NDIA Accountability Project

Independent assessments and impact on families

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Independent Assessments

Submission 350 - Attachment 1

Date: 29 March 2021

Submitted by: • – mother of three children on the NDIS; and NDIS Occupational Therapist.

Submission Comment:

  • My response to the Federal Government document ‘PB Consult feedback Access and Eligibility PDF.pdf’ dated March 2021 Version 1.0 ndis.gov.au

Please note – I have submitted another two documents under my name:

  • Joint Standing Committee – My Experience -
  • Joint Standing Committee Inquiry – Independent Assessments –

Page 15

“Through the open and competitive tender process, we’ve chosen 8 independent assessment organisations who employ a wide range of qualified health care professionals.”

  • It appears that the tender process has been completed before any true consultation with the disability sector has taken place. The content of the tender to my knowledge is not public, nor is the Key Performance Indicators that the chosen assessment organizations must adhere to.
  • The organisations have already shown that they are getting around the requirement of not providing LAC or NDis Treatment services AND Independent Assessments by simply starting or using a subsidiary company, and claiming they are a ‘separate entity’. This is a significant conflict of interest.
  • Some of these organisations are floated on the ASX and will very likely have a greater agenda around profit and shareholder dividends than ensuring participants have a good experience or get accurate results from the Independent Assessments.
  • The former CEO of NDIS Robert De Luca is one of the people heading a chosen ‘independent’ organization. This is a significant conflict of interest.
  • The health care professionals may be ‘qualified’ but they are most often new graduates or near new graduates with little to no disability-specific experience (clinical or lived experience), and from my own experience working with large traditionally injury management organizations, supervision will focus on maximizing billable hours, minimizing time spent with clients, in order to maximize profits. Additionally, the government’s request for a minimum 1 years’ experience by the assessors is grossly inadequate.

“…the assessment tools we’ve selected are disability-neutral, and focus on understanding a person’s functional capacity. This means all of the assessors can complete all of the assessment tools…The assessment tools provide a reliable and consistent assessment of how a person functions in their daily life.”

  • The disability community, in particular organizations like Occupational Therapy Australia, have already written to and demonstrated to NDis that the assessment tools chosen are not fit for purpose, and with modifications to the WHODAS 2.0 that are proposed by Ndis, make it not only invalid, but is against the WHO

Independent Assessments

Submission 350 - Attachment 1

requirements for its use. These assessments were never intended to be used in isolation as a funding determination tool. They were intended to be used as PART OF an OVERALL NEEDS ASSESSMENT, which requires an understanding of the participant’s needs, goals, aspirations and the contexts within which they live.

  • If the assessment tools are so reliable and consistent, then why is there an argument that a participant’s own therapists cannot complete them? Surely, based on the governments claim of reliability and consistency, this would not only be acceptable, but would be encouraged? Furthermore, the issue of ‘sympathy bias’ by participants’ own treating therapists would surely be eliminated if the assessments are so reliable and consistent? It should not affect the assessment results then, right? Wrong. Understanding the needs, goals, aspirations and context within with a participant lives WILL affect the results, most likely for the benefit of the participant, and this is what the government is avoiding by using assessors who not only don’t know the participant, and it also puts paid to the lie of the assessments will be reliable and consistent!

  • Additionally, if the assessments are so reliable and consistent, and will yield the same results regardless of assessor as they claim it will, then why is the only recourse for a participant disputing the assessment outcomes to have another assessment, which presumably will yield the exact same result??? This doesn’t even make sense and just supports the notion that the government is removing all avenues of complaint or redress for the participant.

  • An independent assessor not only cannot due to time constraints, but they will not delve into the answers to ensure they are accurate particularly where a participant lacks insight, cognitive skills, or has difficulty communicating and advocating for themselves; simply because an independent assessor will not know the participant or support person well enough to understand that their answers are possibly inaccurate.

“We’re working with participants, professional organisations and the disability sector, to develop a skill matching process for participants and assessors.”

