AQA Victoria Ltd
31 March 2020
Committee Secretary Joint Standing Committee on the National Disability Insurance Scheme Department of the Senate PO Box 6100 Parliament House Canberra ACT 200
Dear Committee Members
Independent Assessments under the NDIS
AQA Victoria welcomes the opportunity to contribute to the Joint Committee’s inquiry into Independent Assessments under the NDIS.
AQA, founded in 1987, is a member‐based not‐for‐profit organization that exists to resource people with spinal cord injuries and other complex conditions to live well. We are a registered service provider with the National Disability Insurance Scheme (NDIS) and the Transport Accident Commission (TAC).
The attached submission reflects AQA’s commitment to its members and the disability community, including those whose voices are not often heard.
Thank you for the opportunity to contribute to this important inquiry into an initiative that has the potential to greatly impact the Scheme’s applicants and participants. We would be pleased to provide further input if the Committee so desires.
Yours Sincerely
Peter Trethewey Chief Executive Officer
Submission by AQA VICTORIA Ltd
Joint Standing Committee on the National Disability Insurance Scheme
INQUIRY INTO INDEPENDENT ASSESSMENTS UNDER THE NDIS
Joint Standing Committee on the National Disability Insurance Scheme
31 MARCH 2021
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CONTENTS
BACKGROUND ……………………………………………………………………………………………………………………. 4
AQA VICTORIA’S RESPONSE …………………………………………………………………………………………………. 5
(a) The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS …………………………………………………………………………………………………… 5
(c) The human and financial resources needed to effectively implement independent assessments ………………………………………………………………………………………………………………………………………… 5
(f) The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports ………………………………………………………………………….. 6
(j) The appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds ………………………. 6
(l) Any other related matters ……………………………………………………………………………………………….. 7
CONCLUSIONS AND RECOMMENDATIONS FOR CONSIDERATION …………………………………………….. 8
REFERENCES ………………………………………………………………………………………………………………………. 9
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BACKGROUND
AQA Victoria Ltd
AQA is a member‐based not‐for‐profit organisation and a registered public company limited by guarantee. We are a quality accredited and registered service provider with the National Disability Insurance Scheme (NDIS) and the Transport Accident Commission (TAC). For more than 30 years, we have resourced people whose lives have been disrupted by injuries, illnesses, and other events, to participate in all aspects of life and contribute.
Our Purpose
AQA exists to resource people to live well.
Our Vision
An inclusive community where people have access to the resources they need to meet the challenges of change and live fully.
Our History
Formed in January 1987 from the Melbourne office of the Australian Quadriplegic Association, which had operated it as a subsidised workplace, AQA Victoria Ltd rapidly built a highly respected and peer‐ led attendant care business, established an information hub, and pioneered a peer‐support outreach service in collaboration with Austin Health.
Over the past decade we have expanded the scope of the supports we provide to clients across a broad spectrum of complex neuromuscular and other disorders. We have trained an extensive register of peer mentors and coaches, whose services are available informally and through the NDIS. We have taken our information service and bimonthly newsletter online through our Spire website. And we continue to sustain more than 400 support workers from diverse backgrounds with meaningful employment.
For further information on how we support people with spinal cord injuries and other challenges to live well and fully participate please visit: www. https://www.aqavic.org.au/services
This Submission
In keeping with our Purpose and Vision, AQA is tendering this submission to the Inquiry to ensure the Committee is fully informed, particularly regarding the views and circumstances of those living with the challenges of disability. Our submission is informed through the contributions of our staff, including those with lived experience of spinal cord injury, who are participants of the NDIS or directly support NDIS participants.
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AQA Victoria’s Response to Selected Terms of Reference
AQA VICTORIA’S RESPONSE
(a) The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS
Participant choice and control
It is difficult for NDIS participants and their supporters to understand what the justification is for enforcing independent assessments. The NDIS was predicated on “… choice and control in … the planning and delivery of their [participants’] supports” (Australian Government, 2020 p.4) and the Minister has recently championed the principle of participant choice “… The NDIS is all about choice and control” 1. Mandating independent assessments will contravene this founding principle and almost certainly tarnish the Scheme’s international reputation.
