Submission regarding the “National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024”

Thank you for the opportunity to make a submission regarding this proposed legislation.

It is deeply frustrating to me that this Bill has been prepared in secret without co-design as previously promised by the Labor party. The lack of co-design is glaringly obvious in the huge raft of likely unintended consequences that could result from this bill.

It is also extremely disappointing to see that there is no legislated requirement that the proposed rules should be developed using co-design.

Section 10: serious issues with (likely) unintended consequences

The current wording of Section 10 leaves a lot of very fuzzy/unclear meanings open to multiple interpretations with potentially disasterous consequences for people with a disability. I currently have to assume that these consequences are unintended, because it would be severely violating human rights in ways that cannot be justified as required to support the sustainability of the scheme if these were the intended consequences of the new Section 10 of the legislation.

I recognise that the phrases in use come directly from the UN Convention on the Rights of Person’s with Disabilities1 (UN CRPD) - but taken out of context here without their surrounding intent the phrases come to mean something a lot more prohibitive and quite different to the enabling definition that they have within the UN CRPD.

Part of the problem with fuzzy/unclear meanings open to multiple interpretations is that the people who need to implement and monitor the usage of NDIS funding can interpret the language to mean different things, particularly given that the vast majority of people involved will not have training in reading/interpreting legal language. Some of the issues that participants are already experiencing with the NDIA are due to overly narrow/strict interpretations of permissive sections of the NDIS legislation. Reading Section 10 with a narrow/strict interpretation of what has been written will result in people with disability not being able to access a very wide range of valid disability supports.

What is the intended meaning of Section 10.a.(i) “is necessary for the person to live”?

a)

Is showering considered necessary? Are personal care supports in the home considered necessary? Is assistance in changing bedding, doing washing, having clean clothes to wear considered “necessary” or are all of these considered “optional” supports that are therefore not included in Section 10.a.(i)? If they’re not included in Section 10.a.(i) it means that these supports would no longer available at all even though there is no Foundational Supports available yet to replace the loss of these NDIS Supports. How are participants supposed to get daily living supports during the period between the 28 days after this legislation is passed, and when Foundational Supports actually become available?

b)

Is there a limit on what is considered “necessary” - e.g. “showering 3 times a week is necessary but showering daily is excessive”, and if so how would that limit be calibrated/documented/standardized? Is this something that gets left up to the NDIA/personal opinions and therefore varies substantially between participants as happens with so many supports now?

c) Where is quality of life considered with the “is necessary to support the person to live” criterion of Section 10.a.(i)?

d) How does a person prove that a support “is necessary to support the person to live”

without having to die from lack of the support first? Proving it had indeed been necessary posthumously does not help the person involved (example: Liam Danher & The seizure alert mat he required, 2021).

I find it difficult to believe that the intent was that in order for a support to be an NDIS Support under Section 10.a.(i) it must achieve all 3 conditions as currently written rather than simply any of the 3 conditions. If it was intended that any of the 3 conditions be met, this section should be using the word “or” rather than “and” to join the 3 conditions. The use of the word “and” vastly narrows the meaning of Section 10.a.(i).

Violations of Disability Rights Convention

This violates the Convention on the Rights of Persons with Disabilities Articles 3.6, 4.1.f, 4.1.g, 9.1.b, 9.2.f, 9.2.g, 9.2.h, 21.a, 21.c, 21.d, 24.1.c, 24.2 (all subclauses), 24.3 (all subclauses), 24.5.

Prosthetics:

Under Section 10.a.(iii), leg/foot prosthetics could be classified as “mobility aids”, but all other prosthetics are excluded in Section 10.a.(iii) from being an NDIS support. These are again difficult to justify as meeting all 3 conditions in Section 10.a.(i) as currently written.

Banning access to prosthetics violates the Convention on the Rights of Persons with Disabilities Articles 3.6, 4.1.f, 4.1.g, 26.3 (lack of availability due to expense).

Safety equipment:

including items such as visual fire alarms so that someone deaf can be alerted to a fire, fall alarms, grab rails, tip kettles (to prevent burns due to poor arm strength/control), etc. Some items may be able to be argued as permitted by 10.a.(i) as necessary to support the person to live - but as many of these won’t affect inclusion in the community they only partially satisfy rule 10.a.(i) as currently written.

