The Capability and Culture of the NDIA
“No One Held Back and No One Left Behind?”
12th October 2022
Chair of Joint Standing Committee on the National Disability Insurance Scheme Care of The Committee Secretary. Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 By Email to: ndis.joint@aph.gov.au
Thank you for the opportunity to make a submission and comment at this time on the National Disability Insurance Scheme (NDIS). Please note: I am not a member of and have no affiliation with any political party. I have been a recipient of the Disability Support Pension since 1992.
The intent of this submission is not to delve into my personal disability issues. However, I do condemn the discrimination against and exclusion of any person in my age group, (being over 65) by the National Disability Insurance Agency (NDIA), of NDIS assistance and support.
It is, however, virtually impossible to write a submission like this and give examples, whilst being a person with disabilities, without disclosing certain personal details. I am trying to avoid providing personal information, not because I don’t want to, or because I am ashamed but because it is more important to deal with the principles of the matter rather than have a focus on my personal circumstance. I do not think such details need to be redacted necessarily.
When I write about The Commonwealth’s National Disability Insurance Scheme (NDIS) matters, including reference to ‘The Scheme’, I will be referring to the whole Scheme, its intent and purpose and values and its administration, regulation and laws, including the National Disability Insurance Agency.
The Commonwealth’s National Disability Insurance Scheme is the primary and relatively recently introduced means to support people, Australian citizens who require support for their disabilities. The NDIS has seemingly, deliberately been slowly introduced by the NDIA, such that those of us who are now over 65 years of age are excluded.
The Commonwealth has stated in the most simple of terms:
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“The National Disability Insurance Scheme or NDIS helps people under 65 with a disability to get care and supports.”
My submission is and I claim simply, albeit with some disgust, that the Commonwealth’s National Disability Insurance Scheme (NDIS) is manifestly, a grossly unfair and discriminatory arrangement and indeed it breaches any sane and reasonable notion of fairness, which must apply regardless of age across the whole of the populous of the citizens of The Commonwealth of Australia.
The capability of the NDIS has been artificially restricted and diminished in terms of justice by deliberately but illogically excluding people who are over 65 years of age from participating in The Scheme.
Disabilities impact and affect people of all ages, all ethnic backgrounds, all religious beliefs, all socio-economic levels or classes and through a wide range of significant and sometimes debilitating afflictions and causal factors. Apart from the age restriction built in to the NDIS, it would seem that other categories of potential discrimination have been avoided. At least I am not aware of any others.
The National Disability Insurance Scheme specifically discriminates against all those Australian citizens who happen to be, through absolutely no fault of their own, over the age of 65 years. This is a disgraceful travesty of justice. There is no equality in the National Disability Insurance Scheme; it is that simple. Some Australians, who because of their disabilities and need for support, are able to participate and benefit in the National Disability Insurance Scheme and those of us who simply happen to be over the age of 65 years do not, even though our disabilities may also require support, may also be significant or permanent and which may have been present for a long time prior to the scheme. We are excluded, no matter how disabled or needy we might be. This simple fact is a massive injustice.
Did we (being those of us over 65) just draw the short straw? Are you all, sitting up there in Canberra, simply waiting for those of us over 65 years of age to die off?
I wish to note:
"Many of the international human rights standards agreed to by the Australian Government,
including those set out in the Disability Convention, have not been fully incorporated into
Australian law."
Australia is signatory to a number of international treaties or instruments. Principal among these is the United Nations’ (UN) Convention on the Rights of Persons with a disability (the CRPD or Disability Convention) which was ratified by Australia on 18 July 2008.
Does the United Nation’s (UN) Convention on the Rights of Persons with a disability say in essence: Thou shalt discriminate against anybody over 65 years of age? No! It basically says:
"The UN Convention on the Rights of Persons with Disabilities is a big document about
disabled peoples’ rights. It says that disabled people should be treated fairly.“
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People, Australian citizens, over the age of 65 years are still people.
