Attn. Legislative Affairs Committee - National Disability Insurance Scheme

(NDIS) Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Who Am I

I am GS Lakes, a writer, and (disability) activist. I have lived experience of multiple disabilities, and also belong to multiple other groups at disadvantage in this society.

I am writing here based on my personal experience as an NDIS participant, while also relaying the experiences of other participants that have been shared with me and other disabled people.

The basis of my statements are from this and publicly reported information, such as the contents of the bill.

Why I Am Writing a Submission

I am very concerned at the text of this bill, and how it has been spun as ‘saving’ the NDIS (hereafter the Scheme) and disabled people’s ‘choice and control’ (ala agency/autonomy) over their care when it does the exact opposite.

This bill will hollow out the good the Scheme does, limit disabled people’s ‘choice and control’ over their care, and directly cause mass harm, further disablement, even foreseeably death, to large groups of disabled people.

It will act as a brake on the economy also, removing much of the Keynesian-style economic stimulus that the NDIS provides by spending on health, and, particularly, the documented $2.25 economic multiplier for each dollar spent under the Scheme [1]. This multiplier comes from enabling greater workplace participation and better access to the community for disabled people, which this bill will greatly curtail.

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It is also greatly concerning that the NDIA (hereafter the Agency) now gets to unilaterally decide the Rules of the Scheme, outside of the influence and review of Parliament, the eye of the public, and the checks and balances of the legal system.

Particularly, that they get to decide who and what is covered by the Scheme arbitrarily, removing whomever they like from all available disability care, by implementing their current harmful and unlawful policies which have been rejected time and time again at the Administrative Appeals Tribunal (hereafter the AAT) and the Federal Court of Australian (hereafter the FCA) as being inconsistent with expert medical advice and existing law.

This is a direct attack on the human rights of disabled people to timely and equitable health care, as well as timely and equal access to justice. Human rights granted under Australia’s atification of the United Nations Convention on the Rights of People with Disabilities (hereafter the UN CRPD) - accordingly, this bill is in direct conflict with existing law.

It is also worrisome that this bill grants such sweeping powers to an Agency that’s already acted time and time again with considerable disdain for not only human rights, but governmental Model Litigant Obligations, direct court orders, and established legal precedent. This is a dangerous outcome for both the civil rights landscape and the rule of law in general in Australia.

It is my view that this bill should be rejected, and Labor should engage in actual co-design and consultation with the disabled community before submitting any replacement. (I have a proposal for a replacement disability model at the end of this submission.)

Discussion

Misleading the public

The description of this bill versus the directly contradictory text of the bill is the first misstep here.

People who are familiar with reading the law can interpret what this bill means, and what the proposed changes will do in practice.

This, like many recent moves by Labor is a disappointing trend towards deceit and spin, that cannot help but backfire electorally.

It is disappointing in the extreme that Labour has fallen so far from the party that gave us Medicare, to this.

Lack of consultation

Labor has frequently touted that they consulted widely before creating this bill. However, if they did, it was not with the disabled community themselves. If anything it seems to have been with the big providers, judging by how much this bill (and particularly mandatory registration) stands to benefit them. (See below.)

If Labor actually had wished to engage in co-design as stated, it should have done so with disabled people before they passed legislation to enable their vision.

Reviews led by able-bodied-minded people with a known significant investment (literally) in the Scheme as a money-making concern is a clear conflict of interest, and does not count as adequate consultation, let alone co-design. Especially when this review was not at all representative or inclusive of the findings of the Disability Royal Commission.

Running ‘town halls’ after this legislation was introduced, where only the questions the Government deigns to be heard can be raised? That’s not co-design either.

Mandatory registration

A significant introduction in this bill is the mandatory registration of support providers. This has attracted a lot of controversy in the press, which may have detracted from noticing other, far worse issues with this bill.

To sum up what’s been discussed elsewhere?

Mandatory registration will increase costs, makes an already thin market non-existent in rural areas, endangers participants by removing their existing support network, and removes choice and control from participants.

All it will achieve is funnelling even more money to the big providers, which is presumably the intent of this bill, given the number of people known to be associated with these big providers on the Review board which created this bill.