Some may be supported under rule 10.a.(vii) as being necessary to prevent acquiring additional disabilities. Proving to the NDIA the participant really is in danger of acquiring additional disabilities due to the lack of these items without actually experiencing injury/increased disability first due to the lack of these items is not straightforward.

Lack of access to safety equipment required due to disability violates the Convention on the Rights of Persons with Disabilities Articles 4.1.f, 4.1.g, 4.1.h, 28.2.a

Medically Required Equipment:

including items such as high-low beds, ventillators, oxygen concentrators, seizure mats, airconditioning for people unable to self-regulate temperature, cathetors, feeding tubes, incontinence equipment, etc. In some cases these may be argued to fit into Section 10.a.(i) of the proposed legislation clauses though once again many of these would only partially match as it would be difficult to argue that they also promote inclusion in the community/prevent segregation, but others while medically necessary are not immediately life-threatening.

The original explanatory memorandum for the NDIS Supports for Participant’s Rules 2013 legislation for Paragraph 5.22 in the second dot point uses the example of air-conditioning for someone unable to self-regulate temperature due to MS as being a valid NDIS support, which indicates that this category of supports was indeed “within the spirit of the original NDIS legislation”. Lack of these devices results in the participant being unable to have a reasonable quality of life due to the medical impact on them from the lack.

My own example out of this list is air-conditioning. I lose consciousness if I spend 1/2 an hour in temperatures as low as 28 degrees and so far I don’t return to consciousness until I cool down again. I start getting faint/dizzy/have difficulty thinking from only 26 degrees. For large portions of the year I become completely incapacitated if air-conditioning is not available. This removed my ability to use public transport as train

stations/bus stops are not air-conditioned - and passing out in my wheelchair has the associated risk of knocking the joystick when falling unconscious and driving off somewhere random (into traffic, off a train platform, down an escalator, etc).

      Liam Danher's death in 2021 likely could have been prevented if he'd been able to access
         the seizure alert mat that had been explicitly recommended as required for detecting his
        nocturnal seizures, but access to such a mat would now appear to be excluded by the
       wording of Section 10.a.(iii), does not meet the requirements for inclusion in the
       community/preventing segregation & isolation for 10.a.(i), and impossible to prove that
               it was needed to prevent additional disability for 10.a.(vii) given that the NDIA wouldn't
         believe it was necessary at all.

      The inability to access medically-required AT violates the Convention on the Rights of
         Person's with Disabilities Article 10. Futher, the proposal to ban access to "whitegoods"
         as a support in the explanatory memorandum for section 10.c would also block access to
      some medically-required AT such as air-conditioning for those whose conditions result
         in the inability to self-regulate their temperature or for whom temperature greatly
         increases the impairment experienced from their disability (like MS).

   3. Home modifications have been entirely left out of the list of valid NDIS supports. Some
   home modifications such as wheelchair access, ramps and hoists could be argued to be
      "facilitating the person's mobility" and therefore covered by Section 10.a.(iii). Other
     modifications such as lowering a benchtop in the kitchen so that a participant in a
    wheelchair can make themselves a sandwich/do meal preparation work on their own are not
     supported at all, as it's not necessary to support the person to live given there are other
      alternatives such as having a support worker do their cooking for them, nor does it facilitate
     inclusion in the community, nor does it prevent their isolation/segregation, nor does it
       facilitate the person's mobility.

    This affects the person's ability to live independently, and the lack of access to these
     supports forces them to become more reliant on other people for daily living tasks due to not
    being able to do those tasks themselves. In the long term, paying someone to do these tasks
       is far more expensive than the modifications to enable the participant to do them themselves.

       I find it difficult to believe that home modifications were intended to be deliberately
    excluded from being an NDIS Support. Given that there is also a desire to reduce the
      availability of support worker assistance to 1:3 (which either means forced moving into
    group accommodation or being put at life-threatening risk due to having time without
     support available who can respond to emergency situations for the majority of each day),
    removing the ability to access the home modifications required to support the person's
    independence/reduce their need for a support worker contradicts the direction that the
    government has stated it is trying to move in.

