CRE-DH Centre of Research Excellence in Disability and Health
SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME’S INQUIRY INTO
~ MONASHin partnership with eRMIT APRIL 2021 NATIONAL DISABILITY INSURANCE SCHEME INDEPENDENT ASSESSMENTS – CRE-DH SUBMISSION | 1 THE UNIVERSITY OF THE UNIVERSITY OF UNIVERSITY • University I UNSWCANBERRA MELBOURNE SYDNEY
CRE-DH Centre of Research Excellence in Disability and Health
About the submission
This submission is made on behalf of researchers from the
Centre of Research Excellence in Disability and Health (CRE-
DH) funded by the National Health and Medical Research
Council, 7 April 2021.
About the CRE-DH
The Centre of Research Excellence in Disability and Health
(CRE-DH) aims to identify cost-effective policies to improve
the health of people with disabilities in Australia. There are
four interconnected research areas in the CRE-DH focused
on:
1. mapping the health inequities between Australians
with and without disabilities,
2. analysing the social, economic and environmental
factors that contribute to the poorer health of people
with disabilities,
3. modelling the cost-effectiveness of health policy
interventions, and
4. policy analysis and reform.
The CRE-DH is funded by the National Health and Medical
Research Council. We are an interdisciplinary research
group comprised of academics from five universities, a
team of international advisors and a Partner Advisory Group
of stakeholders from the disability and health sectors.
The CRE-DH Co-Directors are Professor Anne Kavanagh
(University of Melbourne) and Professor Gwynnyth
Llewellyn (University of Sydney). The CRE-DH includes
Chief Investigators from the University of Melbourne,
University of Sydney, Monash University, UNSW Canberra
and RMIT with multidisciplinary skills in epidemiology,
health economics, health and social policy, psychology,
psychiatry, public administration and public health. In
addition, we have Associate Investigators from a range
of national and international universities and the World
Health Organization. We work in collaboration with key
stakeholders including DSS, ABS, AIHW and peak bodies
in the disability advocacy and service sector through our
Partner Advisory Group. Several members of the CRE-DH
research team and the Partner Advisory Group also have
lived experience of disability.
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Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments
Our submission to the committee comments on a) Productivity Commission report
issues in relation to a range of the terms of references and Tune Review
outlined for this inquiry. We are concerned that the
introduction of Independent Assessments (IAs) will be The blueprint for the NDIS, created by the Productivity
damaging to current and potential NDIS participants Commission (PC)(1), has been used by the CEO of the NDIA
and the ‘consultation’ process on this policy has not to support the use of IAs. We contend this is a misreading
been consistent with the core principles of the scheme of the document. The PC said assessors should be
including co-design and choice and control. IAs have been independent (e.g., health professionals and allied health
justified on the basis that they will lead to consistency care workers, not government contracted professionals).
and therefore be more equitable, concentrate function The concern for standardisation in the PC design was not
rather than medical diagnosis, and Scheme sustainability. with assessment, but rather what follows. That is, once
We believe that they fail on all these objectives and that materials had been collected by potential participants the
their use will exacerbate inequities in practice. process of assessing these reports is standardised.