  • I have heard a number of accounts in the autism community where during the independent assessment pilot, they were seen by a physiotherapist? I don’t think I need to say more, surely, at how inappropriate this is?

“The [independent] assessment does not indicate what supports or services you may need.”

  • The government is proposing that the independent assessment results will be used to determine your funding package amount, using an undisclosed algorithm.

  • If the independent assessment process does not indicate or determine what supports or services you may need, and yet it determines the funding you will get, and this is based on multiple assumptions described by the undisclosed algorithm that cannot possible take into account individualised needs, goals, aspirations, supports that are already in place (if any), equipment that is already in place (if any), big ticket items that may be required such as home modifications or Specialist Disability Housing etc., keep in mind ‘supports’ in NDIS language includes assistive technology and consumables, not just support workers or therapy services, or life skills groups, or short term accommodation etc.

  • The government has purposely used the word ‘indicate’ here instead of ‘determine’, but the assessment WILL ’determine‘ the funding and therefore the supports and s \services you will be able to AFFORD.

Page 19 "Independent assessment results themselves will not be directly reviewable by the AAT.\This is because independent assessments are not a decision the delegate makes under the
NDIS Act. Instead, the delegate will requires that an applicant has an independent
assessment for the purposes of informing an access decision under the NDIS Act.\Disagreeing with the results of an otherwise sound and robust independent assessment
wont mean you get another assessment. A second assessment may be provided where the
assessment was not consistent with the independent assessment framework, or if you have
had a significant change to your functional capacity or circumstances.”

  • It is clear the government is trying to prevent participants from being able to dispute a way, by separating NDIS delegates from the assessment process. However, from the perspective of the participant, the independent assessor, no matter WHO they are, are the ones that are clicking the b buttons for the answers on the assessments that NDIS HAS CHOSEN, and therefore c both the assessor and NDIS should be held accountable for getting this information d right and the participant should have the ability to view the results in both raw data e and compiled data/report format AND see the resultant funding they are likely to get f BEFORE anything is finalised.
  • NB – I DO NOT AGREE AT ALL THAT THESE ASSESSMENTS ON THEIR OWN SHOULD BE DETERMINING NDIS FUNDING PACKAGES IN THE FIRST PLACE AS THESE AASSESSMENTS WERE NOT DESIGNED FOR THIS PURPOSE.
  • It is entirely possible that the assessor may disagree with the answers given by participants, either by misunderstanding, assumption, bias, judgement, bloody- mindedness (they are humans remember?), and the participant or their support qperson may not be privy to the answers recorded ABOUT THEM.
  • Furthermore, it should be a REQUIREMENT of the assessor to conduct a NEEDS r assessment first, to gain information about goals, aspirations, context within which s the participant lives, plus historical reports, as without this information, answers t cannot be accurately made about the participants true function.
  • Example of how easily this will go wrong – I asked my own husband 3 days ago iwhether he felt one of our 15 year old autistic sons could dress independently – yes or no? He answered yes straight away. \I then pointed out to him that our son j frequently puts his t-shirts on backwards, cannot tie shoelaces, cannot tie his school k tie, does his buttons up crookedly, has difficulty putting on his tight school socks, lhas his clothing twisted around his body after toileting, struggles with and needs help mwith zippered jackets, and cannot wear jeans or pants with press studs, buttons or zips as he can’t do them up. He also cannot shop for his own clothes as he would nnot know what size to buy, he does not know the difference between his own and ohis father’s clothing and frequently wears dad’s clothes, and most days he can’t find p school uniform items due to visual perception issues, therefore requiring help in qmultiple areas that is not ‘normal’ for a 15 year old. So the answer should be NO, he

Independent Assessments Submission 350 - Attachment 1

\cannot dress independently, he needs help at least once daily. But parents of children with disabilities are often so used to or conditioned to their ‘new normal’, particularly in a household like ours where all our children have autism and we don’t know any different, that they think erroneously that their children are better than they actually are – except that I am an Occupational Therapist who knows my children very well, understands the limitations of their function and normal childhood skill development, understands how assessments work and the importance of giving an accurate answer that considers the WHOLE task being asked about (as I have skills in task analysis). How many families would be in my position? What if my husband completed the assessments with the independent assessor and not me? The outcomes would be wildly different, and I cannot dispute ANYTHING!!!

