NDIA Accountability Project

Concerns about assessment tools for participants with Muscular Dystrophy

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Submission to the Committee on the NDIS

Regarding Independent Assessments

My name is Michael Lang. I live in Newcastle NSW and have been an NDIS participant since its initial trial in December 2013. I have Muscular Dystrophy, which in my case was a late onset condition first manifesting itself in my mid 40s. It is a degenerative condition characterised by loss of function in muscle groups necessary for gross motor activities. I am now reliant on my power-assisted wheelchair and hoists for bed and car access.

The NDIA has shown that practical and consistent implementation of the NDIS Act requires openness to further change. Operating in support of individuals while managing emerging questions of assessment, management and responsiveness to participant needs requires periodic and reflexive reviews of practice. The Tune Review of 2019 highlighted the need for evidence-based decision making, evenness of assessment and for decision making which is person-based and aimed at implementing the NDIS Participant Service Guarantee.

I want to begin my submission by pointing to the initial justification for the Government’s and the NDIA’s plan to introduce Independent Assessments.

Consistent, well founded assessment was recommended by the Productivity Commission in 2011and by the Tune Review of 2019. Mr Tune recommended independent assessment for entry and life-stage planning purposes using the best measurement tools available.

The NDIA has argued that:

“Experience has shown that where a person lives, their access to health professionals and a focus on diagnosis has led to inconsistencies in how people are assessed for the NDIS and the funding they receive” and that, because the NDIS operates on Insurance principles there is a need to “ensure that decision making for eligibility and funding is evidence based, consistent, person focused, takes a lifetime approach and is likely to give people more and better opportunities to take part in everyday life and to achieve their goals”.

Section 2.2 of the Independent Assessment Framework argues that recognising individual differences is not the same as the variability found in the quality, amount and type of information obtained for each person. Further, “Variability in assessment information available and the processes used to obtain this for the NDIS is counter-productive and should be avoided wherever possible.” The central premises to the Independent Assessment framework are that control of the assessment process is necessary to reduce unnecessary and misleading variability in methods of assessment, and that the control needed is to be found in standardised testing (the tools) to ensure comparable access and support to participants/ applicants with similar disabilities and functional capacities. The testing and assessment are to be undertaken by allied health professionals external to the Agency. Treating health professionals will not be involved in the administration of these assessment tools.

Considerations for Independent Assessments

My concerns about independent assessments relate to the suitability of the assessment

toools, the administration of those tools (who administers them and how much time is

Independent Assessments Submission

The inadequacy of the trials of the tools and the lack of transparency, accountability and fairness were allowed for the assessment).

  • Evenness of assessment is a principle Mr Tune promotes, but the attainment of that end can take other forms. It could for example use the proposed assessment tools but have them administered by allied health care professionals within the NDIA.

  • Following from the above point, the drive to appoint external or independent assessors is based on the premise that independent assessors will be needed to objectively administer the assessment tools. Those tools will be selected (have been selected) by the Agency. Surely an agency which has the expertise to delineate appropriate tests should be able to administer the same tests uniformly. There is no indication that the Agency has considered this path, but evenness and consistency are more likely when testing is undertaken by a single organisation rather than by multiple organisations with differing pools of expertise on which to draw.

  • The Agency has completed one trial of the Independent Assessments and asserts that most people involved in the first trial were pleased with their participation. The result of such a small trial sampling can hardly be considered scientific itself. A much larger trial covering a broader range of established disabilities should have predated any decision to make Independent Assessments in the current form mandatory for all applicants and participants.

  • Is it likely that the NDIA will conduct ongoing reviews of the assessment tools themselves? The justifications provided for each assessment tool amount to broad approval rather than detailed examination of the strengths and limitations of each tool and its parts. A thoroughly scientific approach to the introduction of what is called Independent Assessment would require the Agency to set out the circumstances or results which, were they to eventuate, would point to a problem with the tools, their use or the judgements based upon the data drawn from the assessments/s.

A fully accountable system of assessment would also make the applicant/ participant aware of the assessment tools and notes. The applicant/participant should also have the assessor’s report used by the NDIA delegate for planning and budget decisions. Further, beyond the open testing of method and methodology, consideration should also be given to the ownership of the assessment results. The participant IS a participant rather than a client of the NDIA, and as such should have full access to the assessment material.

The NDIA states that to avoid any lack of objectivity, testing will be done by people who do not know the applicant/ participant rather than by health professionals who have prior contact with the applicant/ participant. This will be highly problematic for many applicants and participants.

The Agency’s online material makes a point of promoting the increased access to scheme entry brought about by free assessment by independent Allied Health Professionals. However, elsewhere it is admitted that an applicant will still require supporting medical evidence to become a participant. If universal accessibility requires free assessment, and yet supporting examinations impose a cost there will still be a sector of society which will struggle to meet that condition.

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Submission 28

  • Evidence based assessment should use an internally consistent set of norms, but this does nnot mean that the same format of testing should be used for all individuals. What is
    to here is that measurement of a person’s functional capacity/ disability is \nto with an accepted set of normative principles and a sound understanding of \ o disability, both universally and in a particular context. Further, there are
    to ways to describe and measure a given functional capacity. As long as each of
    them can be verified by agreed standards and one description can be translated across
    to they should be considered equivalent.