   4. Section 10.b - Whitelisted supports
       If supports have to be on an allow list first, how can there ever be innovation in disability
     supports? You cannot innovate if by definition the support must be a known, approved
     disability support that is already present in a whitelist of "valid" supports. This
     includes both supports covered by Section 10.a and those supports explicitly listed in
     Section 10.b's associated rules.

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5. Section 10.c - Blacklisted supports

I have an essential disability support that has been agreed with the NDIA to be an essential disability support that according to the explanatory memorandum for the legislation changes is highly likely to be added to the blacklist due to ignorance of how it could be a disability support.

I have extensive nerve damage to both my sensory & autonomic nervous systems. Any pressure on the skin is painful, and repeated or ongoing pressure rapidly accumulates increasing pain.

One of the consequences of that is that I can no longer type on my fingertips because it very quickly sets my hands & arms on fire with severe burning/scalding pain that remains for many hours. I need an orthosis that protects my fingertips from impacting on the keys when I type but that does not itself put pressure on the skin or force my fingers apart (which triggers tendinitis and inflammatory joint pain).

No such orthosis exists in the medical world. Medical orthotics are in general designed to support/protect joints, they wrap around the fingers and/or hands, they add bulk between the fingers separating them, and they do not usually protect the tip of the fingers from contact. They are solving the wrong problem to be of any use to me.

What I have been using successfully since 2016 is artificial nails. My own nails are too weak to reliably do the job (and it is a horrible feeling when you have to tell your boss “I’m sorry, I cannot work for the next few days because I broke a nail” even if they are fully aware of why that impacts my ability to work), but with the added strength from the artificial nail I can reliably use a computer. The nail takes up the primary impact and spreads/dissipates the forces so that one small section of skin isn’t taking the whole impact. It does not separate my fingers, nor does it have to grip/apply pressure to the skin of my fingers or hands. I use the lowest cost form (SNS), and the yearly cost is equivalent to the cost of a yearly licence for Dragon Naturally Speaking, but nails are far more effective than speech to text is for me. For many reasons speech to text just doesn’t fit my needs (I have tested it) - including that it would drop my productivity to about 10% of what it is now which would destroy my ability to work as a senior software engineer in the open market.

Artificial nails as orthosis completely restores my ability to use a computer that was otherwise destroyed by the nerve damage. It is a hugely successful disability support, and fulfills a disability need that is not catered for by the disability/medical market. It is a poster-child for the type of innovation in supports that the NDIS was intended to encourage and foster. I have participated in a video interview with The Growing Space regarding it as a support intended to be used to help educate NDIA Planners and LACs in the type of innovation, out-of-the-box thinking, and success in managing the limitations due to disability that self-management and the NDIS itself makes possible.

The explanatory memorandum for Section 10.c has already stated that “cosmetics” is something that the government wants to add to the blacklist. If this happens, it is highly likely that access to the only orthotic that I can use will become banned due to ignorance of the fact that it can be an orthotic.

This is the danger in creating blacklists. Disability is extremely varied, and there are a lot of things that a person with disability may require to work around the limitations caused by

Their Impairments

their impairments that someone who does not know them and their circumstances would not think of as being a valid disability support. Adding these things to the blacklist results in denying people with disability access to the disability supports that they need through ignorance rather than direct intent.

Using APTOS as temporary rules:

APTOS was never designed as a set of rules that could be made legislation, and is unfit for this purpose. They should NOT be used as an interim measure as they are very vague/unclear and difficult to apply.

Classes of disability:

Given the very wide range of impairments that a person with disability can have, and the resulting extremely diverse range of supports needed, lumping people into “classes” of disability runs an extreme risk of excluding access to supports that the participant needs due to the combination of their impairments where those supports are outside of the general class that they have been assigned to.