Transparency and accountability
It appears that many participants and their supporters are not well informed about the introduction of mandatory independent assessments, nor the details or likely impact. Importantly, what evidence this major change is based on is unknown; participants and their supporters upon learning of the initiative are asking simply ‘why’? 2 Questions seeking clarity include:
- What is the issue of concern driving the mandating of Independent Assessments?
- What is the evidence for the extent of this issue?
- What evidence is there that such an impactful change will resolve the issue?
The NDIA’s lack of transparency in setting rules and paucity of accountability in reporting effectiveness of the scheme has been reported on (Carey et al., 2018 p.4). Without understanding the reasons, evidence, benefits and costs of this change, participants, their supporters and the community are unlikely to have trust or confidence in the Scheme.
(c) The human and financial resources needed to effectively implement independent assessments
Overall cost versus perceived benefit
NDIS participants and stakeholders generally appreciate the need for financial prudence to ensure sustainability of the scheme. Therefore, the question arises whether the cost of conducting independent assessments for all participants, including repeat assessments where circumstances change and in response to appeals or error, will outweigh costs associated with perceived benefits. It is not evident what the cost is of the perceived issue driving the mandatory nature of this change, nor the costs of the independent assessments, their administration and on costs.
1 1 Mar 2021 Radio FIVEaa interview with Leon Byner https://minister.servicesaustralia.gov.au/transcripts 2 In contrast to rolling on an opt‐in basis
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(e) The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding
Reliability of assessments in the Australian NDIS context
Ensuring equity in assessment outcomes requires proven reliability of the instruments, tools and methods used by assessors; otherwise, a participant might receive a poor assessment dependent on the assessor rather than evidence. A useful measure in this context is ‘inter‐rater reliability’, which addresses the consistency of ratings or scores between examiners (SpringerLink 2011). While the NDIA states that the instruments or tools used in assessments have acceptable validity, no measure of reliability across assessors in the Australian context of the NDIS appears evident. Also not evident are the method for incorporating multiple instruments or methods, and the validity of the resulting aggregate assessment.
(f) The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports
Risk of a ‘one‐size‐fits‐all’ approach
Contracted allied health practitioners will not necessarily have a good understanding of disability. Even within a designated disability type, such as spinal cord injury, individual circumstances and functional capacity can vary substantially and over time. Accurate assessment of functional capacity requires consideration of various contexts, circumstances and ‘worst case scenarios’ for participants. A static, point‐in‐time, standardised assessment by a practitioner with no history or rapport with the participant, is less likely than assessment by a participant’s regular practitioner to produce an accurate or complete appraisal of functional capacity where there is complex or compound disability.
For example, while the opportunity to have an independent assessment in the participant’s home is intuitively appealing, the home’s familiarity, security or utility can mask functional deficits evident in other environments. An assessor unfamiliar with the participant’s history could misconstrue their functional capacity if based solely on information or activity in a single context.
Studies have questioned and revealed shortcomings in standardized assessments of health, wellbeing and function (for example: Carr & Higginson 2001; Wilson et al 2013; Tenorio et al 2014). Results generally highlight the inadequacy of standardised assessments to account for individual or unique circumstances.
(j) The appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds
Participants highly likely to be disadvantaged through mandated independent assessments
AQA’s support co‐ordination service has grave concern for participants whose first language is not English, including First Nation Australians. This cohort are likely to use a health practitioner who speaks their native language or can otherwise effectively communicate with them. There is a serious risk that shifting communication to an interpreter, who is unlikely to understand NDIS terminology or complex medical concepts, could result in misinformation or incomplete answers in the assessment. Even those not using an interpreter will likely find it more difficult to inform the assessor adequately compared
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to their regular health practitioner. Other cohorts who could suffer due to an unfamiliar assessor are those with severe hearing or vision impairment.
The understanding, patience and rapport that a regularly engaged health practitioner can provide to participants who are introverted, lack self‐esteem, are disenfranchised or have cognitive or intellectual challenges is unlikely to persist under the independent assessment regime. Feedback indicates that some participants will not be able to communicate effectively or participate with an assessor unfamiliar to them (ABC 2021a; ABC 2021b). This is in line with concerns expressed by AQA’s support staff.
