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 numbnessand other neurologicalchangesinhisfeetandlegs.Halsoassevererefractory coeliac disease(type 1 ) andaecutativecolitis . Healsothersignificantmedical conditions , too numerousto mention here.He cannot manage anyoftheabove without significant support(2:1 care during waking hoursanda : active support overnight).Hehas extremely limited access toninformalsupports,due toeage.distanceandanpentalillhealth.

Our concerns Weareappalled at an terrified most proposed changestoNDIS legislation that currently being tabled. Wedo however agree mandatory registration SIL providers which is already progress.We alsoregreethe pursuit fraud reductionhowever this should never be done detriment vulnerable participants.Wearrivedhorrorproposed heightened ministerial powers many parts proposals but particularly relation lack appeal.It worth noting anecdotal plansalready summarily drastically cut some cases by50% even beforelegislationisbeingtabled.There not enough time space express all our thoughts fears about the

proposed changesso will only focus top two affect son namely funding qualifying disabilities(S34 aa)ministerial cuts socialaccessS34AOurson’s listeddisabilities are intellectual ASD.The neuropathies although severe,not counted as disabilityscriteria to stand-alone within NDIS definitions.Before receiving appropriate level of he was frequently ill, elosing weight from inadvertent ingestion gluten choking foodfood going up nose and becoming impacted.Herquired frequent emergency hospital admissions for injuries infections skin burnsfromfrequent incontinence management problems.He had multiple sev ere episodes self-harm near-misssevereinjuries Hehadmany restrictive practices placeHe couldn’t leave house due support often tooill do so spending hours curled bed extent developing pressuresoresIt took five years concerted effort (multiple internal reviews AAT get him into supported independent living with adequate supports where non-qualifying” (disabilities medical illnesses eventually taken consideration his plan result 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 nonetheless.His fantastic stable team well-motivated highly trained hard-working carers who continue engaging him work assisting this progress.In short his an NDIS success story.The proposal fund supports directly related qualifying impairment result collapse son’s level support returning thoroughly miserable frequently unsafe life-threatening existence had before.Cutting community access severely restrict already limited social engagement possibilities.Has many specialist medical appointments changes may leave only these medical appointments “social outings” effectively imprisoning him.So far NDLS improve quality immensely proposed wind clock back dark ages poor health seclusion safety risks Please vote against or make significant modifications brutal proposals change NDS can see no features assist current future generations people disabilities families.Thank you for your consideration