Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Submitted by: Name withheld
Summary
This submission mainly relates to a key issue around the proposed change of introducing “Plan renewals” with a provision applied that there will be a “removal of one off funding, such as funding for assistive technology or home modifications” from the renewed plan.
If implemented as described in the “Memorandum of Explanation” it appears that failure to amend this to exclude “unspent” one-off funding from being removed may have serious unintended consequences by removing participant access to unspent funding which has previously gone through all necessary approval processes before being allocated to the plan budget. This has the potential to leave many participants with unfinished home modifications or remove their ability to purchase already approved assistive technology which has not yet been acquired as at the date a plan is renewed. Information on how this may occur and the complexity of the flow-on effects of such unintended consequences is included.
It is recommended that any unspent one-off funding be exempted from this removal provision.
Additional related issue
While this submission does not address a further issue in relation to the use of “three month funding periods” its content is relevant to and should be considered in parallel with that topic as well. It is critical that funding for expensive assistive technology (AT) and home modifications (“mods”) be excluded from being released in short time-frame “funding blocks” of any nature and must be released in full so that participants can proceed with such essential expenditure as intended or planned. It would be totally inappropriate for (say) an approved $30,000 budget item to be released as four equal instalments of $7,500 at the start of each 3 monthly funding period – this would result in a participant not being able to spend already approved funding until the start of the ninth month of their plan i.e. when the final “instalment” of funding for that 12 month plan was released. 1
1 https://www.ndis.gov.au/participants/using-your-funding/understanding-your-ndis-funding/what-ndis-funding Currently, unspent funding from one 3 month period can be carried over to the next 3 month period, so if a larger expenditure is required than the 3 month dollar amount then the participant has to wait until a further “chunk” of funding is released in subsequent funding period/s before being able to access that funding for its approved purpose. Note that for some participants their funding may be released in shorter periods than 3 monthly. “Funding periods The total amount for each funding component will be made available to you in specific time intervals. We call these funding periods. Each funding component has its own funding periods. Funding periods will usually be three months. You can spend up to the amount of funding available in that time. Funding periods helps give you flexibility and to manage your budget. They do not change your total funding amount in your plan. They only change when you can access your funds.”
Page | 1Information contained in this document
I “apologise” for the amount of information I have provided on my personal situation and experiences but that information is intended as a “lived experience” example which illustrates what happens when things are implemented without proper and full analysis of the repercussions of a change, and/or what potential harms can arise from not building in sufficient flexibility to mitigate or prevent those harms.
My previous personal experience with the changes made in the Lists of Supports” rules in October 2024 illustrate exactly how “unintended consequences” are likely to arise from implementing the proposed “plan renewal” change as written in the Explanatory Memorandum (page 35) for the Bill. I am desperately hoping that I – and many other participants – do not suffer far worse consequences from the specific issue being addressed in this document.
NDIS and Me
I am an existing NDIS participant and I have been since 2019 when my age group became eligible to access the scheme (where I live the rollout was done by age cohorts, with the over 50’s being the last to become eligible at the start of 2019). I have an incurable deteriorating neurological condition which was diagnosed in 2013 when I was in my mid-50’s after around 8+ years of progressively worsening symptoms which were not taken seriously by the medical profession. This disease results in a variable range of multiple impairments which steadily worsen over time as the disease progresses. I am currently at the stage where I need a walker 100% of the time, on a good day I can take maybe five or six steps with the use of furniture and walls as supports. I should be using a power wheelchair in my home now but this is not possible in my current house.
In 2016 I suffered an extremely rare and nearly fatal cardiac related health crisis which resulted in my neurological impairments being significantly and permanently worse after a month in ICU and acute hospital care and despite a further two months in residential rehab before being allowed to come home.
I have no family and these days an extremely limited “social circle” of about maybe five people (also over 50yo and/or disabled) who I have only a small amount of contact with (and that’s almost entirely by phone these days). When you become disabled and have no option but to cease work it is a sad truth that for many people where a lot of their social contact was through work that contact tends to disappear as you fade away from your still-working former colleagues’ radars.