I suggest you should surely be able to comprehend that I, a person with significant disabilities who happens to be over the age of 65, is not being treated fairly and reasonably because, very simply, I happen to be three years too old and therefore am automatically excluded from being eligible for participation in the National Disability Insurance Scheme.
On 30 December 2018, the Minister for the NDIS made a press release as shown below: All eligible Tasmanians now have access to the National Disability Insurance Scheme (NDIS) with the Scheme becoming available on 1 January 2019 to the last remaining age group in Tasmania – those aged between 50 and 64 years old.
This significant event occurred 9 days after my 65th birthday. Many others surely are in a similar disadvantaged position.
I am compelled to convey to the Joint Standing Committee on the National Disability Insurance Scheme my strong assertion that the National Disability Insurance Scheme requires legislative reform so that it meets the needs of people such as myself, who have a genuine disability or indeed a number of disabilities, but who simply happen to be over the age of 65 and who have arbitrarily been excluded. This submission sets out reasons.
Personally, most of my disabilities arose in 1986, a time very substantially prior to the conception of the National Disability Insurance Scheme. Most of my disabilities happen to be of a result of a multiple trauma motor vehicle accident, are mainly of an orthopaedic nature and require ongoing treatment, medication and a variety of ergonomic supports.
There are many Australian citizens with lifelong disabilities, who are now over 65 years of age, who have had an unfortunate life absent the support of the National Disability Insurance Scheme but now are being told they should just ‘suck it up’ because they do not qualify, for no other reason than the puerile and artificial one of being over 65 years of age.
I wish to argue that excluding anybody of any age from the National Disability Insurance Scheme represents a breach of our international obligations and represents an unacceptable discrimination.
I am aware that there is an extremely wide range of different disabilities, with an extremely wide range of impacts on one’s capacity, the support one needs, the treatment and rehabilitation strategies one requires and the level of aid and modifications which are necessary. Some people with disabilities have very visually obvious indicators of their disability and some do not. The vast range and array of disabilities is undoubtedly a challenge, including for the NDIS. Such matters are not in dispute, in my mind. I have little doubt that such issues will be a strong focus in reviewing the capability culture of the NDIA.
I am sure the National Disability Insurance Scheme must find dealing with this vast range of different capacities, physical and mental deficits, represents a requirement
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to deal with each and every person who has disabilities on an individual basis. Such challenges need to be effected more efficiently, with less consultants hanging on.
That situation is true for a person who may happen to be a child and it is true for a person who happens to be an 80 year adult. The age of the person is irrelevant.
Yet, the National Disability Insurance Scheme is not designed to help the 80 year old adult who may have lifelong disabilities. This is an atrocious discrimination, simply disgraceful.
I am writing this submission with the simple objective to insist this discriminatory matter, where people of over 65 years of age are locked out of the NDIS, be reformed without delay for the simple reason that those of us over 65 are also Australian citizens, with similar rights to those of any other age, entitled to similar support, from organisations and schemes which are ostensibly established for the Australian population.
I am amazed that such an injustice has been allowed to fester within a modern initiative such as the National Disability Insurance Scheme.
It appears that the rationale for excluding people over 65 years of age, Australian citizens in fact, from being able to access support and care and assistance for their disabilities, especially when they are of a serious and chronic nature, would appear to be that the aged care system of Australia should be able to provide the appropriate level of assistance and support that such people require. Firstly, why would this be the case? Why would the aged care system have particular expertise for those with disabilities?
Why should a person with disabilities who may have been managing their disabilities their whole life in a particular way, be forced to deal with the aged care system, rather than a system established to assist and support them with their disabilities?
This exclusion of over those Australian citizens over 65 is one of those rubbish ideas, which diminishes the Australian Parliament. At no stage is the aged care system of Australia even able to properly care for regular healthy aged people, it would seem. We saw that in the recent COVID pandemic where aged people started dying like flies due to mismanagement issues.