Against this background we are calling for: The clause within the PC blueprint used to justify
IAs similarly covers all medical professionals already
- A halt to the implementation of IAs providing reports for NDIS participants. At present,
- A commitment to release pilot data collected to date applicants submit evidence from medical professionals including how they were used to determine funding and specialists. The CEO of the NDIA has stated in his outcomes submission to the JSC that these professionals may
- A commitment to co-produce any future functional have ‘sympathy bias’(2), while IAs will not. There is no assessment component of the scheme and its reason to think that these highly trained professionals evaluation with people with disability and other have a ‘sympathy bias’ and are not independent. One stakeholders with expertise in the area including could argue, in fact, they are more independent than a academics and allied health professionals contractor working for the NDIA who feels accountable to that body and not people with disability. • A commitment to rigorous evaluation of functional assessments against their purpose of allocation of Similarly, the CEO of the NDIA uses the Tune Review(3) to budgets for reasonable and necessary supports that support the use of IAs stating that the review reinforced meet participants’ goals the importance of implementing more equitable
- A commitment to not use functional assessments as assessments to support consistency in decision making. the sole (or main) basis of funding decisions We return to the issue of equity and consistency below,
- A commitment to determining ‘reasonable and but here simply note that the process surrounding the necessary’ support on the basis of individual goals assessments proposed in the Tune Review differ from
- A commitment to promoting equity through those being suggested in the current reforms in some investment in advocacy and development of important ways. Specifically, there is: a lack of co- culturally appropriate services in areas of need. design and proper consultation; a lack of discretion in independent assessments to ensure they are consistent with the NDIS Act; and, a lack of protections such as a participant’s right to challenge assessment results. These ToR 1: The development, modelling, reasons aspects are crucial in ensuring that this process operates and justifications for the introduction of as an effective functional assessment and not simply as a independent assessments into the NDIS cost-cutting measure. Further, release of the draft Tune Review report, accessed under Freedom of Information, A number of justifications for IAs have been made. suggests that the chapter on IAs was not part of the report These include that: a) that they appear in the original authored by Tune, but inserted by the Commonwealth Productivity Commission report and the Tune review; government. b) lead to consistency and therefore are more equitable; c) they take the environment into account; d) they b) Consistency and equity concentrate on function rather than medical diagnosis, and e) they will support Scheme sustainability. Minister Robert has argued that the introduction of IAs will make the process of applying to the NDIS and receiving a plan, “simpler, fairer and more consistent for participants, and their families and carers”(4). While we would not disagree that the NDIS has a number of 3
inequities within it (see, for example, 5, 6, 7), we do not believe about scheme costs, IAs may seek to exclude individuals the picture is a simple as has been portrayed in the media from the Scheme or particular supports or award smaller by the Minister where he has compared different urban and funding plans. However, while this might reduce scheme regional and rural areas in terms of plan size(4), when there costs, it will likely result in increased costs in other areas are many reasons why we might see these differences such of government spending, e.g., health, education, welfare. as people with more complex disabilities moving closer These unintended consequences and costs have not been to services and concentration of high-intensity supports assessed. such as Supported Independent Living in these areas. The statistics that are currently being presented are misleading ToR 2: The impact of similar policies in other and do not compare ‘like with like’. We urge the JSC to jurisdictions and in the provision of other look into this more carefully before accepting these government services arguments at face value. The critical issue may not be plan size, but utilisation of plans which requires a much It is of note that there is no other disability system in the different response than IA – it is about improving access to world that adopts such an approach. This is, in part, a result services and empowerment of participants to use them. The of the fact that there are no tools (or suite of tools) that are latest data from the NDIA shows for example, the average accurate across all groups that have been designed for this utilisation rate for East Arnhem is just 33%(8). While there purpose. The only analogous processes that we have been are a range of good reasons why utilisation rates will likely able to identify in our research are the processes that have never be 100%, been taken around the world designed to move individuals there are a significant proportion of areas within the off benefits such as the Disability Support Pension. We only country where these rates hover around the 60-70% need look at experiences in the UK or the US to see that mark. This shows that even if allocated budgets there are functional analyses linked to benefits has caused extreme significant inequities in the ability to spend these. It is also psychological distress for individuals and led to a large possible that IAs are likely to favour those who know how to amount of preventable harm(12, 13). present their case to a government contracted official and operate within a specific administrative framework (9). ToR 3: The human and financial resources needed to effectively implement independent While on face value consistency might seem fair, there are assessments major problems with this approach. Consistency is defined as the ability to get close conformity across different The case has been made that the use of IAs will cut down population groups (e.g., across different ethnic groups) on the costs for participants and their families in gaining (10) when using instruments such as those proposed by the access to the scheme. It is true that at the moment there NDIA. It is unknown at the moment whether functional can be significant costs incurred in gaining evidence assessments meet this criterion although given what is from clinical professionals to prove eligibility for the known about use of instruments such as these in other scheme. But, the introduction of IAs does not remove this contexts it is unlikely to be the case. (See ToR 5 on the need. Prospective applicants will still need to prove their appropriateness of the tools and ToR 10 on appropriateness eligibility for the scheme before they will be referred for across different groups for further