The supports I receive from NDIS include assistance with domestic tasks such as doing laundry, meal preparation, house-cleaning, yard maintenance, grocery shopping, attending appointments, assistance with personal care when needed, physiotherapy to keep me moving, and podiatry (my neurological condition requires allied health monitoring of my numb feet plus I can’t cut my own nails any more). I also receive some semi-regular psychological support to deal with the impacts of living with a steadily worsening level of disability – we don’t all come equipped with the mental strength, resolve, and family supports that people such as Neale Daniher or Professor Richard Scolyer had!
Without my NDIS supports I would be living in unsafe squalor as my disabilities have worsened to the point where I can only do things which do not require anything other than a very low level of physical capacity – even preparing a basic meal such as a salad is an exhausting activity for me and simple common domestic tasks such as changing bed linen, vacuuming floors, hanging out washing, or basic yard/ garden maintenance are totally beyond me these days. Without NDIS I would not be able to continue to live
Page | 2independently and would have to be living in some sort of institutional care – and at a much higher costs to the taxpayer than my NDIS funding.
Housing situation
I live in my own home and have been in this house since 2012 (prior to diagnosis of my neurological condition), but unfortunately it is quite unsuitable for a person who now has to use a walker full-time, and is totally unliveable for a person in a wheelchair – and the Occupational Therapist (OT) T who did my first functional capacity assessment back in 2020 made it very clear to me that no amount of money spent on modifications could ever make it suitable. It is on a hill with 15 steps up to the front door and it has small bedrooms and a narrow hallway. My only access into the house these days is to climb 50 metres up an uneven and unlit hill path to the back door. I now use my walker 100% of the time and I should be using a wheelchair on bad days but that is not possible in this house, so I live very carefully to try and avoid more falls which could result in more broken bones (been there and done that and have no desire to repeat the experience…).
I have already suffered “loss” of NDIS funding as a result of the overly zealous implementation of the first legislated2 and badly thought-out “Lists of supports” in October 20243 - often called the NDIS “Yes/No Lists”). My neurological condition is one where heat has very negative effects on function and can significantly increase falls risks when core body temperature rises by even a small amount. I still have funding in my plan for purchase and installation of an air-conditioner for my bedroom (as a “stated item”) but this can no longer be purchased as it is classified as a “standard household appliance” in the exclusions that make up the “No” list4. It is also not obtainable under the rules for “replacement support” exceptions as it is not actually a substitute for any other of my NDIS funded supports.
When funding was approved for it back in 2021 I did not immediately obtain this air-con unit as I already knew from my OT that I would have to move house before my disabilities worsened much more. This was discussed with the planner who did my plan review from which the AC funding was approved i.e. the likelihood that it would be purchased for my next house if one was not already installed and there were no issues seen with this intention of delayed purchase and installation once I found a wheelchair suitable property to move to. I should note at this point that (as was the standard practice at the time) my plan was done for 12 months by the planner who supported the supply and installation of an air-conditioner, when that plan was due for review it was set up for three years by a different planner and the AC funding was “carried over” into the new 3 year plan, which has since been continued twice.
Unfortunately, COVID’s effect on the housing market and the ongoing nature of those massive price increases meant that finding a wheelchair suitable house I could afford became an almost unachievable goal which ended up taking four years to be realised (and I only managed to get a house by withdrawing an extremely large portion of my superannuation). So, as a result of not being able to find a house, plus then not being able to use the already approved funding for my current house due to the “Yes/No List” implementation I have spent the hottest nights of the last few summers spraying my nightwear with water to make it damp and trying to sleep with a fan blowing air across me. This is not a healthy thing for anyone to do but I had no other options as the approved air-con could no longer be purchased.