(l) Any other related matters
Participant wellbeing
Many existing participants are likely to be distressed at the prospect of losing their current health practitioner, who understands their functional capacity across multiple contexts, as the assessor of their needs under the NDIS. AQA feedback suggests that some participants will fear being not believed by assessors who do not know them, or will dread having to recapitulate details of their impairments to a stranger (EAC 2021). Participants whose first language is not English are likely to experience high levels of anxiety in attempting to accurately portray their level of function to a stranger who does not speak their native language, or to an interpreter not versed in NDIS terminology and concepts.
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CONCLUSIONS AND RECOMMENDATIONS FOR CONSIDERATION
A substantive and realistic concern with mandating independent assessments is that the personal and financial costs will outweigh perceived benefits. The potential damage caused by introducing what might prove to be an unwarranted regime begs serious consideration. Participants have spoken well of their NDIS experience and some evince pride in the scheme. The precipitate introduction of a drastic change jeopardises what could be an increasingly positive relationship with the disability community, and risks tarnishing the scheme’s reputation.
The lack of available and appropriate evidence to support mandating independent assessments is also concerning. More information on whether and how such assessments have worked, including appropriate outcome measures and any unintended consequences, from the pilots or in other jurisdictions or analogous settings would be useful.
There appears to be insufficient awareness or understanding of the NDIS independent assessments roll out amongst the disability community and stakeholders. While some information has been accessible on the NDIA website, details including their mandatory nature, whether the participant will automatically receive a copy of the assessment or whether and how appeals will ensue have either been not evident or not timely.
Recommendation 1: Conduct independent assessments on an opt‐in basis
AQA recommends that independent assessments be opt‐in rather than mandatory. This would allow positive aspects of the initiative to be realised, such as reducing financial burden and access constraints for some, while not negatively affecting or disadvantaging many. Simultaneously, it would likely mitigate the cost of substantive NDIS resource use, preserve the scheme’s reputation and avoid diminishing the wellbeing of participants.
Recommendation 2: Evaluate the outcomes of independent assessments and refine their use
If outcomes of ‘opt‐in’ independent assessments are measured and evaluated accurately, resulting in continuous improvement over time, an appropriate majority of NDIS participants will likely employ them, thereby realising the initiative’s aim without the negative ramifications of enforcement.
Recommendation 3: Increase engagement with the disability community and include people living
with disabilities in appraisals of developments likely to affect them
To ensure that important information reaches all participants, including those with limited resources or skills, a proactive approach to information dissemination would be optimal and welcomed.
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REFERENCES
Australian Government (2020): National Disability Insurance Scheme Act 2013; Canberra
Australian Broadcasting Commission (2021a): NDIS autism assessment pilot leaves young man ‘embarrassed’ (Ali Moore, 6‐1‐2021)
Australian Broadcasting Commission (2021b): NDIS participants will struggle to convey their needs to their assessor (David Maguire, 25‐3‐2021)
Carey, G., Malbon, E., Olney, S. & Reeders, D. (2018): The personalisation agenda: the case of the Australian National Disability Insurance Scheme, International Review of Sociology. DOI: 10.1080/03906701.2018.1425084
Carr, A. J. & Higginson, J. (2001) Are quality of life measures patient centred? Thebmj (322(7298) pp. 1357‐1360. DOI: 10.1136/bmj.322.7298.1357
EAC (2021): An open letter to Minister for the NDIS Robert Stuart (Dr G. Taleporos ) < https://everyaustraliancounts.com.au/opinion/an‐open‐letter‐to‐minister‐for‐the‐ndis‐stuart‐robert/ >
SpringerLink (2011). Encyclopedia of Clinical Neuropsychology. < https://link.springer.com/referenceworkentry/10.1007%2F978‐0‐387‐79948‐3_1203#:~:text=Definition, a%20number%20of%20different%20statistics >
Tenorio, M., Campos, R & Karmiloff‐Smith, A. (2014) What standardized tests ignore when assessing individuals with neurodevelopmental disorders. Estud Psicol. 2014 Jul 25; 35(2) pp. 426‐ 437. DOI: 10.1080/02109395.2014.922264
Wilson, T. R., Birks, Y. & Alexander, D. J. (2013) Pitfalls in the interpretation of standardised quality of life instruments for individual patients? A qualitative study in colorectal cancer. Qual Life Res (22) pp. 1879‐1888. DOI: 10.1007/s11136‐012‐0303‐7
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