“A complaints process will be available for applicants who are dissatisfied with an independent assessment, their assessor, or the assessor organisation.”

• If I am dissatisfied with my children’s independent assessment, what parts of this assessment can I complain about given I cannot dispute the assessment outcome in any way? What is the point of this statement???

• If I am dissatisfied with the assessor, or the assessor organization, I would have to demonstrate they did not meet the independent assessment framework first, and even then, we will only be subject to another independent assessment that according to the federal government is so reliable and consistent, we will not get a different result. Again, what is the point???

• Another completely meaningless complaints process by the federal government that removes the rights of participants and their carers! \Page 24

“There is no single assessment tool which would cover both the World Health Organization International Classification of Functioning, Disability and Health and the NDIS Act and would meet the needs and situations of all NDIS participants. That’s why through research and testing we have identified 6 different tools for independent assessments, to be used where appropriate, to gather reliable information on a person’s functional capacity across all areas of their life.”

  • So while the federal government is making it sound like they are being comprehensive here, the reality is that only 2-3 assessments will be used for any independent assessment due to the time constraint for the assessment of 3-4 hours (or if you look at the advertisements for independent assessors jobs, this is now only 3 hours).

  • This means that different participants will still be subject to minimal assessments, reducing the ability of an assessor to truly capture the function and needs of the participant.

  • This also means that two participants of the same diagnosis may have different assessments chosen to be completed, therefore reducing equity in the scheme anyway.

  • If there are changes made in any way to the assessments being used, they lose validity and reliability between assessors – the government has already reported

Independent Assessments Submission 350 - Attachment 1

using a modified version of WHODAS 2.0 which means it is no longer valid or reliable. What other changes are they planning?

  • The federal government has also reported that a 20 minute task observation of a person’s function will be undertaken; however this ‘task’ will be chosen without knowing anything about the person, and most people with Autism level 1 or 2, possibly 3, or psychosocial disabilities, or even cognitive disabilities can ‘mask’ sufficiently long enough to avoid anyone detecting their difficulties, or may be having a ‘good day’ – there is nothing useful in this! Apart from the risk of humiliating the participant if the task chosen is inappropriate in ANY way or shows up their shortcomings and causes embarrassment, or the task is part of a person’s trauma history or cultural aversion – which a therapist known to the participant would likely know, but an independent assessor would not! This is such a dangerous practice and will not yield any valid or reliable information.

“The assessment tools have been selected to support decision making as outlined in the NDIS Act 2013, demonstrate strong evidence for reliability and validity, are practical to administer, and work together to describe the person’s functioning including capacity, performance and environmental factors in a holistic way.”

  • OK, firstly, the federal government previously stated that as the assessments are not subject to a delegates decision making, and therefore that they are not a reviewable decision – and yet here, they are clearly stating that the assessment tools have been selected to support decision making???? Such a massive contradiction here!
  • Independent assessments, the raw/adjusted assessment results, assessment reports, as well the funding determination that results from them assessment, SHOULD ALL be subject to a reviewable decision! It does not matter if the assessment tools data is submitted into an algorithm that then makes the funding decision – the FINAL decision on funding packages (erroneously developed based on these assessments that are not designed for that purpose in the first place), is still an NDIS decision ultimately, and should be subject to review EVERY TIME.
  • Again, the government is stating here that the assessment tools chosen are reliable and valid – except when changes have been made to ANY ASPECT of how those tools are administered, interpreted or used (for funding determination for example), then they are NO LONGER VALID OR RELIABLE. PERIOD.
  • As per the previous quote, only 2-3 assessments will be able to be completed in the allocated time of 3 hours for an independent assessment – so there is no guarantee that the chosen assessments will ‘work together’ at all, particularly if those chosen assessments are different for each participant!
  • Capacity, performance and environmental factors are not the only considerations when it comes to determining the funding requirements of a participant – capacity of the informal supports (if any area available), anticipated future changes in circumstances, transitionary age groups, insight or cognition, abusive carers that participate in the assessment and take advantage of their power, variability of function in different environments (which way do you answer a question if your function varies from environment to environment, or even within the same environment at different times?), dynamics of a family, families with multiple children with a disability, the dynamics of relationships with people the participant