This sounds very much like a return of the “personas” that the NDIA were proposing to use for calculating supports with the Independent Assessments debacle. They were shown then to be trivializing support needs and had a complete lack of comprehension of the way that disability impacts people’s support needs. For example, one persona was for a 17 year old girl who had significant difficulty understanding/interpreting what was being said, but was judged not to need community supports - the result of which would be that they would not have the ability to recognise a dangerous situation developing until it was too late, and hence would be extremely vulnerable to date rape. Someone with that disability required community support to help them stay safe in the community, but the NDIA didn’t recognise/understand this fact.

I can also see this being used to define a class such as “needs more than 8 hours per day of support” then having access to support defined as “must be 1:3”. This absolutely violates the UN Convention on the rights of person’s with disabilities Article 19.a) which states that people with disabilities must “not be obliged to live in a particular living arrangement” to have access to the supports that they need. 1:3 support levels means that the participant either:

has to move into a shared living environment, OR
has to go without the support that they need for 16 hours every day, with no-one on the premises during those times who can respond to an emergency situation. This is a life-threatening situation that has already resulted in the preventable deaths of participants (the one I know of lived alone but had recently had their support levels cut to 1:3, during the day when they had no support available anymore their ventillator tube became blocked. With no support worker present to be able to respond to the alarm they suffocated to death, and were found dead several hours later when the next support worker arrived for their evening shift).

1:3 supports forces people with disability to move away from their family home, away from their partner and children, away from their local community, and puts them in a situation where they’re at a lot more risk of harm/abuse/neglect due to being isolated/removed from their community.

Registering providers won’t help with this - the Royal Commission proved that registration made no improvement to the safety or quality of supports provided, the deaths investigated during the Royal Commission all occurred due to neglect from registered providers. Registration does not keep people safe, people keep people safe - being embedded in

their community, having family nearby, friends who they regularly meet up with, etc. Forcing them to live in either little disability communities or group homes takes the person OUT of their community and away from their safeguards, allowing abuse and neglect to flourish due to the lack of any oversight.

It is common knowledge that the NDIS Quality & Safeguards Commission don’t act on complaints and mostly just tell the provider to “do better” if they do anything at all, to which the provider says “we will” then walks away laughing because there was no actual consequences and they just keep on providing the same appalling level of support that the complaint was about. Further, reporting abuse/assault to the police rarely gets any justice - many people with disability discover that they’re automatically considered to be an “unreliable witness” explicity due to their disability (disability discrimination in the justice system) so most crimes reported either get dropped without investigation/prosecution, or the perpetrator is “let off” with community service (without even recording a conviction that would show up in a police check in future to indicate that they are unsafe to use for disability support!). Forcing people to move away from their safeguards into situations that allow abuse to flourish is an appalling prospect - and it’s already happening.

Section 30: Revocation of participant status for failing to provide reports

Out of the half-a-dozen NDIS participants I have regular contact with, two of them were supposed to be contacted by the NDIA, but that contact failed due to:

The NDIA using an old phone number that had been replaced 3 years prior, and the new number WAS on the participant’s record
The NDIA supposedly tried to ring the participant on a Saturday morning, and when the call went unanswered (the participant’s phone didn’t report any missed calls, so their suspicion is that the NDIA dialed the wrong phone number) the planner considered that adequate “contact” with the participant to conduct a plan review without including them. The subsequent plan was sent to a support coordination company that the participant had ceased using 2 years prior, and had themselves notified the NDIA of the change on 3 separate occasions with their new support coordinator also notifying NDIA of the change on multiple occasions, so it was a few months before the participant realised that their plan had been illegally changed without them and $20k of recovery coach funding over 3 years had been arbitrarily removed from their plan without explanation (and recovery coach was the only mental health support they had for their mental health disability). Due to the delay in discovering that the plan had been replaced, it was not possible for the participant to lodge an S100 review of the plan. The NDIA insisted that a single unanswered phone call constituted “making contact with the participant”.

Given the failure of the NDIA to actually read the participant’s current details when trying to communicate with them, and given how regularly people with hearing difficulties report on social media that the NDIA were phoning them when there were explicit instructions on their file that communication must be in written form due to their inability to participate in phone conversations due to their disability, there MUST be some sort of safeguards to ensure that any request from the NDIA occurs WITH the participant and the participant able to acknowledge that the contact occurred. Otherwise there is extreme risk that the first that the participant knows that the NDIA had been asking for reports will be after they’ve had their access to the NDIS terminated due to lack of response to a request that they had no knowledge of as a result of the NDIA’s failure to properly communicate with the participant using current contact details and in a form that is accessible to the participant.