2 Transitional Rules 2024: https://www.legislation.gov.au/F2024L01257/asmade/text 3 What is an NDIS Support: https://ndis.gov.au/participants/using-your-funding/understanding-your-ndis funding/what-are-ndis-supports 4 What is not an NDIS support: https://ndis.gov.au/media/8350/download?attachment
Page | 3I obtained input and “clearance” from my OT about the suitability of the “new” house before completing the purchase as NDIS are very reluctant to consider funding home modifications if such input regarding suitability has not been obtained prior to settling a house purchase. However, the time-frame for me to be able to move is uncertain as I now need to jump through the hoops of further consultations with my OT, getting plans drawn up, obtaining council approvals, finding a builder, getting quotes and then obtaining funding approval for bathroom disability modifications and two small ramps which must be done before I can move in. My falls risk is high – I have had quite a few falls in the last few years and 18 months ago suffered a broken ankle in my current house from an awkward fall due to the limitations of this house and the risk of further injuries will only get higher as my disabilities worsen. Unfortunately it looks as though because of the time required to get from OT report to finished building works, plus that the “new” house is currently tenanted and subject to lease time-frames so that the mortgage gets paid, it will quite possibly be around another year before I can move in.
Professional background – for context
I am providing this information on the skills and experience I have which are relevant to the concerns I am raising in this document.
I spent the last ten years of my working life as a Business Process Analyst in the implementation of large state-wide Govt Health IT systems in hospitals and other health departments.
In previous Govt positions I also had experience with investigating complaints and formulating responses to State Health Complaints Commissioner enquiries and investigations.
I undertook significant re-engineering of processes involved with credentialling of rural medical practitioners in this state and was involved with root cause analysis for critical health incidents being investigated by the department I worked for at that time.
I spent eight years from 2017 as a member of the Premier’s Disability Advisory Council in my state, providing feedback and input to our State Government on a range of disability issues, especially health services and access to health services. .
I was a member of one of the NDIS working groups involved in the NDIS Review over 2023/2024 and a member of one of the NDIS Co-design working groups.
I have a Bachelor of Commerce with Majors in Management, Marketing, and Human Resources, gained as a mature age student in my 40’s. My studies included 3rd year level OHS and Rehabilitation with a focus on workplaces, but the analysis skills and knowledge gained were highly transferable (and indeed have been utilised by NDIS in its national review working groups and one of the Co-design groups).
Proposed changes
I do understand the drivers for many of the proposed changes but do not agree that the extent of all of the changes is necessary. I have serious concerns that many have not been fully or properly worked through in relation to the negative repercussions on many participants and the potential harms that may come from those repercussions.
The proposed amendments and changes have been and will continue receiving plenty of attention from other people and groups but I want to focus on one specific change which has potentially dire
Page | 4consequences that most people would not even pick up on. The potential for these problems to arise would not be noticed unless someone is familiar with how “unintended consequences” can arise from failure to undertake a proper analysis of flow-on repercussions from what might appear on the surface to be a “simple” change, especially where the problem is due to poor/ sloppy wording of the proposed change and can easily remedied by use of appropriate wording and the provision/ inclusion of appropriate allowable exceptions.
The issue – proposed “plan renewals” of 12 months duration & with one-off funding removed
Page 35 of the Explanatory Memorandum accompanying the Bill is about “Plan Renewals” and notes that renewed plans will be based on the participant’s previous plan, also that all plans will be “renewed” for a period of 12 months only. This proposed 12 month plan duration is a major shift from the previous position of NDIS of making plans for up to five years duration for participants with stable needs. It is also stated on P35 that any approved “one-off” funding which was part of the earlier plan will not be included in the renewed plan5. Bold font and underlining for emphasis is mine but the actual wording in the Memorandum is as follows:
“All plans will be renewed for a period of 12 months. A renewed plan is based on the content of the previous plan, subject to certain adjustments, including the removal of one off funding, such as funding for asset6 assistive technology or home modifications……”.
Given that delays often occur in organising some complex AT and actually completing home modifications it is entirely possible that a participant’s plan could be “renewed” before funding which has been approved and allocated to a plan has actually been spent (it must be noted that NDIS forbids the expenditure of any funding prior to actual supply of a product or service).