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lives with, access to and availability of services – there are so many other factors that WILL impact on funding requirements, that are not taken into account by any of these assessments, and cannot be determined in a 3 hour assessment that is barely time enough to get through the interrogation of these assessments.

Page 25

“We spoke to academics, allied health professionals and the disability community to understand the kinds of assessment tools that would work best for the NDIS.”

  • As a member of Occupational Therapy Australia, who represents the profession that is best placed to undertake needs assessments and functional assessments, it is clear that they were NOT consulted at all, and that the government aimed its judgement of our profession as “sympathy biased”, therefore excluding our profession from any discussions.
  • OT Australia has already submitted to the government their serious concerns about the use of these assessments as being inappropriate, invalid, not reliable, for the NDIS’s intended use, particularly for the determination of funding packages.
  • It is abundantly clear to me that this consultation did not take place and that given there has been no change in the federal governments approach to independent assessments and the tools to be used, that they did not heed the EVIDENCE provided by Occupational Therapy Australia.
  • The federal government therefore does not ‘understand the kids of assessment tools that would work best for the NDIS’. Or maybe it will work best for the NDIS in terms of cost saving and reducing the number of participants in the scheme, but they will not work best for the participants, whom the NDIS should be supporting. It’s all in the wording, right?

“As part of this process, we looked at and assessed more than 100 recognised and standardised tools for independent assessments. We needed to make sure the tools met certain criteria and they:

o Were disability-neutral, so could be used across all the disability types o Assessed function, rather than impairment o Were questionnaire-based, to avoid capturing a person’s moment-in-time function, for example on a “good day”, or with an unfamiliar assessor o Are accurate and reliable.”

  • Feedback from occupational therapy colleagues who have used these assessments have disputed the claim that they are disability neutral, or even culturally neutral. I don’t have expertise on all of these assessments, so will leave comment to my colleagues and OT Australia. One thing people forget that there is a ‘disability culture’, and often within that, a need for trauma-informed practice. The independent assessment tools chosen, and the likelihood of young therapists with minimal clinical or disability experience, or indeed life experience, will not have the gravitas, nor the understanding of the disability community, to implement these tools in such a way that truly captures the participants function or situation.
  • For people with fluctuating permanent conditions and function, it should be reasonable that they communicate their function on their ‘worst day’ to ensure they

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have adequate funding for periods of reduced functioning without having to request a review due to change of circumstances that may only last for a few days, weeks or months.

  • My understanding of the Vineland 3 is that it asks questions in a format similar to ‘do you or have you ever been able to ….’. In the circumstances of a person with a psychosocial disability or someone with an acquired disability or a disability that worsens over time, it is irrelevant what they were able to do in the past and should ot impact on the results that directly determine the funding a person will receive.

  • One point I find highlights that the federal government does not understand the eeds and experience of participants and their carers is the hatred we have for questionnaires – particularly where they are administered over and over again for years and years to come, as is proposed.

