JSC Parliamentary Inquiry NDIS Independent Assessments

NDIS Independent Assessments Will Exacerbate Inequity

Shirley Humphris - 18/3/21

Thank you for the opportunity to address this Inquiry. I am the grandparent of a child with complex, intense needs who has been a participant since July 2013. My family have had traumatic dealings with NOIA, and Independent Assessments will not fix these many problems. It is likely to become much worse.

I have addressed this submission with reference to the Minister’s public statements of equity and consultation and the hidden agenda of cost cutting. I will show that the Minister statements are very misleading and briefly address that cost saving to NDIS is not the same as taxpayer saving.

Summary:

The Independent Assessments (IAs) will increase inequity.
The IAs are inaccurate and may be harmful
Professionals are likely breaching their code of ethics/conduct to administer clinically flawed, potentially harmful tests, and with the intended use of their report that lacks transparency
The “savvy” may practice the now on line tests - inequitable and may undermine the sustainability of the scheme.
There will likely be further strain on Internal and External Appeals
Those with means and capacity are more resourced to appeal the plan.
Top-Down standardised plans that are underfunded are not mitigated by flexibility.
Tune Report did not suggest IAs without safeguards in place.
The Productivity Commission looked more to the economic benefit of NDIS and required an adequate, appropriate test tool before IAs are implemented.
Early academic consultants recommended other evidence is used as well as IAs, but NOIA indicate they will not do so.
IAs will cause damage to the economy, as well as human cost
NOIA consultation was, and still is, deceptive and not considering true equity

What about Fair and Equitable?

Minister Robert has repeatedly stated that the Independent Assessment will be fairer and will decrease inequity. The Minister has cited lower plan values from low socioeconomic areas as a reason for IAs. Leaving aside the data collection and analysis of whether the areas noted have other factors that explain the discrepancy, I will focus on taking the claim at face value.

There is undoubtedly much advantage to being educated, having capacity and not being in poverty, especially when dealing with government departments.

My family are the “savvy”, in the Minister’s media words. I have no legal qualifications or background, but enough education and capacity to scrutinise the relevant parts of the NOIS Act; The FOi Act; The APS Act; the Carers Recognition Act; the relevant UN Conventions and other research information for my family advocacy since 2013.

We have fought and won two Australian Administrative Tribunal (AAT)appeals, 2015 and 2017 for mostly the same supports. Both were 3-day hearings, with barristers for us and for NOIA Legal aid for us (government expense) and NOIA expense. Both were expensive outsourced corporate barristers.

We do not intend our advocacy will diminish in effort if the plan is underfunded with an IA What will change is that we may now need to self-fund all the required multiple assessments from the speech therapist, physiotherapist, occupational therapist and music therapist. We could do this whereas others disadvantaged, could not. Currently the plan is funded for appropriate reports. If participants are self-funding reports for planning, as the Minister claims, it is because NOIA are not applying their Operational Guidelines (OG)on planning that states NOIA requested reports are funded. See appendix.

https://www.ndis.gov.au/about-us/operational-gui deli nes/pl an ni ng-operational-gui deli ne/pl an ni ng-operalional-guideli ne- performi ng-support-needs-assessmenl#8.3

For access, true functional assessments from an appropriate therapist or therapists, could be Medicare funded with a doctor’s referral of permanency.

Cost to participants, of reports is not good reasoning to provide this “free” potentially inaccurate, brief one-stop- shop as a solution. The tests were never designed for funding.

The greatest NOIS inequity will come later when those, like ourselves, that have the resources and capacity, proceed to full external appeal. So, a “savvy” participant will need to fund their own proper assessment/s. However, the assessment/swill likely not be considered by NOIA either in the plan or an internal review (the CEO was evasive in on this topic of report weighting from previous Inquiry questioning). He has stated that there will be “no need” for other reports, that the IAs will be “holistic”. NOIA state it is not possible to appeal the assessment, only the plan decision. Participants will not even be given the full assessment to view.