The form of measurement used in the Agency’s proposed Independent Assessments (hereafter IAs) cannot fully map out the impact and personal significance of an applicant’s disability as the assessor cannot go beyond the set questions in the assessment\ tools. The assessment tools may be sufficient for the purpose of establishing a disability,\ but it needs to be shown that, administered in this way, they will give a full account of a\ person’s functional capacity as impacted by their disability. That is important because a worthwhile plan and the budget needs it generates rest upon the account of that capacity.\& *The Agency has indicated that the applicant/ participant may be supported during assessment by someone familiar with their condition, such as an Allied Health Professional, but that depends in part on the availability of such a person and on the extent to which that person is allowed to have input for the purpose of the assessment.\ & *While the assessment tools may be universally applied, and allowing that they are useful, \there remains the problem of the individual assessor’s interpretation of the applicant’s responses. There is no way of knowing the extent to which the participant/applicant’s response will vary due to factors like education, linguistic capacity or self-awareness, yet these factors may have an impact on what is said and how it is interpreted. In consequence there may be cases where a single assessment session or a single assessor will be inadequate for the assessment. As there is no general plan for checking the assessment the inadequate assessment can pass through to the Planner unchallenged. I am not saying that such an assessment will slip by without notice. I am saying that there is a danger that this is possible under the proposed system for assessment. * A Independent Assessor, with all good faith, diligence and sensitivity, cannot (in this scheme) confer with those already involved in an individual’s case. If this was allowed their report would be likely to paint a better picture of the individual’s experience of their disability or better understand their functional capacity. Such conferencing would allow them to look at management across time; an important consideration for improving the life experiences of many disabled people. This would be in keeping with the spirit of the NDIS Act.\ *The Agency, in its search for consistent and objective assessment, has ruled out the use of their tools by Allied Health Professionals already familiar with the applicant/participant. If the important aspect of the test regime is conformity of testing for those with like disabilities, what disqualifies the known Professional? Is it that the Agency fears a lack of objectivity or a subjective element in the resulting report? If this is a concern then the ongoing judgement and input of the same practitioners would seem to be open to concern over their capacity for objective assessment. The Agency rightly requires consistency in assessment, but this does not mean replication of some archetypal assessment experience. \ o aim is to assess all individuals using the same set of tools or tests. With the best training there will be some assessors whose interpretations or understandings vary from

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Submission 28

These of the Agency. If the Agency accepts that level of variance using external assessors why not allow the use of those tools by an allied health professional known to the applicant/participant? I suggest that this be allowed if that professional undertakes Agency training in the use of the assessment tools.

  • Related to, but developing on the points I have already made, I find it worrying that the Agency and its CEO consider that the consistency and objectivity of findings depend on the use of standard tests. It is not enough to say that, over time, the veracity of Independent assessments will be examined, lessons learned and adjustments made. The veracity of observations, their reliability, structural validity, internal consistency, and criterion validity (all required by the Agency) can be equivalent across different methods. The point of assessment is to establish disability and functional capacity, and to understand the lived experience of the participant.
  • To be true to the spirit of the NDIS Act a participant’s established disabilities should be allocated funds which adequately support the participant. To establish the amount of funding needed one must have as complete a picture as possible of the individual’s functional capacity. That however is not the only information needed to establish a budget. Equipment needs, frequency of support, types of support needed and the meeting of a participant’s goals will need to be costed. This has been done as part of the Planning process. It should continue to be determined by the Agency’s delegate after considering the results of the Independent Assessment, for while the Assessor uses standardised tests the supports needed and their costing are outside the phenomena measured by the suite of assessment tools.
  • The Agency’s examination of the nature and scope of Independent Assessments as well as their responses to questions as set out on the NDIS web site (see particularly Independent Assessment Q&A page) display a methodology which is closed. By closed I mean that it is proceeding in a way which precludes rational examination of its assumptions and justifications. The questions asked of the Agency are relevant and honest. The answers and justifications provided tend to skirt around significant points by focusing on the need for external assessment and the importance of free assessment. Answers and justifications need to address the actual question. When the question asks why the evidence of treating professionals can’t be relied upon for assessment it is dishonest to point out that the new tests will be free. If that was a principal consideration then testing could be provided by a Government subsidy at a lower cost than Independent Assessment for all. The core of this dishonesty, however is revealed when, elsewhere, it is stated that medical reports will be needed in any case before acceptance as an NDIS participant. The Agency repeatedly asks for participant feedback, but it set out the questions as though the form and process of assessment is predetermined. It doesn’t ask open questions, call for critiques or ask whether different tools may have a worth equal to those proposed. The tools are promoted on the basis that they are approved by leading academics and practicing Psychologists and are considered to be best practice. A worthwhile promotion of the tools and the method of their employment would be to show evidence for their superiority.
  • The NDIA tends to use the status of experts for support rather than setting out their arguments. While it quotes the approval of relevant experts in support of its approach to Independent Assessments the arguments and methodological assumptions underlying that approval are not shown, even in summary form.

Conclusion

The NDIA is clearly intent on outsourcing the assessment process. That outsourcing is equitable and procedurally fair using different forms of observation or measurement to reach verifiable conclusions. It is, in the end, the verifiability of conclusions which makes an assessment worthwhile. The Agency has not fully examinated or justified the need to stick to the six tools proposed.

Where existing professionals show an understanding of a participant’s capacities and disability their reporting should be relied on, whether in a yearly review or in a “life stage” review. The expense of initial and ongoing assessment for remote, poor and alternatively disadvantaged people can be met at public expense in order to bring their assessment up to the level of existing, accepted assessments. This would be a simpler and cheaper approach.

Finally, could we please stop making a distinction between a disability and a unctional capacity? The dynamic relationship between those two concepts changes over time and through changing social contexts. I suggest that the Agency starts to llook at a disability as a functional capacity requiring external support. To make a hard distinction between disability and functional capacity is to ignore the dynamic relationship and to downplay the lived significance of disability for participants.

michael Lang

12 February 2021