  • The benefit of being‘assessed’ by a therapist you already know, is that they don’t eed to ask most questions because they already know the answer. They would do tis purely to spare us, the carer or participant, the trauma of having to answer questions we would rather not discuss, that are upsetting or triggering, or that feel pointless. We also love that our therapists will make an assessment more ‘conversational’, and less like an interrogation of rapid fire question after question inan impersonal manner. We love that our therapists will constantly monitor our esponses and give us the time and space to recover when we get upset or stop altogether. We love that they understand how far to push us, and when to back off. We love that they want the best for us, but are able to manage our expectations, which they do well. We love our therapists for these kindnesses. It is not ‘sympathy bias’. It is being human, understanding where we are coming from and the challenges we are trying to overcome EVERY DAY. The best therapists understand the concept of ‘therapeutic use of self’.

  • Independent assessors, particularly near new graduates, will not have this understanding of a participant’s or carers experience. They will not have the timeto pace an assessment, as they have an allocated 3 hours, even if that is done over 3 separate appointments, they will be rushing us to get the assessments completed. They will not care about the result, as it is impersonal, and it has alreadyeen demonstrated by the reports of participant experiences in the independent aassessment pilot that the assessors have stated their own therapist reports arerelvant’, they cut the participant off when they try to explain their answer ordifficulty coming to an answer when their situation is complex, they shut them downwhen they try to clarify the question saying‘just say yes or no’ abruptly – peoplewith a disability deserve so much more. Most people with a disability ort heir carerdisplay some characteristics of trauma – most young therapists have no concept oftrama informed care, and their employers only care about profit and dividends. Please don’t put us (carers) or our loved ones (participants) through this.

“We will continue to review the assessment tools we are using to ensurethey are working for participants and are the best fit for the NDIS.”

  • The inappropriateness of these assessments and their use to determine fundinghasalready been demonstrated by Occupational Therapy Australia, and likely otherdisability organisations and individuals.

Independent Assessments

Submission 350 - Attachment 1

  • It is clear to me, based on the response of the federal government to push ahead with these assessments despite the evidence they are inappropriate for their intended purpose, that they have no care for whether the assessments are going to work for participants, only whether they are going to work for the NDIS agenda to reduce costs and reduce numbers of participants.

The text “Page 26” is present here as part of an original document page marking system. “Where an independent assessment indicates a significant improvement in functional capacity, a participant may be referred for an eligibility reassessment, consistent with the current provisions of the NDIS Act. The information from the independent assessment may then be used to inform an eligibility reassassessment decision.”

  • Firstly, an improvement in functional capacity, given that the assessment tools are rendered unreliable and invalid in the way the federal government intends to use them, may occur simply because a different assessor completes the assessment.

  • An improvement in functional capacity does not mean that a participant no longer needs supports! It just means an improvement – I would be very surprised if an independent assessment tool would indicate a person no longer needs any assistance whatsoever, and that this also means they won’t need assistance in future– the option of remaining in the scheme, but without supports, should be possible.

  • The notion of an ‘eligibility reassessment’ suggests impermanency to the scheme that was purported initially to be‘support for life’. If a disability is permanent, the participant should be able to remain within the scheme, even if they are not actively receiving supports for a period of time, so that re-entering the scheme is simply a matter of review’, hopefully a quick process, and not having to reapply for access again, which is a lengthy process– the participant has already demonstrated they have a permanent disability. It won’t magically disappear, but their functional capacity or informal or mainstream supports may vary.

  • Example – a participant was receiving assistance from a support worker each day for meals, until they entered a relationship and that new partner commences undertaking the role of providing the participant with meals. However, 6 months later, the relationship breaks down and the participant needs urgent assistance with meals after their partner leaves the home they shared. It is not reasonable then for the participant to have to reapply for access to the scheme as they temporarily did not need assistance, which may result in significant delays for service provision to be put in place. There may not be appropriate meals services in the person’s area, and there is a serious risk of harm that may come to the person.