I call upon you all, who have the commitment to be on the Joint Standing Committee on the National Disability Insurance Scheme, to each reflect on how inadequate life may be for a person with disabilities, relegated to the aged care system and hence, almost certainly, healthcare provided by Medicare.
The notion that the aged care system is able to adequately and professionally cater for and support elderly citizens is over the age of 65 with serious disabilities is a nonsense: an absolute nonsense. Isn’t this just code for the fact that citizens over 65 are on their own and not sufficiently valued?
A person who has had long term disabilities is highly unlikely to be in the circumstance to afford private healthcare. Therefore, what we’re talking about, for
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those Australian citizens with serious disabilities, who are over 65 years of age, is to try and meet their medical and health needs from Medicare.
Clearly, the National Disability Insurance Scheme recognises that people with disabilities often cannot obtain sufficient support for their medical and healthcare needs from Medicare.
Because the aged care system, when it comes to health and medical needs, is mostly dependent on Medicare, for those of us with disabilities who per chance are over 65 years of age that means that our health and medical need are almost certainly not going to be adequately met, because we are being unfairly excluded from the National Disability Insurance Scheme, which, had we been younger than 65, is the scheme which has been designed otherwise to assist us. After all, if the National Disability Insurance Scheme, is designed for people of disabilities and this is considered the best way to manage their needs, then what is the objection to doing so for citizens over 65 years?
Recognition of somebody’s disability is not age limited. You need to consider: Why would the recognition of disability now (and under the NDIS) be artificially limited (in terms of those deemed worthy of support) merely to those below the age of 65? Isn’t that the implication of this NDIS discrimination?
I think it is reasonable to assert that the National Disability Insurance Scheme does not actually meet the Disability Discrimination Act 1992. This legislation states:
"5 Direct disability discrimination"
(1) For the purposes of this Act, a person (the discriminator) discriminates against
another person (the aggrieved person) on the ground of a disability of the aggrieved person
if, because of the disability, the discriminator treats, or proposes to treat, the aggrieved
person less favourably than the discriminator would treat a person without the disability in
circumstances that are not materially different.
(2) For the purposes of this Act, a person (the discriminator) also discriminates
against another person (the aggrieved person) on the ground of a disability of the aggrieved
person if:
(a) the discriminator does not make, or proposes not to make, reasonable
adjustments for the person; and
(b) the failure to make the reasonable adjustments has, or would have, the
effect that the aggrieved person is, because of the disability, treated less favourably than a
person without the disability would be treated in circumstances that are not materially
given by the fact that, because of the disability, the aggrieved person requires adjustments.“
I expect there is some way in which the National Disability Insurance Scheme manoeuvres around the discrimination problem. I simply call that sort of behaviour a weaselling.
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Simply because I happen to be over 65 years of age, does not mean my disabilities arising from 1986, as it happens, when I was 33 years of age, have gone away, that my needs for support have somehow magically lessened or abated or have been solved.
Indeed the situation as one ages, is quite the contrary. As you age, it is my experience that the disabilities and problems of mobility become greater and not lesser. Strange about that!
The National Disability Insurance Scheme requires urgent reform to remove the blatant discrimination against certain Australian citizens, those who happened to be over 65 years of age. The National Disability Insurance Scheme may need to adopt different strategies for assisting some clients differently but I am sure that is already the case. No doubt, greater flexibility is and will be required.
I can confidently say that were I to have access to The National Disability Insurance Scheme, it would undoubtedly bring and cause significant improvements to my life. It would do this in a range of ways notwithstanding the fact I am over 65 years of age. Such benefits would be a reflection of being able to have a genuine experience of being supported by the NDIS.
