Submission to Joint Standing Committee on Independent Assessments in the NDIS
My name is Jennifer Knight. I am an NDIS participant with multiple disabilities and I have been attempting to make my way, on my own, with the necessary support of the NDIS. I have been with the scheme since the trial, and being on my own, I’ve had no choice but to trust that I will be supported by those who purport to support me. As such, I have effectively tested the good faith of disability support structures which are funded by and including my interactions with the NDIS.
From experience, I am able to speak to the unsustainable costs that non-deferential and even adversarial presumptions puts upon my ability to be supported and in this respect I am compelled to address the NDIA’s proposed implementation of independent assessments.
The proposed compulsory assessments are in fact adversarial and would put duress upon us to comply on pain of not having necessary supports funded. This is unilateral, non-consensual, and as such must not be allowed to pass.
My primary advice is that any policy or practice must be tested with respect to how it impacts the primacy of participants in our lives, in how we are supported, and in how those supports are funded. By definition our supports fall under our domain and so must defer to us else they are not our supports. To ensure that we are able to be supported as autonomous independent members of a larger society there must be true deference to us in practice at all levels of operations in the scheme. That is undermined by the proposal of independent assessments. To achieve fairness, it would be better to make sure that participants are happy with their level of supports and that the funding they need to be supported is reliably provided.
The definition of organisational pathology is when the overarching goal, in this case to fund the reasonable and necessary supports for disabled people in Australia, is subverted for the survival of the organisation. The NDIS is publicly funded. The public trusts the NDIA with the distribution of public funds with the expressed purpose of improving the lives, independence, and social engagement of people with disabilities.
The NDIA must restore the participant as the primary determining factor as to whether the scheme is fulfilling its trusted role. This would resolve any issues of fairness and would preserve sustainability of purpose.
With respect to the terms of reference:
e. thedevelopment,modelling,reasonsandjustificationsfortheintroductionof independentassessmentsintotheNDIS;
I was on the co-design group, facilitated by PWDWA “with” the NDIA. In this
we were to be working on the systemic issues that could be addressed by the NDIA. We were bold and brave in our input, but I can say in good conscience that we were not working meaningfully with the NDIA as there was no sense of legitimate engagement with our concerns from the NDIA. We recommended that there needed to be ongoing co-design at all levels of NDIA operations. The strong feeling from our group was that the NDIS was still developing – not mature as claimed by the NDIA
when introducing this idea for how to bring “consistency” to people’s NDIS journey.
I state strongly that there needs to be a good faith engagement with
participants in the developing of how the NDIA implements the NDIS. This is so
crucial to an effective scheme, but this proposal of “independent” assessments
effectively cuts us out of the primary position that participants should naturally hold
in our lives and our communities: by definition, our supports fall under our domain,
and as such we must be deferred to on all matters that pertain to us.
Introduction of compulsory “independent” assessments was done unilaterally
to us, and this is the problem, that the scheme is meant to be for us, with respect to us,
and wholly with us, not done to us. It removes our choice and control, and it is not proposed in a way that establishes rapport or that gives us our natural agency and autonomy in our funded disability support scheme. I strongly oppose the modelling that suggests that consistency at the cost of nuanced engagement has any potential for good and is quite likely to cause a lot of subjugation and multifaceted harm to those of us who aspire to more wholistic engagement in our communities. To subject us to the scrutiny of strangers, in a way that we have no rights or ability to counter, will subvert our natural agency and autonomy when the point of the scheme is to support us to have more equitable standing in society.
I emphasise that anything that causes us undue duress is not defensible from a
scheme that is meant to be supporting us. That any modelling with respect to sustainability must include the actual efficacy of the implementation and that the people who can rightfully report to that efficacy are primarily participants, not some appointed “independent” stranger by proxy.
b. theimpactofsimilarpoliciesinotherjurisdictionsandintheprovisionofother governmentservices;
I can only report hearsay to this but I have not heard good things about the
effect of independent assessments on people from Centrelink or Work Cover, for example. It is disempowering.
c. thehumanandfinancialresourcesneededtoeffectivelyimplementindependent assessments;
The most important human resource needed to effectively implement this is
the participant and a great many of us would be subjugated to demeaning, not
customised, overly simplistic, and likely ineffective assessments. Who could say that
this is a good practice? Only those who were tasked with sustainability measures that
did not take into account the broader economic costs and benefits of the
implementation of the scheme, including employment of a wide variety of labor force, improvement of participants ability to influence our society, a level of transferred wisdom that would be effectively discounted by putting the say of a stranger above
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our own and our allies input.