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The NDIA used to terminate plans if a participant didn’t show up for a review

This resulted in the death of David Harris in 2019 where his supports were abruptly cut off, without the NDIA notifying any of his family about the issue, and where he was found dead in his unit 2 months later. I am extremely concerned that this proposed clause of the legislation will cause further deaths as a result of the NDIA’s regular failure to use current contact details and failure to communicate in an accessible way.

Having the review right to review a decision to cancel NDIS access still means that the participant is left without supports for at least several months while the review takes place, and possibly for several years if it has to go to external review. There are a lot of participants for whom this loss of supports while trying to sort out the issue is life-threatening - and there is significant risk of having it happen due to the NDIA’s neglect to use current contact details and preferred communication methods.

Section 32B: New framework plans

Given that the rules for these have not yet been written and no co-design has occurred, it is too soon to be writing these into the legislation. The scope of these plans, how the funding is determined, and how “classes” of disability will be determined, are all undefined at this point in time.

There is also no legislated requirement that co-design actually happens when creating these rules.

This proposal as it currently stands is perfectly compatible with the rules being created to implement exactly the independent assessment and calculated funding algorithm that was proposed by the Liberal party 3 years ago. Whether that is what is intended or not, the fact remains that these changes would permit the government of the day to implement the Independent Assessment process that the disability community strongly rejected.

No activity has actually occurred as yet to give any sense of trust in the current government. The promised co-design has not occurred, the presentations made by DSS regarding the changes and them answering obviously faked/pre-prepared questions instead of those actually being asked (the questions wouldn’t have fit in the question box, and the presenters had pre-written answers that they read word for word from their notes!), and there is evidence on the NDIS website that the NDIS Review recommendations had in fact already been decided by April 20233 with the NDIA spending the time between then and when the review report was released investigating how best to manipulate the narrative so that people accepted the loss of their human rights that would result from the recommendations. Given those facts, I have no faith that the government will not abuse the powers that are being granted with the substantial modifications to Section 32 of the NDIS Act.

Without seeing the rules, the scope of this change is appallingly broad and ill defined.

Section 32E to 32K: Reasonable and necessary budgets

I work as a senior software engineer, and have spent more than a decade working on systems that calculated the best way to allocate planes to flight schedules and roster staff for those flights, taking into account changing timezones, legal limits on flying, fatigue buildup from sleeping in ports that

have a significantly different timezone to where they came from, etc. That system was hugely complex, taking a huge amount of development effort and still could not fit all corner cases/etc.

Trying to write an algorithm that properly takes into account the combination of multiple disabilities and overlapping support needs that is the reality of disability for most people is far more complex again. From a professional stand-point, I don’t believe it is possible to properly account for the overlap of multiple disabilities and the way that the same impairment in different people can result in vastly different support needs in any form of calculated algorithm. Disability needs are too diverse, particularly when multiple disabilities intersect and interact with each other, to classify that in an algorithm without missing a ton of corner cases.

If a participant falls into a missed corner case, the most likely result will be lacking the support that they need due to their disability as a result of their support needs not being taken into account by the algorithm.

This I believe is why the NDIA ended up doing line-by-line supports - trying to generate a “reasonable & necessary budget” is highly likely to result in inadequate funding for a lot of participants. It’s also likely to result in too much funding for some participants on the basis that it is averaged/aggregated based on “common” characteristics. It takes the NDIS away from providing “individualised” supports, instead providing some aggregate average amount of funding, which goes against the original principles of the NDIS.