Mandatory registration is said to be about guaranteeing participant safety, but registration provides no safety at all.

All the abuses in the news have been from already registered providers. Who were permitted to be abusive by multiple government departments sitting on their hands, ignoring continued

complaints from disabled people and their families

Given that many providers of services like cleaners, gardeners, as well as many suppliers of everyday consumables (particularly cheaper online or overseas ones) will foreseeably not be bothered to register with a government department that has made registration quite onerous? (Indeed, many participants have been told this already by these existing providers.)

This removes the existing support networks for many participants, taking these providers off the market, so to speak, in areas where there were already no or few alternatives - the ‘thin market’ often mentioned in NDIS policy.

Which will cost disabled people their support, if not the quality of that support, too. And, it will cost taxpayers a lot more, too.

As limiting participant choices to just the big registered providers comes with a significant jump in price, for a similar significant drop in quality.

Reducing competition always does this, and this is obvious to anyone with even the most basic knowledge of economics around monopolies.

Which, when you ask who benefits from this? It’s certainly not disabled people, and it’s not the taxpayer.

It’s just the big providers, who are of course mates with the people in the Review that suggested this. (Bonyhardy’s background is especially egregious this way.)

Human rights abuse potential

The issues continue with the new powers granted to the NDIS’s CEO and through them, the Agency.

The granted power to the CEO to remove participants at any time from the scheme is especially concerning, given that the Agency has a well-established track record of mixing up participants with others, doing its best to delay justice to participants, slashing plans arbitrarily, ignoring supplied medical evidence, supplying advice that is dangerously unqualified, not following Model Litigant Obligations, and indeed, often not following court orders at all. [5,6,7] All practices which have continued unabated under Labor.

While Labor may claim that this is a benign grant, a power like this is only granted if the intent is to use it, and this intent seems especially sinister in the hands of an agency that has hurt disabled people at scale.

Particularly so when the NDIS is now the only means of obtaining disability support in Australia, with state governments having slashed or cut their own disability programs due to the existence of the NDIS. No promise of increased state funding in the future makes up for the fact that this power will exist immediately, with direct and immediate consequences to the lives and health of disabled people under the Scheme.

Continuing this theme of removing access to disability support is the new power of the CEO to demand an assessment be done by a participant within 28 days or lose all their support funding. This harks back to the bad old days of Independent Expert Reviews and so-called ‘independent’ assessments [7] under the previous government, which Labor rightfully derided. Enshrining this power in law is hypocrisy at its finest, and a mechanism that can and will only be used abusively against disabled people.

Even more concerning is the granted power to the CEO to remove entire classes of disability from support by the Scheme. Given this has already been done (if presently illegally) for people with ADHD, and, reportedly, cerebral palsy, and with the continued government and media beat up on participants with autism and others with psychosocial disability as being ‘costly to the scheme’?

This grant of powers demonstrates a clear intent to start removing numerous classes of disability at just the CEO’s discretion for the sake of ‘cost cutting’.

Given the absence now of other health systems to provide disability support, and a Medicare system that cannot handle existing acute mental health care? This will lead to the defunding of critical disability support - that is to say, health care - for these groups entirely.

This is a violation of human rights granted under the UN CRPD, tantamount to eugenics, and, once again, not a power that should be trusted to an agency that has demonstrated intent and capacity to harm disabled people at scale already.

Buried in the bill is a change that limits assistive technology funding to just mobility aids. This will cause mass harm to people with disabilities who require assistive technology to maintain their health, even their very lives, such as oxygen concentrators or active cooling.

That this obvious need has been overlooked in the framing of this bill speaks to how little actual consultation has occurred with the disabled community - as well as the cynical nature of the authors.

Related also is the creation of a category of supports called ‘NDIS supports’, removing and replacing the previously broad inclusive category of ‘reasonable and necessary’ supports in the existing NDIS act as the default.

In “new framework” plans (which the CEO may force participants on to at any time), this new categorisation means that there can no longer be room for disabled people’s ‘choice and control’ over their disability-related supports - only what is explicitly approved by the Scheme’s implementers in advance. As like with present plans, the Agency will do its best to minimise support funding, and support flexibility.