  • Example – an ordinary life means a participant may wish to move to a new location. Say a participant had been in the scheme, but did not need supports in their current home, but they want to move to take a new job. They will potentially lose the supports they had built around them through NDIS (community based supports, informal supports if they are moving out of home) but should have the right to expand their career. To do so, they require NDIS support and funding from to assist with creating a new support network and ensuring good access at their new job. If they were enabled to remain in the scheme, then they could request a review so that they can quickly gain access to the supports they need. If they were ejected out of the scheme in the former location whilst they were not requiring NDIS funding, their ability to move to a new location becomes entirely dependent on them being

Independent Assessments Submission 350 - Attachment 1

able to prove eligibility again, which will take too long, and likely they will lose the job offer! The NDIS needs to be highly responsive and quick in circumstances like these, and not hold participants to ransom so they can’t make quick decisions about their lives – particularly when they have already demonstrated disability permanency and eligibility for the NDIS in the past.

Page 27 “The feedback collected over the last 3 months is being used to inform draft changes to legislation, policy, implementation approaches and guidance for participants, staff and partners – ensuring we can deliver these significant reforms to the NDIS in a way that works best for NDIS participants.”

  • As you’d be aware, the draft legislation was leaked in recent days, and it is clear that the federal government is pushing to have this legislation put through parliament in a week or so. Therefore it is not even possible that they are using the feedback received over the last 3 months to inform the legislation – the draft they want to push through is ALREADY DONE!

SUMMARY

  • Why is this being rushed given the negative feedback and concerns of the disability community?
  • Why does it need to be rushed? Why is the federal government pushing through with finalising the contracts (already finalised) with the independent assessment organisations, where they would already have stipulated what assessments are being used, how they will be implemented, what the Key Performance Indicators and measures will be used by NDIS to assess the performance of these organizations - this type of activity takes a long time to develop.
  • It hasn’t just been in development in recent months – it is clear the federal government has had this agenda for a long time, without proper consultation with the disability community, and that they are not responding meaningfully to the concerns of the disability community.
  • Most of the information in this document is literally cut and pasted from the NDIS website media releases from late 2020 and early 2021 – it is not new information.
  • This document does not provide any further detail to support their claim of an ‘open and transparent’ approach in consultation with the disability community. The government is not responding to the disability community about the conflicts of interest evident in the organizations chosen to do the independent assessments.
  • The government is not making available the true results, raw data, from the previous independent assessment pilot.

Interestingly, in attempting to write my response to the independent assessments, I attempted to access the 2019 Tune Report document from the DSS website and when I clicked on it, it went to a webpage stating ‘Access Restricted’ – Why? Why can’t I access the Tune report? Because the government doesn’t want us to have access to it so we are unable to comment against it. However, what I do remember is this - David Tune recommended AGAINST independent assessments for current participants in any format. He also only recommended independent assessments as an OPTION (voluntary) for those

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prospective participants that do not have access to specialist and allied health professionals or reports to support their access request to NDIS. It was never meant to be mandatory or subjected to everyone on the scheme.

action

  • Please stop the government from implementing their plan for independent assessments.
  • Please don’t allow the government to move away from a NEEDS based model to a BLOCK FUNDED model.
  • Please don’t allow the government to make participants reapply over and over to a scheme designed to support people with permanent disabilities, when we have already proven we are eligible.
  • Please find a way force the government to TRULY engage with the disability community regarding improvements to the scheme for fairness and equity.
  • Please find a way to slow down the process of engagement with the disability community so we have more time to look at the governments proposals, and actions, so we can hold them accountable.
  • Please understand that participants and their carers do support change, but the changes proposed by the government are so significant that the NDIS will be unrecognisable.
  • Please don’t put me and my children through the trauma of independent assessments with a stranger.
  • Please don’t allow this to proceed so I am forced to leave the scheme (my children) to protect my own and their mental health and be left without ANY supports at all. The government has gotten rid of any other support option other than NDIS – so where do I go for help and services if I cannot cope with NDIS?

Thank you for your review and consideration of my submission.

Please contact me if you have any queries on

Kind regards