This is potentially taking us back to the type of block funding that used to be provided before the NDIS and that the disability community fought so hard to move away from, and has huge potential of significant harm due to inadequate supports being calculated. To be able to cover corner cases, those cases need to be known by the developers - and how are they to know every genetic disability that may only affect 6 people in the whole country? Or the variability in support needs for the same condition? For example, I have the autoimmune condition Sjogren’s. About 40% of people with Sjogren’s have neurological involvement (with multiple different types of neurological involvement possible), about 25% have permanent lung damage, about 5% have permanent kidney damage - how can an algorithm predict the support level needed for someone with Sjogren’s when the supports that someone with Sjogren’s with nerve damage can be hugely different to those needed by someone with Sjogren’s without nerve damage, or with Sjogren’s with both nerve damage and lung damage, or with Sjogren’s causing a different type of nerve damage? This applies to conditions like Autism too - there is a huge variability in how autism manifests that means that different participants diagnosed with autism at the same “level” can have wildly different support and therapy needs.

Section 32H: Requirement that supports be provided by a specified person

This is a really broad statement, with no limitations on when this power can be used. This means that the NDIA can essentially force a participant to use a particular support provider regardless of the participant’s past experiences with that provider, and with no way to be able to challenge or review that requirement. This is a fundemental violation of human rights, and with no limits on its use it is open to being abused by the NDIA.

Participants have already experienced situations where NDIA delegates have threatened that if they didn’t remove their request for review the delegate would make their entire plan agency managed - knowing very well that there were no registered providers in the participant’s area that could provide support, then actually carried out that threat in their S100 review result. The only reason for

Section 32L: Assessments

While the NDIS Review recommended assessments, they ALSO recommended that the participant be provided a draft copy of the assessment to check for accuracy/make sure it was complete before the assessment was finalised. The proposed legislation changes do not reflect this recommendation, and in fact:

provides no right for the participant to receive a copy of the assessment that their entire funding budget will be based on
provides no right for review/replacement of an inaccurate/faulty assessment

This is an appalling denial of procedural fairness, and MUST NOT proceed without ensuring that the participant has the right to have their funding allocated based on an accurate/fair assessment of their disability needs.

The right to receive a copy of their assessment, and to be able to request a replacement assessment/refute an inaccurate one and have the inaccurate one removed from their records is an essential right and safeguard that must be written into the legislation itself (not left to rules that can be changed by the minister at any time).

The lack of these rights were the PRIMARY reason I was opposed to the original proposal of Independent Assessments, even before the details of how the NDIA were going to be using inappropriate assessment tools was revealed. I will ALWAYS oppose any form of assessment where there are no safeguards provided for dealing with a faulty/biased/inaccurate assessment.

My life experience is that roughly 20% of all medical/allied health professionals I’ve met have walked into the room with a preformed prejudice of what they think is happening, refused to listen to any evidence that contradicts their prejudice, discarded test results that disagreed with their pre-formed opinion, and made ridiculous diagnosis that were easy/trivial to disprove based on their prejudice rather than the facts. In other words, they treated their prejudice rather than their patient. If people with disability are being assessed on a regular basis over their entire lifetime, they are guaranteed to meet someone who does not provide a fair assessment at least once in their life. Especially when other government programs requiring assessments (such as workcover) have a history of preferring to find/use medical professionals who will downplay impairments & outright lie in their reports to get out of providing funding that the person involved was actually entitled to receive.

**Basing funding on an incomplete/unfair assessment can have life-threatening consequences for the participant due to being denied the level of support that they were both entitled to receive and was actually required for them to live.

Section 32L & 34.1.(aa): Impairments in respect of which the participant meets the disability requirements

This clause is impossible to accurately implement, for the following reasons:

It is impossible for an assessor or an NDIA delegate to be familiar enough with every possible impairment/condition to be able to accurately identify if a particular support need is attributable to those impairments. My own example is that it took me 5 years, an AAT case, and then having to re-prove every fact already proven at the AAT for the NDIA to finally understand that the nerve damage I have is part of the condition for which I gained access, not a second separate/isolated impairment. They were approving the condition - then trying to slice that condition in half and discard the most disabling portion, not understanding that when saying “we only approved the Sjogren’s, we didn’t approve the neuropathy” they were in effect saying “we only approved the Sjogren’s, we didn’t approve the Sjogren’s” because the nerve damage is an integral part of Sjogren’s. That’s for a relatively common autoimmune condition - the huge number of genetic conditions due to gene abnormalities make knowing what is and is not attributable to every impairment an impossible task.
It is frequently impossible to definitively attribute a particular support need to a specific impairment. For example, if a participant has an autoimmune condition and severe depression with only having the autoimmune condition registered as “meeting access requirements”, and they suffer extreme fatigue requiring a wheelchair to access the community, is the wheelchair an NDIS Support since the fatigue may be attributable to the autoimmune condition, or is it excluded because it may be due to the depression and the depression was not judged as meeting access requirements? The medical world cannot test/discover exactly which impairment or in fact to what degree each impairment is contributing to that fatigue (as both may be involved) - how is an NDIA delegate supposed to accurately make that distinction so that they do not deny participants the supports that actually were attributable to their qualifying impairment?
It ignores the fact that when multiple impairments occur together, their combined effects can be far worse than the same level of impairment would be on its own. A good example for this is the AAT case “Mazy and National Disability Insurance Agency [2018]“4, where the participant was blind, had an intellectual disability, and had type 1 diabetes so they were insulin dependent. The NDIA had denied the nursing assistance the participant required multiple times per day to check their sugar levels and administer the correct dose of insulin on the basis that diabetes was a health condition and didn’t meet the NDIS access requirements. However, if the participant had not been both blind and had an intellectual disability, they would have been able to be taught how to measure their blood sugars and adjust their insulin dose/administer it themselves, so the need for nursing assistance was directly attributable to the fact that their combined disabilities meant that they were unable to manage their diabetes themselves. The lack of the nursing support for this participant would be fatal, but the new clause regarding only providing supports for the impairments that themselves meet access requirements would make it legal to refuse the nursing support required, and to treat the payment of any nursing support as violating section 46 by spending NDIS funds on a support that is judged as not an NDIS support due to it being for an impairment that was not listed as meeting access requirements. Support needs can arise**

from the combination of multiple impairments that would not normally have been

required for those impairments on their own, and by restricting support to only the specific impairment that qualified for NDIS supports it ignores that this impairment may in fact substantially impact the support needs from other impairments that on their own would not qualify for access.

Carving a participant into “supported” and “unsupported” impairments is NOT a “whole of person” approach, since parts of the person are being discarded/ignored.

The original NDIS Act treated the term “disability” as the combined effect of all of the participant’s impairments. Access was a “bar” to be met, but after meeting that bar the whole person was supposed to be taken into account and supported.

This change to “supported” vs “unsupported” disability based on which impairments on their own meet access requirements demonstrates a lack of understanding of the reality of disability - it’s not a black-and-white yes-or-no condition. Treating it as such means not providing the disability support that the NDIS was intended to provide.

Further, most participants do not know which of their impairments the NDIA actually recorded for them, and as such have never been given the opportunity to request a review of the decision to exclude of some of their impairments. The NDIA does not tell the participant what they met access for, only that they have met access. Often the NDIA actually ceased evaluating whether impairments met access after the first one that qualified - so for a significant proportion of participants some of the impairments that they applied for access for have never actually been assessed against the NDIS access critereon and added to their NDIS records. This means that changing the rules now to only include those impairments that were assessed as meeting the requirements will exclude some impairments that participants applied for access for and believed should have met the requirements but were completely unaware that the NDIA hadn’t actually assessed them, or had excluded them due to a misunderstanding of what the impairment was/entailed.

There is also no legislated way to have additional impairments added to a participant’s records. So in cases like above where the NDIA did not actually assess all impairments that the participant applied for access to the NDIS for, there isn’t a clear path for the participant to apply again to the NDIA to get them to add the rest of their impairments.

Section 46: (dealing with the acquittal of NDIS amounts) has not been complied with in relation to the plan or any of the participant’s previous plans

There are a multitude of issues with this section, including that a single “error” 6 years ago would be enough to remove self-management now - and there are no review rights regarding the decision that a past expense was an “error”.

There is no requirement on the NDIA to actually request evidence as to why the participant believed the support to be a valid disability support.
There is no requirement on the NDIA to even speak to the participant and notify them that they believe the participant has made a faulty claim.
There is no review rights for reassessing the decision that a past claim was invalid.
There is no specification on the severity of the expense, and whether the issue was deliberate fraud or a genuine mistake/misunderstanding.