Nor are there now legal grounds to challenge this arbitrary designation of supports by the Agency into pre-designated buckets of bureaucratically-defined ‘appropriate’ supports for an associated diagnosis. This ignores (as the Agency is wont to do currently, as numerous AAT cases testify to) that people can have multiple disabilities, and that these disabilities are multiplicative sometimes, not simply additive.

If you have a person with both a cognitive disability and a physical disability, say? The supports needed for such a person are not the same if you assess the support needs of people with just one of these disabilities in isolation.

For example, funding manual wheelchairs for people with just lower limb issues makes sense in isolation, but if someone has a muscular wasting or motor neuron related impairment also, what may be needed instead is a wheelchair with modified controls, say, that can be driven by the chin or tongue. Neither would be funded in isolation under either proposed individual ‘NDIS support’ category.

This strict predetermination also ignores and limits the dominant source of innovation in disability care - the creation and adaptation of technology by disabled people to meet their own specific circumstances.

Only permitting bureaucrats without lived experience of disability to decide what supports can be funded for a particular diagnosis, disability, or impairment is not only insultingly paternalistic, not only ineffective at increasing community participation, but is also cost ineffective.

As a cheaper support may only be identifiable by a disabled person - and endorsed by their medical team - than what the combined use of more typical supports may grant. Especially if disabled people and their medical teams can only get access to the limited supports of under each diagnosis-related ‘class’ of supports this bill proposes NDIS-funded supports be limited to - they may not be able to access appropriate supports at all this way.

A sign also that this legislation isn’t genuinely about cost savings is the particular exclusion of funding white goods. It’s well known in disability circles that the right white goods are massive cost savers compared to use of support work to achieve the same outcome.

Yet the Agency time and time again fights this at AAT, only to have to be told, again and again, that this is not only a reasonable disability support, but a cost effective one, too

Again, this makes one question who this bill benefits, since it’s not the taxpayer or disabled people here.

Competence and fitness to serve, duty of care, and safety risk posed by the NDIA

There are serious concerns to be addressed about the fitness and safety of the NDIA as the recipient of these new powers, and increased control over participants’ lives.

Given the Agency has bungled the deployment of their new PACE system, has a reputed backlog of 6 months for answering emails, has a call centre more overwhelmed than Centrelink’s (both issues largely unchanged since the previous government [7]), and routinely (as reported by Greens senator Jordan Steele-John [6]) has medically-unqualified Local Area Coordinators (hereafter LACs) dispensing dangerous advice to disabled people while preventing access to medical expert endorsed care?

There is very limited trust amongst the disabled community and their families and carers in the Agency’s capability to competently deliver reform without causing even more damage to people’s lives.

Of related concern is the reported collaboration in the news between state Public Trustees, the Agency, and big (notably registered) providers to trap and gag vulnerable participants for the seeming purpose of draining their funds in big (notably registered) group homes [3,4].

Not only is this a return to the Bad Old Days of institutionalisation, as reported on extensively in the Disability Royal Commission as a horrid violation of human rights? This is gross corruption, malfeasance, and a direct violation of the law on too many fronts to name.

An Agency that permits its staff, its representatives, and associated providers (whom it’s meant to monitor for quality and safety) to perform such abuses, and get away with it for years is not fit to deliver disability services to anyone - let alone to have even more power over disabled people and their care, as this bill grants.

Debt recovery

Given the character of the NDIA and the big providers are well established in media reporting as being untrustworthy, it’s especially galling that this bill spends so much time on introducing heavy-handed debt recovery mechanisms that targets participants.

If anyone should be targeted, it should be providers for taking advantage of disabled people. However, this bill puts the onus for such fraud on participants, who are the least empowered to protect themselves.

And if the Agency unilaterally deems a participant to have been the victim of fraud? They lose the right to manage their disability care [9], and are forced onto Agency management. Something the Agency is already renowned amongst participants as being quick to remove for the smallest of reasons. (And returned just as inevitably - as 97% of judgments go against the Agency at the AAT.)

This collective punishment and autonomy-removal of disabled people for the crimes of others is yet another human rights abuse, and shows that the authors of this bill do not have the best interests of disabled people in mind.