Those in poverty; those without education to be able to research; those with cognitive or intellectual Impairment; those exhausted with carer burnout; those without family support; those who are disadvantaged CALO; those who are disadvantaged indigenous; those unable to push for or self-fund legal and advocate support; will inevitably slide further down the scale of funding value plans. Why funding value effect? - because we know these IAs are unfair and inaccurate according to professionals. The situation could become worse and worse. Participants are likely to be less and less supported more and more inequitable. The NOIA has missed the point completely - equality of test application is not aiding equity

The only way is to argue the IA against the participants own evidence is at AAT As did Ray, Arn el, Liddle, Schwarz and Stephenson, who all mn against inaccurate NOIS Independent Assessments. However, the distressing process currently takes around 2 years.

We cannot know yet the extra load on the already stretched appeals system, internal and external, with likely many more plans being underfunded if the basic driver is inaccurate.

Inaccurate and therefore Inequitable IAs

Space does not permit the full analysis of why the IAs will be inaccurate and could be harmful. Professionals have provided referenced submissions. Importantly NOIA have offered no evidence for the use of these tools out of their approved context, or the qualifications of the person or persons who approved the compilation of tools as valid.

The WHOOAS at least has been altered by NOIA rendering it invalid in itself The JSC is asked to request the evidence and author/s appropriate qualifications of the tool compilation and adaptation.

I ask the JSC to disregard any claims that do not have robust evidence including their dubious evidence of “sympathy bias” where n=only 29, intellectually disabled surveyed, ratings by support workers not professionals. This study showed higher disability rating when the rater knew that the support was related to funding, but the sympathetic IA assessor will similarly be aware that the assessment is related to funding so a rather spurious reference on all counts (Rater bias and the measurement of support needs 2006 Roma Guscia1, Julia Harries, Neil Kirby, Ted Nellelbeck October 2006 Journal of Intellectual & Developmental Disability 31 (3): 156-60)

NOIA have cited consultation, but Speech Pathology Australia released a statement that indicates the Allied Health Consultation was misinformed as to how their consultation was used. Worryingly NOIA told them some aspects were already decided and unavailable for comment Allied Health true consultation and agreement is arguably crucial to implementing the tools.

https //www.speechpathci ogyaustral ia.org.au/SPAweb/Resources for Speech Pathol ogists/NDIS/ND IS Update Indepen dent Assessor s Project.aspx?WebsiteKey=fc2020cb-520d-405b-af30- gc7f70f848db&fbcl id= lwAR3JgJk8mkJ6BovR6tKWz61dl6S9a5mZcgXOUVLhByl mANuj FyBScEEU1Jg

There is inequity of type of disability too, as there are those who cannot identify, understand or even recognise their need, and the unfamiliar assessor cannot be expected to pick up nuances of the true disability in a short tick box assessment There will be a greater gap than ever.

The mandatory support person accompanying to complete the Vineland, in other room, may have varying expertise and experience, or even an adverse vested interest and is a factor of inequity as different participants may have differing support This method also has privacy issues and a patronising approach. It is compulsory despite being an inappropriate test tool for many. The tools are inappropriate for some and appropriate tools for others are not on the list - other organisations and professionals have covered this inaccuracy

The assessment tools are restricted access to qualified professionals in order to preserve validity. The questionnaires can be found online, however, by the “savvy” in order to “practice” before the assessment, such is the mistrust of an accurate outcome. Encouraging of “deception”, is by NOIA themselves, because of the real doubt of a fair go of equity The unethical here is the NOIA with their probable “Robo Plans”. Will we even see the IA coach in future?

Bruce Bonyhady, NOIS ex chair, in his submission to the Agency, considers the effect of those that know the right assessment answers to give, to maybe undermine the sustainability of the scheme. hhttps://www.abc.net.au/news/2021-03-18/ndis-architect-bruce-bonyhady-slams-independent- essessments/13256160

Importantly the assessor will not be matched to disability (“because we all ask the same questions” according to one assessor). An inequity of potluck assessor qualification. There have been several reports of physiotherapists assessing Autism, which is likely an AHPRA breach by operating out of scope of practice. Similarly, a psychologist should not assess a person with only mobility issues. Those with several disabilities will not have a hope of an accurate assessment, with only one assessor of random allied health qualification. Professionals are

