health, seclusion and safety risks. Please vote against or make significant modifications to these brutal proposals to change the NDIS. We can see no features in these changes that will assist current or future generations of people with disabilities, or their families.

Thank you for your consideration