Nonetheless, as a person, an Australian citizen who is over 65 years of age, I rely on Medicare, including the Team Care Arrangements and Enhanced Primary Care Provisions. Currently, because certain relevant and valued treatments are not available under Medicare, I have no option but to pay for those treatments outside of Medicare. This is merely one example of the difference the NDIS would make to me personally.
Currently I estimate that I pay per annum, an approximate sum of $4,000 to $5,000 for treatments, which are not in any way covered by Medicare. When one is on a Disability Support Pension that is a lot of money. I can understand that you may not consider it so, but I wish to assure you that it is an amount which causes stressful circumstances and can render one impecunious at times. All because of a Commonwealth government discrimination!
This is a polite way of saying that the discriminatory exclusion of people with disabilities who are over 65 from gaining access to support and care which they need and which could be afforded to them by the Commonwealth’s National Disability Insurance Scheme, is sufficient discriminatory relegation and cause such as to feel aggrieved.
When you have a disability, regardless of whether you are under or over 65 years of age, life even in a modern society like Australia, is harder. Simply, the situation is many every day activities are harder when you have disabilities. My 65th birthday was a bit over three years ago now and I cannot recall some magical transition that saw my disabilities lessen, simply because some politician made an arbitrary but daft judgement. There was no magical transition, in fact.
As a Disability Support Pensioner, who is a member of the Transport Access Scheme, because of my disabilities, I note thankfully that the Transport Access Scheme is not capped at 65 years of age. Thank goodness for small mercies. Indeed
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if the Transport Access Scheme can manage to support those of us over 65, surely so can the NDIS.
If various State and Commonwealth governments can manage to avoid age capping the various Transport Access Scheme eligibilities, why can’t the Commonwealth do likewise for the National Disability Insurance Scheme?
My disabilities were recognised and indeed quantified by the Commonwealth Medical Officer, who assessed my eligibility for the Disability Support Pension, when I decided to apply in 1992.
I ask you to consider that an age restricted system of support, such as the Commonwealth’s National Disability Insurance Scheme, is not at all logical when it is known that people who have had lifelong and chronic disabilities, established well before the start of the NDIS, have been deliberately excluded.
I don’t think this action, possibly from the outset of the NDIS was malicious; it was simply expedient and ignorant. Politicians should make decisions based on principles, based on our international obligations and based on an adequate empathy for humanity.
I wonder what Australian citizens over 65 years of age are meant to do. Hop into the garbage can of life? Conveniently disappear?
Currently I am over 65 years of age and being discriminated against, along with all other Australian citizen’s over the age of 65 who are being locked out of the Commonwealth’s National Disability Insurance Scheme.
It would seem that many Australian citizens who are under 65 years of age and thus who gain assistance via the Commonwealth’s National Disability Insurance Scheme who although are naturally considered to be of working age, may never return to work. Some may always have a negligible capacity to work at any level.
Some Australian citizens who are under 65 years of age will gain sufficient support from the Commonwealth’s National Disability Insurance Scheme so that their participation in our society improves, including their work prospects and their contribution.
Personally, I have never walked away from the opportunity to contribute to the well- being and future of our society, including those inadequate aspects of our ecological sustainability.
None of those employment perception matters are a reason for prioritising and limiting the Commonwealth’s National Disability Insurance Scheme to those of us under the age 65 years, simply because they may have more productive life ahead of them, employment wise.
Indeed any deliberation over one’s productive working life simply cannot consider in any meaningful way, the age of the person involved.
Some, regardless of whether they have a disability or not, will never have much potential and others, for whom their disabilities may, to some seem insurmountable,
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still manage to make an extraordinary contribution. In all of that deliberation, a person’s age, (at least in my view) is largely irrelevant and should definitely not be any sort of criteria for inclusion or exclusion at any stage, especially regarding the Commonwealth’s National Disability Insurance Scheme. If that NDIS age criteria eligibility has been enshrined in law, then the law is ridiculous.
