Submission 1872
Submission to the Government on the Proposed NDIS Changes
My son , 22, has a genetic disability called Ataxia Telangiectasia, A-T for short. A-T is progressive, it significantly shortens his lifespan, it affects his nervous and immunity systems, which means it has put him in a wheelchair since the age of 9, and it makes him approx. 1000x more susceptible to cancers than the general population. It robs of normal life, it robs him of opportunities and it robs him of social connections.
Due to the A-T’s progressive and unpredictable nature ’s needs can change very rapidly – e.g. from being able to weight-bare during transfer to suddenly not being able to hold his own weight overnight. His fine motor skills are in constant slow demise. His speech is slurred and due to continuous loss of muscle control it is getting worse and worse. His saliva production is through the roof. It is important to note that has no intellectual disability and goes through all this with an amazingly positive attitude to life. And that is very largely thanks to being on the NDIS.
The NDIS is currently the single most amazing and important thing that has happened for and we have been grateful for it ever since its implementation. At the moment it means that can have Support Workers he chose, it means he feels as normal as it is humanly possible with his condition, and it means he can access local gym three times a week. Gym is life for . For us it is just a way to get our exercise in but for it is a WORLD that is away from inside our house. Apart from hospital visits and carer interactions gym is the only place gets social interaction. He has amazing supporters in his two trainers and gets lots of interaction from other clients. Attending gym is vital to ’s wellbeing, it makes him feel good, it gives him scope for improvement and it gives him purpose which (I hope we can agree) is what makes life worth living. In times when is not well and cannot get to the gym he becomes a shell of himself and his general health spirals as well. As this is one of the most glaringly obvious upcoming changes, I decided to write the following:
- As it stands The Minister can cut participants plan by instrument, with no review (s 34A). “A percentage of funding can be removed from a support category by legislative instrument. The first cut is locked in: social and community participation, phased in from 1 October 2026 as plans renew. The same power can apply to any support category to any level in future ( Sam Paior, The Growing Space submission)”. For a participant whose social and community participation funding is the only thing that keeps them emotionally and mentally well, cutting this in half will be immensely detrimental to their overall health. Community participation can be the only way they get to experience the world outside their own bedroom, go to do their shopping, see a GP, see another family member who is not able to otherwise visit them. Please, do not cut community access funding to this level, look at the client’s needs and assess it on personal level, not using an automated software or rely on a “across the board decision” made by one man.
In light of reading the proposed Bill there are several other issues that concern me greatly, as a parent, as a carer and as a human being and a part of a democratic society. I have “borrowed” these from thesubmission made by Sam Pior, CEO of The Growing Space and will be quoting them here becausethey expressed exactly my fears and suggest practical solutions:
- “Asking for an unscheduled reassessment becomes much harder (s 48A). The Agency now has 90 days instead of 21 to decide AND the “deemed decision” safety netis gone, AND the change must be “significant and ongoing“ - with informal-supports changesonly counting if “unanticipated.“
Submission 1872
Suggestion:
Retain the 21-day decision timeframe for unscheduled reassessment requests, restore the “deemed decision” safety net for missed deadlines, and remove the “unanticipated” qualifier on informal-supports changes.
3.
There is also no emergency reassessment pathway. The Bill treats all unscheduled reassessments the same. But for a participant whose support arrangement has collapsed, whose housing is at risk, whose behaviour support needs have escalated, or who is facing an immediate safety risk, 90 days is not a timeframe - it is the period in which harm happens. The current scheme has no statutory fast-track pathway for these participants, and the Bill does not create one. It should. Suggestion: Insert into s 48A a separate emergency reassessment pathway with a statutory 14-day decision timeframe, available where the participant, a nominee or a treating practitioner certifies that the participant faces an urgent safety, housing, behavioural or support-breakdown risk. Provide that a missed 14-day deadline is a deemed decision in the participant’s favour pending final determination.
4.
Plan suspension and revocation can happen without you knowing (ss 40A, 30(1A)). The CEO can suspend a plan after “reasonable attempts” to contact the participant - but neither “reasonable attempts” nor the minimum period before such attempts can be deemed exhausted is defined in the Bill. A participant could be overseas for two weeks, in hospital, in a mental-health crisis admission, in the middle of a family bereavement, or simply have a phone number that’s been changed - and find their plan suspended. Suspension for 90 days = revocation under s 40A. Worse, s 30(1A)(a) allows direct revocation without the 90-day window if reasonable attempts have been made. None of the protected circumstances participants would expect - hospital admission, mental health crisis, bereavement, short-term overseas travel, communication breakdown - is named in the Bill. The Agency’s administrative discretion is the only safeguard, and it isn’t enough. Page 6 of 28 National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 193 Submission - NDIS Future Generations Bill 2026 - Sam Paior Suggestion: Define “reasonable attempts” in s 40A and s 30(1A) as requiring evidenced contact attempts via every channel the participant has provided (phone, email, post, and any listed emergency contact, nominee or support coordinator), documented and spread over a minimum 60-day period. Build in protected-circumstance exclusions that pause the clock - hospitalisation, mental health admission, bereavement, family emergency, overseas travel of less than 6 weeks, and communication breakdown outside the participant’s control. Remove the direct-revocation pathway in s 30(1A)(a); the 90-day suspension window in s 40A does the necessary work without removing the safety net.
5.
Informal supports first (s 34(1K)). Formal funded supports only where reliance on informal networks would expose someone to “material risk of harm, abuse or neglect that cannot be mitigated through informal or lower cost supports.” A high bar that undervalues choice around carer reliance and loses future-focused capacity-building before carers age out. This also places undue burden on the partner of a disabled person who might be able to provide informal support, but would be unable to maintain employment or any kind of reasonable relationship due to caring responsibilities. At what point should a solo father be changing the tampon of his 20 year-old daughter because that is not considered a “material risk of harm, abuse or neglect”? This is such a dark return that will undo all the work done to increase independence, dignity and respect of and for disabled people, and will further trench the “carer burden” narrative, further devaluing the lives of disabled people in the public eye. Suggestion: Amend s 34(1K) so that the “material risk of harm” test takes account of (a) dignity and independence of the participant, (b) sustainability of the informal arrangement (including carer health, carer employment, and the carer’s own capacity over time), and (c) participant’s right to choose not to rely on informal supports in matters affecting their bodily
Submission 1872
autonomy and intimate care. Restore future-focused capacity-building as a fundable category before carers age out.”
I strongly urge you to co-consult/co-design with stakeholders (participants, their families, carers, providers) and take time to get this Bill right. I absolutely agree that we need to find a way for the NDIS to be sustainable and future-proofed but please, do not decrease the participants quality of life to achieve it! In my experience the majority of cost blow outs do not come from participants who depend on the services but from providers who automatically attach an “NDIS price tag” to all services AND products that would have cost at least 30% less prior to NDIS implementation. E.g. Claiming $243 for forty five minutes of physiotherapy from the NDIS is almost extorsion. But due to the service fee cap, the physiotherapist is allowed to charge those fees, where a private physio would charge around $150 for the same time. Possibly this is where some savings can be made. Decreasing service fee caps.
I would like to express my gratitude for Australia having a disability support system as inclusive as possible at present and I sincerely hope that we as a country will continue on this path and will not revert back due to the proposed changes. Thank you for reading my submission and also please, sconsider the submission made by The Growing Space. And do so with great care. Do not hesitate to contact me using the following details should you wish to discuss any points further.
Warm regards