Section Heading

There is no training available to the participant to know the legislation in depth, in order to allow them to make “better” decisions.
NDIA delegates and LACs regularly give participants inaccurate advice on what is a valid disability expense.
The NDIS National Call Centre regularly gives participants inaccurate advice on what is a valid disability expense.

If NDIA staff are not trained adequately to understand the NDIS legislation, what hope do participants have given they get zero training? Making it so that a single $5 error over multiple years of plans can see them judged as “too risky” to self-manage is an excessive use of legislative powers.

I have heard of multiple participants being told that a claim was invalid, then on explaining the situation/providing the evidence to the planner, the planner stated that “oh, ok, that was valid”. Having people have the right to self or plan management taken away because a random planner who doesn’t know what the participant’s disability actually is, hasn’t read any of their disability evidence, hasn’t spoken with the participant at all, but has flagged a payment as “not valid for their disability” due to their ignorance of the participant’s disability and how the support assisted them, is a very real danger. It’s a fear that I live with, as the support for artificial nails as orthosis to allow me to type is one that is highly likely to be incorrectly flagged as invalid by a random NDIA delegate flipping through my file without actually reading the evidence. While I can provide all of the supporting evidence including the letter from the AAT case where the NDIA stated in writing that they agreed that it was a valid NDIS support that was fully supported by the evidence provided and they would fund it in full, the fact is that there is no requirement for the NDIA to even give me the chance to present that evidence, or to permit me to challenge the decision that it was not “in line with my plan” after that decision has been made. I could challenge the decision to remove self-management, but not the decision about whether the support was a valid support despite having in writing from the NDIA that it was indeed a valid disability support that they’d fund in full.

This also kills innovation in disability supports - because any innovation puts the participant at severe risk of undesirable consequences that were not justified by the participant’s actions due to a random NDIA delegate misunderstanding the expense and miscategorising it as “not meeting section 46”.

This power is far too broad, with no safeguards for participants against its misuse.

Summary

The changes proposed grant extremely broad powers for the government to change the rules for the NDIS at any time without the need for parliamentary debate on those changes, with no safeguards for participants regarding the use of those powers and no requirement for the promised co-design to actually occur when implementing those rules. The powers granted include being able to alter the conditions required for meeting access which are fundamental to the scheme and ought to be guaranteed in the NDIS Act itself rather than in delegated instruments. The proposed list of conditions for being a valid “NDIS Support” excludes a huge number of valid disability supports such as alternative assistive communication devices and housing modifications due to taking a few phrases out of context from the UN CRPD, which will hugely impact the lives of people with disability. There is substantial risk that the proposed blacklist of supports will inadvertently deny people with disability access to supports that they need through ignorance rather than direct intent.

Replacing “primary and secondary” disabilities with “supported and unsupported” disabilities is unworkable, because it is not possible for any NDIA delegate or any assessor to be familiar with every condition and impairment that may cause disability to be able to determine which impairment to attribute a particular support need to. Given the medical community cannot make that distinction in the vast majority of cases, NDIA staff are never going to be able to accurately make that distinction - and making an inaccurate decision can have severe impacts on the participant’s life due to lack of a support that should have been available to them. Disability is not black-and-white, multiple impairments usually interact with each other making the impact of each more severe, and trying to carve the participant into “supported” and “unsupported” impairments to determine whether a support need is due to a “supported” impairment is not possible for most cases of overlapping impairments.

Overall - the proposed changes are half-baked, demonstrating the complete lack of co-design to this point, and should not go ahead in their current form. Co-design needs to occur first, and the rules that these changes are intended to allow together with the method of calculating a budget and the method for doing assessments must be designed before legislating their use.

Further, there must be review rights granted to participants regarding many of the proposed changes, including the right to receive a copy of any assessment done, the right to challenge an inaccurate assessment/request a replacement assessment, and the right to both present evidence and request a review for any decision that the participant “has not spent in accordance with section 46”. Only having the ability to review the entire plan, without the ability to review the individual decisions made that added up to the creation of the plan, is inadequate.