But importantly, there is no such thing as “independent” assessments from the NDIA, as it is by definition the whole of the scheme. So these assessors will be much more influenced by the directives of the NDIA, who by the very introduction of this proposal have discounted our perspectives in the design of the assessments, and as such would remove and re-class “qualified healthcare practitioners” to not “do no harm”, but to judge our need based on a process that would be demeaning, that no one who were not under the duress of having essential funding withheld would abide by, and that if the larger populace were required to go through would be rioting in the streets. This is broken design and I ask that you seriously consider what is it that we are trying to do with the NDIS? I was promised that the scheme was to help us live our best lives, not subjugate us to a lower class of citizenship.
d. The independence, qualifications, training, expertise and quality assurance of assessors;
As proposed, these people will be engaged to assess and will not have realistic experience with people with disabilities. They will not be working along side us, by definition. So how can the culture be sensitive to our needs, when what is proposed is to push the most diverse of our population into a consistent form. That’s not how disability works.
e. The appropriateness of the assessment tools selected for use in independent assessmentstodetermineplanfunding;
inappropriate. Anything that is done to us without first hearing our statement of support needs and justifications and working from there, respectively and respectfully by our consent is inappropriate. f. The implications of independent assessments for access to and eligibility for theNDIS;
it would prevent people from being able to carve out unique positions in society, by placing our prospects too firmly in the hands of strangers. May I ask you, who reads this, if you have some sense of standing in your position of employment, parent, friend, or other status in society how would you fare by having your continued involvement in these roles depending upon a stranger assessing you with a standardised toolset? g. The implications of independent assessments for NDIS planning, including decisions relatedto funding reasonableandnecessarysupports;
how can anything that is standardized be reasonable? After all, aren’t those two concepts in opposition? And how can we determine necessity through
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standardisation if we do not recognise the unique ways that people devise to support our disabilities? In terms of the broader implications, the opportunity to learn from us is being subverted by this proposal. There is far too much adversarial intent and a complete lack of adherence to good faith – and that is something that we deserve to operate under.
I have personally felt a strong sense of betrayal from what I believed to be our funding body who I assumed would of course only ever operate in a way that was consistent with good faith.
h. The circumstances in which a person may not be required to complete an independent assessment;
A think no one should be required in a compulsory fashion, but if someone thinks they would benefit from it (which, again, is the point of the scheme — to by our measure actually be of benefit to us) then they should have access to a simplified method of costless access. The compulsory requirement must be taken off as it reeks of bad faith.
i. Opportunities to review or challenge the outcomes of independent assessments;
Assuming that they are not compulsory, should someone partake of this avenue of access, it should of course be reviewable and again, our voice must be considered primary, not some appointee (especially not one who has not been appointed by but assigned to us). Look at it this way: If we had a high percentage of participants holding high positions in society then perhaps we could assume that there was fairness in this kind of policy directive because we would have strong voices being heard to challenge the implementation and how it affects people’s ability to maintain these positions. But as it stands, we are being pushed down, not empowered by this proposal under the guise of fairness.
j. The appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;
As I said above, for anyone who aspires to greatness and position in society, this practice has the potential to shackle said aspirations. That being said, these assessments will be proportionally damaging for anyone who has been traditionally or personally impacted by systemic trauma. As such, it is exactly those who are already marginalised and hobbled by inequitable systems that are likely to experience further marginalisation and harm from the proposed solution to these inequities. I cannot emphasise this enough; this is not a valid proposal given the rationale for the proposal. I humbly request that the NDIA be given a directive to defer to participants in any further policy or legislative proposals. Not just claim they have consulted with us but actually have our individual and collective confirmation.
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this is what we want, need, require, and would allow us to achieve the best outcomes across the board.
k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; eOne concern is that there is emphasis on eligibility that effectively makes a subclass of disability “severity” that doesn’t recognise that when well supported, many disabled people seem less disabled. So the only way to get a valid assessment would be to get an assessment when someone is not well supported. That would be unethical. So any technique to determine funding must be able to work while someone is well supported but still work if someone is not well supported. And must not risk undermining existing supports that may have allowed someone to achieve better standing and appear less disabled to an unprimed “independent” assessor.
Consider the perverse pressure that (having your entire budget dependent) this assessment puts upon people who aspire to greatness. We tell ourselves we will find a way. We tell ourselves it is okay it will be okay, and we are repeatedly subjected to low expectations. We must constantly find ways to signal “have high expectations of me!” So any practice that is put into place to achieve fairness that is so tightly coupled to our necessary funding must not undermine this coping mechanism. I imagine that this is especially true for those with invisible disabilities.
l. any other related matters eNothing about us without us. I would like to see the NDIA put a good faith effort into the inclusion of participants in the operations before they declare the scheme mature and issue such impactful directives as could be taken to imply adversarial intent. After all, it is only us participants who can tell you when we feel like the scheme has achieved operational maturity. This move resounded within the disability community as something being done to us, especially as it included the notion of compulsion. The scheme must repair this rupture and significantly include us in any future operational directives to establish a trusted role in how our disability supports are funded and sustainably preserved.
We must be able to live a life with confidence that our funded supports will continue, without fear that they will be taken from us by adverse interests. We should be able to access our funded supports according to our needs and should be heard when we express those needs. This is the only viable way for us to become fully fledged members of society and the scheme is not mature until we are able to achieve this level of inclusion.