Assistive technology
A significant problem with the 12 month time frame proposed for all renewed plans in relation to Assistive Technology (AT) is that some AT can take more than 12 months to obtain:
Items that need to be scripted for extremely complex needs – potential delays from waiting times for access to the expert knowledge to undertake scripting (and then delays in being to source such AT – see following points)
Items in short supply with purchasers having to wait until they reach the top of a “waiting list”
Items that have to be sourced by local agents from overseas suppliers
Items that need to be manufactured from scratch and/or complex “build to spec” items.
Situations where multiple items must be trialled before a final model can be selected and recommended by appropriate Assistive Technology Advisors etc.
5 Also see the last two paragraphs on P39 of the memorandum where it is written: “Proposed new subsection 50A(2) will provide that the text of the new plan will remain the same as the old plan except for the following alterations:
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The end date for the new plan will be the 12-month anniversary of the end date of the old plan. This means that all renewed plans will be of 12 month duration.
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The new plan will not include any one-off funding for supports that were included under the old plan. One off funding includes capital supports, such as funding for assistive technology or home modifications.” 6 Note – the extraneous word “asset” is clearly an uncorrected typing error in the Memorandum itself, but I have quoted verbatim.
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Home modifications
Quite apart from often extremely lengthy delays in getting essential home modifications approved due to the length of time NDIS can take to approve such funding, even once that approval is through the actual home modifications can also easily take well over 12 months to be organised and get done – time frames can include delays due to:
Obtaining occupational therapist (OT) input into and provision of reports on layouts
Drafting of floor plans by drafting firms
Submission of plans to local councils for approvals (if/as required by local Govt jurisdictions)
Finding builder/s and obtaining quotes
Being stuck in a builder’s queue of work waiting to be done
Delays due to material shortages and labour shortages
Finding unexpected problems during the work being carried out and thus additional funds or approvals required before work can continue
The list of things that can extend building time frames just goes on and it is rare for building projects, even very small ones, to be completed on time. It also needs to be noted that with some larger jobs builders require progress payment as stages of the work are completed. There are many participants who have found that it’s taken two or three (or even more) years from starting the home mods process to finally have an accessible bathroom – and in the meantime some participants have been unable to have proper/ regular showers and/or have suffered injuries due to unsuitable and unsafe bathrooms and toilets. Or they may have had to sleep in unsuitable rooms or been unable to prepare meals etc. Additionally, informal carers and/or support workers may suffer injuries due to having to work in unsafe ways due to modifications not done yet.
Potential “unintended consequences” of the poorly drafted and inappropriate wording
The consequences of this lack of proper analysis of the likely repercussions of this poor wording and failure to provide exceptions on unspent one-off funding carrying over to into a renewed plan are a likelihood that if implemented “as written” on P35 of the Memorandum there will be potentially many occasions where participants will be unable to proceed/ finalise equipment or home mods that have already gone through all of the funding request and approval processes simply because their plan being renewed will automatically remove that approved funding from the renewed plan.
Assistive Technology
Some of the “unintended outcomes” of this would be that participants would be:
Exposure to risks of injury due to having to use/ continue to use unsuitable AT,
Increased isolation due to lack of essential AT meaning they cannot leave their home
Inability to carry out usual activities that they need the AT for e.g. basic hygiene routines, attend health and other appointments, go to school or other educational facilities, participate in everyday family activities, shopping (clothes, groceries etc)
Inability to participate in their community (despite the planned reduction of Community Participation funding this is still a part of most people’s lives)
Page | 6 Increased work load on family and informal carers due to lack of suitable AT – especially if/when existing AT needed to be replaced due to increased disability, or in the case of children them having outgrown the existing AT
Increased risks of injury to family/ carers/ support workers due to unavoidable continued use of unsuitable and inappropriate AT
The participant and/or their representatives will be faced with trying to “appeal” for the funding to be reinstated in a “new look” NDIS where avenues to seek a remedy for such problems are becoming much fewer.