elaboration on these an IA. While the system will remove the need for gaining critical issues). functional assessments, potential participants will still need to gain medical/clinical evidence within the new system c) Environment and functioning to demonstrate they meet eligibility criteria, and this may One of the major arguments the NDIA have put forward be potentially more onerous for those who currently have for these instruments is that they are consistent with the impairments included on access lists that will disappear internationally accepted framework for conceptualising with the introduction of the new system. If the concern is disability – the WHO International Classification for about the costs borne by some in accessing the Scheme, Functioning, Health and Disability (ICF)(11). The ICF shifts then there are a range of alternatives that might be thinking about disability away from medical diagnoses to introduced such as a new Medicare item for assessment functioning. However, it is not at all clear how the NDIA is purposes. using the selected tools to capture the ICF domains (e.g., body functions and structures; activity; and participation There will be considerable human and financial resources – referred to as functioning), as well as contextual factors needed to effectively implement these tools. At present including personal and environmental factors. As the tools much of the functional assessment work is gained were not designed with the ICF in mind it is difficult to see by individuals either through paying professionals to how they can be used to capture the ICF components. undertake this work or receiving this through services In particular, it is not clear how the environment will be paid for by other parts of government (e.g., health). This assessed. will significantly increase costs to the scheme, as we have seen in the maximum amounts of money slated d) Scheme sustainability for the organisations contracted to deliver IAs. It is also Given that IAs are driven, at least in part, over concerns important to note that the professionals undertaking these 4
assessments are allied health workers and there is already instruments’ or with the independent assessors they a well-documented shortage of these workers within the employ to undertake them (see ToR 4 response). system. Critically even if it were possible to achieve high reliability ToR 4: The independence, qualifications, and consistency, the suite of tools proposed are not valid training, expertise and quality assurance of for the purpose for which they are proposed to be used. assessors Validity refers to the instruments being able to measure what they purport to quantify — in this case budgets that The NDIA propose to use allied health professionals to do enable participants to meet their goals. These instruments these assessments however it is not necessary for the allied have never been used to for the allocation of individualised health professional to be specialised in the area which the budgets before and their validity is completely unknown assessment is focussed. For example, a physiotherapist and was not assessed in any of the research conducted may administer the Vineland or a psychologist the Lower thus far. From our perspective, the NDIA has not Extremity Function Scale. Many of the instruments are considered this fundamental issue of validity conflating designed to be undertaken by clinicians specialised in this psychometric property with reliability. An invalid the field. We are aware that participants and families instrument (or suite of instruments) can be reliable who have already undertaken these assessments have and consistent across different groups – it may just be indicated how underqualified many assessors were to consistently wrong. assess functioning in areas outside their expertise (e.g., physiotherapist assessing speech). There are no quality In the NDIA paper IA Selection of Assessment Tools (14), assurance processes in place where performance of page 19 states that “details from the assessment suite are individual assessors is assessed. Given the lack of an considered collectively and with reference to the person’s appeals process, there is no recourse if an assessor makes particular circumstances.” It is therefore unclear how the inaccurate assessments. Furthermore, participants report assessment tools will be combined and, for example, if this the dismissal of information on functioning provided by the is systematic, how are the tools weighted and combined? If person with disability or families and carers and that data this is done, then if someone scores highly in one domain is collected from observation with little understanding of but lowly in another it may not be evident that they need how the functioning is influenced by the environment (e.g., support (e.g., much higher on receptive vs expressive home, community). communication).
ToR 5: The appropriateness of the assessment b) Independent Pilot Evaluation
tools selected for use in independent
assessments to determine plan funding Details of the pilot evaluation are sparse. However, based
on available information it appears the evaluation was of
We have serious concerns about the tools that have been relatively low quality and did not assess the impact and
selected, the process for selecting them, and the evaluation outcomes of the IAs in terms of the purpose of IAs. Firstly,
conducted by the NDIA. there was no control group. If the NDIA wanted to make
evidence-based decisions, then the most effective way
a) Selection of tools to underpin an IA policy would have been to undertake
a Randomised Controlled Trial where individuals opted
The NDIA’s report on the development of IFAs and selection into the process. Secondly, the numbers involved in
of tools acknowledged there was no single tool that could piloting the IAs were not adequate given the diversity of
be used as the basis for funding decisions(14). Therefore, they participants across a range of domains (e.g., age range,
decide to look at tools available ‘off the shelf’ i.e., designed impairment type, ethnic background). Only 145 surveys
for another purpose (e.g., LEFS – clinical tool for monitoring were done with participants and they simply assessed
of progress in rehabilitation) and look at whether they satisfaction with the process rather than against the aims
cover the areas they need and whether they have good that IAs were purported to deliver (e.g., equity, appropriate
psychometric properties (i.e., reliability, validity). While budget). Thirdly, the most important outcomes were not
the tools may have good psychometric properties for the assessed. We do not know if the IAs led budgets that funded
purpose for which they were designed this does not mean reasonable and necessary supports that aligned with
they are suitable for the purpose the NDIA is using them for. participants goals and whether they led to better outcomes
for participants in line with participants outcomes
The NDIA argue that the chosen tools are reliable. framework. We cannot know whether the IA led to better
Reliability refers to “the degree to which the results outcomes without an appropriate control group.