Rather, their seeming intent is to use disabled people to take the brunt of their cost-cutting agenda, and seemingly? Make them a revenue stream, when General Interest Charges (interest on debts) is inevitably applied to all debts owed to the Commonwealth.

Where To From Here - A Suggested Replacement

I wrote an essay for an advocacy organisation last year on what the future should hold for disability care in Australia.

While sadly didn’t make it to publication, I’ll repeat it here, updated for the context of this bill.

–

The National Disability Insurance Scheme should not exist. Should never have existed. As its very existence is an ableist, disablist, eugenicist invention.

How so? Because it creates a two-speed, segregated system for people arbitrarily deemed ‘disabled enough’, with a constrained budget, and vastly limited care.

As when you single out disabled people for objectively worse health care - and less control over that care - than their temporarily able-body-minded peers? That’s anti-disabled people (ableist and disablist), and inherently eugencist, because you are deliberately foreshortening the lives of disabled people by restricting their health care. As deciding in advance a budget for that care inherently and inevitably does. (Something very much a core part of this bill.)

We know from decades of public health literature on the topic that insurance schemes are the very worst way to deliver health care. And we only need look to the USA to see a very clear example - how their almost entirely 100% insurance-scheme-based health system delivers health care results that are the worst in the world for almost the entirety of their populace.

As the very idea of an insurance scheme is to delay and deny health care - and the NDIS lives up to this key and very intentional design principle, in its actions, in its policies, in the very idea of having to prove yourself ‘disabled enough’ to earn access to what is now effectively the only disability health care system in town. In the predetermined budgets.

The very concept of a budget for health care decided by a bureaucrat makes a mockery of the idea of choice and control - a denial of consent, agency and autonomy, in other words. Because if you can’t afford the care you need, how can you say you had any choice in or control over what care you get?

(Which is a violation of Australia’s treaty obligations under the UN CRPD, by the way, but illegality has never stopped an Australian government agency for long from doing what they want to a vulnerable minority for political purposes, has it? It certainly doesn’t stop the Agency, as I’ve noted above.)

If you listen to disabled people’s experiences with the NDIS, you hear the same stories play out, over and over again. Some bureaucrat didn’t even read, let alone heed very expensive medical reporting - funded at the expense of the disabled person, of course, creating yet another accessibility barrier.

And then said bureaucrat decided (with the help of an algorithm designed by the same people who made Robodebt, apparently) to significantly slash all the funding for the disability care a disabled person can get. No matter what the actual need is, no matter what the situation might be.

Or just be denied access to the Scheme in the first place. Which, given the existence of the NDIS led to (foreseeably and intentionally) the defunding of all other disability care systems in Australia? Leads to no care at all.

And then the disabled person, their family, their carers, their support team, has to go through a multi-year court process to beg for any chance to get the health care they need. Pitting people who aren’t legally trained against high-powered government lawyers. All while the health of the disabled person suffers, not just from denied care, but from the inherent stress of facing a David

And Goliath battle against the very system that’s meant to help them. Against the government that’s meant to protect them.

And now, with the AAT to be replaced with the Administrative Review Tribunal (hereafter ART), a body now allowed to charge applicants for every aspect of having a case seen? (Clearly with the intent to start charging, or again, why else grant this power?)

Even the slim chance at some justice and health care is being removed. Put behind yet another paywall.

Sadly, there’s historical precedent for this process, a sad, and not-often-talked about story that’s playing out again right here and now.

It turns out that the very idea of a work capacity assessment - a functional capacity assessment, in disability system terminology - was first dreamed up and used by a very nasty group of people in 1930s Germany [2]. Who deemed themselves superior to everyone else. Anyone they deemed inferior, well, they should just be left to die. And sometimes they accelerated that process directly.

And we see this same process at work in Centrelink, in the NDIS. Today. If your reporting is not ‘good enough’, you’re deemed not ‘worthy’ of care, of basic life support - and we see, time and time again, the criteria for who is ‘worthy’ gets narrower and narrower. Then you don’t get that care.

We see this bill grants the Agency even more power to decide arbitrarily in this way.

And as someone who’s a member of multiple groups that were systematically targeted for elimination by these kinds of processes in 1930s Germany - and even earlier in the US - the growing use of these processes again concerns me greatly!