Home Modifications
The same situation is even more likely to apply for home modifications and the potential ramifications could be even worse if a plan renewal results in the removal of unspent “one-off” funding:
Participant injuries and hospitalisations from building work unable to be done due to unachievable time frames so participants have to continue living in unsuitable/ dangerous environments
Builders refusing to continue working on partly finished mods because progress payments can’t be made if plan renewal removes unspent home mods funding.
Builders refusing to even take on NDIS work over concerns they may not get paid if approved funds disappear when a plan is renewed. Or builders demanding that all money for the mods be paid up front – which cannot be done due to NDIS’s requirements on not paying for goods or services not yet supplied.
People unable to move to suitable homes because essential pre-moving-in mods either not started or finished and because funding was removed from plan when plan “renewed”. This would include people who have organised a “new” home to move to which better meets their disability needs, as well as people stranded in hospital or rehabilitation facilities beds who need home mods done before they can leave institutional care – and it should be noted that waiting on NDIS funding is already a significant factor in the bed-block problems faced by many hospitals around Australia.
Homes that are uninhabitable or inaccessible due to unfinished mods and unspent funding for completion of mods had been removed from a renewed plan
Increased risks of injury etc to family and support workers due to unsuitable / dangerous home environments.
Potential Medium Term Accommodation Issues
NDIS has capacity to fund what is called “Medium Term Accommodation” (MTA) for up to 90 days being provided for the participant while home mods are being done and where the participant’s existing home will not be habitable while the mods are being carried out. This MTA is a “one-off” funding amount. In the questions raised below all of the potential causes of delays in completion of home mods which have been raised in the previous section need to be factored in.
MTA is generally only for a maximum of 90 days so what is NDIS going to do if those 90 days are up and NDIS itself is responsible for delays in mods completion due to removal of a remaining balance of unspent home mods funding from the “renewed” plan?
Will NDIS allocate/ approve additional MTA funding if there is a delay in the mods completion because mods funding disappeared due to a plan renewal?
Page | 7 What is NDIS going to do if funding for the required number of days of MTA straddles the end of one plan and the start of a renewed plan? Will the remaining unspent balance of the already approved MTA funding also be automatically removed from the renewed plan – thus further complicating the participant’s situation?
Where does the participant physically go and live if a remaining unspent balance of MTA funding suddenly disappears due to a plan renewal? Or the 90 days is up but the home mods are not completed?
Will NDIS expect a participant to use their own money to pay for unanticipated additional accommodation costs which will be incurred due to NDIS’s own badly thought out process of removing unspent one-off funding when a plan is renewed? NDIS rules are that participants cannot incur costs and then seek approval for them to be reimbursed – NDIS requires approval to be sought before funds are spent – but this doesn’t help a participant who is already in MTA and has to pay for additional costs incurred due to NDIS’s own poor processes.
The most feasible “Solution”
This issue is not a difficult one to deal with and the most feasible solution to the risk of potential unintended consequences is to ensure that wording in relation to one-off assistive technology and home modifications funding in the context of “Plan renewals” refers to “unspent one-off” funding being able to be carried over when a plan renewal is done. This could be further refined by including provisions that one off funding for AT or home mods which were approved and unspent but which have since been superseded by a change in the participant’s needs or by a subsequent plan variation or review are excluded from being carried over, and as/if necessary can be replaced in a participant’s plan funding by a new allocation of funding.
What is critical is that participants must not be left in a limbo land of “unfinished business” if loss of already approved funding occurs due to failure to identify and put in place processes to prevent these “unintended consequences” occurring if the proposed plan renewal changes are implemented as currently outlined. Safeguards must be put in place to ensure that participants and their families/ carers/ support workers do not suffer avoidable injuries or harm as a result of funding being removed from renewed plans as outlined in this submission. It is equally important that participants do not have to re-start going through approval processes involving lengthy time-frames in order to get AT or home mods reapproved if not yet sourced.
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