obtained by a measurement procedure can be replicated”
(10). Lack of reliability may arise from differences between The NDIA claim that the validity of the process was tested
observers or instruments of measurement or instability through a small number of focus groups and interviews,
of the attribute being measured. The NDIA argue the which is not a robust approach for this purpose. Further,
instruments they have chosen are reliable, however there was no attempt to determine whether IAs led to
we do not know whether they are reliable as a ‘suite of equitable decisions and there is no mention at all of
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disadvantage in the evaluation. At best the evaluation an individual’s needs. Two individuals with the same might be able to make some determination around level of function may have very different determinations the feasibility of IAs, but there is no data to make any of what is reasonable and necessary for what they aim evidenced statements about outcomes. From the to achieve. information presented so far on the second pilot it is not clear than any additional information is being collected ToR 8: The circumstances in which a on outcomes. It seems that it is still focussed on process person may not be required to complete an (e.g., agree assessor understood their challenges, independent assessment satisfied with length of appointment). Our view is that as IAs are currently constituted they are We also note that the evaluation was conducted by the not fit for purpose for any individuals. However, there NDIA, which is not an independent process. Instead, an is good reason to assume that many aspects of the IA independent evaluation should have been undertaken process will be highly traumatic for some individuals. with the evaluation methods and outcomes defined For example, individuals with a history of sexual before the evaluation was undertaken. It is best abuse or trauma may find some of the questions very practice for the evaluation protocol to be developed confronting. As we know from the Royal Commission and approved before the intervention is implemented into the Abuse and Neglect of People with Disability, and evaluated. This prevents ‘cherry picking’ the this is a significant proportion of people with disability. reporting of results. In addition, many people with disability have had negative experiences of the health systems and so We believe it is unethical to implement such having assessments undertaken by someone not widespread change without rigorous independent known to them may be traumatising. It is also likely that evaluation of the effectiveness against outcomes some people with disability may be too anxious to be agreed upon by people with disability. assessed (e.g., someone with autism with difficulties with sensory processing and anxiety). We need significantly more evidence to demonstrate that IAs do no harm before we see these rolled out more broadly. ToR 6: The implications of independent assessments for access to and eligibility for ToR 9: Opportunities to review or challenge the NDIS the outcomes of independent assessments
As outlined above, we fear that the introduction of As we outlined above, one of the ways that the
IAs will make this a more challenging process for proposed system differs from the Tune review is in
many on the scheme. At present those who have respect to the discretion afforded around the results of
impairments on access lists have a relatively smooth functional analyses and the development of a plan that
entry to the scheme. For example, an individual who is is in line with the NDIS Act. What this in effect notes is
deafblind needs confirmation by an ophthalmologist that a functional analysis may not always be a good
and audiologist that they have permanent and severe indicator of the level of supports that an individual
impairment of visual function and hearing. Under the requires to realise their human rights. The NDIS Act is
new system, this individual will be required to undergo quite clear about the need to support individuals to the
an IA and likely with a professional with little experience “full extent of their capacity” and as the Tune Review
of deafblindness. Moreover, if inaccurate assessments notes, this may mean that there is a need for discretion
are made of functional ability, as we believe there is with respect to the outcome of a functional assessment.
great potential for as outlined above, then fewer people The proposed system does not allow for challenge of
will receive funding through the scheme and/or receive IAs and given that this will be used to determine funding
smaller plans. Further, the changes do not reduce the then this is highly problematic and will likely leave
need for individually funded reports completely as individuals with smaller packages that do not allow
individuals will still have to prove they are eligible for them appropriate support to achieve their goals to the
the scheme in order to be assessed. full extent of their capacity.