Oh, we have lots of fancy words to justify this. “Sustainability”, yes. “The thin market”, yes. “Overdiagnosis”, even. “The responsibility of the medical system, not the disability system”. even “the (cost) burden of disability care”, from the more openly eugenicist sources in the media and politics. Language very similar to the “useless eaters” rhetoric used in 1930s Germany.

Without acknowledging that these issues are all constructed by this system, to justify itself, to justify its cruelty.

But in the end, it comes down to this core supremacist concept - if you’re not productive ‘enough’ (and many disabled people work, mind!) and some bureaucrat who’s never even met you deems you unworthy? You get to suffer, and die a horrible, early, easily-preventable death.

And that’s where we are now. A system that is designed to lead to the early deaths of disabled people. And I’d say deliberately so, since the function of this system has these supremacist

concepts at its core. Being dreamt up by an investment banker who wanted to find a way to profit off of disabled people, inevitably at their expense.

So how do we fix this, how do we turn this around? What has motivated this system to end up this way, and what is it going to take?

Well, a government that’s already delivered their pre-decided solution, who’s already committed to accelerate this process - well, that’s not going to lead to any positive change.

So I know saying this is futile. But, maybe, just maybe, these ideas might reach others who are willing to add some grit to the cogs. To resist the decline of this system into one that openly extinguishes the lives of disabled people.

Here’s what we could have had. If history had played out differently, if people who deemed themselves superior to disabled people hadn’t designed this system, hadn’t created yet another opportunity to enrich their mates via rampant privatisation.

An extension of Medicare, with its universal service guarantee, to cover all disability health care services.

A truly public system. So that those who need disability services can do so just on medical referral, as anyone temporarily-able-bodied-minded now can do (theoretically, at least) when accessing any other form of health care.

(Because why should disability care be treated differently to any other form of health status? The very notion is a supremacist one, one contrary to the UN CRPD’s grant of equal right to health care for disabled people. And one that ignores the reality that any of us can acquire a disability at any time, and will inevitably do so, as we age.)

If you need an assistive technology, capital improvement, or other service or product outside of the directly medical? Your medical team writes a prescription, and you get that provided (‘filled’ like any other script) by a provider. As exists elsewhere, in places with less horrid health care systems.

And because this is a public health service? The government can use its buyer-side monopoly to keep costs low. (As we do already with pharmaceuticals under the PBS, with the existing cost controls we use there.)

We can control fraud the same way we do so under Medicare - with statistical measures and education, not punitive schemes designed to intimidate disabled people into not using services at all. (And particularly not punitive mechanisms like slamming people onto ‘agency management’ at the drop of a hat, removing any consent, any agency and autonomy the disabled people might have had. As is reported to be a very common outcome of complaining

about funding, of spending all of a too-small budget. A systematic measure to control costs at the high level, not a punitive one that hurts the people the system is meant to serve.)

Providers get paid a fair at-cost rate, and as we’ve seen historically under Medicare when these are indexed correctly according to inflation and prevailing economic conditions? It’s perfectly possible for health care providers to live a very comfortable life and still deliver quality health outcomes at scale under this model.

(It just doesn’t make for the concentration of wealth in the hands of the few already-rich corporate health care providers, though, which is why governments walk away from known-cheaper-across-the-whole-of-society public health systems towards private health care. Which enriches their donors/mates at the expense of the people who generate that wealth, at the expense of those whom society is meant to protect.)

Even better, at reducing the cost of providing equitable free health care across an entire society? Is that there is the possibility for increased emphasis on “early intervention” - what in public health circles is just called ‘preventive health care’. Say, public health campaigns that reduce disease burden in the population and hence acquired disability - that’s a well-studied, proven ‘cost control’ mechanism.

Like, say, not letting a known-incrementally-disabling airborne virus like COVID-19 rip throughout society unchecked, disabling further or just killing off the elderly, sick, disabled, and otherwise vulnerable, to the point where it’s the third leading cause of death now. Science says 5-30% of cases leaves people with Long COVID, an acquired disability that resembles the long-ignored and underfunded ME/CFS and other post-viral syndromes. If you want to decrease the ‘burden’ of disability on a societal level, cutting transmission would be a very good place to start. And if you listen to epidemiologists, not business councils, that just looks like N95/P2/KN95s being used in all public spaces/workplaces, with improved ventilation or HEPA-grade air filtration throughout. No lockdowns, just scientific common sense. We could eiminate COVID-19 if we did this worldwide. As we did accidentally with an influenza variant recently, deliberately did so with smallpox, and we nearly got there with polio, too.