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likely breaching their professional bodies code of conduct/ethics administering these assessments that are known inaccurate, potentially harmful, and of dubious use by NOIA

top-down plans are inequitable to need

top-down plans are proposed by NOIA and based on the IA as the primary driver of the plan. This funding model disregards the Objects and Principles of the NOIS Act of individualised plans and by NOIAs own admission, flies in the face of applying s34 of the NOIS Act in measuring supports against these criteria of s34, the cornerstone of support decision making There will be no reasoning given of why support is approved or denied

This means that in the future, a participant’s plan will no longer be based on individual decisions about each and eve.ry support based on the current reasonable and necessa.ry criteria of Section 34 of the NDIS Act. Planning Policy for Personalised Budgets and Plan Flexibility NDIS Website

A change to the draft budget will only be made in specific circumstances, including where:

a participant has extensive and/or complex support needs (for example where a participant has substantial behavioural support needs, a plan is expected to be of extreme high value, or a participant requires increased temporary support in response to an emergency)
there are additional high cost supports required that are not accounted for in the independent assessment. These supports include Specialist Disability Accommodation, high-cost or complex assistive technology and home modifications. Plans with personalised budgets will be more flexible, with funds released at intervals Planning Policy for Personalised Budgets and Plan Flexibility NOIS Website

Clearly the stated planning meeting is not individualised planning, with such a high bar for adjusting the plan. The intention of the new pathway is to take the likely inaccurate, standardised (not individualised) result of the independent assessment to produce the “draft plan”. It is not even certain if any assessor comments will be noted or will just raw scores from tick box questionnaires be used? Independent Assessors cannot recommend supports, this is likely now the job of the computer algorithm and the delegate, but there has been no transparency of this plan development process. This so-called planning can never be equitable to need. “Personalised budget” is a disingenuous term.

AAT Castledine vs NOIS did not agree with a delegates decision overriding individual professional reports. Note the comment regarding the importance of the knowledge of the participant.

293 Ms Parsons, a senior employee of the NOIA, who admittedly holds impressive qualifications and has had significant work experience in the disability sector, expressed a view about what was appropriate for Mr Castledine as part of proposing an integrated MDT support. However, the Tribunal does not accept Ms Parsons’ evidence as it relates to how many hours of speech therapy or occupational therapy are required by Mr Castledine, primarily, because she is neither a speech pathologist or occupational therapist, and also because she has never had the opportunity of making direct observations of Mr Castledine and his present ability to communicate with others and to undertake activities of daily living.

There is no advantage of a flexible plan if it is underfunded

Early consultants’ statement

’The ’framework recognises that assessment must combine quantifiable information obtained using scientific standards with the expert knowledge ofpeople living with disability and the families and professionals who know them.“ Dr Madden and Professor Glazier. From the press release on the website 20/9/20

Why was this additional evidence requirement noted by Madden and Glozier, quoted in September, but omitted from the OSS /NOIA submission to this Inquiry? Is it because NOIA have no intention of using other evidence in plan building for equity? Note the IAs do not even meet scientific standards.

Compare with the CEOs statement of other reports being “unnecessary’ and the /As ’holistic”. The question of “weighting” of the participant’s own reports was given an evasive response by the CEO at the JSC questioning, ot in line with consultants Madden’s and Glozier’s opinion.

The experts quoted extracts are more on the ideology of the Framework rather than the specifics of the IAs. These IAs do not align with that ideology.

Tune Report

The Tune Report has several good recommendations for reform of NDIS problems but did not recommend IAs in the proposed form. NOIA would do well to address the whole Tune report recommendation not cherry pick and misrepresent. Other submissions have considered the misuse of the Tune report for IAS in the current form.

Productivity Commission

A coherent package of tools (a ’toolbox) should be employed to determine the support needs and funding for a person covered by the scheme. Different tools would be suited to particular needs for support (for example, the need for aids and appliances compared with attendant care). Any tools used by the NDIS should be rigorous, valid (testing what they purport to), reliable (giving consistent results) and cost-€ffedive. (PC 2011 7 Key Points p305)

The different tools for need; rigorous; valid; and reliatje, are not meeting this recommendation of the Productivity Commission, according to allied health professionals.

Importantly the Productivity Commission looked beyond costs to the broader economic benefit of disability support.