When one has a disability, a limitation, an injury or an incapacity which is serious and chronic in nature, perhaps often lifelong, one is often discriminated against and regardless of the Commonwealth’s good intent in this area specifically for those citizens under 65 years of age, discriminatiions, exclusions and other forms of rejection and marginalisation cause one to be eliminated over and over again. I ask you to accept this fact.
Remember the old term for the Disability Support Pension: ‘The Invalid Pension’. What is actually being said when we are discriminated against, if it is not saying to you that one is invalid.
The NDIS is in fact telling Australians that for those of us who were born before 1954 and are therefore were always over the age of 65, in NDIS terms, our disabilities do not require support. So, the notion that those of us with disabilities, even though we are over the age of 65, might benefit from a more mobile life, a less painful life, a more dignified life and a greater opportunity to participate in society, is surely reasonable and fair.
The distain that I express here for such circumstances, where I call for and ask you to decide to bring about urgent change, is in my view understandable and appropriate. So, I hope you can understand my feelings too. I have assumed you are on this Committee because you have both an interest and some empathy for those who live with disabilities. I appreciate and respect such a commitment.
It is my contention that the mechanism, legislation or regulation which causes the Commonwealth’s National Disability Insurance Scheme to exclude Australian citizens who are over 65 years of age is not only discriminatory and unfair but it is illogical as well.
I have been aware of this obnoxious NDIS discrimination for a while now, because the NDIS scheme has always been described as one that excluded those Australian citizens over 65 years of age. However, it has taken me some years to find the capacity to write this submission. This may appear to be a simple matter, but being discriminated against is never a simple matter and nor is life with disabilities. Never!
It’s completely tragic that as a person who has disabilities, I find that the Scheme, which might deliver some assistance for those disabilities, the Commonwealth’s National Disability Insurance Scheme, is actually a scheme that deliberately and specifically excludes me simply on the basis of my age. I hope you can understand the level of aggrievement, which I feel.
I am aggrieved because the capability and culture of the NDIA is predicated illogically but explicitly and intrinsically on my exclusion, purely because I am over 65 years of age. I was not in control of the time when I was birthed. I am aggrieved on behalf of other Australian citizens over the age of 65 too, because like me, as you age your capacity inevitably declines. When one has significant disabilities, one’s
ability is also most likely to further decline, with declining capacity, basically the
opposite of the circumstance which is suggested by the over 65 exclusion perpetrated by the Commonwealth’s National Disability Insurance Scheme.
In performance terms, the fact the Commonwealth’s National Disability Insurance Scheme, deliberately is designed to exclude all those Australian citizen’s over 65, justifying it apparently by an illogical reference to aged care support, simply means that this Scheme and hence Australia actually fails everyone over 65 years of age and who has a serious enduring disability.
There is no doubt in my mind that the inclusion of Australian citizens with a disability who are older than 65, would increase expenditure on the Commonwealth’s National Disability Insurance Scheme. However, I think I can confidently say that it will probably cost less to implement this vital reform than only one of Scomo’s nuclear submarines, which Australia has decided to order because of some perception of risk from somewhere.
When it comes to disabilities of people over the age of 65, I am not talking about some future risk; I am talking about their reality now.
Finally, I wish to assert that my submission 1s a relevant matter for Joint Standing Committee on the National Disability Insurance Scheme and that the Scheme, I assert, has the capability to service those Australian citizens over the age of 65 who have significant disabilities, who notwithstanding their age require support and thus move to a Nationally Consistent Approach.
I recognise that the reform I am proposing for the NDIS and NDIA to remove the over 65 participation barrier may require legislative amendment. Any required legislative amendment should be strongly recommended by this committee without procrastination. I call upon it to do so now.
Yours sincerely,
“Terms of Reference”
The committee will inquire into and report on the implementation, performance, governance, administration and expenditure of the National Disability Insurance Scheme (NDIS), with particular reference to:
e. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment
e. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and
e. any other relevant matters.“