As curative health care - palliative and disability care too - is more expensive, and cost is what the manufactured objection is to providing actually-adequate disability health care, right? But then, that does imply a universality of service, to actually achieve those outcomes.

We can’t continue to ignore large portions of the population, our underserved minority groups like First Nations people, the elderly, women, other gender minorities, LBGTIQA+ people in general, people living outside the cities, migrants, people in our prisons and detention centres, and other vulnerable minority groups.

So we need to restore Medicare to its truly-universal public health system best to achieve that. Which looks like:

• funding hospitals to meet all needs, not just filling the every-growing gaps of the private system

• reversing privatisation - which just adds an ever-growing 20+% profit margin to all costs. This in itself could meet the arbitrary 8% ‘growth target’ set by Labor!

• increasing permanent staff hiring and improve work conditions to increase retention and avoid the use of more expensive private/profit-driven agency labour

• provide free pathways to train in medical fields that are actually accessible to all people, not just the already-rich who can push themselves through medical schools designed to favour those with no other commitments or health issues

• extend services to communities whose needs are currently neglected, meeting all medical needs regardless of where someone lives, or who they are.

Including disabled people’s care in this new system gives disabled people what everyone else gets. Genuine choice and control in provider, and (more) timely service, just what everyone else should get. What we’re entitled to under law and international treaty.

As no one should have to leave the country to access the medical care they need, travel across the country, wait multiple years for that care, or pay out of pocket for it.

We used to do better, we can do better, so let’s do better again. Please.

References:

1. Luke Michael for Pro Bono Australia, “NDIS creates $52 billion economic boost”, published 2021, retrieved 16/05/2024 - hhttps://probonoaustralia.com.au/news/2021/11/ndis-creates-52-billion-economic-boost/
2. Thomas C. Weiss, “Nazis, Sterilization and Deaths of People with Disabilities”, published 2015, retrieved 16/05/2024 - hhttps://www.disabled-world.com/disability/sterilization.php
3. Amber Shultz for Crikey, “There has to be some form of accountability”, published 2021, trieved 16/05/2024 - hhttps://www.crikey.com.au/2021/09/22/guardianship-there-has-to-be-some-form-of-accou ntability/
4. Anne Connolly for the ABC, “Australians living under state control are testifying at the Disability Royal Commission. But gag laws mean you won’t see their faces”, published 2022, retrieved 16/05/2024 - hhttps://www.abc.net.au/news/2022-11-20/australia-guardianship-trustee-disability-royal-c ommission/101670046
5. Rick Morton for the Saturday Paper, “NDIA used the law to ‘exhaust’ participants’, published 2023, retrieved 16/05/2024 - hhttps://www.thesaturdaypaper.com.au/news/health/2023/10/28/exclusive-ndia-used-the-l aw-exhaust-participants
6. Jordan Steele-John, Greens senator, “NDIS address confusion with community access plans”, published 2024, retrieved 16/05/2024 - hhttps://www.youtube.com/watch?v=4Y93-Ze3mvA
7. Amber Schultz for Crikey, “No wonder trust is broken: everything that’s gone wrong with the NDIS”, published 2021, retrieved 16/05/2024 - htps://www.crikey.com.au/2021/07/22/everything-thats-gone-wrong-with-ndis/
8. Amber Schultz for Crikey, “How shonky providers are draining the accounts of people with disabilities”, published 2020, retrieved 16/05/2024 - thtps://www.crikey.com.au/2020/11/19/ndis-fraud-claims/
9. Evan Young and Nas Campanella for the ABC, “As new legislation looms, here’s the latest on the future of the NDIS”, published 2024, retrieved 16/05/2024 - ttps://www.abc.net.au/news/2024-03-27/bill-shorten-unveils-draft-ndis-legislation/10363 4350