ToR 7: The implications of independent ToR 10: The appropriateness of independent
assessments for NDIS planning, including assessments for particular cohorts of
decisions related to funding reasonable and people with disability, including Aboriginal
necessary supports and Torres Strait Islander peoples, people
from regional, rural and remote areas, and
As the proposed system divorces functional people from culturally and linguistically
assessments from planning processes where goals are diverse backgrounds
established, this means that decisions about what is
reasonable and necessary are not linked to funding. If We do not believe the suite of tools are suitable for
we do not have any sense of what an individual’s goals any population groups. However, it is likely they are
are then it is not possible to determine what supports less suitable for particular groups such as First Nations
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Australians and different ethnic groups. It is critical that the tools are known to be valid across all the participant groups. There is scant information of the validity of the tools across the groups. For example, even if tools are translated into languages other than English it is not clear that the nuanced meaning of questions will be retained.
ToR 11: The appropriateness of
independent assessments for people with
particular disability
IAs may be less suitable for particular groups especially
for people with fluctuating disability (e.g., multiple
sclerosis, some psychological conditions) because
needs will vary at different times. Participants may end
up being short of funds at a time they need them most.
Conducting functional assessments can be challenging
even when a person knows the professional. Professor
Kavanagh reports this in relation to her own son, where
despite numerous attempts, his OT was unable to
complete a functional assessment because he was not
willing to cooperate with the process and requests to do
so made him extremely anxious.
In sum, we believe Independent
Assessments should not be implemented
because they have not been developed for
the purposes for which they are being used,
will not be aligned with the goals and needs
of individual participants, will not achieve
equity, will cause significant distress
among participants, and may result in
shifting costs to other systems (e.g., health,
welfare).
Professor Helen Dickinson, UNSW Canberra
Professor Anne Kavanagh, University of Melbourne
Professor Gemma Carey, UNSW
Centre of Research Excellence in Disability and Health
(CRE-DH)
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REFERENCES
1. Australian Government Productivity Commission. Disability Care and Support: Productivity Commission Inquiry
Report. Melbourne: Productivity Commission; 2011.
2. Department of Social Services and National Disability Insurance Agency. Joint submission to the Joint Standing
Committee on the National Disability Insurance Scheme’s inquiry into independent assessments. Canberra:
Department of Social Services; 2021.
3. Tune D. Review of the National Disability Insurance Act 2013: Removing red tape and implementing the NDIS
participant service guarantee. Canberra; 2019.
4. Robert S. New data shows how a simpler, faster, fairer and more flexible NDIS will benefit all of Tasmania 2021.
Available from: https://ministers.dss.gov.au/media-releases/6816
5. Warr D, Dickinson H, Olney S, Hargrave J, Karanikolas A, Kasidis V, et al. Choice, Control and the NDIS. Melbourne:
University of Melbourne; 2017.
6. Carey G, Dickinson H, Malbon E, Reeders D. The vexed question of market stewardship in the public sector:
Examining equity and the social contract through the Australian National Disabiity Insurance Scheme. Social Policy
& Administration 2018;51(1):387-407.
7. Cortese C, Truscott F, Nikidehaghani M, Chappie S. Hard-to-reach: the NDIS, disability and socio-economic
disadvantage. Disability & Society 2020.
8. National Disability Insurance Agency. The NDIS Market Insights Dashboard. Geelong: National Disability Insurance
Agency 2020.
9. Carey G, Crammond B, Malbon E. Personalisation schemes in social care and inequality: review of the evidence and
early theorising. International Journal for Equity in Health 2019;18(1):170.
10. Porta M. A Dictionary of Epidemiology. For the International Association of Epidemiology. 5th ed. Milton Keynes:
Open University Press; 2008.
11. World Health Organization. Towards a Common Language for Functioning, Disability and Health ICF Geneva: World
Health Organization; 2002.
12. Stewart M. Psychological tyranny prescribed by the DWP: preventable harm is government policy. British Journal of
General Practice 2018;68(677):579.
13. Shakespeare T, Watson N, Alghaib OA. Blaming the victim, all over again: Wadell and Aylward’s biopsychosocial
(BPS) model of disabiity. Critical Social Policy 2017;37(1):22-41.
14. National Disability Insurance Agency. Independent assessment: Selection of assessment tools. Geelong: NDIA
2020.
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Centre of Research Excellence in Disability and Health CRE-DH Centre of Research Excellence in Disability and Healtl 0