The certain cost cutting drive of IAs will likely see cost shifting to health, hospitalisation and more expensive residential care, relinquishment of children, and other State services. There is concern, if other services are still able to cope given much funding was handed over to NDIS.

Then there is the loss of employment of the disabled, their carers, and the disability support sector, just when the economy badly needs the input of employment and spending. Sadly, loss of support, especially for disabled young people and children further reduces capacity with more inequity, a tragic human cost as well as a failure of an economic view that lacks foresight.

The Independent Assessment Pilot

Satisfaction with independent assessments

In the first pilot, 91% of participants or their representatives were either satisfied or very satisfied after with their IA appointment (n=126).
Al most all (99%) felt that the assessor was professional and
around three-quarters felt that the assessor was familiar with their disability (72%).

Only these three responses were released publicly - NB 28% were unfamiliar with the disability

The full survey questionnaire was obtained from FOi. I have asked for, by FOi, analysis beyond that publicly available, including submitting an FOi internal review. I was told they are unable to find documents. It seems very odd to only analyse a few questions on a survey

“Consultation”

Another of the Minister’s claims is that of consultation. Yet there has been no report of whether the consultation has been in favour or against the IAs in the proposed form.

Consultants Madden and Glazier were misrepresented
The full analysis of the 1st Pilot has not been released, that is not consultation.
The second Pilot of vulnerable people has never been scrutinised by an ethics committee: this is not good consultation.
The Allied Health Consultation was misled with their Sept. consultation.
The over 900 participants, advocates and professionals that sent recent submissions to NOIA were treated with such contempt, that tenders were released 3 days after the closing date.
The Minister has announced he has no intention of waiting for the recommendations of this Committee before presenting the legislation change to parliament

The consultation process throughout has been to consistently disregard and/or misrepresent input from stakeholders.

I ask the JSC to fully question NOIA claims for evidence and statistics for their claims.

I ask, that with the overwhelming problems cited by so many, that these independent assessments be abandoned in the current form.

The only assessments that should be considered are those that are appropriate to the disability and have the application of the current operational guidelines on requesting assessments.

Appendix

Current Operational Guidelines

8.3

The NOIA will only request further information or require a participant to undergo an assessment or examination where it is reasonably necessary to prepare, or decide whether to approve a statement of participant supports. For example, the NOIA may consider it necessary to make one of the requests outlined above for participants with very complex care needs.

Also, before requesting further information or requiring that a participant undergo an assessment or examination, the NOIA will review existing information. Where existing information is inadequate or inconsistent, for example where older assessments do not accurately reflect a participant’s current support needs, The NOIA will consider making one of the requests outlined above.

The power to request information or to require a participant to undergo an assessment or examination MUST be exercised carefully and in accordance with the objects and general principles in the NDIS Act.

The NOIA may prepare or decide whether to approve the statement of participant supports before all the information or reports are received but MUST give the participant a reasonable opportunity to provide them before making a decision (section 36(3)).

Where the NOIA has made a request that a participant undergo an assessment or examination, the NOIA will support the participant to comply with the request by providing assistance, including financial assistance where appropriate (section 6).

The NOIA will not reimburse participants for any costs associated with obtaining assessments or examinations which were not directly requested by the NOIA. For example, costs incurred relating to reports, assessments or examinations which were previously obtained for other incidental purposes.

8.3.1 ADDITIONAL CONSIDERATIONS FOR REQUESTING ASSESSMENTS OR EXAMINATIONS

In deciding whether to request that a participant undergo an assessment or examination, the NOIA will consider:

how the assessment or examination will assist in preparing, or deciding whether to approve a statement of participant supports, including the nature of the information the report is expected to produce;
the costs and benefits of the assessment or examination. For example, the direct and indirect costs to the NOIA, the participant or their carers compared with the benefits associated with clarifying support needs which are not readily identifiable or obtaining recommendations relating to the types of interventions which may assist the participant;
the type of assessment or examination that is most relevant to the participant’s needs and which is most likely to produce the information needed to prepare, or decide whether to approve a statement of participant supports;
the independence and objectivity of the assessment or examination, for example, avoiding conflicts of interest when selecting a specialist assessor for the participant and
the specific information to be requested from the person performing the assessment or examination.